People sometimes ask me how Max is doing, and I often feel
they leave the conversation perhaps confused because Max
is…sigh…complicated.
In many regards, Max is fine. He’s able to attend school. He seems happy. He still smiles and laughs and is in no real pain, but Max is also tired. Just very tired. After the hospital stay last April, despite ongoing physical therapy, he mostly lost his ability/motivation to crawl and his ability to sit up on his own for more than a few minutes. He can stand with support, but only for short periods of time and you can tell it exhausts him.
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| Max showing off during a recent Make-A-Wish event |
Instead, he tends to spend the majority of time that he’s at
home curled up on the couch or in our laps, usually asleep. We’ve tried to embrace the new normal,
enjoying the endless cuddles and an excuse to just sit and rest, but watching
your son lose the little skills he worked so hard for is always tough and
mentally exhausting.
Max is 11 and we’ve been so lucky that he’s been as healthy and active as he has been able to be, but this disorder is relentless and the prognosis absolute. And who knows – we may enjoy Max’s cuddles for years to come, but there are aspects of him that we’ve already loss. It feels as if we remain in a perpetual space between relief and grief: relief that we are no longer trying to manage the challenging emotions and habits of a sensory-starved child and grief over the loss of that special personality and interaction. This creates a difficult message to convey when people ask “how’s Max.” So instead, I write it here, hoping you won't interpret this as a reason to refrain from asking. Please do ask. Just don’t be surprised if the answer is simply “Oh, he’s fine” as that may be all I can manage on certain days, but your question and compassion is genuinely appreciated.
And remember, if you ever find yourself needing a cuddle partner, Max is always willing and ready.
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| Max's favorite napping partner - Ginger |
The 10th anniversary of our annual event, Tee It Up! for the GFPD, will be May 15th and 16th. It'll be such a wonderful opportunity to celebrate Max and honor the incredible community that loves and supports him! Please join us for our happy hour at Destihl Brewery and Beer Hall from 5-9pm on Thursday May 15th. If you've never attended - this should be your year! Drop in for a few minutes or all night! Tickets are only $30 and available here:
https://givebutter.com/c/teeitup25. We can't wait to see you there!
