He’ll never walk. He’ll never talk. He’ll never throw a baseball. Ten years later, I can still hear those words like they were spoken to me yesterday. We were told this by a neurologist on the day we found out that our sweet baby boy did indeed have brain damage due to lack of oxygen at birth. I don’t remember much else of what he said to us, but I do remember that.
And in that moment, I hated him. I hated him for painting such a bleak picture of my son’s life. I hated him for telling us worst-case scenario. I hated that on the fifth day of my son’s life, he gave us no hope.
Fast-forward six months, and we saw this same neurologist for a follow-up appointment. He examined Wade, moved his little body around, handed him back to me and said, “WOW! I can’t believe this is the same boy I saw in the NICU.” In that moment, I no longer hated that doctor. Wade was very, very sick when he was born. I realized the doctor had a duty and responsibility to tell me what he believed to be true and to prepare me for the worst.
I do wish he had a little better bedside manner, but now, I can appreciate his words. His words, four days after the worst day of my life, infuriated me. But they also drove me to prove him wrong.
Our life isn’t very typical. It is full of doctor appointments, therapy appointments, and IEP meetings. Our house is full of medical equipment, from wheelchairs to leg braces to shower chairs. I know and can pronounce medical terms I never knew existed. Our life does look different, but it’s definitely not the bleak picture that neurologist described 10 years ago.
And guess what? Wade can walk; he uses his power wheelchair that he operates with his head. He can talk; he uses a computer with eye gaze to communicate. He can throw a baseball; he was on our community T-ball team for 3 seasons. He needs help to throw. It might not go far, but he tries!
I value doctors. I trust that they make the best decisions based on the information they have. But I never believe them if they tell me something is impossible.
Don’t ever let anyone steal your hope!
Use this link to the Family Support section for relevant and helpful information on raising a child with a disability.
Over the years, parents of children with disabilities and special health care needs have told us many stories about dealing with bias, unfairness, racism, ableism or discrimination against their child.
Categories: Family Support
As the parent of a child with mild Cerebral Palsy, I learned that the word “hurry” doesn’t apply to my son, Jason. With motor planning difficulties, hurrying just wasn’t something he could do. I learned to adapt and accommodate our schedule to allow extra time. However, when I found myself in the situation of caring for elderly parents & parents-in-law, and our son, I struggled to find the patience I once had with Jason.
Categories: Family Support