What Do I Do Now?

I think of you all the time, my precious son.

2011-09-09T05:41:00.000-05:00

You are never far from my thoughts. I envision Our Saviour holding you in His Arms and that comforts my heart and eases the ache in my arms slightly...but still they long to hold you again. I cannot put into words the sadness I feel because you aren't here with us. This is selfish me because you are in the most perfect place ever created with Our Father God and Our Saviour. My Mommy Heart misses you so very much, David. I love you forever.

Love,
Your Mommy

My Little One

2011-08-01T11:07:00.001-05:00

I wrote this yesterday but didn't feel like I could post it. Sometimes I write things and keep them as drafts to keep them private. I realized yesterday that I was not the only one missing David. It is hurtful and frustrating to me how some of our family members have actually forgotten about David and choose to not talk about him and pretend he was never here. I cannot comprehend that type of thinking. However, there are some family members who remember David, choose to celebrate his life, and grieve his absence on his birthday right along with us. For these precious loved ones I will post my letter to David. Any parents who have experienced loss will understand why I want to write letters to my son. Please know that parents who have experienced child loss need to express their feelings in an open, honest way.

July 31, 2011

My dear, precious David,

I miss you so very much! I walk through life with a hole in my heart because you are not here with us. What comforts me is that you are resting in the arms of Our Saviour and you are healthy, happy and in the best possible place you could be. It's hard for me to comprehend that Our Saviour loves you even more than Daddy and I do; but it's true!

My arms ache to hold you again. My heart hurts because I can't sing songs to you and whisper "I love you" to you like I did when you were with us. We will be together again, my precious son. Until that day, please know how much your Mommy and Daddy love you and miss you! Your brothers and sisters talk about you and know that you are safe in the arms of God. They know that you touched many lives before you were even born and that you helped guide people to Christ, and in some cases guided people back to Christ. We are so proud of you and we love you and miss you so very much!

David, I love you to the moon and back again, my precious son!

Happy Birthday!

Love you forever,
Your Mommy
XOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOX

Second opinions are GOOD things....

2011-07-03T22:34:00.000-05:00

To all of my trisomy 18 Mommies, please know that trisomy 18 is a kind of rare accident. It is a gene mutation that has no discernable cause.....it just happens. There is absolutely NOTHING the mother or father did pre-pregnancy to cause it. There is absolutely NOTHING the mother or father did during the pregnancy to cause it (chromosomal abnormalities occur during conception when the cells divide which is LONG before a pregnancy can be confirmed by a pregnancy test).

Anyone who tells you differently does not know anything about trisomy issues. Therefore, if you hear anything contradicting what I have just told you....stand up and leave that doctor's office immediately. Find another doctor, preferably one who specializes in high-risk pregnancies.

I have a long list of trisomy 18 and 13 mommies who agree with everything I am saying and we all know exactly what you are feeling.....sadness, anxiety, grief, confusion, a fervent desire to live in denial and hope it gets better and that the doctor made a mistake. We are all here for you. When I hear of someone being grossly misinformed, I want to give you every piece of information we have learned during our experiences so that you will know the truth. This is NOT YOUR FAULT. It is a fluke that rarely happens in genetics. Unfortunately, though, it does happen. Any doctor who says otherwise probably should not be practicing medicine. That is just my opinion though.

At the very least, go to http://www.trisomy18.org/ and you can see what I am talking about. Sign up, contact fellow trisomy 18 mommies. We are here to support you.

A Twist I Can Talk About

2011-06-16T19:34:00.003-05:00

Ever since Zach was a toddler we knew he was "different".

He skipped standing and went from crawling to walking (on his toes, no less!).

When he was a year old he figured out how to bypass the child safety locks on our front and back doors, the cabinet door locks, and the baby gates.

He could solve puzzles at an alarming speed for a child his age.

However, he didn't seem interested in talking or making any kind of communication other than grunting and pointing at a cup to get something to drink or grunting and pointing at the refrigerator when he was hungry.

He had difficulty holding eye contact but was able to smile when he did hold eye contact with us.

I took him to the base pediatric clinic when he was two because I was worried about his speech delay. She did some basic checks on him and decided to have him tested for speech, occupational and physical therapies.

Playtime Children's Therapies evaluated him and the result was that he would go three days a week for speech, occupational and physical therapies for his developmental delays. I was concerned at this point that he might be autistic. Some of his behavioral tendencies had be concerned so I asked his therapists at Playtime Children's Therapies what they thought since they frequently worked with autistic children. I was assured that he wasn't autistic because he didn't behave like their autistic clients. This was such a relief to our hearts and we wrote autism off as a possibility for an explanation of Zach's behavior.

After a few months of continuous therapy we saw drastic improvement in Zach's speech, his fine motor skills and gross motor skills. He continued to go even while attending Pre-K at Tolleson Elementary. This is where we first realized he had some sensory issues.....he began beating on his ears each time the bell rang between classes and had a pretty intense meltdown during a tornado/fire drill (of course there had to be a substitute teacher there that day and she didn't know what to do to help him). Eventually, he became acclimated to his environment at school as far as the bells and tornado/fire drills are concerned but still had issues relating to his peers in a "normal" way.

Because I was a stay-at-home Mommy my kids never stayed routinely at a daycare except for weekly Sunday school at church so I never realized he had social deficits with his peers. We were hoping that with the help of an amazingly dedicated teacher at Lisa Academy (Grace had been in Mrs. Ward's class at Lisa Academy during Zach's Pre-K year at Tolleson and we knew that Mrs. Ward is an extremely dedicated and talented teacher) that he would be able to thrive during his Kindergarten year.

Just before Zach began his Kindergarten year, Zach tested out of services at Playtime Children's Therapies (meaning he met his goals and didn't need further therapy). After Zach started his Kindergarten year at Lisa Academy, his social issues began to rear their ugly head again. He had frequent meltdowns, attention issues, and his self esteem seemed to plummet. He was convinced that his teachers and classmates didn't like him. The problem is that he does not comprehend how to communicate with his peers in a normal give and take manner. His peers become bored with everything he says because it takes so long for him to express his thoughts.

Dr. Morris (our children's pediatrician) referred Zach to Dennis Developmental Center for testing for possible ADHD and other possible disorders. Shockingly we had to wait five months for an appointment!

Thankfully, Mrs. Ward and Dr. Morris helped us immensely in the meantime by putting in motion various types of testing so that we could discern exactly what is going on with Zach so we can help him in the best possible way. He was tested to see if he qualified for Special Education services. The result was that he is academically advanced for his age, he does not have any learning disabilities to speak of, but the thing that hurt my heart was that the specialist who tested him noted that he has symptoms of clinical depression!

I absolutely hate that my precious son felt this way and I didn't realize it! I have a Master's degree in Psychology and I knew that Zach felt "different" among his classmates but I didn't realize it was this severe! I guess this is why physicians and counselors are prohibited from treating family members based on medical ethics; it is nearly impossible for someone to be completely objective when trying to discern any potential problems with family members. Much too often we only see what we want to see and subconsciously try to minimize the serious problems thinking "it can't happen to my child".

Zach was also retested at Lisa Academy to see if he needed Speech Therapy. He did qualify to receive Speech Therapy services during the school week there. I don't know how he tested out of services at Playtime Children's Therapies just before school started but then qualified for services after school started. Very confusing!

In April, Zach was tested at Dennis Developmental Center for possibly having ADHD and a plethora of other possible disorders. His testing was pretty intense. It began at 8 a.m. and Laura Clark (Nurse Practitioner) and Joseph Oswalt (Speech Pathologist) kept it interesting to Zach by switching rooms, testing methods, examination tools and observing behavioral and speech patterns in different environments. Testing was finally completed 6 hours later and we received a surprising diagnosis. Zach has Autism Spectrum Disorder - Pervasive Developmental Disorder with ADHD characteristics. We had written the possibility of autism off years earlier so this was a bit shocking to us.

Everyone at Dennis Developmental Center was so helpful and encouraging but I have to admit I cannot remember everything they told me when we received the diagnosis. Admittedly, I have always admired the strength and drive of Temple Grandin and even asked for her book for my birthday last year (my mom actually got an AUTOGRAPHED copy for me for my birthday last year!!). However, I was not well-acquainted with the whole spectrum of autism so I just couldn't seem to wrap my mind around it.

I took a few days to cry (yes, I felt like crying....maybe it was because I felt grief because I knew Zach would be facing some hardships for the rest of his life because of this but also becuase I feel like I failed somehow) and to research autism spectrum disorders. I read....no, read is not the right word. I devoured everything I could get my hands on about autism, asperger's, spectrum disorders, possible treatments, possible outcomes, physiological issues associated with autism and searched hundreds of parent blogs about helpful tips on how to help children with autism to acclimate to difficult situations. I found so many hopeful resources his way! Many people who have adapted enough to be able to have "normal" lives! So thankful for the internet otherwise I would never have met these people! :0)

I can talk about this now because I have hope and I have learned that this is not a tragic diagnosis like our David had. We can help Zach to overcome his obstacles and he has the increased probability to learn to adapt and integrate socially in a healthy way because is only 6-years-old. The earlier social integration therapy is started the better the outcome.

Just wanted to put this whole situation out there. God never promised that life would be easy for Followers of Christ. He only promised that He would never leave us or forsake us no matter how many obstacles we have in life! Praise God for His Promises!!!!!

Next step is getting Zach into the Autism Treatment Center for his GI issues, sleep delay onset, check for genetic issues (like Fragile X Syndrome......30% of autistics have a co-existing genetic issue), and neurology to make sure that his staring spells are not seizures.

I think the key to overcoming hard things in life is to focus on God and take one step at a time.....sometimes these two things are enough to challenge our strength and faith.

Sincerely yours (trying to obediently take one step at a time....sometimes failing miserably; sometimes successfully staying positive while pacing myself),
Ginger P.

Be A Parent....Not An Advertisement for Your Business

2010-10-18T20:10:00.003-05:00

Ok, folks. Just venting a bit here. Please read these words and stick them in the back of your mind somewhere. This makes all the difference to children.

Tonight I went to my son's football game in Abilene, Texas. Keeping in mind that football in West Texas tends to be more important than academic excellence, I keep my mouth shut on some of my personal perspectives regarding these things especially when I am at my son's games. When I am at Drake's games, I am Drake's mom. Period. I am not a student. I am not a tutor. I am not a Sunday school teacher. I am Drake's mom watching Drake play cheering Drake on (and his team) and I am there ONLY for Drake.

While at the game a parent came dressed up in clothing fully advertising his business (not a work uniform because that would be a karate gi....this was blatant advertisement for his business). He comes each and every week dressed this way. This can be overlooked. Every week this man and his wife pesters the other parents about putting their kids in his dojo. After several people politely decline he stops doing this and everyone can go back to enjoying the game. This can be overlooked. However, when he starts passing out his advertising flyers, free admission slips, and Haunted Graveyard passes during the game, this is just too much.

Why can't he just sit in the stands and cheer on his son? Why can't he just be a dad watching his son play football? If he wants to advertise buy some space on a football schedule and then he should keep his mouth shut for the rest of the season. Using children as an advertising tool is deplorable. Using your child's sporting event as a means to push your business on people while they are trying to watch their children is just sad.

I love being Drake's mom. I love watching him play football. Having someone relentless talk about his dojo, his karate, his trophies, etc. is extremely irritating and has absolutely no place during ANY children's sporting event. Set up a booth and let people come to you if they are interested in your business. Buy a sign and stick it on the fence as long as it doesn't obstruct anyone's view of the field. Be professional and use professional advertising means rather than coming to my child's football game and irritating parents with your "promotions". In other words, BE A PARENT TO YOUR CHILD. Do not use your child as an advertising tool. How do you think your child feels when he looks at you in the stands to see if you are proud of his most recent play only to see you are passing out your business "promotions" to his teammates parents?

I swear I am just grieved by society's acceptance of some disturbing parenting trends today. From what I have seen just in the past 13 years, the field of psychology will definitely be a booming business. Perhaps my ultimate career goal lies not only working with disabled veterans but also in some form of child advocacy. Surely these parents are not truly that selfish. Perhaps they are misguided are just a bit too narcissistic to see what they are doing to their children. A little self-reflection would help everyone in this environment so very much!

Blessings to you all! :0)

Drake is a TEENAGER now....

2010-09-17T23:41:00.005-05:00

Happy Birthday to my Sonshine Drake! I can't believe that you are 13! Wow....you are a TEENAGER now! I am so thankful that God chose me to be your Mommy!

Many Blessings to you as you enter teenagedom (I just made that word up). Strive to live out 1 Timothy 4:12.

I love you to the moon and back again infinity times.....

Love,
Your Mommy :0)

Time for change....

2010-09-17T23:14:00.005-05:00

I have been thinking a lot about David lately....more than usual. David's birthday this year hit me much harder than I expected it to. Fortunately, his birthday coincided with a birthday outing of a friend from church and was a beautiful reminder of the joy and celebration of life that was so present in my mind when David was in my tummy and even after we lost him. It seems that the further away his Heaven Birthday (July 31, 2009) gets the more my heart focuses on his absence rather than the joy that he was alive. This shows me that I have slipped into a habit that I very much would like to break. I have become lax in keeping my eyes on God in the midst of injustice, medical difficulties, overwhelming obligations and strange circumstances. I have dropped the ball when it comes to striving to mirror Christ in my life. Basically, I have become a Negative Nelly (thinking about the negatives more than the positives).

God is telling me it is time for a change. A change of habit, a change of perspective, a change in choices. When certain people in my life say "I will pray for you" in a derogatory manner, I will choose to overlook their negative connotations and tones and take them at face value. If their intention is to establish a superior role or stance when communicating with me by saying godly things in an ungodly (unkind) way, then that is between God and them.....it has nothing to do with me; it has everything to do with the posture of their hearts when speaking about praying to God (if their intention is to make me feel inferior rather than truly praying lovingly about me to God, then this is completely contradictory to the nature of prayer and reflective of their true character rather than establishing a superior stance with me).

When those people strive to create division between me and my family, I will choose to look at God and beg Him to intervene and keep peace rather than using logic and reasoning with those people (it's not like they ever listened to logic and reason anyway.....it only caused my heart to be conflicted and hurt which pretty much satisfied their intention for being ugly in the first place).

When those people continue to be around children even though they should not be, instead of speaking to authority figures that have "their hands tied" because a high-dollar attorney is blocking them from basic investigative procedures, I will choose to believe that God will protect those children from being exploited, abused, harmed, and used for personal gain.

When those people have an abundance of wealth and worldly success, I will choose to remember that this is only a practice for the real life in Heaven. The world seems upside down when it comes to justice, fairness, and perception of success. I will choose to look to Heaven to measure my success on this earth.

It's all a matter of choice.....

P.S. The birthday outing my friend from church invited me to was a HOOT! About 20 of us dressed up in theme....Proms Past (I dressed up as a chick from the 80's with a glittery dress; black, big-shouldered jacket; big jewelry and big hair). Then, we all went to Murray's Dinner Theater and watched the production of Annie (excellent actress, by the way). Watching these beautiful women dress up from the 50's, 60's, 80's and 90's (I don't remember anyone being brave enough to dress up from the 70's...ha ha) to celebrate life and friendship was very humbling to me. I thank God for putting these ladies in my life! If you do not have a group of friends like this, drop what you are doing, and go make intentional friendships with ladies who love life and strive to seek the positive side of every situaton! Go! Now! Do not come back to the computer until you have succeeded in your mission! :0)

Chloe is here!

2010-06-13T19:58:00.002-05:00

So Blessed.....

She had a very dramatic entrance to this world. She was born at 4:14 a.m. on May 25th and scared us all. She had an initial APGAR of 4 because she did not breathe on her own at birth, she had poor tone and color, her blood sugar levels were very low and she could not regulate her body temperature. She went to the NICU at UAMS but was released to go home 24 hours later.

About 17 hours later, we were at Arkansas Children's Hospital because she began having seizure-like activity and would be lethargic afterwards. She stayed there from May 26th until May 30th when we learned that her jerking, spasmodic movements were due to bleeding on her brain from birth trauma. She has been doing very well at home and can't seem to sleep without being held (Mommy and Daddy oblige her often in this...ha ha).

Tomorrow, she has to have a CT to make sure the bleed is resolving itself. We are hopeful that everything is Ok because her seizure-like activity has almost completely gone away now.

I find myself looking at her in the wee hours of the morning thinking about her guardian-angel brother, David. I think because of our losing him, we were more careful with this pregnancy and that extra attention possibly saved Chloe from having an even more emergent birth with possibly worse outcome than it did. There is never a day that goes by without my mind and my heart thinking about David. Now, though, instead of grieving the loss of David, I find myself thankful that God's plan included showing me how David has and will always have a place in our lives even when we don't see it right away.

Because David was in our lives, we were more careful in this pregnancy and my doctor was inclined to err on the side of caution and admit me on May 24th when my blood pressure was 166/84 and ultimately Chloe was born a little bit early. I wonder if we had waited until her scheduled c-section or until her due date if Chloe's birth would have been more emergent than it was.

David is missed...so very missed. But he is still very much in our lives. He had a very big influence on his baby sister's life even from the very moment we learned we were pregnant again after losing David. So in my mind, David is Chloe's guardian-angel big brother.

For these precious babies, we are so very Blessed.....

God's Blessings and the Odd Behavior of People

2010-04-26T21:17:00.003-05:00

This past Tuesday, our little Chloe scared us quite a bit. Here is a short run-down of what the situation is:

I am a high-risk pregnancy with APLS and gestational diabetes. This is my 7th pregnancy; I have had two miscarriages and one intrauterine fetal demise due to trisomy 18 (David born to Heaven last July 31st).

My APLS means that my blood clots too much and can choke off bloodflow and vital nutrients to the baby, so I have to take one 81 mg aspirin per day as well as take 1 cc Heparin injections twice daily in my tummy (I taught Jeff how to give me my shots and he does a WONDERFUL job!).

So far this pregnancy has been good and Chloe is HUGE (she was almost 5 lbs. at 31 weeks gestation)! However, last Tuesday at my regular OB appt. Dr. McKelvey could not hear Chloe's heartbeat on the doppler consistently for 10 seconds nor was Chloe moving very much. She immediately put me on a machine that was able to read Chloe's heartbeats and see if the beats were regular and didn't dip (apparently a dip means that Chloe is not getting something she needs...bloodflow, oxygen, nourishment). She thinks my aspirin/Heparin regimen may not be working; APLS apparently forms tiny clots in placenta vessels, veins and tissue and can cause life-threatening problems for Chloe. Dr. M told us that we needed a back-up plan so that we can be prepared in case she has to take Chloe early. If the dips on the machine turn into "u" shapes she will have to take Chloe no matter how far along I am or else Chloe might not survive in my tummy.

God's Blessings:

Dr. McKelvey is a very godly and knowledgeable woman. She knows how difficult the beginning of this pregnancy was especially since it was so soon after losing David. She did everything to keep me calm when my OB appt went differently than expected. I can't praise her enough! Anyone who needs a high-risk OB doctor should look her up! She is definitely a Blessing to us! She has a logical plan to monitor Chloe closely: weekly visits for the remainder of my pregnancy while running a strip on Chloe heartbeats at each visit to make sure there are no "u" shaped dips showing on the strip. If there are "u" shaped dips, she will have to take Choe early to give her optimal chances of survival. Since we are 33 weeks in gestation, Chloe has a good chance of survival as opposed to staying in my tummy and not getting adequate bloodflow, oxygen or nourishment.

More Blessings from God:

Since Jeff's parents and my mom live far away from us, we didn't have a back-up plan in place in case Chloe has to be taken early. We had no idea what we would do with Grace and Zach until one of our families could get here. It is an 8 hour drive, at least, from my mother's house to our home and at least a 6 hour drive from Jeff's parents home to our home.

We checked with some babysitters on base but there are no guarantees that we would be able to drop Grace and Zach off since we cannot give them an exact date or even an estimated date of delivery.

We turned to our church family and asked for anyone who would be willing to take care of our kids in case Chloe had to be taken early. I cannot express how wonderful it feels to know that so many people in our church family felt led to offer help to us if Chloe has to be taken early! I literally cried tears of joy when I got the email back from Barbara with Caring Hands Ministry with the list of names of people who have volunteered to help us! Jeff is SO RELIEVED to not have to worry about this, too. He was thinking he might have to stay with Grace and Zach while I drive myself to UAMS for an emergency C-section for Chloe. He says he would be a basket case knowing he should be with me when Chloe is born and to help me especially in an emergency situation like that.

Do you know what it feels like when God gives you a hug? I do. I love knowing that God is working through these wonderful, loving people to hug us and help us with a back-up plan just in case we need it. :0)

Odd Behavior of People:

After today, the odd behavior of people doesn't bother as much as it did yesterday or even last week. I just wanted people to know the difference between a person claiming to be a Christian and a person who truly is a Christian.

Claims to be a Christian: Goes to church on Sunday but Monday through Saturday behaves in ways that shows they are influenced by something other than God. Making fun of a woman who is a high-risk pregnancy, making fun of the fact that we buried our son in August, committing slander and libel, using blackmail and extortion to get us to stop the investigation, victimizing helpless/vulnerable people, and hiding behind an attorney when he should be opening his home for a full investigation (if he is truly innocent, what does he have to hide?), and using God as an advertising tool are all things that a true Christian would not do.

Truly Christian: Recognizes personal failures and truly tries to rectify wrongs committed, strives to keep in line with God's Word and His Will even when it is hard or is considered socially "odd" to do so, respecting life no matter how God created it, giving respect to those who have been victimized by people behaving under negative influences (definitely not making fun of victims!), and striving to be a light in the lives of others while giving God the credit (not praising oneself for being self-less). Basically, true Christians strive to be humble. We may not always succeed, but we are to continuously try.

I know I can't judge those claiming to be Christian and this is very difficult especially in the situation my family has been put in. However, it is very important to me for people to know the difference between someone truly trying to seek God and someone using His Name to hide bad behaviors and to make money (this is based on outward behavior because there is no way I could possibly know what this person's heart is truly like). My heart feels grieved I hear non-believers perceive Christians, for the most part, to be hypocrites.

This is perhaps my very favorite poem in the entire world. It was published in 1988 and will be relevant for generations to come.

When I Say "I Am A Christian"
by Carol Wimmer

When I say, "I am a Christian," I'm not shouting, "I've been saved!"
I'm whispering, "I get lost! That's why I chose this way"

When I say, "I am a Christian," I don't speak with human pride
I'm confessing that I stumble-needing God to be my guide

When I say, "I am a Christian," I'm not trying to be strong
I'm professing that I'm weak and pray for strength to carry on

When I say, "I am a Christian," I'm not bragging of success
I'm admitting that I've failed and cannot ever pay the debt

When I say, "I am a Christian," I don't think I know it all
I submit to my confusion asking humbly to be taught

When I say, "I am a Christian," I'm not claiming to be perfect
My flaws are far too visible but God believes I'm worth it

When I say, "I am a Christian," I still feel the sting of pain
I have my share of heartache which is why I seek His name

When I say, "I am a Christian," I do not wish to judge
I have no authority--I only know I'm loved

Such a powerful poem! Humility, self-reflection, striving to continually seek God, authentic repentence, and belief in God's Promises are concepts subtly spoken of thoughout the whole poem.

I pray that non-believers can discern the difference between people claiming to be Christian and those truly following Christ. Perhaps more people will want to come to know Jesus once they know the difference?

Blessings to you all!

For now...

2010-02-25T12:00:00.003-06:00

I hate living this way. I have been struggling with anger in my heart and I absolutely hate living this way. I find myself going to God many, many times a day and asking Him to help me take the anger way so that I can feel peace. God placed something on my heart and I will do my best to explain it here:

The anger I have over lies, manipulation and deception is interfering with my being able to feel God's presence in my life. God has promised that He will never leave any of us or forsake us; however, there are times when I cannot feel Him near me. That is more a reflection of the posture of my heart rather than on God's presence. I know that He is near me but the overwhelming anger and feelings of powerlessness to right any of the wrongs done to my family are becoming detrimental to my relationship with my Father God and I just can't feel Him near me at times.

So, I am forgiving my enemies as best I can. I am having to remind myself that I have forgiven them every time I feel the anger rising up in my heart. By forgiving them, I am giving their deeds over to God for Him mete out justice fairly and evenly because only He knows the hearts of all of His children (this includes my enemies). This does not mean that eventually we will not hold these people accountable; it simply means that I am taking one step at a time, giving ultimate control to God (as if I ever truly had control of any of this anyway) to mete out justice as He sees fit and eventually Jeff and I will take steps to make them accountable for their words and actions.

Nurturing the anger in myheart is only putting Chloe at risk (I have had 4 big Braxton-Hicks that literally took my breath away and we are not even close to Chloe's due date yet). Also, nurturing that anger causes me to speak in ways that are not typically me (I have been cussing recently and that is totally not me).

So, either I could hold on to that anger and let it eat me up inside and cause more complications with my pregnancy with Chloe and ultimately damage the relationship that I have with my Father God, or I can relinquish whatever perceived amount of control I thought I had over this situation to Him, let Him deal with those injustices, nurture the relationship I have with my Father God, and live in peace which would help me to truly exhibit the characteristics of Christianity to my children, my husband and those around us who know of what our family is going through.

After putting everything into proper perspective, the choice is easy. The actually relinquinshing of control to God is not so easy but I will go to God every time I begin to feel the anger and helplessness boiling up inside me.

The Bible says that we must obey the laws of the land. Jeff and I will still take steps to hold those accountable. For now, though, I am discipining myself to give the anger to God, let Him mete out justice, and focus on our family's future. We are taking baby steps.....for now. :0)

Wowsa!

2010-02-19T16:54:00.002-06:00

I find myself sitting in front of the computer completely overwhelmed with the knowledge I recently gleaned regarding the actions (or inaction) of the state agency that I flew to see from Arkansas. I am utterly amazed at the lack of any kind of adequate investigation. In fact, that state agency has not provided Arkansas agencies with all records regarding the person in question. In fact, the information in the records directly contradicts with findings from other agencies. How could a state agency fail so badly? Is there not a system of checks and balances in place for that state agency? Is there not some type of auditing system in place to ensure accuracy, security, and storage of information? How could a state agency "lose" records? How could a state agency's records be so blatantly different from the records found at 3 other facilities? Did they even attempt to do an investigation at all?

Ok, folks. Time to go to the next step. If our family is getting stonewalled I imagine other families are getting the same run-around as well. Either this agency thinks we will eventually go away or they don't care at all. Won't they be surprised when they have to answer for their failures?

Prayer requests:
1. That God's Mighty Hand reveals truth and justice in its entirety in this whole situation.
2. Praise God that He has made help possible for my children and for Jeff and me while we are going through this.
3. Praise God that He has never left our family at any time and that He promises never to leave us in the future!
4. That God ties the tongues of those who will try to lie about inaccuracies and missing information.
5. That God brings everyone in this situation to accountability for their actions and their words.
6. That God will give me peace, a sound mind devoid of emotion (this is a pretty tall order for a pregnant Mommy whose children have been hurt unnecessarily) but full of logic and the ability of deduction to point out the inaccuracies and missing information.
7. That God will bring Jeff and me even closer together through all of this and that we are able to keep our eyes on Him through the whole thing.

Blessings my friends!
Ginger

Ice

2010-02-11T16:15:00.002-06:00

Well, I have just witnessed the type of personality that turns people away from Christianity. These two people in particular attend church regularly, say prayers in their business and brag about their Christianity. HOWEVER, their actions, words, deceitful behavior, manipulations speaks volumes for the true posture of their hearts. They seem to think they can say the cruelest, venom-filled things to our family as long as they finish their tirade with "God bless you." These people are the reason my children have been hurt. They hide behind a $30,000 attorney and dodge Child Protective Services (not in Arkansas....again Arkansas agencies have gone above and beyond to help my children get the help and the justice they deserve) and apparently, Child Protective Services in that state are afraid of people who claim to be Christians and have a high-powered attorney. Doesn't the fact that they have an attorney in the first place show that they have something to hide? Doesn't the fact that they have been talking to CPS in that state through an attorney show that there is something in their lives that they are ashamed of? If they are truly innocent, they would welcome an investigation into their lives. If there is nothing there then they have nothing to worry about. When I did a search on the internet of their business I saw 2 reviews that support my perception that their actions are in direct contrast to their behavior (there were only 4 reviews total). Isn't that something to be concerned about?

Just venting. Very frustrated. Highly emotional. Floored that people like this can behave in such a way and non-believers then write off all other Christians as hypocrites. Angry that people like this are using Christianity as an advertising tool and as a veil to shield them from their unlawful, unethical and immoral actions.

I can say with a reasonable amount of certainty that these people have as much ice in their hearts as the Arkansas roads have had this past week. We are on the 4th snow day this week for Pulaski County School District. This might hinder my trip to seek answers. Jeff is stuck at Pope AFB right now and I have the kids with me. I am not taking my kids with me on this trip, so I might have to put it off for a week or two. My children should not be privy to the information that I am seeking to get in my quest to find the truth about these "Christian" people.

Please pray that God gives me eyes to discern truth from lies, genuine Christ-centered hearts from hypocrites, and truth-seekers/tellers from those who are only trying to cover their mistakes.

Blessings,
Ginger

On A Mission...

2010-02-08T08:44:00.003-06:00

Weather permitting, on Thursday I am going to the office of the state agency (not Arkansas) that has been "circling their wagons" to protect themselves from allowing their past failures to be exposed. Because of their failures our children have been hurt. It is absolutely unbelievable to me that they are STILL not following their own protocol and choosing to close out cases without doing an adequate investigation! The U.S. Military and all Arkansas agencies are taking this very seriously and are doing wonderful jobs helping us to get our children the help they need and no one can believe how lax this other agency is. This is a completely unbelievable situation! If I do not get answers from that state agency on Friday or Monday, the next step is going directly to the commissioner's office and showing each and every time the agency failed to follow its own protocol. If we still do not get cooperation from that agency, then we will only have one other step and it is certainly not one that I want to do. I pray that they don't force my hand but I refuse to allow any more children to be hurt because that agency is lazy, complacent and relying on the fact that we don't have the money to pursue them in a court of law.

I am asking everyone to pray that God's Mighty Power exposes the truth and forces the agency to take steps to keep children from being hurt anymore. Please pray that I can separate my emotions from this situation long enough so that I can speak logically and rationally to these people to show them exactly how their past reports did not follow their protocol and their lack of action allowed and even encouraged this person to perpetuate hurtful cycles onto other children. I am begging God to expose all of this so that no other children can be hurt like this again.

Blessings to all my friends and prayer buddies!
Ginger

Jeff is HOME!!!! :0)

2010-02-02T19:51:00.002-06:00

Jeff finally got home yesterday morning after being stuck in Virginia for several days due to heavy snows and ice. Delta cancelled all flights outgoing on Friday and Saturday and there were so many people they had to reschedule for flights he didn't get a flight at all on Sunday. He left at about 4 a.m. on Monday morning and landed at about 10 a.m. Let me just say....WHEW!!!! I am SO glad he is home now! I kind of get used to him being around the house. He has the kind of personality that can grow on a person....like a fungus. :0) Ha ha!

We went to Dr. McKelvey's office today for a routine OB check on Chloe. Everything is going well and her heartbeat is in the 130's. When Dr. McKelvey asked me how I am doing I couldn't help but start to cry. Just overwhelmed with some things. I do love having her as my doctor.

Something weird I realized today is that I haven't purchased anything for Chloe yet. Also, when Dr. McKelvey put the doppler on my tummy to hear Chloe's heartbeat, I caught myself holding my breath and praying that we would hear it even though I had just felt her move a few moments before. Isn't it strange how our minds have automatic knee-jerk reactions to try to stave off the confirmation of our worst fears? I think I haven't bought anything for Chloe yet because when I was pregnant with David and we found out about his trisomy 18 diagnosis, I was afraid to allow myself simple joys like planning for my baby's future.

Tomorrow, I am purposely going out to buy something special for Chloe. It is time for me to break my old mindset and start making positive plans for Chloe. This doesn't mean that I ever completely stop grieving for David. Even though I know he is in a much better place right now, I still miss him, the delicacy of his little body, the Blessing of his life inside of me. To help celebrate one of the lessons David taught me, I am going out tomorrow and buy something special for Chloe to show how much I appreciate life and the Blessings God has given us right now, this very minute.

On the other front, I have to pace myself and take only one step at a time. Justice will come as long as I remain focused and remove as much emotion from the situation as humanly possible (as difficult as this concept may seem for Mommies wanting justice for her children I have to try to do this or else my emotion will destroy all sense of logic and reason when I seek answers and look for the truth).

Hold your loved ones extra tight tonight and thank the Lord that He let you have these people in your life.

Blessings,
Ginger

Status so far.....

2010-01-29T10:53:00.004-06:00

I know most of you have sent me emails wondering what the investigation is about. I don't want to post it for all to see because it just hurts my heart so much. Then I get angry. Then I get flat-out spitting mad when I think of how one particular agency failed to protect children so utterly miserably. Suffice it to say that because of the laziness and lack of following protocol, one particular state agency (it is not an Arkansas agency...it is another state that is woefully lacking in workers who are interested in doing the jobs they are paid to do) has made furthering pain exponentially to other children possible. Honestly, I am just venting and want to get this stuff off my chest but also want people to know that prayers for my family are most appreciated and much needed right now.

I absolutely hate this situation. This is possibly worse than losing David only because I know that David never experienced pain in this world. I know that David is in Heaven's playground with Jesus and his other friends right now at this very minute. This situation makes a parent feel impotent to take bad things out of her children's lives especially when the state agency has yet to return calls I placed on Monday and that they seem to not be concerned in the slightest bit about the children they failed there. In fact, they seem to be more interested in doing whatever necessary to cover the mistakes they have made in the past to allow things to get to this point.

On a positive note, school is closed today in Arkansas because of icy roads so Grace, Zach and I are having computer day at home. We have been playing Caillou and Curious George games on http://www.pbskids.org/ and I amazed at how well Grace is doing with her addition! Zach is excelling in puzzle games and I am enjoying the fact that they are encouraging one another instead of antagonizing each other (as my sister and I used to do to each other). :0)

Jeff is stuck in Virginia because his flight was cancelled and I have a suspicion that he won't be able to leave there tomorrow either. At least he is in a hotel room with a nice, cozy bed (or so he brags to me....ha ha). I am thankful he is safe and that we are able to talk to one another which is very different than when he is deployed to the desert.

I know there is a lot of grief and strife in the world right now. I know that families are struggling physically, financially, emotionally and spiritually for many different reasons. If at all possible, please pray for my family. This is a pretty big hurdle and we need strength, wisdom, encouragement, and Might Power behind us when we try to hold individuals accountable for failing to follow protocol in protecting children. If they had only done their jobs, our children would never have been affected like this.

Blessings,
Ginger

The Good, Bad and The Ugly

2010-01-25T20:17:00.003-06:00

Such a mixture of emotions have been swirling around our home lately. I haven't even looked at my emails, Facebook or my blog....I guess my mind can only handle so much before I have to stop everything and turn to God (where I should turn when things first start to go awry).

The Good:

We passed some milestones with Chloe and my heart feels both a mixture of pleasure and sadness. The AFP results came back normal which means that Chloe shows no signs of having neural tube defects. I am officially 21 weeks 4 days along in my pregnancy which means that we passed the point at which we discovered that David had no heartbeat. This pregnancy is going along perfectly as long as I keep monitoring my blood sugars, keep doing my Heparin injections twice daily, and try to keep my stress/blood pressure/AVNRT down.

Incidentally, I taught Jeff how to give me my shots in my tummy and he is doing GREAT! When I give myself injections I end up very badly bruised and my tummy tends to be incredibly sensitive to the slightest touch, but Jeff is very gentle with the injections....he is going to be a wonderful veterinarian when he retires from the Air Force and graduates from school!!

Chloe moves a lot at night and I am loving every minute of it! I think she had the hiccups last night and I was so elated to share that with her I thought for a minute I might start crying. :0)
I am so thankful to God that our little girl is healthy!

The Bad-That-Turned-Into-A-Good:

I went to the Arkansas Health Dept on Friday morning to get David's birth/death certificate for our insurance company. I didn't realize that just reading the word "stillborn" would make me cry. But it sure did. Reading the information on David's birth/death certificate brought moments of pain to my mind and heart but it also brought about memories of how God guided people into my life and how He orchestrated everything to its conclusion. I was reminded of the wonderful women I met because of David's trisomy 18 and how those women are still my friends. They give me a strange freedom to express everything in my heart and in my head especially now when our family is dealing with a great big "UGLY" (can be read about later in this post under the appropriately titled section "The Ugly"). I will be forever grateful to God for allowing me to meet these amazing women whom I am Blessed to have in my life!

The Ugly:

Our children are going through an incredibly difficult time right now. I am amazed at how one particular state agency (NOT Arkansas.....the agencies in Arkansas have been unbelievably helpful to us in getting our children the help and justice they deserve and need) seems to close out investigation cases without actually investigating anything. In fact, that particular state agency is operating this case completely contrary to what their website states is their normal operating instructions! Do they not realize that what they do or don't do directly affects the well-being of children? Do they not realize that their very jobs are to PROTECT children? Do they not care that children are being lost in the system and offenders are hiding behind high-dollar attorneys only to perpetuate the problem and cause more hurt and pain to children and society in general? If I had a million dollars I would bring all individuals in this situation who failed children to be held accountable for their inaction.

Jeff and I are working diligently to find those in authority to take necessary steps to MAKE this particular agency (again this agency is not in Arkansas) follow its own protocol. We don't have the money to go through normal legal means nor are we in the same vicinity as this state agency so speaking face-to-face with people involved there is difficult. Since I am a high-risk pregnancy and Jeff is trying to save his leave time for when Chloe is born, getting down there is going to be a bit tricky but I am going down there in February to knock on doors and try to get people to give me some answers about this investigation.

Prayer requests:

1. That my children continue get the help and justice they deserve and need.
2. That someone somewhere in a position of authority will see the injustice that has been going on and help us to hold those responsible accountable for their failure to protect children.
3. That I remember that God is a God of justice and that He is the defender of all children; that God's wrath is not to be forgotten in this situation but that I still need to exhaust all resources available to me to force individuals to follow their own protocol.
4. That I remember nothing escapes God's eyes and that I should not sin in my anger; rather, give it to God and continue to think, feel, speak and act in ways that are pleasing to Him.
5. That I not allow the stress and pain associated with this Ugly Situation to affect Chloe, Drake, Grace, Zach or Jeff's overall best interests.
6. That I remember that David is watching his mommy from Heaven and I want him to be proud of me.

What I am clinging to today:

"...the wrath of God is revealed from heaven against all ungodliness and unrighteousness of men who suppress the truth..." Romans 1:18

"...the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus. Finally, brethren, whatever is true, whatever is honorable, whatever is right, whatever is pure, whatever is lovely, whatever is of good repute, if there is any excellence and if anything worthy of praise, dwell on these things. The things you have learned and received and heard and seen in me, practice these things, and the God of peace will be with you." Philippians 4:7-9

"The eyes of the LORD are in every place, watching the evil and the good." Proverbs 15:3

I miss my David

2009-12-06T09:12:00.002-06:00

Today is such a strange day. I am so grateful to have Chloe in my tummy and know that she does not have the challenges that David faced, yet I miss my baby boy very much. I am so sad that today is here and he is not. Today was David's due date. People say I need to concentrate on the blessings I do have and not on what I do not have. I do not want people to think I am ungrateful for my babies. I am thankful every day for them! I just miss my David. Things did not turn out as I had hoped they would for David and each day I receive things in the mail for him (diaper coupons, formula coupons, memorial services for UAMS, Griffin-Leggett funeral home, and Children's hospital). I think these are wonderful services and can be helpful to people but they just make me so incredibly sad right now. I am sad because my baby boy is not where I can hold him and I can't even visit his grave because he is back in Texas where my ancestors are buried. Just a sad cloud overshadowing today. I have been smothering my kids in hugs and kisses this morning. But still I miss David. Please do not think I am ungrateful for the precious angels God has given to me. I am very grateful. I just know that each of my babies are unique and precious and anytime one of them is not with me I miss them. And so it is with David, too. I miss him very much and I pray that others will understand how I feel and not think that I am being ungrateful.

It's Gonna Be a WONDERFUL Thanksgiving this year!!!

2009-11-25T09:07:00.003-06:00

We got a call from LaJuana at UAMS yesterday afternoon that the results of the FISH test (additional test to the CVS procedure) were in and that they did not see any chromosomal abnormalities! WOO HOO!!!! Also, the baby is a girl and we will name her Chloe Anne. :0)

SUCH good news!! I was so tired yesterday that I wanted to go to sleep at 6:30 last night but of course that just didn't happen. In fact, Jeff and I didn't get into bed until after midnight, then Zach woke up in the middle of the night after having a bad dream (Bless his little heart!). So tired today but the good news from yesterday is keeping me going with energy I didn't think I had at 5:30 this morning. :0)

Praise God for His Blessings!! So thankful for this year of growth, love and loss and thankful for Blessings in abundance!!

Happy Thanksgiving to everyone!!

Love you all!!

Ginger P. :0)

Good news and bad news...

2009-11-20T05:03:00.002-06:00

Good news: I am 11 weeks pregnant and am feeling good, just very tired. We saw the baby on Tuesday in a sonogram and the nuchal translucency test looked good so we were very encouraged by that! To do the nuchal translucency test, the sonographer (our Amanda....I do love her so!) said that the baby needed to wake up and move around so the measurement could be taken. Apparently, Baby Peanut didn't like being wakened so she mooned us during the sonogram. Ha ha! She must get that from her Daddy's side of the family. (hee hee)

Bad news: Although the sonogram encouraged us and gave me SUCH a wonderful feeling of relief, it was short-lived. The next day we got a call from Debbie, our nurse, who told us that my bloodwork came back with increased risk for trisomy. I remember I kept saying "...but the nuchal fold looked so good...". What a surreal moment. I know that this is not as bad as David's case was because his nuchal fold was huge in addition to the results from the bloodwork. I hoping and praying for the best case scenario which is that this is a false positive.....I pray that worst case scenario is that the baby has Down's and not something worse. I know that it is EXTREMELY rare for one family to have two children with severe chromosomal abnormalities, so this also gives me encouragement. I can't help but feel nervous and scared because this is such a bad case of dejavu. I guess that is why I am awake at 5 a.m. putting all my thoughts and feelings in my blog.

Blessings: Jeff and I have had a pretty rough patch lately. Lots of things I never thought we would face and we are trying to work things out. It isn't easy but we are trying. Recently, someone told me about the statistic of divorce among couples who experience the loss of a child. I looked it up and was stunned! While what Jeff and I are going through is not ideal, it is not abnormal among couples who have experienced what we have. This gives me hope in that our troubles lately are not because of cracks in our marital foundation, but maybe it all stems from emotions and communication issues.

Another Blessing is the team of people who are caring for me during this pregnancy (they are the same wonderful people who cared for me during my pregnancy with David). Dr. Lowery even rescheduled appts so that he could make a special trip to do the CVS procedure tomorrow (well, since it is after 5 a.m. maybe it is now "today"). The level of commitment these people have to their patients astounds me! I absolutely love how dedicated they are!

More Blessings come from the elders at our church, Cornerstone Bible Fellowship. They are helping Jeff and I through this rough patch and they have never wavered in supporting us through all of the difficulties we have faced.

Even more Blessings come from our friends and family members who leave loving messages on Facebook and in our email. I am a bit too overwhelmed to respond to them all right now but I will respond to them all after the CVS procedure is done and I have some time to myself afterwards.

The CVS procedure is scheduled from 12:00 p.m. to 2:00 p.m. on Friday, November 20th. If I am still in the procedure at 2 p.m., Jeff will have to leave me there and go pick up the kids from their schools in Sherwood and in Jacksonville and then come back to Little Rock to pick me up. I am just thankful that Jeff was able to get off work for the afternoon.

Weird stuff: My poor Mom's condo caught on fire Wednesday night. When she got home from work, there were people standing around outside the building, firetrucks were there, and some women she had never seen before was holding her dog. The fire started in the unit next to hers and my mom's condo has quite a bit of damage to it but it is not as bad as it could have been. My precious Mom is taking all of this with a great sense of humor and I admire her so much for that! I hope to be like that some day. :0)

Here is the video link about the fire and still photos of the blaze and aftermath (my mom's house is the one with the broken windows, curtain hanging out, and garage door hanging crooked....the fire department had to break into her house and go into the attic to try to keep the blaze from spreading):

http://bigcountryhomepage.com/content/fulltext/?cid=195232

There has been so many things lately that have hit our family. I feel as if there is a spiritual war going on and my family is smack in the middle of it. I pray that God give us the peace we had throughout our time with David and that He shows us what He wants us to do in these situations.

Most of all, I pray for the best case scenario for out Little Peanut!

The strangest thing...

2009-09-18T22:58:00.003-05:00

I don't understand the human mind. Seeing that I am going to finish my final psychology class on Monday night and get my Bachelor's degree in psychology, this is not a great thing to admit. Sure there are some theories that make sense to me but honestly, I don't understand how it truly works; more specifically, I don't understand how my mind words.

When I don't get enough sleep for long periods of time, my thoughts are scattered, I am more emotional than usual, and I feel so tired even when I am just sitting. However, there must be a secret time clock in my head that I had not been aware of for the previous thirty-something years of my life. My mind instantly knows how long it has been since David was born. Seven weeks ago tonight, he was born. It was the first and last time I will ever hold him in my arms. Lately, Saturday through Thursday are "normal", but, Fridays are unpredictable for me.

Earlier today, Jeff and I took Zach to get the flu mist (Grace had hers yesterday) and of course there are lots of babies in the pediatrician's office. Jeff looked at me as if he was worried that the babies might make me sad, but I did Ok. I looked at those precious babies, I told the parents how beautiful their babies are, and thanked God for how healthy they looked. But now that everyone is asleep, the house is quiet and I am up by myself, I feel so sad. I know we are Blessed to have Drake, Grace and Zach. I know we are Blessed to have had David at all and to have had him change our lives so much. I know we are Blessed to have a church family that checks on us, loves us and prays for us. But I still feel sad and want to cry. It doesn't happen this way all the time anymore. Usually I can smile when I think of David. But Fridays are just different and I guess the late night hours are the worst.

I wish I could shut off the secret time clock in my head and not subconsciously keep track of the time since David was born. I wish I would not feel sad. I wish I could just be happy that my son is in Heaven with Our Lord and Savior and not miss him so much. I wish I could be a better child of God and show everyone that my faith in Him takes away my worldly worries and troubles. I know that Christians are never told that our lives will be easy when we have faith in Him. I just wish I felt like I were doing a better job of showing my faith to others. I wish I could show everyone that I am disciplined enough to keep my eyes on God through all things. But the truth is, I am fallible. I have weak moments. I have trouble seeing God through my sadness sometimes. I have trouble being obedient in prayer when I feel alone and in pain in the wee hours of sleepless nights. All I can do is to retrain myself in these things again. It will take time. I just have to be patient with myself and put reminders of my favorite Scriptures up all over the place.

For now, this is Ok with me. I just hope that if someone comes over to our house and sees an index card taped on the wall across from our potty that they don't ask me why it's there. I just hope they read it, ingest it (the Scripture not the index card), and finish their business while ignoring the water stains on the ceiling from the rains.

David's Headstone Came In Yesterday....

2009-09-13T08:37:00.003-05:00

We sure miss our little man! Sleep well, my angel boy. We will have many adventures together when we see each other again in Heaven. I love you forever.

Praise God for His Blessings!

2009-09-13T08:19:00.002-05:00

I am feeling SO GOOD today! Last night was the first night in months that I was able to get a good, solid, deep sleep from 11 p.m. all the way to 7:30 a.m. without any nightmares and without waking up at all! PRAISE GOD!!

Yesterday, my mom went to see David at the cemetery and she saw that his beautiful headstone had arrived. She sent a picture of it to me. Elmwood did a wonderful job on his little headstone. There isn't a day that goes by that I don't think of David at least a hundred times a day but now it doesn't sting as badly as it had before. I still have huge heartaches for him but now I can think of him and smile without as many tears as I had before. I don't know if the tears will ever go away completely. That's Ok with me. Tears are precious to Our Lord and they are signs that I recognize the Blessings He has given to me and the precious little Blessing that is awaiting me in Heaven, my David.

My prayer today is that everyone sees the glory of God everwhere around them and that everyone sees His Hand purposefully creating beauty in them from the inside. I pray for an abundance of Blessings to everyone especially the brokenhearted, lonely, discouraged and anxious.

"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God."

Phillippians 4:6

Postpartum Stuff

2009-09-03T02:36:00.003-05:00

Well, we went to my postpartum visit with Dr. McKelvey yesterday morning. I thank God she is my doctor! She understood how difficult it was to be in the same place where she had to give me devastating news so many times this past summer. She is such an encouraging, lovely person. She definitely is a blessing to me! :0)

Jeff went with me to my appointment and we were able to talk to Noelle, the genetic counselor. We know that trisomy 18 is just a fluke but we want to know more about trisomies and SMA recessive genes before we try again....if I can try again. Dr. McKelvey suggested that I should be able to get pregnant again even though in February of this year Dr. Taylor told me I was going through early menopause (at the ripe old age of 38....I couldn't believe it).

Make no mistake....if we do get pregnant again it is not an effort to replace David. One child can never replace another. I noticed in Dr. McKelvey's office that there was a poster of fetal development on the wall. Jeff and I studied it for quite some time. I was saddened that David didn't fit the "normal" month 5 fetal development; rather he fit more into the month 4 fetal development category. Dr. McKelvey tells me that T18 babies just don't develop at the same rate as normal babies do.

When David was born we knew that he had already passed, yet the delivery room was so saturated with God's presence and with the power of David that we were able to experience peace that surpasses all understanding. We cried tears of sadness, joy, love, and grief but we felt peace.

On a side note, I think our culture has lost a vital aspect of healing by eliminating the "wailing wall". How cleansing would it be to be able to go to a place and just wail? A place where wailing is accepted and expected? A place where tears and cries of grief are Ok? I think once we finish our kitchen (if it EVER gets finished), I am going to dedicate our home as a modern-day wailing wall where any and everyone who needs a good, cleansing wail is welcome.

At first, I didn't want to post any pictures of David. They just seemed too personal. But I desperately wanted people to see how perfect God's gift to us was. David's little body in no way reflected how magnificent and huge his spirit was. I have posted some of the beautiful pictures that Jill Meyer, our NILMDTS photographer took of our David on his birthday, July 31, 2009.

I beg you all to look at David through the eyes of God and through the eyes of a Mommy and Daddy. Each time I see these pictures, David's perfection renders me speechless. :0)

Blessings!

2009-09-03T02:29:00.002-05:00

Jeff and I praying over David...thankful to God He gave David to us if only for a little while.

2009-09-03T02:29:00.001-05:00

Precious angel boy!

2009-09-03T02:24:00.001-05:00

His feet were so perfect! I miss his little baby toes! Such precious, perfect little toes!

This is my very favorite picture because of David's little feet, his Daddy's strong fingers and the beautiful work Jilly Meyer, our NILMDTS photographer, did on this. We were Blessed abundantly with everyone God put in our lives! :0)

2009-09-03T02:22:00.000-05:00

Mommy and Daddy loving on his delicate little body. :0)
He definitely had his Grandpa's nose! :0)

2009-09-03T02:21:00.000-05:00

Mommy and his Gigi (my mom) loving on David.

2009-09-03T02:19:00.000-05:00

Daddy, Grandma (Jeff's mom), Gigi (my mom) and Mommy loving on David.

2009-09-03T02:15:00.002-05:00

Mommy having private time with her little boy. :0)

I will never forget how perfect he was. Although he had a spirit that completely engulfed the delivery room and everyone in it, his little body just wasn't strong enough to stay with us.

I will always be grateful to God for flooding our hearts, the delivery room and everyone in it with peace that surpasses all understanding. I am so thankful that Our Father God is loving and faithful! :0)

2009-09-03T02:12:00.002-05:00

Mommy and Daddy loving on David.

The lamb blanket was put in David's coffin with him but we kept the "Child of God" blanket. It is in my cedar chest where I can pick up the blanket, hold it to me and still smell his baby smell. :0) I miss him so much!

2009-09-03T02:11:00.000-05:00

Daddy holding David before our last goodbye.

2009-09-03T02:09:00.000-05:00

We were so blessed to have him in our lives. He is dearly missed and will never be forgotten! Praise God for all of His Blessings!

Blessed with Loving, Funny Sisters....

2009-08-18T08:07:00.004-05:00

Sunday night the ladies from our Home Team gathered together and played Pictionary for while. It was SO NICE to laugh like that! Heartfelt laughter can be so healing! Especially when we blurt out answers to Pictionary drawings like "milk tree" and "health care reform". :0)
I LOVED just having "girl time" with my friends! This was a very welcome distraction to the grief Jeff, the kids and I have been trying to deal with every day. That night, I even had a wonderful dream as opposed to the nightmares that has been plaguing me lately. These women are Blessings to me....they are my Sisters in Christ and I love them immensely! :0)

I had been a little nervous going back to church only because I had heard that many people didn't know what to say or do around me. I never thought I would make people uncomfortable at church.....that was never something I would ever have thought would be a concern in my entire life. I feel so bad that I make other people uncomfortable in that way. I know that the woman who told me this did so in a loving way with good intentions but it just made me feel that much more isolated in grief. So thankful that my Sisters in my Home Team were there to pick up my heart and share laughter with me!

Let me share my thoughts with people who feel as if they don't know what to do or say around someone who is in grief. Please know there are no words in the human language that could ever take away, lessen, alleviate or remove the pain of loss. Gentle reminders of Jesus' resurrection helps me in that I have hope that I will see and hold my baby boy again. But even these words are bittersweet to me right now. Maybe later in our grieving process these words will not have a fresh sting of loss accompanying them. Right now, I am embracing the vision of David, Darynn, Olivia, Oliver, D.J., Breanna, Owen, Elias, Hannah, Caleb, Esther, and Micah all playing with Jesus in Heaven's playground.

I have been struggling with my post-pregnancy body, hormones, and the blindingly intense realization that my arms will never again hold my son, my precious David while I am alive. So rather than words, I encourage anyone near me to give me the biggest, deepest, longest hugs your bodies can manage. If I cry, please do not feel bad! As I said before, our tears are precious to our Father God. He keeps our tears in a bottle (Psalm 56:8). Even if I cry all over you drowning your hair, clothes and make-up in a sea of salty tears do not let me go. Just let me grieve in your loving arms. Please, please, please do not feel uncomfortable around me. I love my church family. I need my church family. Please don't feel as if we are strangers. Please don't feel as if you have to say something to me or to Jeff. Please just love us and give us hugs until our arms fall off.

Think of Job's friends (before they started the whole "you must have sinned for this to have happened to you" thing). They didn't say anything to him at first. They just wept with him, sat with him and spent time with him. That is what we need; what we want. Just be with us. Share with us our grief. Honestly, there are no words that will do any good right now. At this time, just be our family. Just love us unconditionally.

Blessings,
Ginger :0)

Smiling Through Tears

2009-08-11T18:28:00.004-05:00

I think I now know what Paul meant when he talked about his struggle between his flesh and his will in Romans 7:13-25. Although his struggle is more about his flesh desiring to sin, my struggle is that my body is rebelling against my heart's desires. I still have some pre-pregnancy weight so I cannot fit comfortably in my old jeans but I am not really big enough to wear my one pair of maternity pants. At least I have been able to keep my milk from coming in. That would make things much harder, I think. I keep having nightmares, too. Maybe this is an obstacle that God wants to help me overcome and gain strength from. All I know is that this is just hard.

When we first got David's diagnosis in early June, I removed myself from the things I enjoyed doing the most. I stopped teaching Sunday school, I told Carol M. that I would probably not be facilitating the Encouragers program at Clinton Elementary this coming school year and I didn't sign up for the 3-day summer STEP mentor program this year. I have felt so guilty about not participating in those things and I have missed being a part of these things very much. Earlier this summer, Drake and I read Ephesians 6:10-18 together and we talked about what putting on God's armor really means. Lately, one verse has been stuck in my head.

Ephesians 6:13 "Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand."

The verse literally says "after (I) have done everything, to stand." I think God has been telling me it is Ok to just stand every once in a while. It is Ok to just stand while He refines me through this struggle with my body, my will and the absence of David. This encourages me to be patient and let God refine me through this struggle with my body and my heart's desires. God provides everything I need when He thinks I need it. He doesn't give me what I want when I want it. That would defeat the purpose of His plan to refine me. Through our loss of our precious son, David, I see just how GREAT my Father God is to let Jesus be my Savior....OUR Savior. How His Heart must have grieved to see His Son suffer for my sins!

Romans 5:3-6 says "...rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.
You see, at just the right time, when we were still powerless, Christ died for the ungodly."

I know how Blessed we are to have had David.

I know how Blessed we are to have people around us who let God's Light shine through them.

I know how Blessed I am that God has never left me or forsaken me even when I took His Love for granted.

But now I know that it is Ok to simply stand, let my heart grieve and work through this struggle with my body and my will for my body to go back to normal quickly. Seeing my post-pregnancy body makes David's absence that much more intense and painful in my heart.

But now I know that my tears are not a sign to people that my faith in God is wavering; rather simply standing, smiling for all of our Blessings and sharing tears is evidence enough that God is present in my life and that His Hand is keeping my stance steady.

(...and YES I meant to type Blessings with a capital "B"...to me anything touched by God should be capitalized) :0)

Sometimes, God is revealed the most in us when we simply stand.

David's Funeral

2009-08-04T16:29:00.006-05:00

Our home church, Cornerstone Bible Fellowship in Sherwood, Arkansas, held a memorial service for our baby boy, David, this morning. Our pastors and elders worked so hard to make sure that the service focused on David as a Blessing rather than a loss. Although we miss him so much it literally hurts to breathe sometimes, I know that he is in heaven with Jesus and is no longer confined to the restraints of trisomy 18.

Tomorrow, we will drive to Abilene, Texas, and have a graveside service for David (our precious little Jellybean) at Elmwood Funeral Home where we will lay his little body to rest at 10 a.m. on Thursday morning. I wrote down a few thoughts and gave them to our pastors. They did a beautiful job in translating my thoughts this morning. I asked them to reword my writing because I am afraid that I am not grammatically correct (and thank goodness for Spell Check). I can't get our scanner to work or else I would scan in our pastors version. I love how hard they all worked to convey our hearts message to everyone at the service today! I think one of my new favorite songs is one that Pastor Eddie picked out called "In Hope". I absolutely love being a part of a loving church family!

Here is what I wrote (as soon as I can figure out what is wrong with our scanner I will scan in what our pastors wrote for us....I love their version better than mine....so beautiful and so loving! And grammatically correct!):

David Asher Paro
Born to Heaven July 31, 2009

On May 26th at a routine prenatal appointment, the doctors identified several markers for severe chromosomal abnormalities. Jeff was deployed to Iraq and I came to the appointment alone and I remember completely falling apart at the news. I felt so scared and frightened I couldn’t stop crying. I called Jeff’s commander and begged him to get a message to Jeff. Jeff called back within minutes and we talked and prayed that it was a mistake. The markers identified a more serious condition than Down’s syndrome or Turner’s syndrome. The conditions were limited to trisomy 13 and trisomy 18 and a CVS procedure would be necessary to give us a definitive answer. The procedure was scheduled for June 2nd and my mother came up from Texas to stay with me while the procedure was done. Two days later we learned the definitive results of the CVS procedure. Our baby was a boy with full trisomy 18.

When we first heard about our baby’s diagnosis of trisomy 18, we were devastated. I remember getting on my knees and crying out to God begging Him to heal our baby boy. I was worried about Jeff because he was so far away and I didn’t know how to help him process all of this. In the midst of this turmoil, God was trying to press something on my heart but I didn’t take time to listen to Him. Jeff and I thought it would be best for me to take the kids to Texas to be with my mom for a while so that I could make plans for our little boy…..things like birth plans and lining up a neonatologist to be present for his birth. While on the drive from Jacksonville, Arkansas, to Abilene, Texas, I was able to have the quiet time I needed to listen to what God had been pressing on my heart since the day we learned of our baby boy’s diagnosis. This is what I discerned from God that day:

God doesn’t make mistakes. Our baby was made by the same hands that formed the stars in the sky, created the majesty of the mountains, and formed the delicate perfection of a rose petal. Our baby was perfectly made according to God’s will not according to earthly ideals. Our baby has a purpose and although the road ahead would be difficult, I should keep my eyes on God. Very clearly a passage came to my mind that I had read somewhere but had forgotten. “Joy is not the absence of pain but the presence of God.” After my lengthy quiet time with the Lord, I felt comforted for the first time since the trisomy markers were identified and I felt a peace that could not be explained by any logic I have ever known.

Jeff said he felt helpless and asked me what he could do to help me while he continued to serve out his deployment in Iraq. I asked him to find a very special name for our baby. Jeff did an amazing job! He chose David Asher which means “beloved gift of God” in Hebrew. I don’t think he could have found a more perfect name for our little blessing!

Throughout this journey, I met a lot of other trisomy 18 mothers and fathers as well as parents who have lost children for various other disorders, illnesses and accidents. Although I absolutely hate the circumstances under which we met, I count these mommies and daddies as blessings to me! They held my hand (both figuratively and literally) and helped me to keep my focus on God. Some trisomy 18 daddies reached out to Jeff while during his deployment through email. These parents amaze me! They reach out through their grief and hold the hands of the parents just learning about trisomy 18 and give encouragement in abundance!

On July 28th, on another routine prenatal exam, we learned that David no longer had a heartbeat. My mom-in-law was with me during the appointment and I am so thankful for that! She made the call to Jeff’s commander and to the Red Cross to get Jeff home. Initially, the doctor wanted to let me give birth naturally but then we realized that David’s little body was deteriorating and we needed to induce labor. I prayed that Jeff would get home in time because I just couldn’t fathom giving birth to our son without Jeff there. It would be the only chance he had of holding our son. Jeff’s commander, first sergeant, and friends worked together to get Jeff home.

When we got to the hospital at 8 a.m., neither of us was in a good place spiritually, mentally or physically. In fact, John and Jenine Sloan were there standing behind us and I never even realized they were there. It was all I could do to keep from sobbing in the hallway. I didn’t want David to leave my body but I didn’t want his little body to deteriorate any further. After I put on my hospital gown, John and Jenine came in and talked with us and let us weep. I was so worried that I wouldn’t remember anything of David’s birth. When I gave birth to our oldest son, Drake, I was given pitocin to induce labor and had hard contractions every 2 to 3 minutes. After 13 hours of hard labor, I was so tired that I don’t remember a lot about what happened immediately after Drake was born. I was so afraid that would happen with David’s birth. I knew I couldn’t afford to forget anything….it was the only time I would have with our son. I was worried about Jeff and how all of this would weigh on him. He had only just gotten in the night before and hadn’t slept much at all during the trip from Iraq. John and Jenine held our hands and prayed with us. We prayed for peace that surpasses all understanding, that we would remember everything of David’s birth, and that we could trust Jesus and lean on Him during the days to come. John and Jenine even let us borrow a Bible….I had left mine in Jeff’s bag that we accidentally left at home.

Several times during the day, Jeff and I prayed for peace that surpassed all understanding. That was a hard day for both of us. What should have been exciting and happy was sad and lonely for us. One of Jeff’s friends came and took Jeff to lunch and spent some time talking with him. Jeff’s countenance was completely different after that! I am so appreciative to him for taking time to spend with Jeff. This is one of the ways that God touches our lives…by putting people around us when we need them most! One of our friends from church came up to talk with us and pray with us that evening and that lifted our hearts so much!

Soon afterwards my contractions started coming. Such bittersweet pain I have never known before. I was excited to see him but knew that my time with David was getting shorter. I prayed for peace that surpasses all understanding over and over again in my head. I prayed that Jeff and I could keep our focus on the blessing of David and that we could keep our eyes on God rather than focusing on our loss.

After 4 or 5 pushes our precious David was out! Dr. McKelvey said “Hello David!” and spoke to him as if he were her buddy. I am forever grateful to her for that! Jeff and I had time alone to weep and pray over our baby boy and thanked God for blessing us with this precious child. Our mothers arrived as did Mike Haigh and we all spent time celebrating David. He was perfect! He was perfectly formed by the hands of God! My mom said she remembers walking into our delivery room and seeing my face smiling at David. She knew that everything would be Ok; that God held us all in His hands. She even made mention that she thought I was glowing at one point. I know that was straight from God. Only He can give that kind of peace in the midst of sadness. We had Jill Meyer, a Now I Lay Me Down To Sleep photographer come to take pictures of him with us so that we could have something of David to keep with us. Our nurse, Treasure, certainly lived up to her name that night! Dr. McKelvey asked to be present when David was baptized and dedicated back to God. Everyone circled around us while we held David and we thanked God for His blessings and for answering prayers for peace. God granted us peace that surpassed all understanding! I literally felt God’s arms wrapped around us that night!

We are also blessed to have been able to see David’s purpose. In his short little life, he has inspired people to begin a prayer relationship with God, to renew an old relationship with Him and for those that have a solid relationship with Him already to spend even more time with Him. David has done more for the kingdom of God than I ever have. We are so proud of our son! It amazes me to think that his fragile, perfect little body had a spirit that literally moved people closer to the Lord. I am so proud of David! Jeff and I feel so honored, humbled and blessed to be David’s mommy and daddy!

On a side note, God also granted me the ability to remember everything after David’s birth. I remember EVERYTHING! I pray now that I never forget. I pray that I always remember his sweet baby smell, the delicacy of his skin, how amazingly similar his nose is to his Grandpa’s, how perfectly he fit in our arms and the sheer look of love on my husband’s face when he first saw David. I think I fell more deeply in love with my husband that night.

I thought about our pregnancy and the difficulties and blessings we experienced along the journey. Would we do anything differently? I would make sure to get a DVD recording of his heartbeat. Would we go through this again knowing the outcome? Absolutely! Even though we know we would only have a little while with him, we would go through it all over again just to be able to hold him, kiss him, talk to him and just soak up everything about him! It was all SO WORTH IT!

Our David has changed our lives. We no longer take time for granted. Our families are closer than we ever have been before and we are closer to the Lord than we ever were. We are blessed to call David our son! We are so blessed to be David's mommy and daddy! Praise God for His Blessings!

Important update

2009-07-29T08:52:00.002-05:00

I have said this before and I will say it again.....the mommies I have met who have lost a child are amazing Blessings to me. They are so loving and courageous and can tell me the truth in an honest and loving way. Rebecca lost her precious girl, Olivia, and delivered her 4 days after she was discovered not to have a heartbeat. Rebecca lovingly told me that David's body would deteriorate and that I should not wait to have David especially if I wanted to take pictures of him to keep with us forever. I swear these mommies are so amazing to me! I pray that someday I can help someone else as much as they have helped me! It takes someone special to tell someone the truth (sometimes the painful truth) in a loving way.

I immediately called Dr. McKelvey and asked her my concerns and asked if I could be induced after Jeff got home. Dr. McKelvey answered my concerns and questions honestly (even when it was hard to hear...but I need honest answers right now) and we decided to induce. David's body showed signs of edema yesterday which indicates he passed away at least a day earlier. Dr. McKelvey also told me that I might not be prepared to see David's body and asked if she wanted to describe him to me before I made a decision whether to hold him or not. I want to hold him no matter what. God made him and he is perfect to me. I am worried about Drake, Grace and Zach. I don't want them to be upset by David's appearance. I guess we will just have to play that by ear.

Jeff gets home tomorrow night at about 7 p.m. and I am scheduled to be induced at 8 a.m. on Friday morning. I am so irritable today.....I wish I wasn't irritable. I just feel angry and I am not mad at anyone in particular. Maybe it's because I feel as if everything I touch is out of control.

I hope that my anger doesn't pull anyone's eyes away from God. I think this is part of the grieving process and it's normal to feel this way. The only reason I have any semblance of thought is because God has His Hand on me. He is the only reason I am functioning at all.

July 28, 2009

2009-07-28T11:41:00.005-05:00

I think the very worst moment of my life happened earlier this morning. It was during the level II sonogram and the technician began taking pictures of David's head, measuring amniotic fluid and then moved the transducer to his chest. It took me a moment to realize that something was missing. I asked her "where is his heartbeat?" and she said in the most sensitive way humanly possible (for which I am grateful to her for that) "I don't see one today" and then she hugged me. My mom-in-law hugged me and they both just let me cry. Sob is more like it. I know I wasn't crying quietly. I hope I didn't upset any of the mothers in the waiting room or exam rooms.

What made this so much harder was having to get the information to Jeff. Thank God my mom-in-law made the call to Jeff's commander for me and she made the call to Red Cross. Jeff sounds so broken and that kills me. I wish he were home right now so we could sob together and lift each other up but I know God has a plan and His infinite wisdom is much better than my deepest desires. I accidentally hung up on my mom when I made a dash for the bathroom or else I would have thrown up there. Definitely would have scared the mommies in the doctor's office if that had happened. When I came back from the bathroom I asked the technician to please check again for a heartbeat. She obliged and again there was nothing. I just kept hoping that it was a mistake.

Although there are a lot of tears in our home right now I know God is sustaining us. If He didn't have His Hand on me I would be completely falling apart and nonfunctional right now. Dr. Lowery says he doesn't want to induce labor and that he says labor could start on its own anytime between now and four weeks. That gives us time to get Jeff home. I cannot fathom delivering David without Jeff here. At least I can have David with me for a while longer. I had asked the technician if she could make a DVD recording of David on the sonogram machine. I wish I had asked for a DVD last month so we could see David's heart beating again. My heart grieves for that. Such a huge regret.

I don't know if I can go to church or to anywhere publicly for a bit. I want to glorify God in my actions and I don't want people to think my tears are a sign that God isn't sustaining us. My tears are so precious to Him. I pray that David knows how much I love him, his Daddy loves him and how much we wanted to have him with us forever. I pray that David knows how my heart grieves for him and that I did try to do everything I could to make everything Ok for him. I pray that David's brothers and sisters never forget him and know that God is present and in the middle of everything difficult and painful in our lives.

This might not make sense right now. Lots of things in my head and my heart. Just please know that God has His Hand on us through this but we still need your prayers. Please pray that Jeff gets home within the next few days and that our family will glorify God throughout it all.

Blessings to everyone! I read each and every single comment, email and message on Facebook and count each person as a Blessing to me! Thank you all so very much for holding my hand through this difficult path!

WE MADE IT!!!

2009-07-25T20:04:00.002-05:00

We made it home in one piece and have just completed grocery shopping. Our cupboard was bare when we got here because we had not been home all summer.

After packing up our van, driving for 6 1/2 hours, then unloading the van and going to WalMart for groceries I can honestly say I am totally, completely and overwhelmingly wiped out!

Time for me to wash the children, read another chapter aloud of Dragon Rider and put everyone in bed (especially me). :0)

Good night, my friends!

P.S. Strangely, other cars avoided us during the trip......either the other travelers on I-40 read the warning on my blog or it might have something to do with toys flying out the window......LOL

A Warning...

2009-07-24T21:39:00.008-05:00

Ok, this is fair warning to all other drivers on I-40 from Oklahoma City to Little Rock, Arkansas, on Saturday morning. I will be driving a minivan with 3 kids, 2 dogs, 2 firebelly toads and an entire summer's worth of clothes, toys, books, a laptop and who knows what else so my temper will likely be short and my hair will be pulled in many different directions (bearing a striking resemblance to Medusa).

We will be in the brown minivan decked out like the hillbilly Clampett's on their way to Beverly Hills.

It would be wise to avoid us at all costs. :0)

Thank you and this concludes the Paro Posse's traveling warning. :0)

Trying to keep my focus on God...

2009-07-23T18:38:00.004-05:00

I am nervous about the sonogram on the 28th. Drake, our oldest, wanted to go and see his brother on the sonogram but I just don't think it's a good idea. If we see more anomalies it might be harder than necessary on Drake. I pray that David's heart is Ok. I pray that his herniation hasn't gotten worse. I pray that he doesn't have esophageal atresia and that his kidneys, liver, pancreas, lungs and stomach all function normally.

I know that if there are anomalies that God has a plan and is in control. I am just wrestling with the "Mommy" feelings I have and the knowledge of God's sovereignty at the same time. Admittedly, it is hard sometimes to keep my focus on God when my heart is begging Him for David's life and health.

Whew! What a week!

2009-07-20T22:43:00.006-05:00

I started back to school on the 14th and have been trying to get used to the routine of homework again. I find it amazing how David has changed my perspective on everything in my life. Before David's diagnosis, I stressed over my grades and strived to be able to graduate with honors. Now, I still hold education important but I don't have the intense desire to excel in my homework. I feel more laidback in class, more open to give my honest opinion in class communications, and at times more critical in my thinking regarding the information I read in my textbooks. I no longer just accept whatever I read at face value......I tend to think about it, chew on it for a while and then make an informed decision as to whether I agree or not. David has changed me, I believe, for the better. I am so thankful to God for giving him to us! I can see things in Jeff have changed for the better, too. He seems to focus on the positives more than the negatives lately and that is wonderful (especially since he is in a sandstorm-ridden area of Iraq and has to deal with this on his own without support).

Now for other wonderful news.....Saturday, Drake and I sat down and we talked about the importance of being an honorable, godly young man. He accepted Jesus Christ as his Lord and Savior in December of 2006 and was baptized at our church in Arkansas, Cornerstone Bible Fellowship, on August 3, 2008. He and I have had many Bible lessons at home and since I was the Sunday school teacher for his grade at church, the poor little guy had to listen to me teach about the Bible on Sunday mornings, too. He has been inundated with Biblical truths and can repeat Scripture at will. However, he also has influence from people that are not focused on God and this has manifested in his behavior and attitude. Jeff and I decided in March of this year that we needed to do something to encourage him to apply Scripture to his daily life. Jeff and I heard about the book Raising A Modern Day Knight by Robert Lewis. This book is really for fathers in how to guide their sons through the passage into manhood; however, since Jeff has to deploy so much I read the book, too, so that Drake can have consistent guidance. The premise is that our culture doesn't have a rite of passage that boys can work toward, set goals for, and eventually achieve to prove himself worthy (and therefore building confidence, leadership skills, encourage fruits of the Spirit, etc.). Boys in American culture seem to flounder at times and be pulled in different directions trying to prove themselves. We were worried that despite our best efforts, Drake was headed down a path that would lead to him to ignorie the talents that God gave to him (and ultimately be detrimental to him) in order to fit in with the rest of the world.

So, we came up with a plan....

We asked one of Jeff's friends (the amazingly talented Sean G. who is exceptionally talented in leatherworking) to make a chain-mail coif and a leather brigandine chestpiece for us to give to Drake when he exhibits virtues of a knight of Christ (an honorable, godly man). Joy, love, peace, patience, kindness, goodness, faithfulness, gentleness and self-control are also part of the virtues of a knight of Christ (these are also fruits of the Spirit...see Galatians 5:22-23). When Drake said he understood what I was talking about, I then told him that Sean made two pieces of knight armor for him....BUT he had to earn them. He can't earn them by only exhibiting these characteristics once.....we have to be convinced that the characteristics are part of his core before he will actually be given one piece.....then after we see more characteristics he will get the other piece. He will continue to get armor pieces the more honorable, godly characteristics we see that we are certain are part of his core being. Sean is now working on gauntlets and the final piece will be a big surprise for Drake....but that will probably be given to him when he is on his way to college. It might take him years to earn these pieces, but after seeing them and trying them on, he was very excited and his attitude seemed to change instantly! If he should suffer a setback, I think I will show the pieces to him to give him encouragement.

God's Armor:

Helmet of Salvation

Breastplate of Righteousness

Belt of Truth

Sandals of Peace

Shield of Faith

Sword of the Spirit

Ephesians 6:10-17 (NIV)

"Finally, be strong in the Lord and in his mighty power.

Put on the full armor of God so that you can take your stand against the devil's schemes.

For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms.

Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand.

Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place,

and with your feet fitted with the readiness that comes from the gospel of peace.

In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one.

Take the helmet of salvation and the sword of the Spirit, which is the word of God."

I highly recommend Raising A Modern Day Knight to every parent! Although it was designed for fathers, I still learned a lot from it. :0)

The picture above is of Drake in his knight armor standing next to Sean. The chestpiece was made large on purpose because we think it might take a while to achieve his goals. I am still working on improving myself and I am a whopping 38-years-old!!!! (DOH!!! Did I really just admit that???)

Thought for Today

2009-07-19T08:45:00.000-05:00

Philippians 4:6-7 (New International Version)

"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.

And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."

Thank you my LORD for the peace You have given to me! :0)

What To Say/What NOT To Say...

2009-07-10T16:12:00.003-05:00

Many loving people have told met that they just don't know what to say, how to act when they are around me. I have to say that initially I didn't want to be around anyone other than my mother and Jeff (of course this last one has been an impossibility). I have been able to work through some pretty difficult emotions and have completed a lot of the hard stuff in preparation for David's birth. Now that I no longer feel like a raw nerve exposed, I would like to be amongst people that I love...all the people I love and anyone who would want to share the joy and Blessing of David with me and our family.

What I love hearing....

1. "Congratulations!" David's conception was a miracle to me. Dr. Taylor told me in February that I was going through early menopause yet in April we discovered we were pregnant! This is God at work here folks and I am so thankful He chose us to be David's parents! :0)

2. "He is a Blessing!" David is truly a beloved gift from God. Trisomy 18 is not what we expected or hoped for but this is all part of God's plan. I see David as the Blessing he is intended to be and I don't want anyone to forget that. I love it when other people see God's Blessing in this situation, too. :0)

3. David's name. Talk to me about David. He is my son. I love him. I am so afraid that people will forget him because he is not a normal, healthy baby. Please don't think that mentioning his name will make me sad. I am so proud of my son who is currently defying the odds be even being alive! I will talk about him to any and everyone if you let me. I am just as proud of David as I am of all of our children. :0)

4. "David is a miracle!" He sure is! I am seeing God's hand at work every day in our lives. Sometimes it's through David's sneak-attack hugs (when I feel him move); sometimes it's in the love and messages we receive through this blog and in emails. I can see where people are allowing David to influence their lives and focus on God and the positive things in life. I am so lucky to be David's Mommy! :0)

What not to say....

1. "You can always try again." David is not replaceable. No other child on earth could ever take David's place. I am certain other Mommies in this situation feels the same way about their babies. Please don't ever, ever, ever, EVER say this to anyone.

2. "Doctors are wrong", "tests are wrong" At this point, we know that David is a full trisomy 18 baby. For us to believe anything else would not benefit David in the slightest. We have to be prepared for David's birth, his medical necessities after he is born and for anything else that we could be facing.

Think of Moses' mother. She had amazing faith that God would protect her son. Yet, she still used her brain to carry out plans for her child that would give him as much earthly protection as possible while still promoting the completion of God's plan for Moses. She went to the trouble of making a waterproof basket for him to float in a crocodile infested river in the reeds. She could easily have just thrown him in the water and thought "God will protect him and keep him from drowning no matter what I do." But she didn't. When I read about this whole situation in the Old Testament, I am amazed at how much thought Jochebed (Moses' mother) put into not only protecting her son but also in her "technical" compliance with Pharoah's orders. I encourage everyone to reread this section of the Bible. Jochebed was a woman with faith overflowing in God but also used every piece of intelligence God gave her. A truly amazing woman! :0)

3. "Miracles can happen; he could still be a normal, healthy baby." I know miracles can happen because David is a living miracle right now. Please don't make the mistake of thinking that if you pray hard enough that David (or any other child) will be miraculously healed and that if the child isn't healed then you didn't pray hard enough. This belief could be devastating to your faith. Ultimately God is in control of everything. No amount of prayer will change any situation if it is not in line with God's plan. There is nothing we can do (via prayer or physical works) to change God's sovereign plan. The belief that we can override God's plan by our prayer or physical works puts us higher, more powerful and more authoritative than God and this is just not biblical. We should do everything in our power to provide for our family but we are limited in our power. When we reach our limit, we can count on God to provide the rest according to His Will. God never promises to heal us from everything this side of heaven; He does promise to never leave us or forsake us....EVER. :0)

Rather, think of prayer as a means by which we get closer to God and our hearts are more open to Him by continual communication with Him. I read this somewhere and it really brought prayer into a 3-D illustration to me. Think of prayer as an anchor that we throw ashore to try to bring our boat to safety in a storm. When we throw that anchor (prayer), we are not bringing the shore to us; rather, we are bringing ourselves closer to the shore (God).

Honestly, I love hugs. Granted no one would probably want to give me a hug lately because I turn into a sweaty mess every time I step out into the 104 degree heat that has been plaguing Texas lately, but if you are brave enough I would LOVE to get a sneak attack hug from anyone who would like to give one. :0)

Now, if I have some tears please don't be afraid. I have learned that tears are precious to Jesus and that He keeps them in a jar (this is in Psalms). If you want to you can cry with me. Just know that I know this isn't easy on anyone but it takes a trained, disciplined child of God to see the joy in any situation no matter how difficult and the more we practice this together the closer to each other and to God we will be. Isn't that something to rejoice all by itself? :0)

Blessings to everyone!

July 9, 2009

2009-07-09T15:55:00.002-05:00

Well, I resume classes on July 14th. I was only 6 weeks away from getting my Bachelor's degree but when the doctors discovered the markers for trisomy 18 I couldn't keep my focus on my classes or homework so I took a leave of absence. I used to be excited about school but now I think it might be a bit of a distraction. I have completed David's live/still birth plans and have roughly drafted funeral arrangements (I want this completed and done so I never have to think of this again and hopefully we won't ever need to use it). I have lined up a NILMDTS photographer named Jill Meyer who will be present at or immediately after David's birth to sensitively record his first moments of life with his family. I have Dr. Billy Thomas (a well-respected neonatologist) lined up to be present at David's birth to ensure that David has everyone and everything available to him to help him get a good start at life. I am a firm believer in being prepared. David needs for us to be prepared...he can't afford for us not to make preparations for him.

I sure do miss my best friend! Jeff and I were able to talk via Skype for a few minutes today until the internet connection on his side went out. He did tell me he got the 17 week sono pictures of David that I sent to him and that he has been showing them off to everyone. :0) I LOVE that man!!! :0) He sure knows how to lift my heart up to the heavens when I need it most! I love it when people are excited about David. I love it when people know about his trisomy 18 diagnosis and still find joy in him. It's a miracle he is alive right now and I love feeling him move even though I don't feel him move very often. It is sort of like David gives me a sneak-attack hug from the inside! I love him so much!

I can't express how hurtful it is that members of our own family purposefully do not talk about him and in fact seem to ignore the entire pregnancy. Maybe that is how they are processing all of this. I don't know. I just know it hurts because I love my son so much and I see the Blessing that he is. I am overwhelmingly sad at his prognosis but I am enjoying having him with me right now and I wish that I could talk about him to those family members because I firmly believe David's purpose is to bring people closer to God. It feels as if these family members are not only denying David's existence but also God's. It just hurts.

Maybe for now I should just try to distance myself from them as much as possible until I am strong enough to speak to them humbly. If I try to speak to them now, I am afraid I will be confrontational and that only promotes division. That would definitely be contradictory to David's purpose and I don't want to do that at all. It sounds strange to say I need strength to by humble but it's true. It takes great strength and admirable character to be able to control what one says especially if dealing with strong emotions. Weakness is saying whatever is on your mind at any given time without regard to possible repercussions. This is something I have learned from experience. I am still working on the "great strength" and "admirable character" part.....actually I don't think I will ever perfect those things this side of heaven but I will keep striving.

Hooray for Skype!!

2009-07-05T16:58:00.002-05:00

Oh how my heart feels comforted now! Jeff and I have not been able to talk to each other due to record sandstorms in Iraq. His email has not been working (all of the emails he sends out has been sent back to him) and he hasn't received the emails that I have sent to him. His morale calls have had terrible connections...so bad that we spend most of the 15 minutes allotted for the calls repeating things to each other because the line kept cutting out.

Finally, last night Jeff got Skype on his end working! We spent 40 minutes talking to each other! WOO HOO!!!!! I sure have missed hearing his voice without crackling noises! :0) Jeff got to talk to the kids, his brother Tim, his mom and dad also! He sounded so much better last night than he has sounded in a while! He laughed when I told him that his mom and dad were having a 4th of July party and planned to set off a bunch of fireworks......however, God played a joke on all of us. There had been no rain for about 30 days in Oklahoma and suddenly rain started pouring at about 5 p.m. (just prior to dad starting up the barbecue). Ha ha! :0) Jeff thought that was pretty funny. He said he hadn't seen the sun in 3 days because there was so much sand and dust in the air from the sandstorms. I will be so glad when he gets home!

I am now back at my mom's house in Texas. I have a lot of things on my mind and I haven't been able to put them in any kind of semblance or order; I think I will be able to do that while I am here. I seem to be able to be more effective in organizing my thoughts when I am around either Jeff or my mom. There is so much to do at Jeff's folks house that I sometimes don't get time to think or cry or work through any emotions. That can be a blessing and a curse. A blessing that I have a break for a while from thinking about David's prognosis, working on his live/still birth plans, perinatal hospice, delivery options, etc......and a curse in that I am not working through any emotional issues at all. I need to be in a place emotionally where I will be able to be strong for Jeff, our children, our families when the time calls for it. That doesn't mean that I won't have moments of weakness and many jars of tears; it means that I will be more able to help my family deal with difficulties surrounding David's anomalies and prognosis. When I first heard about the possibility of David having trisomy 18, I was so shocked and upset that I actually don't even remember driving home that afternoon. I remember crying on the phone to Jeff's commander begging him to get a message to Jeff. That's all I can remember of that afternoon. I know I don't want to be in that frame of mind again. I want to do everything I can to prevent that. I don't want my husband, my children, my family to see my completely crumble like that. They will need me to try to reflect Christ's love and see the Blessings He has given us in every tiny, miniscule event through this entire situation. If I am overcome with emotion, I won't be able to keep my focus on God at all. It's good to work through things. It promotes healthy healing. I pray for healthy healing for all of us. :0)

Level II Sonogram on June 30th

2009-07-01T22:44:00.004-05:00

Thank you all so very much for your prayers! All in all the sonogram was encouraging. To put this into proper perspective, I was worried that we wouldn't see David's heart beating because I hadn't felt him move in 2 1/2 weeks. As soon as I saw David's heart beating I started crying and knew in my heart that no matter what anomalies were revealed that we could get through anything as long as his heart kept beating. Praise God for this blessing! :0)

David weighs about 6 oz. right now and his femur (the long bone in his legs) are behind in growth about one week. We saw fluid in his stomach and bladder but we could not see if he has esophageal atresia (where the esophagus doesn't attach to the stomach properly). We could not see his kidneys and lungs very well either. The sonographer took lots and lots of pictures of David's heart but he is still too small to be able to tell exactly what anomalies might exist there. 90% of T18 babies have heart defects so I think that may be why the sonographer took so many pictures of David's heart....to establish something to look back and compare to later sonograms, although I am not sure about this. The biggest concern right now is that David has a small herniation near his umbilical cord insertion. This could get worse and develop into an omphalocele so we are praying that doesn't happen. David also revealed he has a bit of his Daddy's stubborn streak....he absolutely, positively would not uncross his ankles under any circumstance! The sonographer moved the transducer to get him to move around and open his legs (to see if his boy parts were developing normally) but David would not uncross his ankles! I couldn't help but giggle about his stubbornness! He is already showing a bit of the Paro personality there! :0) The pictures we got from the sonogram have me convinced that David has his Grandpa's nose! :0) David has a sweet profile and his nose just gives him character. :0)

We were able to talk to the genetic counselor and learn more about T18. We also were able to talk to a neonatologist from UAMS. I was shocked to learn from him that only two years ago neonatologists pretty much did nothing to try to prolong the lives of babies with T18...it was strictly comfort care. Now, neonatologists have altered their approach to T18 babies; they examine all anomalies, inform the parents and work with parents to prolong life whenever possible.

All in all it was a very encouraging day! This does not mean we are out of the woods yet, though.

Specific things we are praying for:

1. That David's small herniation does not develop into an omphalocele.

2. That David's heart has no defects.

3. That David's kidneys, liver, pancreas, and lungs function normally.

4. That David does not have esophageal atresia.

5. That we are able to glorify God throughout this entire situation.

Yesterday, I felt David move....it was just a tiny flutter but he melted my heart nonetheless. :0) It was as if he gave me a hug from the inside. :0) He is such a precious angel! :0)

June 29, 2009

2009-06-29T14:09:00.002-05:00

Tomorrow we will get an idea of what we are dealing with for David's care via level II sonogram. I am nervous about it but am trying to earnestly seek God and keep my focus on Him.

Please pray that David has the mildest form of T18 possible; that we are Blessed to have him with us for years.

Thank you all for your prayers! :0)

June 28, 2009

2009-06-28T08:59:00.003-05:00

For several days now I have wanted to express how deeply appreciative I am for people taking the time and effort to send David gifts. I hope that I convey how much your gifts to David lifted my heart but I don't think that my words will do an adequate job. Maybe I should just start from the beginning.

When I first found out I was pregnant I was stunned. In February of this year my gynecologist told me that I was going through early menopause because my progestin levels had been consistently low. Jeff deployed to Iraq on April 13th and I found out I was pregnant one week later. Needless to say, this was a big shocker to me and to Jeff! He was so happy when I told him! We decided right away that we would not go overboard with baby things because we already had all we needed from when Grace and Zach were babies. We would only carry on our family tradition of getting a special "going home" outfit (a special outfit worn once to wear home from the hospital and to keep to give to our child later on as a keepsake), a special blanket that only belongs to the baby (not to be shared with any siblings no matter how extreme the temper tantrums from siblings may be) and then, of course, new pacifiers, bottles, booties and hats. We had clothes, crib, bedding, strollers, car seats and toys galore already. We decided that in lieu of gifts or baby showers, we wanted donations to Children's Miracle Network because we felt we were lucky to have this baby and there were so many families who were struggling to get medical care for their children we wanted to pass our blessing onto others.

When we found out the definitive diagnosis for our baby David, we were devastated. I haven't allowed myself to buy a special going home outfit for David or a special blanket. HOnestly, I have been scared. I have had two miscarriages before; one at 14 weeks and one at 18 weeks and the diagnosis of T18 sobered me very quickly to the fact that we might not get to have David for very long much less get to take him home with us. I haven't allowed myself to go into any baby departments at stores or even go maternity clothes shopping. I haven't allowed myself to get excited about David's birth because his birth means that my body will no longer be sustaining his life; he will have to rely on his little body, modern medicine and our prayers to survive. The statistics are so grim and discouraging.

I have contacted several other T18 Mommies (all of these women are God's Blessings to me!) and they have shared their lives with me. I am forever grateful to them for being so open and honest and loving. Last Tuesday, one of these precious Mommies (Owen's Mommy, Shannon B.)sent a box of gifts to our little David! It contained a bracelet with David's name on it, a special outfit, a blanket and a CD of songs. I wept for hours. (Mostly, I only allow myself to cry in the shower or at night when everyone else is asleep. My mom and my children are very sensitive to my tears and I don't want to upset them; they are already trying to process David's diagnosis and I don't want to add to that.) My heart felt as if this precious Mommy was telling me it is Ok to get excited about David's birth. Such beautiful, thoughtful gifts! I pray that she knows what her generosity has meant to me and to our whole family!

The very next day, David got another box of gifts! This one came from Peter's Mommy, Mary K. (Peter, by the way is a 4 1/2 year old boy who has full trisomy 18!!!!). This one had a beautiful lamb snuggly blanket, support information about difficult prenatal diagnoses, a card with encouragement and scripture written inside and another blanket from Lucas' Mommy, Deanna. Their gifts of love lifted my heart so very much I cannot adequately put this into words.

David is our very special boy and we are Blessed that God chose us to have him. I do still worry about David's birth; however, these Mommies have encouraged me to get excited about holding my baby and wrapping him up in these beautiful blankets made with love! I want David to know how loved he is and how grateful to God we are for putting him in our lives! I want David to know that although this isn't what we expected, we would gladly go through anything just to have him in our arms even if it is only for a moment! I pray that we will be able to have him with us for years and totally blow those awful statistics into smithereens, but I accept whatever God gives us.

My heart was so uplifted by these loving Mommies that I went out and bought a maternity swimsuit yesterday! While there at the store, I looked at baby hats, booties and pacifiers. Before these Mommies Blessed us with David's gifts, I didn't have the courage to look at these things and hope. I am forever indebted to these loving Mommies for their thoughtfulness and generosity.

We went swimming last night (me in my new maternity swimsuit) and had so much fun! We left when the swimming pool closed at 9 p.m. and didn't go to bed until almost midnight (X-Men was on....the kids wanted to watch it and we just couldn't help ourselves)!

I am still nervous about the level II sono that is scheduled for Tuesday but I will just try to keep my focus on God throughout the whole thing. I still have not felt David move...it's been over two weeks now, but I am not dwelling on that; I am keeping my eyes on God. He will bring us through everything.

Please pray that David have the mildest form of T18 possible. My heart is hopeful again and I thank these Mommies for allowing Christ's Light to shine through them! :0) Thank you all so very much! :0)

Please pray for peace

2009-06-24T09:48:00.003-05:00

My friend, Shannon, is a precious woman who reached out to me and gave me encouragement while facing difficulties herself. She was pregnant with her beautiful son, Oliver, and helping me cope with David's trisomy 18 diagnosis while trying to prepare for Oliver's birth who was also a T18 baby. Oliver was born to heaven on the morning of Father's Day. Thank you all for keeping Shannon, her husband Eric and precious Oliver in your prayers! She expressed she felt a beautiful peace during Oliver's birth and I know that had to come straight from the hand of God Himself.

Please join me in praying for continued peace for this family. Shannon's strength, dignity and they way she glorifies God in everything she says and does inspires me. I am so blessed to know her.

Happy Birthday to Jeff! :0)

2009-06-23T10:20:00.002-05:00

Happy Birthday to Daddy and Auntie Jennifer! Can you believe that 36 years ago today Daddy and Auntie Jennifer were born? Grandma and Grandpa sure had their hands full, huh? :0)

We miss Daddy so much! We are counting down the days until he comes home to us. :0)

Love, hugs and many, many, MANY kisses to you, my JefPa! :0)

June 21, 2009

2009-06-21T08:30:00.002-05:00

Happy Father's Day! I talked with Jeff last night (THANK YOU GOD!) and although he sounded a bit better he still sounded odd to me. Maybe he is overly tired like I was before I started taking Tylenol PMs to help me sleep. I tried to keep the conversation upbeat and I told him about the kids and the Vacation Bible School they went to this past week. That seemed to get a good chuckle out of him!

Here's the story:

The kids went to a Vacation Bible School at First Christian Church (from 9 a.m. to noon each day) here in Abilene and every single morning the teachers there had to pry Grace (crying the whole time) off of my leg each morning. Friday (the last day) when I went to go pick the kids up the organizer said over the loudspeaker "Well today is the last day of Vacation Bible School..." Grace immediately looked up at me frowning and said "it's over? But I LOVE this place!" Ha ha ha! Jeff got a big kick out of this! :0)

I pray that God put peace in Jeff's heart and that He give him good rest. I pray that I feel David move soon and that the level II sono on June 30th will show the mildest form of trisomy 18 possible. I pray that we will have David in our arms for far longer than the statistics indicate.

I am feeling a bit conflicted about something. In Lamentations I read this:

"Who can speak and have it happen
if the Lord has not decreed it?
Is it not from the Most High
that both calamities and good things come?"
Lamentations 3:37-38

I know that God made David a trisomy 18 baby for a reason. I know that God will reveal His Glory through all of this tough stuff. WHat I am worried about is if God wants me to glorify Him in how I handle my pregnancy with David, David's life, how my children understand about God's Will and His infinite wisdom, and how I deal with David's death whenever it may come. Talking with other T18 Mommies I feel comforted and encouraged during my pregnancy with David. I know that I will enjoy every second of David's life (I beg God to give him to us for the longest possible time according to His plan). I am teaching my children about God's Will and how He always knows what is best for His children even if circumstances are painful for a season. What I am worried about is how I will handle David's death. I know that my behavior will not glorify God in the slightest. I can't think of it without feeling anger and wanting to scream. Other T18 Mommies have talked about their babies deaths with such dignity and grace. I know that I will not be like them. I wish I could be like that through all difficult things. I hope that I can glorify God in all aspects of my life. Maybe I should put this aside for now and trust God to equip me with whatever I need to glorify Him at any given moment. I just don't want to fail Him. I don't want to fail David, Jeff, Drake, Grace, Zach and everyone around us.

I think I need to go watch some more Brad Stine comedy. I am definitely putting my book Trusting God aside for now. It's pretty deep and probably not what I need to be reading right now. I think a more uplifting book would be more helpful at the moment. :0)

Blessings to all Father's everywhere! Especially to my Father God! I pray I don't disappoint You.

June 20, 2009

2009-06-20T11:21:00.004-05:00

What a difference a good night's sleep makes! :0) I hadn't been sleeping well for a few weeks and I had been getting to the point where if someone looked at me funny I would be near tears. Isn't it odd how when a person doesn't get good sleep his or her whole outlook on life tends to stay on the bleak side? Maybe when our bodies are overly tired all we can see is the hard stuff. Hmmmm. Definitely something to think about when I resume my classes on July 10th.

My doctor said I could take two Tylenol PMs to help me sleep and if that didn't work she would call in some Ambien for me. She assured me that neither Tylenol PM nor Ambien would be harmful to David in any way; that the sleep additive in Tylenol PM and Ambien is a version of Benadryl and is safe during pregnancy. So last night I took two Tylenol PMs, my mom took the kids and I took my book upstairs to read in solitude. I made it to the second chapter before I put the book down and turned the light off. I woke up at about 5 a.m., got a drink of water and went back to sleep without problems. I woke up for good at 10:45 a.m.! Boy do I feel SO MUCH better than I have been lately! I still haven't felt David move but I feel comfort in that he is still with me and I can still talk to him and love on him all the time (even if that is only my tummy I am rubbing....I feel as if he knows I am loving on him). :0)

The book I am reading is a powerful book titled Trusting God by Jerry Bridges. It has some things in there that are a bit hard to chew on and I probably shouldn't be reading it while in the midst of difficult circumstances, but it is a good book nonetheless.

The other night I bough a 2 DVD set of Brad Stine's best comedy routines. He is a Christian comedian that Jeff and I really like. He doesn't cuss or use adult material in his routine so we don't have to worry about what our kids hear. That is such a blessing! My mom, Drake, Grace, Zach and I were laughing so hard.....I love hearing my kids laugh like that. The bits we liked a lot were when he talked about Adam naming the animals in the world and the bit about ferocious spiders had me laughing so hard that I almost didn't make it to the bathroom in time (that definitely would not have been a good example in front of Zach)! I highly recommend him to everyone for great laughter! After all, "a cheerful heart is good medicine." Proverbs 17:22

Boy I feel so much better today than I have in a while! I think I have enough energy to clean out the van. On second thought, maybe I would do better to find something fun to do with the kids with all of my energy. Mommy has been sitting on the sidelines the past few days because I have been so tired. Yep, forget about the van....it will still be there tomorrow. My kids need me to play with them and make great memories today! Ok, where did I put those water balloons? :0)

June 18, 2009

2009-06-18T17:01:00.003-05:00

I was wondering if anyone had any special verses they wanted to share.....any verses that particularly helped lift your hearts when facing adversity? Are there any special verses that touch your heart in times of trouble? Any that lift you up when you are down? When you feel overwhelmed? Any that give you comfort even in the midst of pain?

Please feel welcome to share some of your favorite verses with me. :0)

Blessings to you!

June 17, 2009

2009-06-17T20:15:00.002-05:00

I made a mistake the other day when I thought that my friend, Shannon, was going to be induced. Actually, she has an appt tomorrow with a possible induction the day after. Shannon, Eric and baby Oliver are never far from my mind. Please keep lifting them up in prayer!

I have met so many wonderful, strong, loving Mommies of T18 babies lately. I am surprised that I had never heard of it before David's diagnosis. These Mommies have wrapped their arms around me and have given me so much encouragement and comfort....I cannot find adequate words to thank them. These Mommies reach out through their grief and offer hope. I see Christ in each one of them.

I am still wrestling with overwhelming feelings of helplessness. The doctor suggested that if the FISH and CVS tests came back being positive for T18 then I could discontinue my Heparin injections. The Heparin injections are to prevent blood clots from forming in the placenta (I have elevated SSA antibodies) and "choking off" vital nutrients and life-sustaining functions for David. The doctor says the Heparin injections are merely a prophylactic and would cause more discomfort at this point than necessary. This doctor is so precious, has a huge heart and exceptional bedside manner; although, I secretly think she is trying to protect me from deeper emotional pain later on by suggesting I stop the injections.

Honestly, I want to keep the injections going. Not that I enjoy sticking myself in my tummy twice a day, it's just that by doing the injections I feel as if I am doing something to help encourage David's growth and survivability. Maybe this is just a mental thing for me more than an actual help for David....I don't know. I do know that I need to do everything I can to ensure David has a fighting chance at life. Wouldn't it be amazing if David were one of the 10% who lives to enjoy his first birthday? I know the statistics and I know the mortality rates but I have a hopeful heart that we will have David with us for a long time. Nonetheless, I still have to be prepared for the worst-case scenario.

I have begun working on a birth plan and have gotten some sound advice from other T18 Mommies about this. I think that we will ask to have a neonatologist present when David is born. A lot of what is on the birth plan so far might have to be modified after the level II sono on June 30th, but we will wait to see what happens then. When Jeff gets home, I am sure he will want to add things to the birth plan, too. I haven't heard from him since Sunday afternoon. I always tend to worry when I don't hear from him either via emails, telephone or Skype.

Well time to check my blood sugar levels. They have been perfect lately but still I check them. I guess that is part of the whole "I feel as if I am doing something good for David" when I keep it up.

Blessings to you all!

June 16, 2009

2009-06-16T17:22:00.006-05:00

I am so thankful to Amanda for letting me know that not feeling David move everyday is normal. I have been so worried! It seems that once I started worrying about not feeling David move then I noticed other things and then I started worrying even more. I noticed that I no longer get sick when I smell meat cooking and that my blood sugar levels have been perfect (it's almost like I am not pregnant or that I do not have gestational diabetes at all) even though I have been drinking more sugary, caffeinated beverages than usual to keep my energy up (I wake up feeling exhausted lately). I have to remind myself that this is not a normal pregnancy and things are not going to be the same as they were when I was carrying Drake, Grace and Zach. Even if this pregnancy were completely normal there is no guarantee that any two pregnancies are the same. I have to keep reminding myself of these things. I am sure that everything is Ok. I just have to keep reminding myself to keep my focus on God and not get distracted by things like that.

If you are experiencing a difficult prenatal diagnosis like this, please know that being worried about small things during a T18 pregnancy is normal. Try not to read too terribly much into those small things or else you will overlook just enjoying your baby. Keep your doctor posted of these things but don't dwell on them. I lost 3 days worrying about these small things. I can't afford to lose anymore time with David. I MUST keep my eyes on God. I am learning that this is sometimes much easier said than done.

June 14, 2009

2009-06-14T09:43:00.005-05:00

Drake very much enjoyed his time at the Razorback football camp! Even losing his glasses and half of one of his toenails didn't dampen his excitement while there. Unfortunately, his very last day of camp was spent in the trainer's office because he had been throwing up since 1 a.m. that morning.

I knew I should be concerned when he called me the night before and gave me a rundown of everything he had done at camp that day. I let him take Jeff's cell phone with him so we could keep in contact with each other...it was his first sleepaway camp and I wanted to be sure he could talk to me in case he got homesick (ok really, I needed assurance he was Ok). :0)
During our conversation the night before he told me he had eaten 3 meatball sub sandwiches for lunch (good grief!), had a big bowl of chili with a side of green beans for dinner, and was going to a midnight pizza party with the other campers in his dorm.

The next morning I hit the road at 6:30 a.m. to pick him up from camp by 10:30 a.m. (the normal dismissal time) and the coach called me to tell me Drake had been throwing up since 1 a.m. I confess I might have broken one or two (or five) different speed limits during the remainder of the trip over there to pick him up from camp. When I got there he was still actively throwing up but didn't have a fever. He and I then went to his dorm and packed up his clothes and bedding and I was FLABBERGASTED at the number of junk food wrappers all over his room!

So, here is today's lesson in parenting:

1 kid's first taste of "freedom"

PLUS

4 strategically placed vending machines in the campers dorm filled with the world's junkiest foods

PLUS

$14.00 in said kid's pockets

EQUALS

1 vomiting kid and 1 very messy, nasty car ride home

Good lesson to remember, I think. :0)

I think I need to sit down with Drake and teach him the word MO-DER-A-TION, what it means and how to apply that to life. Especially when the camp offers three daily all-you-can-eat-meals....that doesn't necessarily mean that he has to sit down at each camp meal as if he hasn't eaten in a month. :0) Big lesson learned for Drake and Mommy as well.

One thing I noticed on the trip yesterday is that I couldn't feel David (Jellybean) move at all. This is probably very innocent. During my pregnancy with Drake I didn't feel him move until I was between 4 and 5 months pregnant. During my pregnancies with Grace and Zach, I would feel movement but not steady movement until about 4 months along. This time, however, the most innocent things make me nervous. Innocence during pregnancy is completely gone now. In a normal pregnancy, not being able to feel David move every day wouldn't make me nervous. But now, the absence of feeling David moving every day clouds my heart with worry.

I have to keep my focus on God at all times or else I will lose the peace He has given me. I have been thinking about Matthew 14:25-32. I am no theologian or Bible scholar by any stretch of the imagination but I do have some thoughts about this passage that is helpful to me in our family's current circumstances. Maybe they will be helpful to someone else, too. Peter was able to accomplish a feat that is contradictory to every scientific fact known to man. He walked on the water through the power of Jesus Christ! However, when he was distracted by the wind (anything could be a distraction for us not necessarily just the wind), he sank into the water and cried out to Jesus for help. I am certain that if Peter had kept his focus on Jesus rather than allow his flesh to be distracted by the things of the world, he would have been able to walk on the water all the way to Jesus' side. This helps me see the importance of keeping my eyes on God....keeping my focus where they need to be rather than allowing the worries of my flesh or the things of the world to distract me from God.

Blessings to my brothers and sisters in Christ!

A Perfect Name for Jellybean!

2009-06-12T09:57:00.003-05:00

Jeff agreed that Jellybean needs a special name and has found the perfect name for our little Jellybean!

David Asher Paro

David means "beloved" and Asher means "gift from God" in Hebrew. Jellybean is our Beloved Gift from God so this is a perfect name for our baby boy! :0)

I have been in prayer for a family I have met through the Trisomy 18 website. Shannon and Eric are expecting their first child, Oliver Isaiah, on June 23rd. He is a trisomy 18 baby and the doctors wanted to induce her yesterday. Please help me lift this family up in prayer. Shannon has been a blessing to me. She has given me encouragement even when she herself is experiencing difficulties. I am so humbled by her strength!

Blessings to my brothers and sisters in Christ! :0)

A Special Job for Jeff

2009-06-07T21:10:00.004-05:00

I got an email from Jeff and he says he is having trouble sleeping. He didn't mention whether or not he had been to talk to the chaplain yet but I will ask him when we get to speak again. In his email, he mentions that he feels useless over there because there isn't anything he can do to help me with best case and worst case scenarios for Jellybean. Best case is intensive medical care (perinatal hospice) for however long we are blessed with him in our arms. Worst case scenario is burial arrangements. Jeff can't do either of these while deployed in Iraq. I realized that we have been so caught up in the shock of Jellybean's medical issues that we have completely overlooked one of the basic joys of expecting a child....picking a name. We had talked about names when we first learned that we were having a baby, but now those names just don't seem special enough somehow. Jellybean will always be "Jellybean" to us but he needs a special name that means something.

In my 5th grade Sunday School classroom at Cornerstone, I had listed all of my students names and put the meanings of their names next to them. The kids seemed to enjoy learning what their names meant in other languages. It seemed to give them a bit of confidence when they learned that their parents gave them such prestigious names. For instance, Madison means "powerful warrior" in Old English, Quinn means "wisdom" in Irish, Ethan means "strength, steadfast, reliable" in Hebrew. This is what I mean by a special name that means something. I used to like names that sounded phonetically pleasing and seems to "fit" our personality; however, now it seems more important for Jellybean to have a name that fits him. As I said in an earlier post, our Jellybean has done more for the kingdom of God than I have ever done in my life. He deserves a name that shows how special he is (but he will always be Jellybean to me). This is Jeff's special job. To find a special name for our precious baby boy. :0)

I also put these two verses on the Names list in my classroom and they suddenly have a much deeper meaning to me now.

Isaiah 49:16 "...I have written your name on the palms of my hands."

Isaiah 43:1 "..thus says the Lord,...Fear not, for I have redeemed you; I have called you by your name; You are Mine."

Yes, Jellybean needs a very special name that fits him. :0)

June 7, 2009

2009-06-07T09:43:00.003-05:00

Well, we made it to Abilene in one piece. I swear I felt like we were a “Clampett’s Convoy” (reminiscent of The Beverly Hillbillies and how they had everything they owned along with Ellie May’s critters strapped onto their vehicle). My mom’s PT Cruiser held Zach, Grace, and my mom’s two dogs, Peanut and Shinzie (along with my mom, of course) and our van held our two firebelly toads (Drake’s pets named Chance and Casey), our two dogs (Nickie and Rascal), toys, clothes, favorite bedtime blankets, my laptop, my meds and everything else we could shove in there. It was a long drive made even longer by the fact that:

1. Jellybean sat on my bladder the whole time (I LOVED that! I felt him move for the first time yesterday and couldn’t stop smiling!)

2. Zach and Grace apparently have bladders the size of Arkansas mosquitoes

3. Our dogs were given tons of water before the trip (I goofed on that one)

Therefore, we made a lot of bathroom breaks along the way. Really though, the trip was good for me in that I had lots of quiet time to pray and think…..more quiet time than I have had in a very long time (remember Zach and Grace were in my mom’s car so I only had the croaking of the toads and the snoring of Rascal and Nickie in my van).

During my prayer time, God pressed lots of things on my heart and I would like to convey them but am not sure I can express everything in words. Sometimes God presses things on my heart not in words but in other ways and putting them into words to communicate them effectively is a challenge. However, when God fills my heart with something I just feel like I need to share it. So here goes:

I am proud of my Jellybean. In his short life so far he has inspired people to begin a prayer relationship with God, renew old relationships with Him and for those that have a solid, established relationship with Him already, Jellybean has encouraged them to spend more time in prayer with God. Jellybean has done more for the kingdom of God than I ever could have dreamed possible in my entire lifetime! I am humbled and honored to be Jellybean’s Mommy and be a part of his life! I am humbled by the sheer number of people who have lifted Jellybean and our family up in prayer! I can feel God’s presence; the peace I have in my heart can only be from Him. Please do not confuse my tears for anger towards God. I am not angry with God at all. He has a purpose for Jellybean and I suspect I have just seen a taste of what He has in store for us all.

While driving in to Abilene, I saw the most stunningly beautiful sunset! I remember reading this somewhere long ago but it immediately came to mind when I saw the intricate details of the clouds, colors and the rays of the sun shining down and turning everything in sight into golden treasures. The same hands that painted the colors of the sunset are the same hands that created Jellybean in my womb. Jellybean was created perfectly according to His plan. I am so grateful that God chose me to be Jellybean’s Mommy! I am still afraid of the emotional pain that faces us. I have been in a deep pit before and am so afraid of going back in there but I know that God will be with me every step of the way. I pray that I will be strong enough that Drake, Grace and Zach see Christ in Jellybean’s life and in the way I am trying to handle everything. I still cry a lot but my tears are only because I feel utterly helpless. All I can do is to increase Jellybean’s chance of survival by continuing the Heparin injections in my belly, taking my prenatal vitamins, eating healthy and getting lots of rest. I feel helpless as a Mommy; I can’t put a Band-Aid on this and make it better. I can’t even help Jeff deal with this. I made Jeff promise me he would talk to a chaplain over there. I absolutely hated telling him the results of the FISH test. I hated being the one to crush his heart like that. He feels helpless, too. Ultimately, we both must hand Jellybean over to God. Really that is all we can do for all of our children. We pray over them, teach them about God, take care of them the best we can and leave the rest to God. I have to accept that sometimes we can’t fix everything; that God loves our children more than we do (and that is saying A LOT) so we have to trust Him implicitly with the precious little treasures in our lives. Sometimes they are closer in resemblance to little toot-heads rather than treasures…..they must have gotten that from Jeff’s side of the family…Ha ha!! (Just kidding Momma, I remember what a gooberhead I was when I was little!)

I thank God for everyone He has put into our lives to prop us up when we cannot stand alone. Sometimes that is figurative and sometimes that is literal. I know that I do not want to go to the level II sonogram alone. That is where the doctors can see Jellybean’s organs, how they function and connect and will give us an idea of what we are looking at (heart defects, breathing issues, feeding problems, etc.). My mom-in-law wants to go with me and someone from my home team will try to go if my mom-in-law can’t go because of work obligations. I am so thankful to God for these people and grateful to everyone around us; I can feel God’s Light shine through them! I do have a lot to be thankful for!

This is a long post today but God pressed a lot of stuff on my heart during the 12-hour drive yesterday and I wanted to share it. Maybe someone else needed to hear this just like I did. :0)

June 4, 2009

2009-06-04T15:09:00.003-05:00

LaJuana called with the results of the FISH test. Jellybean is a little boy with full trisomy 18. This diagnosis is incompatible with life. Jellybean is active and living only because he is getting nutrients from me while he is still in utero. I wish he never had to leave my tummy. I don't want to talk to anyone for a little while. I wish Jeff could come home but if he did he would have to redeploy in August and he would miss Jellybean's birth and holding him for whatever precious time we have him for.

I guess pray for strength for Jeff and me. This is the hardest thing I have ever experienced in my life.

June 2, 2009

2009-06-02T18:02:00.002-05:00

Happy Birthday to Grace! It was a great way to start today. My mom took her to school with 3 cartons of cookies to share with her classmates. She was so excited!

After we dropped Zach off at the CDC, we went straight to the doctor's office and I am so glad we left an hour early. There was traffic on 30 and ended up arriving right on time for the CVS procedure. My mom met everyone there that has been monitoring our case and my mom later told me she feels that we are in the best possible hands because these people truly care. Dr. Lowery did the procedure and although it was not as invasive as I originally thought it took a LONG time. He had to make two passes to get enough placental tissue to send to the lab. The encouraging thing was that Jellybean apparently did NOT like for the sonogram transducer to push on my tummy and did a little flip in the middle of the procedure. :0) My mom said "It's an active little baby" and I said "well, of course, it's a Paro" and started giggling. LaJuana, the genetics nurse, told us that they would like to order a FISH test along with the CVS test. We would get the results quicker (3 days) than the CVS (14-16 days). TriCare doesn't pay for it but we will make payments on that. We should hear response by Friday or Monday at the latest.

I know I am leaving out a lot of information but I am a little groggy. I was so tired after the CVS. My mom and I have a really nice lunch at The Olive Garden, then we picked up the kids and I immediately laid down for a nap when we got home. I slept for 2 1/2 hours!!!

I will probably make edits to this post later but for now I wanted to let everyone know that the CVS went well and that we will be going to Texas later this week. Dr. Lowery and Dr. McKelvey told me I needed to wait 48 hours before making the trip and that I should start my Heparin injections back up tomorrow morning.

For now, I need to splash some water on my face because we are going to get some birthday food for Grace. :0) .....and possibly some yummy yogurt for Mommy and Jellybean. :0)

June 1, 2009

2009-06-01T21:46:00.004-05:00

I am nervous about the CVS tomorrow. I can't help it. I have peace about Jellybean and all of the possible outcomes (I mean that I am mentally prepared) but the procedure itself has me nervous. I don't think I can psychologically handle another miscarriage. I don't want to lose Jellybean so my prayers today and definitely over the next few days is that this procedure doesn't cause me to lose Jellybean. I don't want to be the cause of Jellybean not even getting a chance at life! In some ways I think the CVS is a selfish test; that its purpose is for parents to know for sure what medical problems their child could be facing. On the other hand, I would hate for Jellybean to be born without proper medical care in place; I want her to have every possible chance of living a long, LONG life and I know that seconds count when certain medical problems are present and knowing about those problems beforehand allows for proper medical care. I know that God never gives us more than we can handle; I am just afraid of the pain. Not my physical pain....just the pain of having empty arms and a grieving heart. I can take physical pain. I mean I had been giving myself Heparin injections twice daily with tons of bruises so physical pain is nothing to me. It's the emotional pain I am afraid of.

I don't think I want to talk to anyone right now. I just want to talk to Jeff, my mom and our babies (poor Drake...even though he is a big 11-years-old he will always be considered my baby...he is just gonna have to deal with that). I told Drake that Jellybean is having some problems and he seemed to understand. He said he would pray that God hold Jellybean in His protective hands and that Jellybean knows that we love her.

On a down note, I have definitely learned what NOT to say to people who are experiencing a situation like this. Please never say "you can always have another one". Jellybean is not replaceable. No other baby will ever replace Jellybean. I am relatively certain that other women in this situation does not want to hear this.

I need to go spend some time with the Lord. I need strength to get through tomorrow's procedure and to also make tomorrow a great birthday for Grace. Wow, Zach turned 4 on May 31st and Grace is turning 5 tomorrow. I am so grateful that God planned for all this (medical stuff involving Jellybean) to happen during a happy time! Birthday celebrations with my babies are always a fun and messy time! :0) What a welcome way to forget about the worrisome thoughts for a while. :0) God is trying to show me I have a LOT to be thankful for!

May 31, 2009

2009-06-01T20:55:00.005-05:00

Yesterday was a good day! Zach turned 4 and my mom made the babies and I laugh like crazy! She was attacked by a "killer" tree frog and danced and screamed hysterically on our porch. :0) A frog was on the wall in our front porch area and the kids were trying to get close to it to get a better look. My mom was right behind them and apparently she made for an appealing target for the frog to jump on and escape the kids reach because it hit her dead-on! My mom FREAKED OUT!!!! She was screaming and dancing a jig and shaking her hands around like crazy!!! The kids and I laughed SO HARD!!!! I had to excuse myself to go to the bathroom!!! Oh my gosh that was so funny!! If I had been recording that we would have won $10,000 from America's Funniest Home Videos HANDS DOWN!!!!! :0)

Later on last night I had a little freak out of my own. After my mom and the kids went to bed, I was reading on the couch (where I have been sleeping) and heard scratching noises on the living room window. Needless to say, this totally freaked me out!!!!! I instantly started thinking of every single scary story I had ever heard and actually had to remind myself that I am 38-years-old and shouldn't be afraid of spooky stories from my childhood. I parted the blinds and saw two eyeballs looking right at me!!! It was a raccoon!!!! Last night my mom left the back porch light on and apparently the raccoon was trying to catch the bugs that were flying around the light. After I got my heart beating normally again I turned the back porch light off and tried to go back to reading my book. I kept giggling at myself for getting so spooked when I first heard the scratching on the window. :0) After that every little noise in the house made me jump...I guess I thought the raccoon managed to find a way inside to get something to eat. I didn't sleep very well last night but for much different reasons than what I had experienced earlier in the week.

I am incredibly thankful that my mom is here with me. Not only is she helping me with the kids but she has brought such laughter! To borrow a quote from author Barbara Johnson, "Joy from loved ones can be a simple and powerful encourager". She has been my sounding board for all of my fears, my thoughts and my worries. My mom is such a blessing to me! I can see Christ in her and in her behavior. She is selfless, encouraging, honest yet uplifting and she has a servant's heart. I can only hope that someday my children will think of me in that same way.

I have been trying not to think too much about negative things. Jellybean is always in my mind and in everything I do. I know that God has given me peace in my heart. There is no logical explanation for it. I began feeling this peace on Thursday before my mom got here so I know that my mom's presence has nothing to do with the peace I am feeling. Relief, laughter, companionship...these are results of my mom's presence but the peace I have can only be explained by the presence of God. Praise God for His Blessings! He is truly amazing to me!

There is a poem that I found that I have held closely to my heart the past few days.

He'll See Them Home

by Joyce Henning

Don't despair so of your children,

God will bring them to the fold---

Because He died to save them,

They're special to the Lord.

He knows how much you love them,

He loves them even more.

As long as you hold on in prayer,

He'll not close the door.

Even now He sees your tears,

And He whispers tenderly,

Of Love that conquered all---

That all men might be free.

So lay them at His altar,

Let go and leave them there---

God will be faithful to your trust,

He won't withhold His care.

His hand will ever nurture,

No matter where they roam---

And He won't be satisfied

'Til He sees them safely home!

May 30, 2009

2009-05-31T08:24:00.006-05:00

Thank God my mom is here! She brought her two little dogs with her from Abilene (Shinzie and Peanut) and some much needed laughter. Such hearty laughter is a blessing! It is the kind of deep laughter that wells up from the tips of my toes and causes my whole body to shudder! :0)
We went to Casa Mexicana and had a mini-celebration of Zach and Grace's birthdays (Zach's is Sunday and Grace's is Tuesday). The waiters put sombreros on Zach and Grace's heads, sang Happy Birthday to them and gave them ice cream/flan! They even took pictures of them wearing the sombreros! Very cute! However, I think the poor waiter from Casa Mexicana will forever be traumatized by what my mom did (apparently her small margarita was pretty strong.....) and each time my family goes into that restaurant he will probably check to see if my mom is with us before he waits on us. In fact, after she scared him (accidentally, of course) he would only come to my side of the table when he checked to see if we needed anything and to give me the ticket for the meal. :0)

My mom is such a blessing to me! It takes a very special person to bring laughter in the midst of heartache. My mom is that kind of person. Her dogs are comic relief, too. Last night the kids, my mom and I were going to camp out in the living room together. My mom's dog, Shinzie, snored so loudly that Zach and I ended up going to my bed to sleep! :0)

I know that there is no way that our baby will be a normal, healthy baby. There is too much evidence to indicate otherwise. I have the sono photos from Tuesday and after comparing them to Grace's sono photos I know that Jellybean is not "normal". There is a team of doctors treating me and Jellybean (Drs. McKelvey, Lowery and Wendell) so it isn't just one doctor's opinion that I am hearing. At this point, if the baby only has Down's syndrome or Turner's syndrome that would truly be a miracle. Earlier in my blog I talked about something that God was pressing on my heart. I have been trying to think of a way to express it in a way that makes sense. I think God gave Jellybean to Jeff and me because He thinks we can best take care of Jellybean; that we would be the best parents we possibly could be. In this I feel so special and honored tnat God chose us to be Jellybean's parents. I still worry about Jellybean. I don't think I would be a Mommy if I didn't worry.

It would be devastating to my faith if I were to pray that Jellybean would be born a normal, healthy baby. If I only prayed for that and truly believed that, then when Jellybean is born I would be in too much shock to truly just soak her up, memorize her, and just love her. (I still don't know for sure if Jellybean is a boy or girl but I keep thinking Jellybean is a girl) I have a hopeful heart but I have to remain realistic. My hopes for Jellybean is that her chromosomal abnormalities are the mildest form possible and that we will have her with us for a very, very, very long time. My prayers for Jellybean is that she doesn't have any pain and knows only love. Love from every source imaginable....from our family, friends, church family, doctors, nurses, and even strangers. I pray she can soak up love from every one of God's creations...the sun, morning breezes, croaking frogs, soft flowers and sweet honeysuckles. I know that some of that would mean she would have to be older to enjoy them but that is my prayer.

Now.....back to the laughter! Bring on the snoring dogs and silly Momma (but hide the margaritas, please)! :0)

Bible Study: Contentment

2009-05-29T10:12:00.002-05:00

I have been able to think logically today and even took an hour nap this morning but still I feel drained. I am coming to terms with everything slowly and have been thinking a LOT about the Bible study lesson I was working on before Tuesday. It is about contentment. I had so many ideas to share with my home team but now those ideas are so silly to me. For example, I thought if I had a tangible tool to measure my productivity for the day I would find contentment. I thought about making a journal of things I did that day with my kids as a means of being able to "see" that I had been fruitful that day. But this doesn't seem important to me now. It would be a good idea if the intention behind it were purer....as a keepsake to give to the kids rather than as a measuring tool for my own productivity.

I think I will just explain what contentment means to me; that it has nothing to do with circumstances and everything to do with who I am in Christ and how I try to live out my life amidst those circumstances. That to be content I have to change my perception of my environment and my life to match the perception of how Christ perceives me. Many times I used to think I didn't make any progress during the day; that I cleaned my house and at the end of the day it was messed up again. But if I alter my perception of this to match Christ's perception, it would be that I created memories that my children will carry with them all their lives and hopefully apply it to their children's lives. They won't remember how clean the house was (hopefully they won't remember how dirty it is either)...but they will remember the time we put on our swimsuits and played in the rain. I remember Grace saying "thank you Jesus for the bootiful rain!" I guess she thought He gave us rain so we could play outside in it. This is more important to me than measuring my fruitfulness and worth each day.

I am reading a book by Barbara Johnson who has experienced many tragedies in her life but still keeps her focus on God. In it there is a quote that I have memorized and think about often.

"Joy is not the absence of pain but the presence of God."

I am trying to learn how to be content in our present circumstances. This does not mean that I am happy about our circumstances; it only means that I am content....I accept what God has given me and I am earnestly trying to seek Him and live in a way that is most pleasing to Him. This, to me, is the definition of contentment.

May 28, 2009

2009-05-29T09:24:00.005-05:00

I woke up today feeling as if my body were made of lead. I made my way to the computer in the hope that Jeff was able to email me but secretly I hoped that he was online at the same time I was and we could talk on Skype. Fortunately, he was! Unfortunately, he told me that in order for him to come home certain requirements must be met. Since this does not directly affect my life or the lives of our "living" (already born) children, he might not be allowed to come home early from his deployment. I just can't fathom this. I don't understand this and anyone who adheres to this type of thinking should deeply reflect on his or her own humanity.

I called my mom and we decided that after the procedure on Tuesday the kids and I are going to go home with her. Even though I have friends here, my church family is here and everyone has been extremely loving to me and has gone out of their way to show support for me, I think I need to be at my mom's so I can have help with Zach and Grace. Since Jeff might not be able to come home I really don't want to be alone. I feel strangely isolated because many people (including those in our family) don't want to do research on trisomy 13 and 18. They don't understand and it hurts to explain it.

I have found comfort from these websites:

http://www.trisomy18support.org/

http://www.livingwithtrisomy13.org/

I met a lovely mommy named Shannon who is expecting her precious son, Oliver, in June. We have exchanged emails and she created an absolutely beautiful compilation of quotes, peoms, Bible verses and images that have given me the most encouragement and hope I have experienced since receiving the news on Tuesday. She has been a blessing to me and I have never met her before! Just knowing that someone knows exactly what I am feeling and experiencing has been an immeasurable help to me! Knowing that my feelings and thoughts are normal has helped me so much! I will forever be grateful to her and to all of the mommies at these websites for sharing their stories; their love and experience gives me hope and encouragement.

Dr. McKelvey (she runs Dr. Lowery's clinic on Tuesdays) called me shortly after I got off the phone with my friend, Lisa. Dr. McKelvey has exceptional bedside manner! She said she has been praying for me ever since she first saw me and she will do anything necessary to try to get Jeff home. She gave me her personal cell phone number and told me to call her anytime of the day or night with any concerns, questions or just to cry. She said that the baby could make it to delivery but to try to remain realistic about everything; that it will take one to two weeks to get the results from the CVS and that going to my mom's would be good support for me. She said Dr. Lowery is doing the procedure but she would be there because she wants to see me. She said she was also going to find out some alternatives I could use for my appts where a doctor in another clinic could see me but they could dial in to her and Dr. Lowery via videoconferencing even for sonograms since my mom's house is 12 hours away and coming here for appts would be stressful physically and mentally (with the kids).

I sent an email to Elmwood Funeral Home in Abilene just to get some prices and an idea of what we are looking at if there is a worst case scenario. They are working on getting it together for me right now.

I called and asked if I could take a leave of absence at school. I only have 6 more weeks before I finish my Bachelor's but I just can't seem to focus on that right now. They were very accommodating and said I could take up to 60 days before it affects my student loans.

I also have to try to start working on getting a copy of Grace's birth certificate from Okinawa. The copy we have isn't good enough for Lisa Academy. Keep in mind that the copy we have was good enough for the American Embassy to issue her a passport and the copy we have was good enough to enroll her in public school at Homer Adkins Pre-K but for some reason Lisa Academy needs a different copy. Very frustrating on top of everything else.

I have to work on my attitude today. I have to remember that not everything that goes wrong is not a personal affront directed at me. It just seems that way in the midst of everything. I have to take time tonight and spend it with God or else I will lose my mind soon.

May 27, 2009

2009-05-29T08:59:00.003-05:00

I woke up today after getting a few hours of sleep. My eyes are so swollen I can barely see. I have such a headache after crying so much. I researched trisomy 13 and 18 last night and all I could do was weep. I wept for the beautiful babies that never got to look in their mother's eyes. I wept for the mother's who now have empty arms and grieving hearts. Many times last night I cried out to God that I can't do this! I cannot do this! I can't handle this kind of pain.

Even though it is completely against everything I believe in I thought for a moment about early termination and what thay meant. My heart broke even more. I can't do that. I cannot purposely end the life of my child without giving Jellybean a chance to fight. Even though it might be selfish of me I want to hold Jellybean in my arms. I pray that I will see its eyes if only for a moment. I pray that Jellybean can feel the warmth of my arms and the love in my heart no matter how long or short that time may be. Early termination is not an option so if anyone I know is reading this blog, please stop bringing this up to me as it is NOT an option.

I called the Red Cross this morning and started a case to try to get Jeff home to help me make preparations for both best case and worst case scenarios. Best case scenarios is that Jellybean will be with us for a long time and that would mean arrangements for major medical care. Worst case scenario would be funeral and burial arrangements. I never imagined I would be looking at caskets for any of my children.

My mom is going to come here from Texas and Saturday and help me with the kids and she is going to be with me during the CVS procedure on Tuesday morning since I don't think Jeff will be home in time to be with me during the procedure. The doctor's office said something about discussing genetic counseling with me after the procedure but I think I am going to tell him that should wait until Jeff gets home; we need to be together for that discussion, I think.

I am so tired. I might try to take a Tylenol PM or something that will help me to sleep tonight. LaJuana called twice today and left messages on cell phone wanting to make sure I was Ok. I am so grateful to Lisa for directing me to that doctor's office. They are so caring there. I am fortunate to have to many loving people around me right now.

May 26, 2009

2009-05-29T08:16:00.004-05:00

Today was a shocker. I went to the doctor's office prepared for Jellybean's first trimester screening. The sonogram technician had difficulty seeing Jellybean on the first sonogram machine so we went to another room. She still had difficulty seeing Jellybean so she went to get another technician. I realize now that this was a bad sign because both of them said they couldn't see Jellybean very well and they left the room. They returned with LaJuana, the nurse from the genetics office, and with Dr. Wendell. He performed the sonogram and measured Jellybean's nuchal fold (thickness of the area behind the baby's neck). He said that the baby's nuchal fold was 8 mm in thickness and normal size is 3 mm. He encouraged me to get all available testing (AFP, CVS, Amniocentesis, fetal echo) and said he would put a rush on the AFP....that he would be very surprised if the bloodwork came back normal. He said that with my history of miscarriages that the CVS and amnio could increase the risk of miscarrying during this pregnancy, but the testing would help us to know the severity of the baby's chromosomal abnormalities. I began crying and apologized to him for my tears. He was so kind to me and said that he would be worried if I wasn't crying after hearing this news.

I went downstairs to the lab to have my blood drawn for the AFP and cried the entire time. I felt stupid for not being able to control my tears. I finally just let myself cry without shame because I remember that tears are precious to my Savior and I should not be ashamed for being scared and sad. I left feeling so shocked, sad and alone. I called my husband's Lt. Col. and am afraid (after looking back on that day) that I was incoherent and possibly screaming between tears. I hope that is not the case. My husband's Lt. Col. is a good man and I was so very frightened I couldn't put thoughts into any semblence of order. I begged him to get a message to my husband, Jeff (he is deployed to Iraq right now) because I was petrified and I didn't know what to do. Jeff called me back within moments and I told him everything I knew although I don't think I was coherent even then. His First Sgt over there gave him a few calling cards so that we could talk to each other. I hated hearing Jeff's voice crack. I hated being the one to tell him the news about our baby. I hated being the one to dash his hopes and dreams and expectations about our child. This was one of the longest days of my life. Waiting for the results of the AFP seemed like a few weeks rather than a few hours.

Because of the difficulty with the sonogram I was late picking Zach up from the babysitter's and getting him to his speech therapy. I actually don't remember the drive from the doctor's office to the Air Force base. I remember the babysitter giving me a hug because she could tell from the look on my face that I had received bad news from the doctor's office. When I got to Zach's speech therapy appt, the ladies there were so kind to me. I hope I wasn't short with them or abrasive or anything. I was overwhelmed with all of the information I had been given and was running scared through my daily activities. I remember noticing that everything was amplified somehow. Everything from the sun (shining too bright) to traffic (taking too long) to the innocence of people doing their daily activities (they are driving like idiots) just seemed to be adding to my emotional meltdown.

I talked to Jeff for a while when I was in the waiting room in Zach's speech therapy office. His voice calmed my panicked heart down. LaJuana called me with the results of the AFP and she gently told me that our baby has a 1 in 6 chance of having trisomy 21 (Down's syndrome), a 1 in 2 chance of having trisomy 13 (Patau's syndrome), a 1 in 2 chance of having trisomy 18 (Edwards syndrome) and the size of the baby's nuchal fold indicated it might have Turner's syndrome. I can't explain the feeling of helplessness and guilt. I felt that I did something wrong and that my baby is being punished for something I did. I felt helpless because there is absolutely nothing I can do to help Jellybean get better. I felt overwhelmed because I felt that God was telling me I wasn't meant to be a Mommy.

After some deep crying and crying out to God on my knees, I felt God pressing something on my heart but I ignored it at the time because I had to inform our families. I called my mom, Jeff's folks, and a friend from my home team and informed them. I sent an email to everyone else because it hurt too much to explain what trisomy 13 and 18 is.

Even though God was never far from my thoughts and I prayed almost constantly in my head, it wasn't until a few days later when I would actually be able to discern what God was pressing upon my heart. But I will explain all about that later. Right now I must continue on with recording this journey. This is both therapeutic for me and hopefully helpful to other Mommies who may be dealing with a prenatal diagnosis like this.

I had difficulty eating or drinking anything for dinner. Nothing had taste. Nothing had flavor. Everything was like chewing on cardboard and I had to force myself to eat something to make sure I kept my energy up for my kids sakes. I cried most of the night and didn't answer the phone unless it was my mom, Jeff's mom or Jeff.