Traveling in the car with my college age son who was home on a break, we passed a friend going in the opposite direction. I’d been catching him up on folks and so I mentioned some of the things she had been going through in the last couple of years.  I said “She has a really hard life.”  To which he replied:  “Some would say you have a hard life Mom.”  Oh really?  I guess that’s true; some might say that.  

There were times I might have agreed, when care-giving for my Down syndrome son was physically difficult.  But more recently the worst it gets is when he sticks out his tongue at me instead of cheerfully complying or gives the serious “No!” head shake.

Joe, no w EmMy son’s comment made me rethink what I had said about my friend and her challenges with her aging handicapped son. Perhaps my friend thinks as I do “It’s not so bad.  It’s just what has to be done.  It’s what anyone would do. You’d do the same.” Perhaps she’s perfectly content focusing on his needs and feels accomplishment when she meets them.  

I have another friend whose middle-aged handicapped daughter has for 20 years required her full-time attention.  She says “I always knew I’d do service throughout my life, I just didn’t think it would all be to one person.”  And I know this woman wouldn’t do anything differently.  I think if you asked her she’d say it’s just what anyone would do for their child.

I wager these ladies and I have something else in common – I should ask them – and that is how it feels when people say “Oh, your child is so lucky. You are the perfect parents to have him (or her).  I could never do what you do.”  My husband and I don’t understand this but people say it all the time.

Of course you would do what we do!  I know it is meant to compliment us for what they perceive as difficult work but if you’ve got sensibility enough to see that our child needs a different kind of parenting than other kids, of course you would see that for yourself and do it for your own.  

You turn it around a little bit and realize that what’s being said is that even though our life situation is unappealing it must be that it came to us because we can handle it well.  It’s like saying that “You must have been given those money troubles, or that car accident because you’d be able to handle it so well.”  I don’t think so.  I think that if we know how to handle it, it is because it came to us, not the other way around.

Much of our life is just like anyone else’s who have children.  For example the other day my husband said to me “You must have been to McDonald’s more than anybody.”  “Oh we don’t really go there that often,” I said.  “But for 20 years?” he replied.  Well, yea, I guess it’s just the same only it’s lasted longer.  

Although the fabled days of “Mommy! You back!” that a mother enjoys just for coming back out of the bathroom have faded for me.  (He still waits, he just doesn’t get so excited anymore.)

Down Syndrome Days might be different but still sweet

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Life is different for everybody, and everybody has their difficult things.  In fact I’ve had things in my life that were much more difficult than caring for my Down syndrome son, but nobody got a ringside seat for those things.  And I got through them just the same way you get through your things – one step (and one order of chicken nuggets) at a time.  

 

About Jane Thurston

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