THE NOT KNOWING IS THE HARDEST PART

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So I had a talk with Liv about Jake.  

It started as a tangential conversation after Jake brought home the tree.  We were talking about how he was becoming more “normal” all the time.  A year ago, I couldn’t have imagined that I could send him to the pool without adult supervision beyond that of the lifeguard.  His “normalcy” was progressing well.  On the flip side, he was still “Jake” enough to have all of the girls laugh at his lunacy and have him think he’s the next Milton Berle.  

Somewhere in there she asked what would come of him when he gets older.  Would he marry?  Would he have a job? What were the chances that he’d become fully “normal”?  

I started giving her scenarios:

If he grows up to be capable enough to manage his own home and have a wife, kids, and career, then great!  

If he doesn’t make ANY progress between now and adulthood, and has to remain at home with his parents, then so be it.  This is where she was quick to interject and say that he would live with her when she was old enough to have him, God love her.  

I told her of a man who lived next to an apartment Beth and I had in Biddeford who lived in his own place, but who had 24 hr/day staff support to help him manage his own affairs.  This concept was foreign to Liv.  How would he pay for such services?  I told her that he’d obviously qualify for disability at some point if we had to prove that he was unable to maintain gainful employment to pay his bills.  

I told her that there were group homes full of guys like Jake who had roommates in similar situations, and that someone oversaw them, kind of like the parent of the house.  

I had to tell her that if Jake’s best fit was in a group home in Louisiana, then Beth and I would pack up and move to Louisiana to be near him.  

I don’t want her worrying too much about his future, though knowing her, she’ll spend more time on this than is healthy. I want her to rest easy in the knowledge that together, we’ll cross whatever bridge comes our way.  We’ll do the best we can for Jake; that it’s ultimately not HER responsibility.  

I want her to take on that challenge only if she feels truly led to do it, not because I’ve made her feel as though she HAS to.  

How can I make her feel secure in the future of her brother if it’s something that keeps me up at night?  

How can I tell her the answer when I’m not yet sure of the question?  

Are there any other special needs parents who have figured this out? How did you lay things out for the sibs without getting too “heavy”?   After all, she’s only eleven.  Gabriel, after all, is blissfully oblivious at nine.  

 

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