Monday, November 27, 2006


I have been a tad emotional these past couple days. I want to blame it on hormones and a bad head cold, but it's really because I have become a wimpy mush since becoming a mother, especially a mother to a special needs child. I know I have always been a compassionate person, but it gives you a new perspective when you see another human being and think "that could be my child." I can get downright weepy when I see the boy with Downs syndrome cleaning the tables at Wendy's.

We received our copy of the Williams Syndrome Association's newsletter this weekend. There was a beautiful letter written by a 12-year old girl talking about her 7-year old brother with WS. She states that even though he cannot walk, talk, or eat, she thinks he is absolutely perfect. There were two tributes from the parents of children who passed away this year (one girl was 16, and the other boy was only 9 months old). It took me two days to read the newsletter because I kept having to put it down and take a break or else I would lose it. I picked up my latest issue of "Parenting" instead (nothing has ever made me cry in that and, many times, I laugh at the magazine and the problems those parents need solved - it's a wonderful diversion to read about how to get rid of your baby's hiccups). And there was a heart-stirring article about open-ended adoption that got me started crying all over again. (For those that do not know, my then-teenaged younger sister courageously gave her baby up for adoption nine years ago.) All this while spending a wonderful four-day weekend with my three sweeties getting our house decorated for Christmas made me very weepy indeed.

Today, my thoughts and prayers are especially with another little member of our WS community. During a "routine" cath, this 2 1/2-year old's heart stopped. He was resuscitated, but his heart stopped twice more, he was placed on life-support, underwent open heart surgery, developed double pneumonia, and sometime during all this he also suffered a stroke. He is in week two of being in the ICU. My heart goes out to Gage and his parents during this difficult time.

It's hard to read and know all this. I want to know about these risks because I do not want to be in denial about how serious Clare's syndrome and heart condition can be. At the same time, I know that there are many more children with WS who are thriving in many aspects of their lives. The reality check can be hard sometimes. And, finally, my friend Nancy's blog just got me completely. She shares a beautiful story and video about a father and his disabled son who saved each other's lives. You have to check it out, but be sure you have the tissues nearby. Her blog is at: under the post entitled "CAN." Thank you for sharing that, Nancy. I hope I am all out of tears, at least for tonight.


Lisa R said...

I have just been torn up all day over gage. Certianly hits very close to home, a little to close for me.

Nancy said...

That newsletter was tough for me, too.

We are in the middle of some of the most amazing love stories ever written with these kids, and the story/video reminded me never to give up fighting to make their dreams come true. Two weeks ago, I wasn't sure there were any dreams left in me, but I can now see that isn't true at all.

Kleenex? I have them on my desk these days.

Love always,

Kerry said...

I have sent Nancy' blog address out to a bunch of people to read/watch that clip. I am constantly amazed over the strength people find insie.

The newsletter also hit a little hard for me too - especially the baby. It's all a part of WS that I don;t like to face - the health risks with the "challenged" heart Brady and some of his WS friends have. It maes me realize though that I don't really care if he's two when he finally crawls... I'll be glad he reaches two.

Aspen said...

I ended up reading the article about the sister to the 7 year old WS boy out loud to my husband. While fighting back the tears, he actually got a bit chocked up as well. I forget sometimes how fragile our precious children can be. Sometimes it takes a small reality check to remind us that they need extra love and care. To cherish every second of every day we have with them.

Bring on the tears. Love you and those babies of yours!

Christina said...

I think I needed more than one box of tissues after watching that "CAN" video from Nancy's blog! - so much so that Tee Jay finally had to say with alarm, "Seriously, are you going to be okay?!?!"

I am constantly an upbeat, positive person, and I love telling people how great Clare Bear is doing. It's hard to realize that her life (and all of our lives) are always just in the Lord's hands.

And that's where I learn to stop crying and stop worrying - I realize that in mentioning the Lord, I need to remember not to despair... God will hold Clare, her parents, and her family (including me) closely. I need to trust in the beautiful lives He has granted us, and enjoy every new day.

I will pray for Gage and his family and all of the WS families who struggle with fears and uncertainties.