When I look at my son I see a happy, lively, extremely kind kid with a spirit that is sweet and miraculous. He is every bit the gift from God I prayed for.
I see his love for music, his keen sense of sound, and his ability to entertain himself just long enough for mommy to rejuvenate after I get home from work. I see the skeptic in him, how he analyzes all toys (and people) that are new, to ensure that they are worth his baby time and effort. I listen as he laughs hysterically at the most random of commercials, yet cries inconsolably at the first note of the Star Spangled Banner.
I see the fun he will have in the future riding bikes and playing with his best friends DJ, Brandon and Chase. I see him throwing basketballs into hoops with his dad. I hear him having deep revealing conversations with his grandma. I envision him spending hours with science kits, and figuring out new ways to enjoy old things. I see him being this brilliant kid who will amaze the world with his determination, a determination he perfected as a child overcoming the hardest challenge of his life.
That darn Cerebral Palsy.
When doctors see him that is what they focus on. They have this chart that tells them what he should be doing by his adjusted age of 18 months. They have this pen they use to make checks next to the developmental skills he has mastered. Already, according to them, my child is not passing the standardized test. They make notes and increase therapy. Their degree in medicine is respected, but my degree in mommy must make its presence known. Even though their tone is optimistic, I still need to set them straight if they are going to play on team Jharid Jr. I value their notes and their checklist, but they must value my vision. My son has benefited equally from both.
I have no problem explaining to medical doctors how I have enough faith not to let a cerebral palsy diagnosis impact the way I dream for my child. Of course I listen to the doctors and ensure the therapy is maximized but after I leave their office, those two words have no power in my home. We don’t accept labels that sound horrible but truthfully describe a wide range of complications. And honestly, we don’t use labels that don’t feel right for our son.
Cerebral Palsy (CP) is a general term for a group of permanent, non-progressive movement disorders that cause physical disability in development, mainly in the areas of body movement. CP is caused by damage to the motor control centers of the developing brain and can occur during pregnancy, during childbirth, or after birth up to about age three. Cerebral Palsy can present itself in various ways in children; some have severe CP and others have CP that is hardly detectable after a few years of intense therapy and work. The kind Jharid has was caused by grade three brain bleeds as a result of his premature birth. In the NICU, the doctors said that those brain bleeds could dramatically impact his way of life. They said a lot of things that we did not accept, including that he would not live. And did we not leave that hospital with a healthy, happy boy? Yes we did! We have been defying labels since breath one.
Jharid is almost two and not walking or crawling or talking. True. But he is getting there. He has the desire to run a marathon (momma knows). He is holding himself up and rolling and doing things today that he could not do three months ago. We are a patient, praying family and he is a very willful child. He has preemie power, and that is the only label I feel comfortable allowing him to wear. It tells the story of his birth and of God’s grace. Any other label or limit imposed by the medical world we answer with a confident, “God’s got this”. Parents, we know our children best. Isn’t hope within our parental rights?
Parents you have the special power to focus on the healing and not the labels. Labels are put on and fall off. But faith never wavers. Choosing not to let them define your child doesn’t mean you aren’t accepting the present circumstances. It means that you see beyond them. Your child can do anything. And if God positions in your spirit a certainty of triumph, trust it!
My son has Cerebral Palsy? Please. Here on Team Jharid, we are just taking our time and enjoying the ride.
How do you feel about labels for your child?