The hardest part of my medical case

I think the hardest part of dealing with my medical case over the years, was my own denial (if I had to find one thing that set me back the most).

Because of the abuse in my childhood, I blocked out those years, and my medical care got blocked out along with it…

I think that’s what ended up hurting me the most…

Noah got home from summer camp (in the woods for a week), and he was talking about how one of the campers in his cabin was sick ‘but I made sure to stay away from him Mommy, because if I had gotten too close, it would have been me blowin’ my nose in tissues for the next two weeks…’

And the way Noah said it–just like how I like to handle things–with a smile and a little sarcastic nod–

In that moment I realized he gets it. He gets it. Noah gets it, at 13 years old, what it took me until I was 35 years old to get.

We just have to watch out a little bit. We can still live life, we just have to be careful.

I remembered when I asked my uncle (2007? 2008?) “at one point in your life, did you realize what you had was serious, and that you were always going to have health problems”,

And instantly–without hesitating–he replied,

“Tara, I always knew. I watched my father grow up going in and out of the hospital my entire life, I just always knew what was wrong with him was wrong with me too.”

Then he told me about how his bird was taken away when he was a young boy, because the doctors said it gave his father a weird bird infection…

Because my parents divorced at a young age, my mother was completely neglectful (how good can anyone do giving birth at 19 years old?), and then my step-fathers abuse,

I just deleted it all away…getting sick, that was just part of my abusive past. No, I wasn’t going to be sick. I was going to live this wonderful and beautiful Hollywood dream. After the hell I endured, that was going to be my happy ending, right?

And it almost killed me. If I had had records, fuck–if I had even just been honest with the first doctors who had started to help me in 2005–I even had a doctor when I was child tell my mother something was very unusual and wrong–it wouldn’t have been such a rough road…

But Noah gets it…he’s not living in the darkness. And he has a healthy attitude about it too (as healthy as one can have about these things),

you can live your life, but just be aware, just be cautious, take it one day at a time…don’t obsess about problems you don’t have, just conquer the ones you do have, one step at a time—

I am super super super grateful to God, the universe, Joe, you, and everyone on the planet who helped me live long enough,

so Noah won’t ever, ever, hit these roadblocks I endured…

(Besides the fact my denial almost killed me, I lost valuable time–years maybe even–that could have been spent in a better way if I had been more prepared, more prepped, for how to live life with a compromised immune system–

Noah knows the journey will be stormy in front of him, but that doesn’t mean it isn’t a journey worth living–it just means get your life jacket on, be smart about it,

and find beauty in the waves…

About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
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