March 25th is the day that was established to bring national awareness to cerebral palsy. Cerebral palsy (CP) is the most common motor disability in children, affecting 1 in every 303 children born in the US. Over 800,000 Americans are impacted by CP. Unbelievably, these numbers haven’t really changed in the last 50 years. You would think with the advancements in medicine there would be more understanding of the cause of CP, but there haven’t been any dedicated studies into the causation or cure of cerebral palsy. According to a report from the U.S. Department of Health and Human Services, $23 million was spent on cerebral palsy research in 2011. This falls far behind funding for other conditions including autism ($169 million), childhood leukemia ($59 million), and epilepsy ($152 million) (source).
Cerebral palsy wasn’t even on my radar over a year ago. Even when the boys were born prematurely and at low birthweights, I didn’t really know the significance of what that meant except an extended stay in the NICU. When Caleb was about 9 months old he was unable to crawl, sit independently or even roll over. I thought he was delayed but would eventually catch up. He was (and still is) so darn snuggly that we never put him down, so I figured he had no use for learning to move around. He qualified for services through the Infants and Toddlers program where we live and they suggested an appointment with a neurologist. The recommendation came on a Monday and by Friday, Shane and I dropped Caleb off at daycare and went to eat sushi where we took turns crying and absorbing the realization that we all had a difficult road ahead of us. It hasn’t even been a year since that day, but it feels like decades ago. I’ve learned and grown, slowly, by putting one foot in front of the other and doing what any parent would do if faced with the same situation.
As chronicled in this blog, Caleb has made fantastic progress through a variety of therapies. He can now crawl, pull to stand and take steps while being assisted by a walker. I thought that this diagnosis would somehow change Caleb, but he is still the same sweet and smiley boy although his new found mobility has made him more independent. His mobility has also made life easier on all of us. He can entertain himself for long periods of time when before he used to be frustrated by sitting or lying in the same spot for a while. His twin brother, Wyatt, has also been such a help to us, often fetching Caleb’s shoes and AFOs when we’re getting dressed in the morning. Just yesterday he pointed to Caleb’s walker and said, “Yay Bubba!”, a phrase he associates with us cheering on Caleb during therapy. He’s starting to understand that we need his help and he’s starting to look out for Caleb, way before any of us expected him to.
Cerebral palsy has played less of a role in our lives than I thought it would. When Caleb was first diagnosed, the news was all consuming. I wondered how life could possibly return to normal, but much like being a new mom, you start to get used this new way of life. My calendar is peppered with therapy appointments in addition to other specialists. Some mornings, Caleb takes longer to get dressed due to his stiff muscles, in addition to putting on his leg braces before his shoes. At night, we strap him into a wedge pillow to spread his legs and help correct his hip dysplegia. Whenever I’m out by myself with both boys, I have to retrieve Wyatt from his carseat first so he can stand and wait while I unbuckle and carry his brother. We’re constantly looking for Caleb’s glasses and constantly cleaning the layer of food that manages to cloud the lenses. We work one-on-one with Caleb every morning and evening since our physical therapy is family-based and we’re taught various stretches and activities. These are the obvious differences between raising our two boys, but it’s our version of normal and I’ve become very used to it. Everything is very manageable right now and for that I’m grateful because I know it might not always be that way. I’m happy to say that we’re in a very good place.
The hardest part about cerebral palsy is the unanswered questions. How exactly did this happen? Why was Caleb affected but his identical twin was not? Will Caleb suffer from any intellectual delays or disabilities? If we decide to have additional children, are they more likely to have CP? No one has any clear answers. The lack of research is maddening but not surprising given the economic climate. I’m hopeful that we will continue to learn more about this disorder so parents like me aren’t waiting for answers that may never come.
If I can offer advice to anyone whose child was recently diagnosed is this: allow yourself time to be sad and even feel sorry for yourself and your situation. Surround yourself with supportive friends and family who allow you to vent your frustrations and also remind you of how far you’ve come. Lean on your partner when you need to and let them lean on you. Seek out the best medical team and get second opinions if necessary. Educate yourself, but if something you read upsets you… stop reading. When you’re having a bad day, look to your child to cheer you up. Caleb is so much more than his diagnosis! He is a sweet and silly little dude that is passionate about Elmo, banging things together and pancakes. He laughs like an old man and is just learning to pucker up whenever I ask for a smooch. His porkchop feet and dimpled knuckles are so irresistible. He’s a houdini at the dinner table, often dropping vegetables behind his back for us to discover later. Oh and yes, he has cerebral palsy, much like he has blue eyes and serious thumb-sucking habit. It’s a part of our life, but it isn’t our whole life and I would encourage others in my position to keep it in perspective. Remember to celebrate the abilities and not the disability.