Where Do You Live?
Tell Us About Your Family…
We are a family of four, soon to be 5, with our oldest son being born with Spina Bifida. His lesion is in the L4/L5 region which we have seen affect his mobility from the waist down and other functions of those regions of the spine. Tucker uses AFOs, forearm crutches (we call them his sticks) and a wheelchair for long distances. He’s been known to climb ladders, shoot a bow, and swim the length of the pool.
How Has Spina Bifida Impacted Your Family?
Spina Bifida took us completely by surprise and we had to google it rather quickly after we left the hospital that day. It was at our “gender reveal” ultrasound that they discovered concerning things which led to our diagnosis. Being our first child, we really had nothing previous to compare our experiences. We didn’t know life outside of a newborn in play therapy and physical therapy. Now, Spina Bifida affects our scheduling with daily routines necessary, doctors appointments, therapies, and surgeries to consider. Spina Bifida has brought along so many beautiful things into our lives. That does not mean that there are not days when we question, when our son questions. We hold tightly that Tucker was knitted together in my womb, that He was fearfully and wonderfully made with a purpose to bring glory to the name of Jesus Christ. His frame was not hidden when he was created and we trust God has great plans for him.
How Do You Participate In Your Community?
Tucker is always looking for a friend to chat with, and loves meeting new people wherever we go. We are very involved in our church and Tucker has been playing wheelchair basketball for several years now. He will compete in his first ever 5k race this month.
What Would You Tell A Local Family With A New Diagnosis?
Write everything down in the doctors office. They used really big words that I had never even heard before. Often times, I would have them write the terms down so that I would not forget what they were saying and could do my own research. Don’t worry, they are specialists, they are used to people not understanding the big word they use 🙂 Every case is so different, but find people who have walked these roads. The families ahead of us in this journey are an invaluable source of information and encouragement. You, and your child, need the support of others on this journey. Find Facebook groups, associations, and adaptive sports near you. Attend those events even with an infant to make contacts and be encouraged.