Wednesday, September 19, 2007

My sister, my friend

As much as I hate the idea of moving Laura and Pat any further down on my blog, the writer in me is just too much to squelch. To say that Laura made my week is an understatement!


Dakotah came bounding through the door after school yesterday, already talking before she even got in the house, as she is everyday.

Someone on her bus had a copy of the 2007 Guinness Book of World Records. She blurts out, "The oldest person to ever live with Down syndrome was 64!!!" She is nearly in tears - saying that's too young to die, that she doesn't want Paige to die that early, etc.

I know that this statistic is wrong, as there is a gentleman at our local Community Living group who is in his mid-70's with Down syndrome. He has been quite healthy until just the last month or two.

I try to explain to her that each decade, the average life span for a person with T21 gets the 50's the average age was just 9 or 10 years old...ten years later, it was 20-30, when Paige was born, I was told 40-50. Now, I think that it is expected that generally people with T21 who have good health care are reaching about the same life span as everyone else.

Its strange how this would have caught her so off guard. Just the thought of Paige's mortality in 50 years takes her breath away.

It reminds me of an ER episode where an old lady is dying and her daughter with T21 is also very ill. The old woman does not want to take aggressive measures to save her daughter's life, as there was no one to care for her after she had died.

I remember attending a conference once where there was much conversation about care for a person with T21 as his or her parents aged. One gentleman that was sitting beside me told me this story that has always stuck with me.

He told me that as he was growing up, his parents were always very, very conscious of making sure he didn't feel burdened by having a brother with T21. They never expected anything extra from him, and made arrangements for his brother's care after their death.

He had gone on to marry and have two kids of his own. His parents had died perhaps 7 or 8 years prior to this conference.

After their deaths, he not only took his brother into his home, he brought two of his brother's friends with T21 to live with him as well.

He said, "You know, my parents always worried about my brother being a burden to me. What they never thought about is that I WANT him with me - I want to have breakfast with him every morning, and drive him into work, and play ball with him, and talk about hockey with him."

He had created a wonderful family that included a wife, two very young daughters, and three grown men with T21. And he wouldn't have had it any other way.

In our family, we make no apologies for Paige having T21. Nor do we apologize for any health issues she has had. I have never felt guilty when one of my children needed more attention than the other, as I want them both to know that I love them dearly, and our family will always do whatever we can to meet the needs of one another.

I am amazed at the love my children have for each other. Both of them are very affectionate toward the other, both of them adore one another. Paige is as in tune with Dakotah's needs as Dakotah is with Paige's.

Last night, they had a blast in the bathroom because Paige kept turning the light off on Dakotah, and Dakotah would pretend to grumble about it, which would send Paige into a fit of the giggles.

Just two sisters, no chromosome scoreboard needed.

That's what family is all about.


Nicole said...

Yea, heck if we had to make excuses for an extra chromosome, we'd have to make excuses for our silliness. :)

I love your girls love for one another.


Anonymous said...

My girls have had there days of tears over E aging as well. I'm glad that they didn't see this statistic.

My girls don't count chromosomes either. It's a wonderful bound sisters share.

Debra said...

Thanks so much for this, it was wonderful and I love the end comment about the scoreboard. My biggest fear with Hope when we die is, the number of brothers and sisters who already tell me Hope is going to live with them. I have had to tell them that Hope will have a job and needs to be in one place. I am not sure how that is going to work out but I am so glad that they all love her just like they do each other. I know they would do the same for each other.

Thanks again
Debra and Hope