To Dance and be silly and have fun with life because that is such a better option than being miserable. I don’t even think this kid knows how to be in a bad mood… I am envious… I want to be more like that… and he is teaching me how to do it!
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Why I’m writing about Lennon again
If you have been hanging around my world, you may know that Lennon is doing incredibly well healthwise. We’ve not had any setbacks since 2014 or any other complications. What has happened however is that at the beginning of this year (2019) he was officially diagnosed as autistic. And that he just started 10th grade and we are getting closer to adult transitions and it’s a bit daunting to think about what that may look like for him, for us. We don’t really know. So currently we are in therapy to gain some skills to maneuver social settings, advocating for himself and learning other independent living skills. In a few years, we will be deciding on power of attorney or guardianship an I am slowly…
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The kid’s tough!
It’s been just over a month since Lennon’s surgery and he looks fabulous. It’s like he actually has a 6-pack.. but seriously he has a stomach and not some bulge anymore. His scar is healing nicely – well it is healed at this point. There is some bruising on top that may be from some fluid that shouldn’t be there and it’s just being “watched” at this point. We did notice a decline in Lennon’s appetite, which is also supported by the weight loss. He’s at 55/56 lbs and really should be 60/62 lbs. The discussion is, of course, to give him an appetite enhancer although I am not sure that increasing his appetite is really the problem. I am noticing that he wants something…
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Transplant Anniversary
He loves Felix the Cat and Sonic – but this changes from day-to-day. He loves video games and wishes he was old enough to play Halo. He wants to be like Caillou and has a cat named Gilbert. He loves his dog Sgt. Pepper and playing with Lego’s is his favorite past time. He loves to dance – wild and crazy and snuggle with his mom. He loves going to school and loves the weekends just the same. He talks about his best friend and how he wishes they had more time. He draws pictures anytime he can. It’s Lennon’s 2 year transplant anniversary from his last transplant. All the things above I wouldn’t be able to share with you, had he not received this…
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We celebrated Christmas with anxiety and success
We celebrated Christmas with anxiety and success but every year it’s the same! Lennon gets anxious about what he will receive. In the past, Christmas was met with shutting down and tantrums. The challenge we face every year is that he has expectations because that is how his brain works. And when those expectations don’t happen, he struggles. He doesn’t mean to because, at the end of the day, every Christmas is the best Christmas ever. This year, this year was different. This year, he had the forethought to know he may need help with his emotions when we open presents. And I give thanks to therapy and his therapist to help us maneuver this. This year was different because he was able to receive…
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Things I thought I never had to do as a parent
When I first became a mom I thought about the conversation I would have with my kid. I dreamt about telling some of the crazy stories from my own childhood minus a part here and there. I dreamt of happy and healthy children, who would have amazing careers and create their own little families. What I didn’t envision is that one of my kids would be ill and that he would eventually be able to tell his own amazing yet scary almost unbelievable story of going undiagnosed for 4 years and three transplants later. And yet in all those 22 years of parenting and 11 years of being a special needs kind of mom, I never thought I would have the conversation about taking too much…
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Privileged
After an actual day off, I found myself in the company of Lennon. I was sitting in my office/studio knitting away when he said to me: did you find the clay mom? I really want to make my Minecraft clay character. I, in fact, did have clay but thought I show just start his own collection of clay to use any time he would like to and time allows. So in what was a quick decision, he and I sprinted to Michaels. During the drive, I was privileged to see into his world through his eyes. I mean I do hear often how he and his brain work, but I am not always able to take it for one reason or another. Anyway, he definitely…
