Sometimes, it's confusing.

At times, having a child like Lauren - one with Down syndrome - is confusing. There is so much information 'out there' and I usually don't feel alone on this journey, but still, there is so much to consider, sort through and try to understand.

As with so many other things, there is such a wide range of developmental ability when it comes to a child with Down syndrome (or any child, for that matter). But, i'm asked on a regular basis questions to the effect of "how smart is she going to be"?

No one actually asks that but that is what they want to know - as if I know. I don't know how smart Lauren is going to be any more than I know how tall she is going to be, what her favorite song is going to be 6 months from now or whether she'll prefer flip-flops over closed-toe shoes.

I do kind of wish i knew though...I find myself torn between this feeling of believing that the more we work with her, the more therapy she receives, the more we challenge her, the more capable she will become and another train of thought that tells me that she is going to become who she is meant to be just by being with us.

I read about other kids with Ds who seem to be doing so well and I am both ecstatic and jealous. There are many people with Ds out there doing exciting and remarkable things and I could not be happier about that. Sometimes, Lauren is that child doing so well and other times she isn't. I know that she is not going to be the brightest child with Ds that there ever was, and I also know that she is not going to fail. I wish I could just be all right with whatever is to be..perhaps the fact that it is such an unknown is what confuses me.

What do I want for Lauren? I want her to know that she is accepted by her family and friends and that she does not have a bunch of limitations placed on her by others. I also want her to know that she is okay just the way she is: she doesn't have to have the biggest vocabularly or the fastest backstroke....she just has to be the best that she can be.

Tonight at Wendy's we met a father raising a teen with Ds and he told me "don't let others decide how well she will do". That's good advice...I hope I can follow it!

Bedtime Stories

For the past few months, my son Gabe has insisted on having me close by as he fell asleep. He has, in his own words, "bad thoughts" that keep him from sleeping. After some tears and gentle pleading, I was finally able to find out what his bad thoughts are.

Gabe is afraid of something terrible happening to his family and of us all dying. This, of course, breaks my heart. I know for a fact that he is really confused by his brother Gaven's death and by Gaven's place in our family. We talk about him often and we have pictures of him throughout the house. When we talk about our sizes, our ages, our interests, Gaven is included. Gabe is always the first person to include this brother he never met, in all activities that include the whole family. Gabe wants to figure out where Gaven fits in as much as he wants to understand the mystery of death.

I'm sad that Gabe has such a heavy heart at times and that he has any cause to worry about anything other than his next soccer game or getting to go outside for recess. But, he does. When a family loses a child, it does indeed affect us all.

Our bedtime ritual includes talking about his bad thoughts, asking God to take them away, praying for the entire family and, if we're lucky, a good chuckle over something silly like Barney's fake playground set and things that Gabe used to like....back in the day when he was 5.

I try not to get too caught up in the sadness and drama of my newly-6 son's world, but I also don't ever want to leave him hanging. It takes alot of energy to face his fears with him, night after night, but I know, like so many other things, he will put this behind him someday. If I can be there for him, in some small way, now, and all along the way, perhaps we will have the type of relationship I hope to have with him when he's a preteen, a teen and an adult: open, trusting, fun, emotional and honest.

On this note, I wish my sweet boy a good night and to all of the little ones out there who have fears, doubts and 'bad thoughts', I ask that your spend that extra 10 minutes with your child now so that they know they are loved.