This story isn't ending...

The last time I blogged, Hunter was 10 years of age.  He had turned double digits and was writing history with his tremendous recovery.

Insert a Diabetes diagnosis in the fall of 2021, a pandemic that left us in fear for his medical stability, as well as isolation from family and friends to keep him safe.  We encountered some who didn't understand or support our decisions, and unfortunately, those friendships did not withstand the test of the unknown. However, within our small bubble of a city, we did solidify who truly stood by our family and were still there when the vaccinations were approved for all, the masks started to fade, and we slowly re-entered the social realm of the world.

My dad passed away this year.  He was only 73, and he died after a 3 week stay in the ICU.  I still can't quite comprehend his death and the permanency of it- is he really gone?  I have been walking through the stages of grief and although I have never lost a parent before, the stages are oddly similar to losing Hunter's normalcy.  Feelings of sadness, anger, regret; feeling like I didn't do enough or say enough or push enough...I try to take the thoughts of "what could have been" out of my mind, but these big milestones like a sixteenth birthday make me wonder what today would have looked like if he never had fallen ill with encephalitis during that critical period of development. Would he be driving away in his new car to meet friends, head to his sports, or be getting ready for a big party?

Each year since I stopped blogging certain circumstances would trigger my grief and it often came without warning; seeing a post from a friend whose child attended homecoming, knowing that Hunter would never have that experience; watching Paige start relationships with boys and wondering if Hunter would ever have reciprocal feelings for a girl; and now, at 16....no permit, no license, no party- only a Disney movie at the theater with his parents and siblings,

It feels almost full-circle, sitting here with my praise music in my ears, typing away at a keyboard to try and take away the hurt...it makes me wonder where the last six years went? Over the last week, I have started to read my previous blog entries, and I can't believe how many experiences I have either forgotten or blocked out of my memory.  I sat with Peter last night and read him one entry describing night terrors from a simple star sheet on Hunter's bed; so many entries of him melting down, crying and screaming at school drop offs, running from our attempt at organized sports.

But there was also SO.MUCH.GOODNESS within the blog.  I rewatched a video of Hunter with a magnifying glass acting super goofy and cracking us all up; I read about the time I snuck upstairs during rest time and found Hunter asleep with his arm over Paige, snuggling together in her bed; and the first time we were able to sing "Happy Birthday" to him on his fifth birthday after starting our steroid bursts that marked the beginning of overtaking his immune system.  

"His 2 year old party was the first time we saw an issue with the noise (7 months post-initial infection).  He cried throughout his entire song and I remember standing there, baffled, as he had smashed his cake and giggled in excitement at his first birthday party.  His 3 year old party was at an old church turned into a playground.  We didn't even attempt to sing that year.  Last year, when he turned four, we practically whispered the song and he was a crying mess. 

Lucky number five.  We did it."

And here we are- his SIXTEENTH birthday.  It breaks my heart if I think that Hunter feels isolated and lonely.

But looking at this tall, 6'2" handsome young man- he has a smile on his face, he loves us immensely, and I know we have done the most we could do without a handbook for Autoimmune Disease and Autism.  

We didn't recover him completely. 

But he's here, he's healthy, he's succeeding in school with support, and he talks openly about becoming the first Pixar Animator with Autism. 

Happy sweet 16th, my little warrior.