For those of you who haven’t followed our son, Zayin’s journey- he was born with a congenital abnormality or birth defect; an anorectal malformation called a Perineal Fistula/Imperforate Anus. His defect is extremely rare- 1 out of every 5,000 births where he was born with a misplaced anal opening and narrowed anal passage. His opening was outside of the normal sphincter muscle and nerves of the anus. After several surgeries and a colostomy, he seemed to be functioning okay until 2016 where his pediatric surgeon ordered an x-ray of his abdomen. This x-ray showed a complete backup. From top to bottom, Zayin was filled with stool that wasn’t clearing out. And this leads us to our praise to a God who knows, who understands, and who provides our every need, even before we even know of the need.
This trip we had prayed for for years. We knew of Nationwide Children’s Hospital and the team of incredible doctors there at the Center for Colorectal and Pelvic Reconstruction, but we never knew how it would ever come to fruition. It was complex- the stay, the travel, the cost, etc. God really does do 1 of 3 things when we pray. Sometimes He says Yes. Sometimes He says no. And sometimes He says wait. Although He had all of the plans perfectly planned out from before the foundation of the earth, in our earthly time, we had to be patient for Him to reveal His timing in this trip. So we continued to pray for help for our sweet boy, for more answers, for guidance, and for His glory. Zayin’s colon was not contracting to push out his stool resulting in constant impaction. Trial runs for years of different medicine and nothing was working. He was increasingly complaining of belly aches and his demeanor was completely changing. His irritability was through the roof and I began to wonder where our fun loving, energetic Zay was? My mommy heart was breaking. Right around this time, the Lord had set into motion our NCH visit to meet with a pediatric surgeon there, Dr. Wood in their Colorectal center. Children with Anorectal Malformations don’t have to nerve sensation as we do that tells them they have to push their stool out, which makes potty training nearly impossible. These nerves have to be trained. We needed help. From the first phone call to NCH Colorectal Center, the Lord’s peace was hovering like a halo. The people were incredibly nice and compassionate. I told them Zayin’s testimony and they assured me I was not alone and that they could help. For 4 years now, when explaining Zayin’s birth defect, I was looked at like I had 4 heads, but now I was having someone tell me they understood. The Lord was turning my fear into faith. He would provide. He was lifting all of the heaviness. I could feel it physically leaving my body. He was giving peace where there was anxiety. Unbeknownst to us, He knew this trip was much more than just seeking help for Zayin. The Lord had other plans for His kingdom and He would soon show them to us. He was so kind to give us eyes to see Him in every detail, and He would remind us many times He was right there with us, making His presence very tangible; guiding and leading us by His grace the entire time. "Zayin" of course is the 7th letter of the Hebrew alphabet. There were so many 7's we noticed ... notice the 7 on Zay's bed in the picture above with his name. His exam date was 27th of 2017. We stayed in room 307. So many signs all around that this trip was orchestrated so perfectly by our Great God. The day we left for the trip, Zayin had an unusual calmness to himself (very unlike his recent demeanor). He went with the flow and never questioned anything (so unlike a normal 4-year-old!). If I could describe it, it was as if the Lord had a halo of peace hovering over Zayin which overflowed into us, as his parents. Throughout painful testing, treatment, and an exam under anesthesia- the Lord had given Zayin such a courageous and brave spirit. But I quickly learned this trip was not all entirely about/for Zayin. The Lord would make connections where He saw fit: our family was able to meet and connect with other families of children with similar conditions to be encouraged and to encourage. The Lord used my simple wearing of a Mountaineers shirt for a chance to pray over a young girl with a brain tumor who was losing her sight due to the tumor pushing down on her optic nerve.
Something that the Lord is showing me as Zayin’s mom, a mom of a child with a disability or defect is that our pain sometimes is not for ourselves and not about ourselves, but rather for others, about others, for His glory. I am beginning to see pain as an opportunity. An opportunity for other’s to see the goodness of the Lord always, for them to see His desire to be with them; present in every area of their lives and the tender care and compassion He has for each and every one of them. There is so much purpose behind this pain. Nothing is wasted. He uses it all. And if He chooses to use our family’s pain to bring people to know Him and His Kingdom; I’m more than okay with that.
There’s a passage in Scripture that I think of thinking of this trip “A good measure, pressed down, shaken together and running over, will be poured into your lap” (Luke 6:38). Thank you for all who prayed for us, texted us Scripture, gave a financial blessing and offered your love and support. We felt every inch of it. Zayin will head back to Nationwide Children’s Hospital within the next few months for an intensive 1-week treatment to determine medication and we are hopeful for future bowel continence. There is work to be done, but grateful we don’t have to go about any of it alone. There will never be a second He won’t be present; guiding and directing our steps for the good of others and the glory of Himself.