Here was the adopting mom's post:
"I went visiting teaching a couple of days ago and one of the sisters I visit was asking me about our upcoming adoption. She seemed enthusiastic about it until I mentioned that our daughter has Down syndrome. Then she proceeded to tell me about all the patients with Ds she sees (she's a doctor) whose siblings are "stuck" caring for them and who argue and feel resentful about it. This was the first time I've gotten hit with this kind of negativity. I kind of stammered through a reply about independent living becoming more the norm these days, but I wish I'd been better prepared. Any advice?"
{For those of you who don't speak "Mormonese," (hee hee) a visiting teacher is woman from your ward (congregation) who is assigned to visit with you and share a gospel message in your home once a month, as well as just be there for you as a friend. All women are assigned visiting teachers and most women are visiting teachers, as well.}
Although my friend's well-meaning visiting teacher was a bit tactless, she brought up something that's important for anyone with a child who may be dependent on others as adults, to think about: What will happen with them when we pass away and they are still here?
First of all, I have to point out that our girls could very well both go to college...even find true love and get married some day. So many exciting advances are happening in DS research that make our daughters' futures very bright!
But we can't depend on this and we've talked about it with our 3 older kids a couple of times. We asked them if they think they would be willing to have Anya and Hazel live with their families, or even take turns having them.
Their response: "Why WOULDN'T we want them to live with us??" (Like...are we missing something??)
It is our hope that, when that time comes, at least one of our five other children will still feel this way and that their spouses and children will as well. But. We know that life happens, and we also know first-hand how demanding it is to raise a family. It just may not work out this way. And that's OK. We have to have a plan in place for Anya and Hazel, seperate from their siblings. We just do.
As soon as Hazel is home with us, we plan to set up a special needs trust for each of our girls, and put money away from now until the time that we die, so that, if needed, they can either live in a group home setting, or be partially-supervised by someone, independent of their siblings. For now, we have increased our life insurance so that if both of us were to "go away" (as Jeremy so nicely puts it) in the next 20 years, our family would be able to hire help or whatever they need to do.
I know the future is uncertain. But ALL of our futures are uncertain, aren't they? This is just not something that we sit and worry about. We need to do all we can do to make sure their needs will be met in the future, and leave the rest of the Lord. We know He led us to these girls, and that he'll take care of whatever details we can't. He certainly has up to this point!!
I love this response to the post that was on the Facebook group today. It was written by a sister of a man with DS:
"I think you could tell her that THESE siblings are fighting for the chance for their DS brother to live with them should something ever happen to mom and dad. Never once did we resent anything about our upbringing. In fact, we feel sorry for people who missed out on it. Do they take some work? Maybe. But the struggles with them can be easier than with us. Mom says Jerry's the smartest of all of us, and after hearing his testimony today over the pulpit, I AGREE! I think its the world's selfish attitude imposing itself on us to think that we're strapping our other kids down with a handicap sibling. I can guarantee NONE of us feel that way. Jerry's IT. We'd do anything for him!"
I'd love to hear your thoughts on this subject, especially if you have a child or sibling who may need assistance as an adult, or even better, is already an adult! So much to think about, for sure.
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