A day in the Life of Claire

This spot is dedicated to the preparation and life of Claire Cox. Claire has been diagnosed with Trisomy 18, which is a genetic disease caused by an extra chromosome at the 18th spot. We know that God can cure Claire at any time, and continue to pray for this; however we also know that His Will, will be done!

Wednesday, September 27, 2006

Hi, after much hounding from my husband, I am agreeing to explain what this is like for me and how this has impacted my life in such a pivotal way. The bible clearly states, “No eye has seen nor ear has heard, no mind has conceived what God has prepared for those who love him” (I Co. 2:9). We were told that without a doubt Claire would not make it full term. The doctor wanted us to undergo steroid shots weekly in order to get Claire’s lungs ready for early arrival. They also wanted to run stress tests twice weekly, and stated that they would take her the first moment she showed signs of distress. We felt this was in our ultimate doctor’s hands, Jehovah Rophe, and He would take her when He was ready. He is going to do His will in both ours and our child’s life. I sit here today one week from delivery and you couldn’t find someone with a smile any bigger on their face than mine or my husbands. Certainly my mind runs wild with curiosity as to why God has allowed us to go full term, or just simply why, why, why? But ultimately that is unproductive and I remind myself I have not seen yet what God is preparing for me and my family in this situation and instantly the joy returns. Although we have no idea what we are about to embark on this following week, GOD IS FAITHFUL!

Over the past few months of pondering the bible, and just seeking to find all that God wants to show us through this experience, it has been nothing short of a privilege and an honor to carry this child. The fact that God chose my husband and me to be the humble parents that was able to help in this life being formed does nothing short of taking my breath away. There are two scriptures that have stood out to me especially since the time of her diagnosis: Jeremiah 1:5, m- “BEFORE I formed Claire in the womb, I knew her,” and Psalm 139:13-16, “For you created Claire’s inmost being; you knit Claire together in my womb. I praise you because Claire is fearfully and wonderfully made; your works are wonderful, I know that well. Claire’s frame was not hidden from You when she was made in the secret place. When Claire was woven together in the depths of the earth, Your eyes saw Claire’s unformed body. ALL the days ordained for Claire were written in Your book before one of them came to be.” Amen. It just doesn’t get much better for me.

I am so lucky to have been given this life that I have and it is built on my faith in God. Apart from my faith and Him, I can truly say, I am and have nothing. I can confidently say as for God, HIS way is perfect for me….and my family. We have been militant together and grown immeasurably and we are better people today after going through what we have faced. You will never know how much it has touched us to have the support and love shown to us as we have through those surrounding us and even by those we yet to know. Please continue to think of us and our precious Claire in the following days to come and pray that we do not rely on our own strength and abilities through this, but rather through HIS.

Friday, September 22, 2006

While out in California at a christian camp with my daughter Emily, I heard for the first time God talk to me. It was not a loud voice, or even an audible sound, rather just a "hint" of an idea.

Going to this camp (JH Ranch), my sole intention was to grow closer to my Daughter Emily. Although most of my prayers before I went (as well as after getting there), was to better my relationship with Emily, I of course also prayed daily for Tammy and I's unborn child, Claire, who has been diagnoses with Trisomy 18.

At lunch the 2nd day, I had a very distinct urge to go talk to the assistant, Mack, that made the announcements at all the meals. Well, I ignored this urge, and went about my business for that day. The next day, at lunch again, I had the same urge. I did not realize that this had come across me the day before. This time I paid a little more attention to it. I got up and went toward Mack, but at the very last minute decided I NO idea what I would discuss with him. So instead I veered off to the salad bar, which was beside him, and made a salad. I did not want a salad, so after making it, I just left it on my table untouched. I thought that was very odd for me, I'll talk to anyone and I never take food if I do not intend on eating it (but what else was I to do, walk around him like an idiot with no direction???).

Later that night, Mack was the speaker. Macks topic was the best 75 days of his life. Many years early, he and his wife had a baby that lived for only 75 days. What was an extremely difficult time for them, was also the most amazing and wonderful time of their life. They had to stay by their child's side around the clock, and aspirate her and sometimes even assist her breathing. Instead of them questioning their religion as they had been, they suddenly felt much closer to God and to each other.

He went on to say that their baby (Elizabeth) had a very rare disease called Trisomy.


Thursday, September 21, 2006

Well, well, well...... You will all have to put up with my bad English and poor spelling if you wish to keep up to date with the happenings of Our delightful Claire. Our intent is to post all kind of "diary" type info here, (two to three times a week)that we would like to share. If you find something interesting in this blog, and would like more details, please do not hesitate to call us. We are only using this technology as a way to bring you up to date, without having to tell our story 8 to 10 times a day.

The official "kick off" of this blog is going to be the day we actually bring Claire home from the hospital. We understand, and want you to understand, that this is already a long shot. The projected life of children diagnosed with Trisomy 18 is usually hours to days. Until then, we will post periodically just to let you know our thoughts and feelings as Claire's arrival approaches.

Just to get you up to date from the beginning: We first learned something may be wrong with Claire when we got the results back from a blood test done early during our pregnancy. It told us the odds of our baby having trisomy 18 was 10:1 (it usually comes back something like 3000:1). We were given the option of terminating (aborting) the baby at this point, but for us, that was just not an option. Although we prayed and held out all hope that our little Claire would still turn out perfect, we knew that if something was wrong, God would have some master plan that we may not understand, but will indeed have some purpose. Well, as time went on, more and more test came back that still indicated possibly Trisomy 18. The physicians wanted us to do an amniocentesis early on, but since this can increase the possibility of causing early labor, and even miscarrying, we decided against it. We felt like regardless of the results of the test, there was just nothing that could be done to correct the problem.

We continued to pray, and unfortunately we continued to get back bad results. Next we found out that Claire has a very bad heart condition call a ventricular septum defect (VSD), and possibly worse, something called Tetrology of Felot. We also found that Claire has her little fists clinched up very tight and in a very awkward position, which is also seen with Trisomy 18.

We finally gave in and had a amniocentesis done, which came back 99.9% sure she indeed has trisomy 18. That is still OK, we continue to pray for healing, or understanding as to why or what God's purpose is in this matter. We, or You, will indeed learn something from this, and will be much better off at some point.

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