Siblings, Death, and Down syndrome --- Musings inspired by a 3 year old!

>> Wednesday, May 03, 2006


Archie -- my baby -- my sweet little boy. Okay, not so sweet, and certainly not a baby anymore. He's actually an adventure. Lately, Archie (3 1/2) has been in top form. For the past few days, he and Jonah (7 1/2) have been fighting non-stop. Finally, Jon stops them and gives them the "when your mom and I are gone, your siblings are all you have" speech. Yes, you know the one that comes about 4 years before "I walked to school 5 miles in the snow, uphill, both ways speech." :-).

A few minutes later ChiChi is at the piano composing his latest tune entitled, "If my mommy dies." Yes, you read that right. And, his composition was quite "Barenaked ladies," complete with "if my mommy dies I'll have to drive myself to school," and "if my mommy dies, I'll have to make my own dinner." (I expected to hear, "but we'd would" come out of his mouth.) It ended with a deep, long, and powerful "WHEN MY MO-MMMMM-Y D-I-E-S." Song in motion. That's my Archie!

So, this morning, Archie woke-up in a good mood and so far, the fighting has been a bit less than in days past. I hate to pull the "die" card, but at this point -- whatever works :-).

When people worry about the effect of having a child with T21 (Down syndrome) on their other kids, I look at my three amazingly unique and perfect individuals, and wonder the opposite, "How sad would our family be without Maren?" She is the highlighting pen that makes us notice the uniqueness and specialness of each of our kids. She helps us notice the important, often easily overlooked daily passages of life. She helps us appreciate each moment with each of them. And, because of Maren, we stop and look for the meaning in even the smallest daily event -- and we mark it, color on it, and commit it to memory. We know that we must pay attention to the details, something that often gets lost in a textbook life. We take nothing for granted -- and even enjoy songs about our ultimate demise.

It's easy for people to fear the unknown, I guess -- like death, and for some, Down syndrome. But, with death, most people think that leaving this world brings untold riches in the afterlife, and they take comfort in that. I only wish people would have such faith in the extra chromosome. In this land of unknown, there are untold riches. If you have faith in one, certainly you should have faith in the other. I just wish more people would realize that real "life" comes in embracing the unknown rather than running from it in fear. And, at my death (hopefully a long time from now so Archie will be able to legally drive, LOL), I will know that I truly have no regrets and what ifs. I lived the unknown, and boy is it beautiful. "When I D-I-E" ....... fade to Archie tickling the ivories.

6 comments:

Michelle 9:25 PM  

Amen! What a great post! I like how you used the analogy to the highligting pen :)

Tara Marie 12:28 PM  

You my friend need to start blogging a long time ago, because I am so moved and so inspired by this thread. You are so right, we are living the 'unknown' and it is a treasure worth its weight in gold!

Tara Marie 7:53 PM  

I've been thinking about Chichi singing and it reminded me of a post I did about Emma Sage where she had Otto's guitar out and was singing a 'Blues' song [because I had run out to the A&P] that went like this...."My Momma left me...she go to the A&P".....lol!!!!

I'm so glad you are blogging.....

Sue Scott Wellons 8:23 PM  

Hi from the WTM board! I have a daughter with DS as well, our "highlighting pen." I enjoyed reading this!

Julie 7:07 PM  

Oh Carol, we simply must get our singers together! Between your three and my two - I think I'd
D-I-E laughing on your living room floor!! And yes, I agree with all of your other sentiments in this post....it is amazing how much I notice and appreciate the uniqueness of Cameron because of Emily....aren't we so blessed?

jennifer 4:53 PM  

This is such a terrific post. Thank you for sharing it, and for sharing your family.

I started a blog called Pinwheels, and I'd like to link to your site, if that's okay?

I'm at http://jennifergrafgroneberg.wordpress.com/

Thank you for sharing your beautiful family!

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