8 fingers and counting

We’ve gone 7 months with no surgery. Seven glorious months of learning how to be a family of four. Jack learning how to roll, how to play, how to fight with his sister, how to use sign language and point/yell to tell us what he wants. He is a strong little boy and we are seeing that more every day as we get to know him. These two have my heart…their love for one another is so amazing and I am honored to witness their journey… 
J&Ljul29

Today is the day when Jack gets all 10 fingers! He was a pro for pre op once he forgave me for not giving him any food (even after asking very nicely “please” over and over in sign language).

Our four days here have been quite full. We met with the orthopedic surgeon for his shoulders/hips, the ENT, pulmonary, and his neurosurgeon. Every doctor was pleased with Jack’s progress since December. It appears that there is nothing structurally wrong with Jack keeping him from walking or crawling, leaving his brain and the damage done to it last year as the culprit… so from here we work hard and wait for Jack to figure this out 🙂  In the mean time, we got to meet two wonderful families who also see the docs here in Boston. Cameron is 5 and is energetic, friendly, and just a joy to see. Their family has inspired us these past two years as we look to older kids for insight and wisdom. The little lady is Juliana. She is 1 and is a charmer!  Her bright eyes and easy smile just steal your heart. All through dinner her and Jack tried holding hands which just was too cute!

jackmeetscam jackmeetsjuliana preop730

The hospital gave him this sweet puppy as a present for being here. He hasn’t cared much for stuffed animals at home, but this puppy came at just the right time. Jack was quite taken by him.

Now we wait…. surgery should take about 4 hours. I have already met two very sweet mom’s as we wait together. When we walked into the operating room, Jack looked all around and started getting really scared. I could feel it in his body as he tightened his grip on me. I was able to hold him as they put him to sleep which was both the sweetest and hardest thing I’ve had to do. He is in good hands… both with all 6 doctors and with the Great Physician.

I apologize that I haven’t written much as of late. I have been processing a lot in these past weeks how much to share. I want to honor Jack and my family. I do not see Jack as a burden. I do not see Jack as a cause. I see Jack as a gift. To me, to our family, to our community… I have chosen to write…. that in seeing our life in black and white… we may turn our eyes on things that are greater than the day to day, than the things that are easy or hard, and focus rather on the things that are forever. So, I write for God, who shows himself to me in the everyday, the unexpected, the lovely, and the ugly. I may not write much… but I write from my heart… a snap shot into our life. Thank you for your support and love.

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Published by: shanninvanderark

A stay at home mom/Occupational Therapist who has two children, one recently diagnosed with Apert Syndrome, a new coffee roasting business, and a whole lotta stories to share on the journey

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