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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

Can lightning strike twice? Please Pray, it may have…

According to NOAA (National Oceanic and Atmospheric Administration), the odds of getting struck by lightning in one’s lifetime is 1:10,000. One would have better odds of this phenomenon happening than to have a child born with CHARGE Syndrome (1:12,000).

Yesterday we had the usual monthly appointment with the OB with Theresa being at 22 weeks gestation. I will let her, in her own words describe the morning:

“…As I was showering and getting ready yesterday I was thinking about the day ahead and the much-anticipated ultrasound to hopefully find out the baby’s gender. As I was thinking about the baby I was overwhelmed with the thought that THIS baby was meticulously created by God for our family. Down to each hair (or lack there of) on its head. Whether a boy, or girl it was what God planned for our family and would be the best…..

While the news received just moments after being told “it’s a boy!” was shocking, and not what we were expecting, I think we are better prepared than most to receive it. We have been walking this “special” road for almost 11 years together already. Knowing that Kevin, my rock was sitting next to me to continue to hold my hand through this next portion of our walk was my encouragement….not that it could stop the flow of my tears.

After finding out the news that our baby was going to be physically not as perfect as we hoped I was still quite emotional as we stopped at the scheduling desk to discuss our next appointment (a planned fetal heart ECHO as is custom after having a child with known heart conditions). I know it was no coincidence that the scheduler’s radio was playing one of my favorite songs that I think God used to continue to comfort me …..Your Grace is enough! by Chris Tomlin. It was the best song for me to hear at that moment!”

We have become pretty good at reading ultrasounds, MRI’s, heart ECHO’s and all kinds of other charts and tests…we could tell their was something not quite right with our little boy’s face…a cleft. The technician tried to glaze over it, but as Theresa stated the obvious, she went to get Theresa’s doctor to confirm what she saw.

Now, a cleft is actually a very common birth defect and can usually be just an isolated event…but, the Troupe’s have a history of defying the odds, good and bad. We cannot at this time rule out that this is CHARGE related…we have seen lightning strike once before. The statistical chances of another child of the same parents having another child with CHARGE Syndrome is between 1-2%. 20-30% of all CHARGE Syndrome births have a cleft lip, cleft palate or both. We also believe that God DOES NOT deal in statistics!

“…for you have created my inmost being; you knit me together in my mother’s womb. I will praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well…” Psalm 139:13-14

Needless to say we have experienced a flood of different emotions over the past day or two. Excited about having another boy and the realization that we could be walking a familiar path. The difference on this path is that with Matthew we were completely reactive and had no prior hint that we were about to embark on the CHARGE Syndrome journey. In this journey we wait and see over the next several months as pieces are revealed to us through various tests and procedures. Either way, together we are prepared to await (__instert name__ ) his arrival. Please pray for us as we begin the process of further testing…for strength, perserverance…and hope.

At this time we cling to the words of the Chris Tomlin song that we hear on the way out of the doctor’s office. Your Grace is Enough…for me

Many have asked if it is okay to share this blog about our Lessons from Matthew…not only is okay, but we emphatically ask that you would. We welcome any chance to show how good God is and how he is working through the power of prayer. Conveniently use the “Share” buttons at the bottom of this post.