As most of you who will read this know, shortly before the Christmas season Mandi and I found out that our new baby is going to be a girl. Claire Elise is expected to arrive on April 26th 2010 which just so happens to be Colton's birthday. After a series of pretty tough days and doctors appointments, Mandi and I have come to call her our "high maintenance baby girl." I am sure that Mandi will go into more detail on one of her posts but we found out that Baby Claire has one working ventricle in her little heart. At the ultra sound to determine the gender, the technician and Dr. Jones recommended that Mandi have a fetal echocardiogram because they were having problems seeing all the parts of the heart. At this point, Dr. Jones said there was nothing to worry about but he just wanted to double check and make sure that the heart was developing as it should. Mandi scheduled the appointment for what she thought was Jan 15th to later find out that the nurse made a mistake and it was actually Dec 15th. She headed down to Riverside for her late-morning appointment by herself and we were both praying a lot that day. I received a text from her earlier that morning and then a phone message midway through the day in which I knew something was wrong. I called her right away and she told me that something was wrong with Claire’s heart. I left work and headed to meet her. Needless to say, it was a very difficult time. Thousands of thoughts running through my mind on the drive towards Columbus.
I have read a good number of books on apologetics (defense of the faith) and each time I knew all the book answers to the question – How can a good God allow bad things to happen to good people? – but I have never experienced it. As I used to read these books, I always wondered what would be my challenge. Never in my life has anything compared to the things I found in these books. On the drive down to meet Amanda, I knew the book answers but the inner struggle of - Why me? Why us? Why my baby girl? – was starring me right in the face. To be honest, I am glad that I am typing this now and not in the state of mind I was while driving south on 23 that day.
Mandi was finished at the appointment by the time I was approaching Delaware so we decided to meet at Polaris before picking up Colton from Tuesday School at Spring Road. We parked at Target and struggled through this difficult time together. One thing for sure, it is best to have someone with you in the storm and I am so glad that we are in this together. We were in this fight together. The news from the Doctors was obviously not what you want to hear about your next child. On top of the heart problem, the neonatal doctor shared that congenital heart disease may be linked to chromosomal abnormalities. This was a crushing blow on top of the other news. Could our dreams for my little girl be shattered? Each developmental stage and life point was being reworked in my mind. The normal, the expected. What is to be? Could the parents dream still become reality?
Now try to add to this situation the difficulty of vocalizing the condition to those closest to us. We knew that our families and friends would want to bare our burdens and help us carry the newfound weight of grief yet it was so difficult to share. I am the type of person that once I start to cry, words just won’t come. Luckily, each time we shared the story, it did because easier to discuss. The prayers that were lifted for us did allow for a unexplainable peace to reign in our hearts. Peace and pain – can they be found at the same time?
Mandi and I traveled back to Riverside on Thursday Dec 16th for a follow up appointment with a specialist. We sat in the dark room watching the fetal echocardiogram technician scan Claire’s heart for about an hour while the Doctor was trying to determine the location of all the veins and arteries in this tiny heart that has not formed properly. Hard to believe that some developmental mistake in the first 4-8 weeks of her life has caused such a tremendous hazard to her ability to survive outside of the womb. After some time, the doctor stepped out and traced a picture of what seems to be Claire’s heart. He started by stating that she has a complicated developmental problem but quickly shared that he always remains optimist about children. Claire will require three surgeries with the first being shortly after she is born. He was very positive and informative. He did mention that Claire’s heart abnormality is not in a high risk category for having chromosomal problems which was a relief. Mandi and I were very thankful for the optimism that was shared with us as we left Riverside that afternoon.
There were many more thoughts I will share as they come to me but this is what I could remember at this time (and Colton just woke up from his nap). We appreciate your thoughts and prayers for Claire Elise Frame.
~Josh
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