It snowed on Saturday, and on Sunday I was hot in my light weight hoodie and tee shirt. Ah, spring in Illinois. The weather emulates how I feel lately…. One minute I have my ducks in order, the next is total chaos.
Life has a funny way of throwing you for a loop, right when you start to feel like you have your shit together.
About two months ago, my oldest was diagnosed with Perthes disease. If you are like me and have never heard of this rare childhood condition, check out this link from the American Academy of Orthopaedic Surgeons: https://orthoinfo.aaos.org/en/diseases–conditions/perthes-disease/.
Ryan had been dealing with intermittent left knee pain that we chalked up to growing pains – he IS a 4 ft tall 1st grader and we had been warned that this was normal and to be expected with his height. When his limping did not go away after over a month, we finally took him in. X Rays of the knee showed nothing wrong, so we ended up at the pediatric orthopaedic specialist for additional help. One xray of the left hip showed us all we needed to know, and he got an immediate diagnosis of Legg-Calve-Perthes.
We are grateful that the overall prognosis is good for this rare disease, as many families surely receive worse news than this. However, since the disease process takes years to work through, we have been grappling with some of the side effects and lifestyle changes. No gym, no running, no jumping. Physical therapy 2-3x per week. Immediately we had to quit baseball, basketball, and soccer. Luckily he can still swim, but for a 7 year old kiddo with ADHD that is assisted greatly both socially and mentally with physical activity- this was a tough pill to swallow.
He has been taking it better than we have. Meaning, he completely ignores us and continues to try to run and jump around like a new puppy. It really does remind me of a dog after surgery – how do you keep it from running, licking, and jumping?! I can’t very well put one of those anti-licking collars around his neck and hope that calms him down. It is frustrating.
I took the kids to the park a couple of weeks ago and had to remind Ryan several times to stop running. I am sure the other parents there were like, “Who is this horrid mother who won’t let her child run and play at the PARK?!” The kid still needs fresh air and to play with his little brother. It is totally weird when your child appears to be healthy but is not on the inside, and noone has any idea what ‘Perthes’ means.
Hence, the feeling of a false spring start in Chicago: Just when life was looking up – BAM! It socks you in the gut with a late winter snow storm. We are now looking at a 504 to support my son in school over the next couple of years. I am both grateful for the opportunity, as well as exhausted thinking about the research and energy needed to comprehend the coming changes and advocate for my son. I am terrified of possible surgery in the future; Let’s be real, this kid CANNOT be non-weight bearing for 8 weeks. Psshhh.
After the first few weeks of absorbing the news, we are all doing better and adjusting to the new normal. I have mentioned many times before in my blog how life is all about altering your perception. I understand that more now than ever, and am so very appreciative of the little things in life like support, a simple act of kindness, or a good belly laugh. A friend from high school even connected me with another mom who has a son going through the same thing. We have never met, but it reminds me that we are all more intertwined than we know.
Just do me a favor and if you see a mom yelling at her kid to not run at the park, withhold your judgement for a hot minute. You never know what another is going through. And if you happen to randomly know someone who has struggled with this rare diagnosis like my friend did, please do send them my way! The best way to get through life’s tough stuff is together.