I’m not really even sure where to begin. Jeremy came to live with us at 6 months old. We had no idea how much our lives would change at that very moment. There were circumstances we had no control of, and there was this sweet little baby boy who needed a home, and since he was family, I could not let him go into foster care. We never knew of his condition before he was born, and there was very little prenatal care. Well, we didn’t even know about him at all until he was born at 34.5 weeks. Anyway, since I was not there in the beginning, it will never be known exactly what was told as far as his future. I really did not ever imagine being a mommy again as my biological boys are 21 and 23 years old. But I am!
I knew he had been born with SA/CRS only because I work for his pediatrician and I took the initial call from the hospital. I had no idea what that was even though I had been working with and volunteering with children, some with multiple disabilities, for the previous 13 years. I was told he had bilateral vertical talus (his toes touched his shins), and they were initiating a referral to an orthopedic surgeon for his feet and hips and a urologist because of a neurogenic bladder. They said his condition caused similar issues as spina bifida.
He went through the series of casting and then had surgery on his feet at 4 months and got AFOs at 6 months. His kidneys seemed to look good, so he is on a yearly follow-up schedule. That was all great, but what exactly was SA/CRS? I was so lost. He cried the first 2 days, and I had no clue what to do for him. I also work full time, so I had no choice but to start daycare. I searched and searched for some kind of information until finally I came across the Facebook group and asked to be a member. I have learned so much more from this “family” than with most of the doctors he has seen. The only one that really covered EVERYTHING I was asking about was the spina bifida clinic at Texas Scottish Rite. We have the bladder and bowel issues that most of these kids do, but we have a plan for the future. Everything depends on what he can tell us he can actually feel as he gets older, but at least I’m not in the dark.
Jeremy can walk and climb and is starting to run. He is now 2 1/2 years old, and we have a better idea of what to expect now. I’ve come to learn not to let anyone tell me he can’t do something because he will probably do it – maybe in his time, but it will happen. He is the most determined kid I’ve ever seen. I cannot imagine our home without him in it now. We have some friends and family who are “intimidated” by him, but we don’t let that bother us, and it’s their loss. He is a fun-loving, active little boy. God knows who these special children should be with, and I feel very privileged to be one of the chosen.