I just read an article in Good Housekeeping Magazine. (I know, how very housewifey of me.) It was called “The Never Empty Nest,” and it was about a couple who have two grown sons with Fragile X syndrome. It’s a severe type of autism that leaves the boys unable to take care of themselves. The article talked about how everybody loves special needs children. They adore their open expressions, sweet smiles, and bright eyes. But somewhere during the growing up process, the indulgent smiles start to fade. A two year old having a melt down in the middle of the grocery store is looked at much more tolerantly than a 19 year old doing the same thing. Never mind that his mental development never passed the age of four.
The article went on to talk about the worry the parents have about who will take care of their boys when they are gone. There are no other siblings, only a couple cousins. How can you ask someone to take on that responsibility? The only option is arrange for them to go into a home when their parents can no longer take care of them. To leave the stability, the routine, the familiarity that is so important to people with special needs. To enter a facility where they likely will not get the special, one on one attention they need. To spend the last 20 or so years of their lives in dull monotony.
It made me think.
First, about the fact that one day Ellie won’t be the adorable smiling baby that she is now. One day she will be an adult with Down syndrome. People won’t necessarily love her on sight like they do now. Will they look past the differences in her appearance and the way she talks, to get to know the bright young lady she be? Or will they turn their eyes away, look through her, talk around her like she isn’t there? Will they laugh at her, make fun of her behind her back? (Or, god forbid, to her face?) Will they give her the chance to shine her beautiful light, or will they try to snuff it out with their ignorance?
When you have a child with a disability, this kind of stuff keeps you up at night.
I’m so grateful that Ellie seems to be fairly on-track mentally, and that her delays so far are all physical. One day she will be able to hold a job and live away from home if she wants to. She will be able to have her own life.
For a while, anyway.
It use to be that people with Ds weren’t expected to live past 30. Now around 50% live past the age of 50. That’s right. Half of the people with Ds die before their 5oth birthday. The last years of most people with Ds’s lives is spent in nursing homes or hospice care.
Think the worst for a moment, and do the math.
Say Ellie’s health wanes and she needs to go into a home at the age of forty. After all, she has a heart defect, and we don’t know how that will effect her in the future. Now subtract they years she spends growing up. She’ll probably be 20 before she leaves home and starts her own life. That leaves her twenty years to herself. Twenty.
Think about that for a minute. Imagine trying to cram everything you want to do with your life, everything you want to be, into twenty years.
And if Ellie is in that unlucky 50%, there is a very good chance I will out live her. I will be 80 when she turns 50. I may have to bury my child. No parent should have to do that. Ever.
Of course, she may one of the lucky ones. She may live to be 60 or even 70. She and Laurel might grown into spunky old ladies together. Wear red hats and go out to eat on Sundays. I’m sure Ellie will be in a home at that point, but I am hopeful that Laurel will visit her as often as possible. Maybe bring her kids and grandkids to visit Aunt Ellie.
That’s the hope I wrap my arms around and hug to me at night. Because when you are the parent of a child with special needs, hope is what you breathe. You have to live with the assumption that everything is going to be ok and your child will live a long and healthy life. You don’t think about all the things that could go wrong, because if you did, if you dwelled on the what ifs, you would never get out of bed.
And then you’d miss out on all of the beautiful moments that you have together.