Judah’s Perfect Puzzle

November 6, 2015 Family Stories, imperforate anus, November 2015 Feature - Urogenital, Urogenital System, VACTERL 0 Comments

The Lord’s idea of adventure and my idea of adventure are radically different. My adventure began with a dream of flying to China, bringing home a child, doting him with love, he’d love me in return and we’d skip down the Great Wall in fairytale fashion into our happy adoptive family life that would fit together like a perfect puzzle piece! Somewhere between him being afraid of a tall blonde and hearing “did you know” followed by something else that we “didn’t know” at every doctor’s appointment, my perfectly fitting puzzle piece started looking more like a square peg getting jammed into a circular hole.

Let me walk you back to the beginning of our story. Judah was a Special Focus child. “Special Focus” usually means “multiple special needs” or “you’d better be ready for this”… same thing. For us, these “needs” seemed minor! We were being led by the Lord, people! Nothing was too difficult for this faithful family. The file said Judah was born Imperforated Anus, minor deafness in one ear, and needed one of his testicles to descend. No biggie, right?

I remember sitting on the phone with our pediatrician and hearing her say “Oh, Imperforate Anus… well, that has to be corrected or he’d die, so that’s not a problem.” That conversation was ringing in my ear that first night with our little guy. “Not a problem”. I was handed a hurting, sick little boy. But how could that be if everything was “not a problem.” The first time I changed his diaper I gasped. My adventure quickly took a tail spin into an unknown place. I wasn’t prepared for this. We weren’t prepared for this.

One night Judah was crying and my husband picked him up, hugged him so tight and said, “You were meant to be my son and everything’s going to be okay.” Two years later, it is okay.


judah


Today Judah is thriving, happy, and eats everything in sight. In those first few months we learned that Judah was actually considered VACTERL. (By the way, he has zero deafness… perhaps just selective hearing at times.) VACTERL association is a disorder that affects many body systems.

VACTERL stands for:
Vertebral defects
Anal atresia or imperforate anus
Cardiac defects
Tracheo-esophageal fistula
Renal kidney anomalies
Limb abnormalities

People diagnosed with VACTERL association typically have at least three of these characteristic features. One in 10,000 to 40,000 newborn are considered VACTERL. Judah is the V, A, C, and R part of that acronym.

Every doctor’s appointment we went to led to more uncertainty on my part as a parent and how to best help my child. We were scared and confused. But guess what? Six months after Judah’s arrival in the US, one of the top doctors in the world moved 30 miles away from us and into a massive practice helping other children just like Judah. People bring children from all over the world to visit Columbus, Ohio because of the expertise of the amazing team of specialists sitting at OUR local Children’s Hospital. Praise Jesus.


judah1


I was also, fortunately, introduced to others families that navigate the same challenges that we navigate and we learned how to best help this sweet child, our sweet child. Did God know what He was doing? Of course. Did we know what we were doing? Heck no! But now, looking back I see the weaving hands of the Lord’s provision and his direction to this beautiful VACTERL boy from across the world.

Along the way we’ve learned a few things about this type of special needs adoption. Normal for me and normal for Judah are going to be different. But normal (for him), nonetheless. To protect his privacy I’ll leave out the lovely bathroom details and daily routines, but I want you to know how manageable they are. For now, Judah just assumes everyone has an enema. If I’m in the restroom and he knocks on the door he asks me 1 of 2 questions: 1. Momma, are you having your enema? or 2. Do you want to build a snowman? It is what it is… and that’s okay.


judah2


I know we are still at the beginning stages of our God-scripted adventure. Judah has more surgeries, more learning, more “normal” to gain and in the mean time I’ll pray, learn as much as I can and love on this kid like he should be loved on. We’re all broken. Our puzzle pieces still fit, they just look differently than what was presented on the box. And I wouldn’t change them for the world.

– guest post by Jeri



Leave a Reply

Your email address will not be published. Required fields are marked *

© 2019 No Hands But Ours

The content found on the No Hands But Ours website is not approved, endorsed, curated or edited by medical professionals. Consult a doctor with expertise in the special needs of interest to you.