Apert Syndrome and Faith

Alright my friends… Here we get personal.  You see, this is my outlet. This is much faster and more practical for me versus journaling in this season of my life. And the truth is, I am not very private of a person anyway… most of my thoughts I would tell you if you were in my living room with a cup of coffee. And since I don’t leave my living room very much now with two little ones in bed, and you most likely won’t be stopping in… I will type.

This whole 2nd kid with a rare genetic syndrome that came out of nowhere really can shake a person up. Many people have shared the “welcome to Holland” poem with me (click here to hear it read)… which is a pretty accurate and beautiful portrayal of what the experience of raising a child with special needs is like. To be honest though, it is more severe than that. I think the author wrote that at the end of the journey and not at the forefront.  Where Im at… is I just got of the plane, and I thought i was going to Italy, but ended up in Holland. Im just starting to get used to language, the climate, the food… The first month, I didnt want to be happy about being in Holland. I didn’t want you to be happy for me. I wanted to be sad. I wanted to cry over my little boy who doesn’t have fingers. (Yes, I know they are there and just need to be released, but right now… he does not have them). I wanted to be sad that his skull does not grow the way that yours and mine does. That his feet have six toes instead of five. That we will spend the next 20 years at least in and out of doctors offices and pre/post-operation assessments. That Lucy’s little brother will be misunderstood for his entire life – not by everyone – thank goodness, but by the masses.  

There has to come a time though, where the sadness ends. Where life keeps happening and as it turns out, thriving. Where you look into the eyes of your little boy and realize he has a soul. One that will know hardship that I never will fully understand as his mother. Then you remember that God didn’t make Jack so life could be easier or even more fulfilling… He gave Jack life so that HE could be glorified through Jack. I remember praying when I was pregnant that I didn’t want to put my hope in a diagnosis (this was before we knew what was wrong with Jack). Instead, I want to put my hope in the person who was the maker and sustainer of life. The book of James says that 

Do not be deceived, my beloved brothers. Every good gift and every perfect gift is from above, coming down from the Father of lights with whom there is no variation or shadow due to change.

Wow. In a world where everything changes. This says that the Father doesn’t. This is the person who I want to trust my life with. That I want to entrust my children to, my husband… 

Jack was not a surprise to God. 

Jack is a gift. A fragile gift perhaps… but aren’t all souls?

I get to take care of this precious one. And every day, my sadness is being replaced with gratitude and joy. The tears still come. But there is peace in me. 



2 thoughts on “Apert Syndrome and Faith”

  1. Shannin, this is a beautiful testimony of how God is working in your life, because of Jack, and I know his precious life will touch and change many in the days, months and years to come! Thanks you for this insight and this Blog!! I love you!

  2. So beautifully written – to hear your honesty and faith. Thanks!! Looking forward to continuing reading as I scroll up and you continue writing 🙂 Katie (second cousin)

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