I can never die.
Now listen, I know the reality is that eventually I will, despite the running and the elliptical machine I love and the yoga and the 32 ounces of water I (sometimes) dutifully consume daily. At some point, my heart will cease to beat, those aged neurons will stop firing in my brain, and it will no longer matter how much broccoli I ate that week (probably a lot). Death comes to all of us eventually, and while I’m pushing for that centenarian age that many of my relatives have come close to achieving, intellectually I know it will come.
Emotionally I’m not so cool with it. You see, I have a severely disabled son.
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He needs me until the last moment his tender heart ceases to beat.
I would be lying to you if I told you I thought about this all the time. I have tried to relegate this reality to a back shelf in my brain, knowing that if I thought about it all the time I’d be permanently ensconced in the fetal position, which won’t get the laundry done. There’s no point in torturing myself, and quite honestly I can go days before his sobering reality crosses my mind.
With autism there are plenty of other things to occupy my brain.
At some point down the road we will have to make some big decisions regarding Justin’s adult life. Eventually my husband and I will be too decrepit to handle my someday close-to-six-foot son and his needs, and since his little brother has stated for years he’ll visit his sibling but doesn’t want to take care of him (he gets how much work it is) we will be looking for a residential placement for him. I have ambivalent feelings about this impending decision. On the one hand, since I know it’s inevitable that he will need to sleep somewhere other than his under-the-sea room I have a certain acceptance level about his relocation. I could even tell myself that in theory, (although I wonder about this generation) most adults usually leave the nest, so why should he be any different?
The problem with that line of thinking is that while his chronological age may be in his thirties, I can bet you some really good chocolate that he’ll still like Baby Einstein videos and want his caretakers to read him an Eric Carle book before he goes to bed, which I’m not entirely sure will fly with his staff.
In his soul, he will remain forever young.
On the other hand, I worry about the possibility of abuse, neglect, and perhaps him not having someone in his daily life just to love him, which since he’ll be without me for a good forty years simply breaks my already fragile heart.
Honestly, I can’t begin to fathom how it will work without my being with him, how someone will know inherently what he needs even when he can’t express it on his iPad or with his limited words.
How will dozens of caretakers over the years know that he’s not being resistant to putting on his shoes, he simply needs the left one on first?
Who will cajole him with puzzles, dancing, and sometimes a simple good old-fashioned hug?
Who will understand his word approximation for “juice,” or understand he’s putting his dirty hands on the refrigerator not to make a mess but just to get more of the lettuce his mom was so proud he ate?
Who will navigate the myriad of medicines and supplements he takes, taking the time to tweak and adjust as he ages?
Who will comfort him when he gets sick?
Who will foster his affectionate nature when he craves the contact that centers his soul?
Who will love him when I die?
I’ve been told to have faith, to keep hope alive that dozens and dozens of caretakers whose grandparents have just been born will treat my boy with the kindness he deserves. I know there are good group homes with men in their seventies, eighties and beyond who’ve carved out a life without their families, some who’ve even gained a measure of independence.
I believe there are some autistic adults who lead good, full lives.
All of this circles around in my brain when I allow it to contemplate his future. I know there are success stories out there, and I comfort myself with those.
But still, it seems impossible that someday I won’t be there for him, to guide him, to make life choices for him, to love him even when he is difficult.
I need to live to 132, just in case he inherited the genes from my mom’s side of the family.
I can never leave him.
I have to leave him.
The situation is impossible.
I can never die.
For more on my family visit my blog at autismmommytherapist.wordpress.com
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