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July 18, 2017

The Shocking Truth about this Special Needs Mom

HorizonI’m greedy. It’s true.

In the beginning I would sit in the hospital at night and cry in exhaustion and terror over what was happening to Gus.  I just wanted to get off this crazy merry-go-round.  There were years when the hospital’s ER door was as familiar as our own front door, and it seemed like Gus was constantly being admitted for one malady or another.  We would get home, get settled, and go back to be re-admitted.  I would have given my right arm to spend a month at home without an admission.  Gradually, the years passed and the spaces between the admissions and crises have mercifully grown until they seem like they are no longer right around the next corner.  We don’t talk about it at our house – we consider it bad luck – but his last admission was 8 months ago and the one before that we almost made it to a year! But honestly, it never seems like enough.  I always want more.  I’m greedy like that.

The last 7 months has been an incredible time for Gus.  I truly do not know what has happened but suddenly (after 10 or 11 years…) so many things have begun to turn around for him.  I see more and more of his personality every day.  Chronic pain – definitely the worst issue he faces – has relented quite a bit.  I don’t know why but I know that I am beyond thankful.  Seeing your child in horrible pain all the time – the kind of pain that infects every aspect of your life until your sweet, happy-go-lucky little boy is sullen and even mean -- is a very slow and awful torture.  For no apparent reason, certainly not medication-related, the grip that pain has had on him for so many years has loosened.  But I’m greedy.  I want NO pain.

We went on our first successful trip EVER a couple weeks ago. We went to the Oley conference in Connecticut so that I could have an exhibit table for Gus Gear there.  Previously, travel was not even a possibility because of Gus’ health.  Gus is 13 and this was our very first enjoyable overnight adventure. We waited a long time for that. We attempted a short trip last summer and it was a disaster.  To put it bluntly, it was an unforgettably horrible experience for the whole family.  But whatever has happened in the last several months has made travel possible.  It was exhausting for Gus – he has autism and this is a new experience for him so it really takes a lot out of him – but it was great!  But I’m greedy.  Now, I’m thinking….maybe we could take an actual vacation?

There were many YEARS in the last decade or so when I thought I would not be able to go on simply from sheer exhaustion.  Gus has been a terrible sleeper since he was about 2 and autism came into the picture.  Poor sleep is a fairly common complaint for autistic kids.  But I feel quite confident saying that Gus was somewhat exceptional in this respect.   People would ask if I had tried Melatonin for him and I would laugh hysterically (mostly from sleep deprivation).   What we were giving him just to get him to sleep are meds generally used for anesthesia.  Really.  The bedtime med cocktail he was getting was scary.  The pharmacy in the hospital often would not dispense all of it when he was inpatient because it was so far outside the normal scope.  But, you guessed it, Gus’ sleep has improved.  We do probably have a medication change to thank for beginning to turn his sleep around, but I think it only righted the ship for us.  Getting us back to shore has been the result of this global improvement Gus has had.  I have been able to completely wean him off the scariest of all the meds he was taking and greatly reduce several others.  His bedtime cocktail is still pretty far outside the norm even for those with chronic sleep problems.  And I am greedy.  I want more.  I want to see him off most, if not all, of them.  It’s greedy.  I should just be happy with where we are, and I really am.  But I want more.

Honestly, a lot of what has happened in 2017 is like a miracle.  (Yes, we still deal with intestinal failure, TPN, autism, being non-verbal, et al.)  Last year at this time I never could have imagined seeing so many smiles and hearing LAUGHING nearly every day from Gus! We were in a pretty dark place last year without a lot of hope.  Now, Gus is able to tolerate instruction and practice in highly non-preferred areas like PT.  He is actually feeling good enough to DO things and improve his skill deficits. All the decisions I have made for his care have always been about quality of life and I feel like he finally has some!  I don’t know why things have finally improved, but I am so grateful. And greedy.  I want MORE.

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