Splendid Mayhem: Adulthood, What If?

Welcome To Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Monday, December 8, 2008

Adulthood, What If?

... Many affected people need to live in a residential (adult foster care) group home when their parents are no longer able to care for them.

With children: Support in the home, a contact family or short-time respite care homes may provide valuable relief and rest for the family. The family may also require assistance in coordinating interventions.

With adults: they require continued support from a treatment and training center. They also need special housing, offering assistance in managing daily living skills and organizing activities.

I've looked and researched (I know, I said I wasn't going to do this) every possible syndrome, etc we discussed. EVERY one of them mentioned the above. It's heart breaking.
One of my best friends & I were joking (a few weeks ago) about our children, she'd had a rough day w/behavior, etc. She laughed and said something about 'when my daughter turns 18, she is so on her own!' If it hadn't have been this particular friend (or one of my other friends who have SN kids) I think it would have bothered me. I laughed back and said something like yes, Parker will be too!

How do I keep my sanity through this all? How do I make it ok for everybody? How am I suppose to feel and react? I don't even know. I've cried so many tears I don't think I can cry anymore. I'm becoming numb. And, my wonderful husband is Mr Optimistic. (Thank Jesus for him!!!) I wish I knew how to look at the bright side of everything like he does. And, what about Logen? What about HIM?

And, there's always that question of: What if he doesn't make it to adulthood?

So, we just ask for you to....

Keep On Prayin'

1 comment:

AlisonDecember 9, 2008 at 5:07 PM
You come to the point where you go one day at a time, one hour at a time. For me, looking ahead to 2 years from now, 5 or 10 years from now is incomprehensible. Either, he will still be total care but nearly a man, or I won't have him anymore on Earth at all. So, I don't live in denial, but I only go at babysteps and cherish each day. The road I walk has taught me one thing more than any other. To cherish every day, every special moment, every holiday. I don't know what type of disease it is that you are facing, however, I pray that in time your mind and heart will come to a place of living moment by moment.

big hugs!

www.andrewsbravejourney.blogspot.com
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