It happens nearly every day, most every time I’m out with Joel, someone comments on his calm demeanor and big brown eyes carefully sweeping the room. She usually says, “Oh, how old is he?” and then expresses astonishment that any 2.5 year old would happily stay seated in a stroller or cart. Usually I just smile and reply with some variation of, “He’s a peaceful/calm/chill guy/fellow/man” and go on my way thinking that I should come up with a better phrase. But today the casual observer (who just may have been an angel in grandmotherly disguise) at the library answered my “He’s an observer” with her own “Well, that’s what makes them smart.” And I swear I stopped breathing for a second because I’ve wondered if anyone (other than our family) will ever think Joel is smart. I looked that sweet woman in the eyes and said “Yes”. Sometimes I think my mom has a whole battalion of guardian angels at her command.
The rest of our summer whooshed by, and we are happily (some of us are downright gleeful, even!) settling into our school-year groove. Big man just began his final year of preschool, and little man’s new session of “school” therapy at Perlman started last week. Each of them are thrilled to have best buddies in their classes again.
Joel’s PE tubes placed this summer seem to be doing a fantastic job. His ABR hearing test done during sedation checked out perfectly. I know I’ve mentioned it before (and I hope to say it many times again), but we will simply never tire of hearing the word “normal” when discussing test results! He seems to be hearing more subtle sounds and is making more sounds himself. Words are definitely coming along, although he is still pretty quiet in a large group or a busy environment. Unless he has a reason to complain…then he certainly makes his opinions known! His sign for “all done” is especially clear!
We also began the process of ordering Joel some of his own equipment. Our main priority is his first wheelchair as he becomes eligible for our school district’s preschool when he turns three this winter. A wheelchair with a tray will enable him to participate in classroom activities while giving lots of support. We are also looking at our own wheeled stander and a supportive bath seat. As always, we are so thankful to be a part of the Perlman Center at Cincinnati Children’s. Their help in evaluating, loaning out, and helping educate us about Joel’s various equipment needs has been invaluable.
As we are continually searching for services, assistance, additional therapies, etc. for Super Joel, we realized that it could be helpful to have an official diagnosis of Hypotonic Cerebral Palsy added to his chart. It’s our hope that this additional label will open more doors for our little guy. At the very least, CP is something most people have heard of!
Must insert a CP awareness video done by one of our favorite families we’ve met this year…love it!:
Every so often I am surprised, and sometimes shocked, at the thoughts that pass through my head on this journey. Some are more universal than others, I suppose. The following are my top ten thoughts I never thought I’d think:
10. My minivan is a super cool, sweet ride! (No offense to van-lovers…I just truly never thought I would be one. I was wrong. So wrong.)
9. I can’t wait until my little guy gets his first wheelchair! (It will surely take a long time, but when it arrives it will be shiny and red. And the wheels might just light up when they spin.)
8. Children’s Hospital is our second home.
7. Why oh why didn’t we buy a ranch home??? I really didn’t want to live in a ranch because I wanted something I thought was more architecturally interesting at the time. That was before…now it would be so convenient and I’ve changed my opinion. (Many apologies to our realtor friend because I was super annoying!)
6. Somehow I landed the most amazing partner for this journey. I could go on and on, but I’ll sum it up with the fact that he entertained the kiddos and made dinner while I took a nap yesterday. I’m not shocked, mind you, I knew he was great when I married him, but he is thousands of times more phenomenal than I imagined. He is the best dad for both of our boys.
5. Most days, parenting my “typical” child is far more stressful than parenting my “special” child. It could be because #1 son is just as headstrong as I am and might be the “one just like you” my mom always muttered about me having one day. He mostly makes up for it by being a really awesome big brother.
4. People are unfathomably amazing. We have met dozens of therapists, doctors, nurses, and other families because of Joel. I can’t imagine our lives without them. And we have family and friends who have loved Joel since the day he was born (probably even they day they heard he was on his way) who truly don’t care about the number of grooves in his brain or his eventual abilities. He’s just Joel and he’s loved. (He also looooooooves Grandpa!)
3. Perfection is boring. (Seriously, this took me a ridiculous amount of time to learn.)
2. I occasionally make basic errors in subject/verb agreement and other grammatical mistakes because I write and edit too quickly, in short bursts. (Soooooo painful for me to admit!) Full disclosure: I was/am/will always be (even if I never have another class of my own) a hyper-critical English teacher.
1. I wouldn’t change a thing if I could!