Thursday, October 7, 2010

31 for 21: #7 The Future

This is a way cool video! Watch it if you have a minute!

It is a nice segway into what I was going to write about today...

Will I ever be an empty nester? I don't know.

I like to think so. When I get to see things like this, I am very encouraged. I hope so.

The older Elise gets...the more I wonder. When she was little, we really had no jumping off place, so I did my research, and for every person with Down Syndrome that lives at home forever, there is one that lives independently, with jobs and friends and responsibilities...it was exciting...and hopeful...

As the years pass...and she is just about 8 years old, operating on a 3 to 4 year old level, with a 2 to 3 year old speech ability...and less than a year's improvement, in a year's time (this year's IEP showed only 8 months in most areas and only 4 months in several, and they say that it will continue to slow over the next few years.) I just don't know. We have several friends who have kids with Downs right around Elise's age and they will sit and pay attention...or can walk independently through the parking lot...or can talk at a higher level...and I wonder...

I know that one of the side-effects of one of the drugs used in her chemotherapy protocol was some mental retardation...but as we have no base-line, we will never know how that figures in.

I have not given up hope. I am planning for Elise to have a measure of independence, no matter what. Even if she lives at home, we are planning for an apartment in the basement for her...and a job, even if I have to drive her to barns to scoop poop and curry horses or veternary clinics to brush dogs or Kroger to bag or childcares to scrub babies...or whatever...I have confidence that she will dream dreams and I will do my best to get her to them or as close as possible...

The current life expectancy of people with Down Syndrome is 55 years. I find myself hoping that if she has limited independence, that I out-live her. I don't want to have to ask my other kids to take on that responsibility...if she is very high functioning and personally independent, I will consider my prayers answered and will have a considerable weight lifted from my worries...

Gabriel, Amelia, and Charlotte are care-takers in personality. I don't know how much of this is because of loving and living with Elise, I don't know how much is an innate gift from God. I am thankful to see this, because I know that they would willingly step up, if it comes to that...

Elise loves to do things for herself and we have gone out of our way to make sure that she has opportunities and will continue to do so.

She adores to cook. She loves to read. She likes to feed the dog. She can set the table and clear it...and very few forks get thrown away...She lives with enthusiasm.

I am determined not to lose hope...and look forward to the day that I can tell her to "have a good day at work!"

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