Thursday, August 30, 2007

Wise words

I was blog-hopping and found an amazing post on a blog written by a mother whose four-year-old daughter has Down syndrome. Check out her post, titled Hope and Normalcy, Part 2, then read the rest of mine:

I have noticed changes this summer. Changes in me, I think, but changes in others as well. I know people look at me with pity, with concern, with wonder that I have a "great attitude" for all we're "going through". I appreciate the concern, I don't want to appear rude. But, seriously, I have found that there are plenty more worse things than having a child with William's syndrome.

I can reiterate a lot of what Michelle wrote - just change Down syndrome with William's syndrome. Did I wish for my son to have WS? Of course not - life may be harder, his health will be riskier. And the stupid question would be would I sacrifice him to have a child without WS? Of course not. And about the "bad things" -- He'll have delays. He may live with us longer. He may not be a rocket scientist. He may have hard times growing up and maturing. (Ahem, all of these happen to "normal" people as well.)

I know people are trying to do their best to show me they care and are trying to be supportive. But I don't need or want people to act guilty their child is superseding Brady in development. I don't need people to look at me, sigh, and tell me how great I'm "doing", while patting my back in sympathy. My life is my life. Yes, we have countless therapy and doctor appointments. We are always trying to help Brady gain weight. We will always be in the middle of some "project" we are trying to help Brady with. You can show me support. Just don't show me sympathy. Seriously.

My girlfriend's friend's baby died when he was eight months old from a rare disease. Our PT know another baby who is living on borrowed time at 13 months. I know more than one person who can't even have children -- do you think they would mind having a baby with developmental delays? Our ST knows of a family where the father of five children died in an accident. I know a family whose son drowned at four years old.

For those of you who wonder why I have a "great" attitude -- THIS is why. How can I be sad over Brady when things like the above happen all the time? I am not some super-human. I am not extremely optimistic. I am actually very REALISTIC. Having William's syndrome is not the worst thing to happen.

Now you know my secret. Thank you, Michelle, for a great post and for making me realize why I may need support, I personally don't need sympathy. Just look at that cute little bugger :)


Heather said...

I feel like that most of the time. Sometimes it gets overwhelming and tireing, but like you, I don't want sympathy really. Understanding and comapassion maybe, but not sympathy. Support is sooooooo good though :)

Nancy said...

I don't want people to minimize our struggles, but I don't want pity, either. In short, I'm not sure what the hell I want sometimes. For the most part, my friends and family have been awesome and have found that delicate balance, giving me a little extra support when I need it and telling me not to be so much of a worry wart at other times. I'm pretty lucky that way. :)

Amy said...

It is sometimes hard to feel sad for yourself when you think your child is so wonderuland special. Somedays I think that I want pity, but don't think I am worthy because this is just LIFE, my LIFE, and it isn't all. I have everything I could ask for, and more. But, somedays it is just exhausting and different, borderline messed up. But also fun, and wonderful, and special. Support is good, yea, I will accept that...not pity though. Rock on.

camille said...

Thanks for that post. I love Michelle's blog as well. It is good to keep WS in perspective considering there are much worse things that could happen.

Every minute counts.... said...

I love both of the entries(your's and Michelle's) I agree with you in alot of ways. I don't want life is what it is. What I want is for people to understand that they should cherish every moment that they get with their kids. I feel pity for a lot of people who can't look past material things to see the joy that their child could bring to their lives if they would just take the time to notice instead of being so busy. Life is short and there are no guarentees that any of my children will outlive me. I understand this but so many people choose not to even think about how much worse it really could be. I have my children and none of them are perfect. None of us are. We all have flaws, we all have delays, we all have things we will never learn how to do.
I don't want people's sympathy I want their understanding and compassion. I want them to pay just a little more attention to their own children by learning through mine that life is not always safe and predictable. Thank you for saying what has been floating around in my head for awhile now.


Michelle said...

Thank you for sharing your thoughts too - very well said and of course I agree with what you wrote as well. That's how I feel too, Down syndrome isn't a death sentence, I still get to raise my daughter and that to me, is what motherhood is all about.

Julie said...

Hi Kerry,

My son Noah is 19 months and has WS. He had heart surgery last July for his Aorta. We found out at our 1st check up that he had WS. I didn't break down because we were just so thankful that he had survived the surgery. My husband had a son that was killed in a car accident when we were dating. Ethan would be 9 this new years eve. I know that Scott would rather have him here with us. I would not change Noah in any way and I just praise God that he is still here with us. There are days that I wish he was doing a little more, but I am just so glad that so far we are able to keep him healthy.

Teresa & Shawn said...

Well said. I had already come across that post of Michelle's and agreed with everything (and you) said wholeheartedly.

Lisa R said...

I'll be back to finish reading I cheated on yours too...I found that blog she is so cute eh...Keep those glasses on that boy I know it is tough :) Call Me XOXO

Aspen said...

I had some of these thoughts just the other day. When people say you are so strong and amazing, I don't know how you do it? I sorta think in my mind and say to myself...Well I am a mom. Any mom would do this for their own child. What else was am I supposed to do?

Brady looks so great!

Lisa R said...

love this post :)