The end of April marked the one year anniversary of the whirlwind week when we found out our son, Caleb, was diagnosed with cerebral palsy. At the beginning of the week, we had our long awaited evaluation with the county’s Early Intervention Program for some of Caleb’s developmental delays. They stated Caleb’s delays qualified him for services and recommended a variety of therapies. They also suggested a consultation with a neurologist, which made us uneasy. I immediately made an appointment with a neurologist that had the first available opening. As it turns out, we met with the nurse practicioner who alluded to the fact that Caleb probably had cerebral palsy, but wanted us to come back to meet with the actual neurologist later that week. Our appointment was on Friday and by lunchtime we had an official diagnosis. Shane and I were completed devastated. We tried so hard to stay positive but it was difficult. It felt like our whole life changed in that instant. I couldn’t help but picture Caleb’s future and the challenges he would face. We wanted to take that burden off of his shoulders. We never wanted him to struggle or feel like he was different. All of these feelings were completely overwhelming and I lost sight of the fact that Caleb was still my sweet, cuddly, smiley little dude. He always was and his diagnosis hasn’t changed that one bit.
I am amazed at all the progress Caleb has made over the last year. He can now crawl all around, pull himself up to standing and he’s even starting to cruise furniture a lot more. These changes aren’t the result of luck or prayers… he’s worked his little butt off to be able to do the things that he’s able to do. We incorporate physical therapy into our daily activities, which was admittedly hard at first. We were given a series of stretches to complete 2-3 times a day and it took forever since Caleb was resistant and didn’t always want to cooperate. The stretches felt like a chore and I dreaded them, but now, stretches have transitioned into exercises that we can make fun. Cruising on furniture towards his favorite toy seems like a game but he’s actually working on spreading his legs despite the high muscle tone in his hip flexors working against him. As with any activity, once you do it consistently for a long period of time it becomes routine and doesn’t feel like so much work now. Some days we’ll work with him more than other days, but whenever Caleb is just “playing” with his brother he’s still working and using muscles to crawl and stand and throw balls and turn the pages of the book while isolating his index finger. There is therapy in everything that he does and we do our best to encourage him to attempt the positions and movements that are difficult or feel unnatural.
When Caleb was diagnosed he was (and is still) unable to walk but so was Wyatt, so pushing two small infants in a stroller didn’t look unusual. But now that Wyatt is running all around, climbing jungle gyms and zooming down slides, there’s a painfully obvious difference in my identical twin boys. Caleb can maneuver around using a toy walker, but doesn’t have the same stamina as Wyatt so we end up carrying him from activity to activity. This makes it difficult for me to take the boys anywhere alone. If I spend time with Caleb, helping him walk around, Wyatt is sure to wander out of my sight or get himself in trouble somehow. If I carry Caleb and stay close to Wyatt, then Caleb is really missing out on the experience and is squirming to get down and crawl around, which wouldn’t be a problem if all areas were nicely cushioned like the ground at Clemyjontri Park. There’s a lot to consider but for my sanity, I usually don’t bring both boys out in public for fear of another debacle like the day at the Playseum. Yikes! For about five minutes I felt weird about Caleb now having a visible disability now as opposed to last year when you couldn’t tell. Then I realized, I really don’t care! We get a few more stares or at least I feel like we do, but maybe I’m just the insecure one? The only insensitive comments I’ve ever heard were from well-meaning kids:
“Why doesn’t he move his legs?” -little girl at a park who noticed that Wyatt was constantly kicking his legs in the stroller and Caleb’s didn’t budge an inch.
“How come he doesn’t walk?” -another little girl who was trying to play with him and I wouldn’t let go of his hands.
I’d love to say that I had these eloquent, canned answers and turned the moment into a teaching opportunity but I didn’t. I was flustered and basically sputtered out something to the effect of “because he just doesn’t.” So articulate! Definitely room for improvement in that department!
So looking back over the past year, I’ve surmised that Caleb’s cerebral palsy has forever changed our family, but we’ve adapted and overcome challenges and I feel like we’ve come out on the other side stronger than ever. Yes, we still have lots of obstacles and difficult decisions in front of us but I feel so much better equipped to handle them than I did a year ago.
I remember freaking out when we found out that it would be a couple months before we could see a developmental pediatrician at Kennedy Krieger due to a long waiting list. Don’t they understand that he has CP and needs to see a doctor? To me, it felt like the whole world should’ve dropped everything and tended to Caleb like he was a top priority because he is MY top priority. I was desperate to do more than wait around for a doctor’s appointment but I soon learned that Caleb’s cerebral palsy wasn’t going to go away or get better or worse in a matter of weeks and I needed to slow down. Shane and I took time to learn more about CP and familiarized ourselves with the various associations and support groups that are out there to serve parents of newly diagnosed kids. I decided I would write a blog to chronicle our journey in this new “special needs” world. I wrote the first few posts through blinding, hot tears and choked back heavy sobs.
The sting of the diagnosis was still fresh and just when I felt like I went weeks and weeks without breaking down it would hit me in the middle of nowhere; at my desk at work, at the grocery store, sitting at a red light. Usually some sad story of a child bullied by classmates, or worst yet, abused by the adults assigned to protect and support them. It was all too heartbreaking and felt deeply personal, like someone had wronged my own child. I’m desperate to protect Caleb from these injustices, but I know it’s completely out of my hands. All I can do is tell Caleb’s story and hope that the parents (and future parents) out there teach their kids to be accepting of those of all abilities because we ALL have something important to contribute in this life and different does not mean lesser than.