It’s not like I wanted my son to have a label that meant he really had a disability. I didn’t want my son to have any struggles. I wanted him to be healthy, strong, and independent. I wanted to read Babycenter with enthusiasm and get excited every week as I watched him meet the recommended milestones I had read about. I didn’t want to know the names of specialists and I certainly didn’t want a diagnosis for him, until I did. Until I felt like he really needed one.
Grey’s second pediatric neurologist finally ordered an MRI for him when he was three years old after me asking for answers for two and half years. (As I have mentioned in other posts, we proactively engaged Grey in early childhood intervention/physical therapy when he was six months old). The MRI showed Grey had a brain injury on the right side effecting white matter. I was told that the brain injury was insignificant and that the type of injury he had wasn’t correlated to a particular diagnosis. Hmmm… pretty sure any brain injury is significant. To me, it certainly was. It was the reason why my baby could barely use his hands, talk, and move…. and so on and so on.
The news of the brain injury was sad to hear. But, I already knew something was wrong and I was relieved to finally have a better understanding of what was going on with my Grey, as bad as that sounds. What was worse than finding out that Grey had a brain injury was still having a question mark as to what to do to help him. “Keep doing what you are doing” was all I got. That didn’t seem like enough to me. Even more frustrating was when I told Grey’s pediatrician (the one we have to use for insurance purposes) that he had a brain injury and I wanted a referral to a different pediatric neurologist who specializes in working with children with brain injuries, she told me that she felt it was more appropriate to refer him to a geneticist. Do genetics cause a brain injury? I reminded her that he already had genetic testing completed at Children’s of Dallas and the results showed no issues. Terribly, terribly frustrating.
So, I went back to Grey’s Texas pediatrician after finding a pediatric neurologist at Cook Children’s Hospital that I felt would be a good fit for Grey. Thankfully, the referral was made and accepted.
On February 13, 2018, my son was assessed by a doctor who took the time to actually observe him do functional activities – like run down the hallway, climb on a chair, step down from a stool, talk, high five, eat, etc. Dr. Jeffery McGlothlin listened. For the first time ever, I felt like a specialist didn’t look at my son with “it could be worse… I don’t have time for you… just go home”. He asked to review Grey’s MRI and then he said “your son has cerebral palsy”. He told us that it was mild and that considering Grey’s brain injury, he was doing remarkably well. He told me it was evident that we had gotten Grey help. He went through treatment options. He listened. He waited. He watched. And for once, I was speechless. So many emotions came over me, but I looked at my little boy and thought, “It is going to get better. We can do more for you now.” The clinical diagnosis now attached to my boy meant we knew which road to go on, per se, and though it was scary, I found hope and relief in knowing the right direction to turn. Having a diagnosis not only helps to define more appropriate interventions, but it also helps Grey receive services he truly needs in school and life to reach his maximum potential. Dr. McGlothlin, assured me that Grey would have access to resources he needs much easier after that day.
Cerebral palsy refers to a group of neurological disorders that appear in infancy or early childhood and permanently affect body movement and muscle coordination. Cerebral palsy (CP) is caused by damage to or abnormalities inside the developing brain that disrupt the brain’s ability to control movement and maintain posture and balance, according to the National Institute of Neurological Disorders and Stroke. The term cerebral refers to the brain; palsy refers to the loss or impairment of motor function. Cerebral palsy is very complex and can affect individuals differently. There are several different types of cerebral palsy. I still have so much to learn about CP.
I cried the most bittersweet tears on diagnosis day. When I called my husband to tell him about the interaction, it was almost as if we were talking about completing a marathon that I had started to feel was impossible to finish. I know that might sound very strange, but after asking for my son’s delays to be seriously observed and researching, wondering, worrying, and feeling absolutely frustrated for over four years, I felt immense gratitude when we were finally heard.
For any person reading this who is sharing similar struggles, I encourage you to not give up. Fight. Fight. Fight. Most caregivers are not doctors and we aren’t equipped to understand the clinical significance, reasons, or whys regarding the struggles our kiddos have, but we do have the opportunity to play one of the most important roles our children will ever need – advocate. No one knows a child like their caregivers. A doctor simply doesn’t have the time to see and observe all we do. It is our job to speak up, however that may be.
My baby is John Greyson Keese…. Greyson, Grey, Grey Grey, tiny tyrant (ha!), brother, silly goose, buddy – our ornery, precious, adorable boy. He is not cerebral palsy. He is affected by it. He is perfect to me.
With Love,
Sara
Source: https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Hope-Through-Research/Cerebral-Palsy-Hope-Through-Research