Sunday, November 23, 2008


I finally finished Gifts tonight. Every single story in it made me cry. Mostly because they are all just very moving and tender accounts of parents' experiences with their children with DS.

There is one story towards the end, though. It's a chapter entitled The Blessing of an Imperfect Life. It starts with a photo of an adorable toddler girl with DS sitting at a piano. At the end of the chapter, the little girl has died of leukemia at the age of 2 1/2. I cried and cried over that chapter, and I'm sitting here crying now just thinking about it. That such a beautiful little girl could just die. To those of you who believe in God: where is the sense in that? The purpose? The rhyme or reason? Wait, don't answer. I know I'll just hear the usual "God works in mysterious ways," and "Everything happens for a reason . . . there is a lesson to be had from that experience for that family." Really? No, I don't believe it.

But I digress. This isn't about my beliefs or non-beliefs. What I wanted to write about right now is the fact that I'm afraid. What if I lose Finn? What if I spend the next couple of years pouring all my love into him, and watch him grow and claim more and more of all of our hearts in this house, only to lose him to something like leukemia? Because the fact of the matter is that he's at a higher than average risk for developing leukemia just because he's got Down syndrome. I can hardly even stand to think about this . . . and yet, suddenly I can't stop thinking about it.

I'm afraid of a lot of things. I know so well that everything can change in the blink of an eye. And I'm no longer foolish enough to think that that stuff happens to other people. It happens to everyone - everyone has something.

I'm afraid of all sorts of things concerning all of my children: abduction . . . experimenting with drugs . . . teen pregnancy . . . car accidents. But I have even more fears concerning Finn: leukemia . . . autism . . . seizures that lead to brain injury. It's all very morbid, I know. And usually the fears are just dim shadows hanging around in the back of my mind. But every once in a while they creep up to the front and center and make themselves at home for a while.

I don't want to live in fear. I don't want to waste my kids' growing up - including Finn's - worrying about all the horrible things that might befall them. I'm not sure how to have a healthy mental balance about these things. How do you accept that these things are possible without making yourself crazy with it all?


JaybirdNWA said...

Let's say for sake of conversation that Finn did die at the age of 2 or 3. Would you not be a better person for knowing and loving Finn. If John died tomorrow and heaven forbid that happen to either one of us but if he did, I can honestly say that John has changed our lives for the better. Of the things that we have learned from John is the importance of relationships and the importance of a life does not lie in ones abilities to make money, excel in school, etc. Believing that my God loves me and desires to soften my heart in order to be open to His love for me, who is to say that He doesn't use people in our lives, even innocent little children, as His messenger.

Darla said...

It's a horrible and sad thought that anything would happen to Finn, and I don't have the comforting answers that I wish I did. You are such a seeker though that I have every confidence that you will someday understand more about the true meaning of all this than many of us.

None of us have any guarantees about anything, which is a frightening thought, but again, you have a situation where you are much more aware of that and it's hard not to focus on it.

Is there some time frame after which these things are less likely to happen?

Finn looks so healthy now, I believe he is going to be finer than fine.

Tricia said...

I think you already know this, I think you are just talking about your fears--we all have them, and I can honestly say that I now have them (even Leukemia) with Rainer, who does not have DS or an increased risk towards anything like Leukemia (that I know of)--but with all respect...what if?

What if any ONE of our kids meets a less than fortunate fate?

What if?

I don't know the answer. I don't know how to tell you you'd best handle it if something like that happened.

But what if?

We can ask ourselves those questions, we can wonder...I actually think it's healthy to wonder those things from time to time...

but what if?

I suppose it's best for us to just live and love our kids as best we can because anything can happen at anytime to anyone of us.

And in the meantime, try to keep those what ifs at bay the best you can. You can't hang a thread from a what if.

Momma M said...

The way I keep those fears at bay is to tell myself that *my* worrying about it does no good. Okay, so Stella has a higher risk of a lot of medical issues because she has Ds. Where does worrying about it get me? I can't solve something *now* that may or may not happen in the future. I'm not willing to mortgage my happy now for a possibility of an unhappy future, or unhappiness in the future.
Can you, by worrying about it, prevent leukemia? Or abduction? Or any of the other bad things that you worry about? Can you come up with a solution to those potential problems? *I* know I can't, so I try to remind myself of that when the worry monster rears its ugly head.

Michelle said...

While it is true that those w/Ds have a higher incidence of having leukemia, it's also true that those w/Ds have a higher survivor rate too...they seem to be able to beat it more often than not.

I think your last paragraph answered your own question - you just have to live life without all that fear; you can't enjoy life if you're living in fear. And having leukemia isn't something you can control, so since there isn't anything you can do about it, you just have to put it out of your mind and think/hope that you'll never have to deal with it.

Ksenia said...

Just saw this and thought of you:


Jen said...

I think about this stuff all of the time. And I know the story you're talking about in Gifts...I cried too.

Leukemia is the thing that scares me to death. And it's not just Evan I worry about; it's his brothers too. I made the mistake of reading My Sister's Keeper by Jodi Picoult when I was pregnant with Eli, my first son. It was a terrible book, but really brought forth a lot of fear and worry for me. I was freaking out about what could happen to my kid before I even knew him.

I think something like a Down syndrome diagnosis makes us all realize how vulnerable we are; how things really can happen to us. Thus the excess worry.

I like what Momma M said. That's a smart way to look at it.

Laurie said...

Im right there with you. I have read that story in Gifts as well and it scared me. I worry about Leukemia way too much... and then I worry even more bc Im thinking about it and therefore am bringing it to the surface which I worry will create exactly what Im thinking about. Whew, that didnt make much sense did it? Have you read The Secret? While Im not sure I totally believe in the law of attraction, I am also afraid to not believe it...
Anyway...what Im trying to say is that I worry alot as well. More than I should, I think.

datri said...

The big L is one of my biggest fears, too (honestly, I never even thought about autism until Kayla started showing a lot of signs of it). I remember when Melissa Riggio, daughter of Barnes & Noble CEO, passed away. All I could think was OMG -- the best treatments money could buy couldn't save her!

But, it doesn't do any good worrying about the future. My DH does this about EVERYTHING and it drives me nuts. Things will sneak up on you and you just deal with them when it happens.

Heather said...

"Some luck lies in not getting
what you thought you wanted
but getting what you have,
which once you have got it
you may be smart enough to see
it is what you would have wanted
had you known....
~ Garrison Keillor

It is only by going down into the
abyss that we recover
the treasures of life.
Where you stumble,
there lies your treasure.
The very cave you are
afraid to enter
turns out to be the source of
what you were looking for”
~ Joseph Campbell