It’s been over a year and a half since our son was officially diagnosed with spastic diplegic cerebral palsy, a diagnosis that we knew might occur after his early birth at just 23 weeks. We weren’t shocked at the news; we have tried to continue to remain positive. The neurologist that gave us the news listed all the things our son Antonio may never do: like walk, talk, and other things we tend to take for granted. As hard as it was to hear the things that Antonio may never do, the harder part was (and still is) the fear of the unknown: The fear of what struggles Antonio may face as a young boy, teenager and into adulthood.
We learned early on in Antonio’s scary NICU days to take life day by day and try not to get too ahead of ourselves, however at times the unknown will hit me. Like when I find myself driving Antonio around to his appointments. Will he be able to play any sports? What if he doesn’t ever speak? Will he need assistance for the rest of his life? The future of a special needs child can be very scary, but I try my best to stay in the moment and remind myself how far he has truly come.
People ask questions about Antonio, and currently people ask us if Antonio will be able to walk. If you are asking today, at 3 1/2 if Antonio can walk I would tell you “no”. He is, however, able to crawl which did not come until after his second birthday. But the truth of the matter is when it comes to the future, no one really knows. Of course, I dream of Antonio walking, talking and being able to eat with his peers, but I also try not to focus on what he cannot do and rather what he can do. I find in my conversations with other people that when they ask if Antonio will be able to walk, that they are missing the biggest lesson. Antonio was born way too soon and had less than a 10% chance to survive. He fought for his life for 141 days, then was diagnosed with Cerebral palsy and other conditions. We learned early on in our NICU days and even throughout many hospital stays, that we celebrate WHAT Antonio is doing today. It’s easy to get caught up in where he is and where we want him to be, but that will weigh you down, If you sit back and live in the future, you are missing the many blessings of today. Today we have a happy little boy who loves to eat his hands and play with musical toys. A boy who doesn’t love to sleep, but his smile and laugh will melt your heart.
Currently, we live in a society where everything is so instant. If we want an answer to something, just simply google it on your phone. The future of a special needs child isn’t that easy; it can be a scary place with so much uncertainty. But we cannot rush a child in their development, especially when we truly do not know what they are capable of. My son is the one in charge of his destiny and of course, as his mother, I advocate and try to give him the best possible chance. But I do not get caught up in when Antonio will walk or talk, but rather I get caught up in the happiness of my son. My main goal as the mother of a special needs child is simple, that my son is happy and has some independence, however it may be. Who says walking is independence? Pushing yourself around in a wheelchair is beautiful independence to me.
I believe that to avoid the fear of the unknown lies in our perspective, to stop getting so ahead of ourselves and to reflect back on our journey. Some of life’s greatest gifts were not created overnight; it takes time to get where we are going. It is no different for a special needs child;they too need the time to get to where they are meant to be. So the next time someone asks a question like if Antonio will ever walk, I will remind them of what it took for us to get to today. And that with the right perspective, blood, sweat, and tears he will get where he’s destined to be!