Un-simple Minds

October 28, 2018 at 2:27 pm 1 comment

Since we arrived back on the correct (for us) side of the Mississippi five years ago, life has been interesting to say the least. C developed two frightening health conditions almost on top of each other. It’s hard to say which one scared me more.

First, pancreatic insufficiency, which means the body can’t absorb fat, and causes the “failure to thrive” diagnosis that follows C around. There’s five diseases that cause this in children: three are fatal in the first year, and the other two are life altering and cause death far too young. C tested negative for both, and his docs were perplexed. They started him on $3,000 per month digestive enzymes that insurance didn’t cover, of course. We were fortunate that the social worker at the local children’s hospital slipped us samples under the table for the better part of two years. Bless her. C gained weight, grew an astonishing amount, and seemed far healthier than he ever had.

Then he started vomiting. Constantly. He would have an episode that lasted for a week every three weeks on the nose, and he would heave 40 times a day – he would somehow often keep food down but just retch. It was bizarre. We were at the ER so many times the docs and nurses started to recognize us, and C was hospitalized several times in an effort to diagnose him. “Cyclic Vomiting Syndrome” was where they landed. Yes, it is a thing. No, you don’t want to know about it.

We never received great answers, and in the end, C’s GI doc decided it was all in his head and removed all treating medications for CVS. Unfortunately, this occurred at the end of a seven day hospital stay, and the vomiting continued for over a month after that. Needless to say, C’s psychiatrist quickly put him back on the meds, things calmed down, and we never saw that GI doc again – another in the long list of doctors along C’s path that we have dumped.

It was during this time that I realized life with C was never going to be simple. I’m not sure why it took me 15 years of his existence to come to this conclusion, however. Nothing had been easy thus far, but somehow I think in the far recesses of my mind I thought he would outgrow his autism and all that came along with it. Like we were just play acting with a myriad of diagnoses that would all eventually simply just fade away. It seems silly when I look back on those feelings as I am definitely on the other side of them now. Reality, acceptance, giving in, giving up – call it what you will, but I’m there. Kicking and screaming the whole way, but I have arrived. Better late than never.

Entry filed under: autism. Tags: , , , , , , , , .

A Pain in My… You say “potato,” I say “potahto,” but let’s NOT call the whole thing off.

1 Comment Add your own

  • 1. Scott  |  October 28, 2018 at 4:47 pm

    Another case that triggers Kubler Ross and David Kessler’s five stages of grief? Denial, Anger, Bargaining,Depression…Acceptance. Renee and I certainly went back and forth between those stages both with Calvin and with his drug addicted mother.
    (And me with Shingles ….. )

    Reply

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