Tuesday, July 15, 2008


One of the email discussions going around the RTS parents group right now is "how to respond to the question of how old our children are?" The reason this is a topic of discussion is because our RTSweeties often (always!) look younger than they really are...because of short stature (people with RTS are always shorter than their siblings), developmental delay (Natalie didn't walk until 2.5, when typical children walk by at least 1.5) and mental retardation (which causes them to not act their age). Some people are not tactful in expressing their surprise at the older age of our children...which can be very hurtful to we parents who are daily living a life we didn't expect the day we rejoiced over the + sign on the pregnancy test.

Tom and I have been blessed that we haven't felt much awkwardness in this area. I think the prime reason is that we have such a supportive family, friends and church, but there are other reasons as well. With 12 months of swallowing therapy at the local children's hospital, I saw many kids more disabled than Natalie...I rubbed shoulders with the parents of those children, and we all understand each other.

And when a stranger asks Natalie's age, I always say the year (she's 2), instead of the exact months (which is especially telling after one year of age). Now that Natalie is walking, she looks a lot more like a 2-year old...but even two months ago, when she only crawled, I never got the "good grief, she should be walking by now!" in response to my answer, "she's 2." But I will admit that I am happy that I will probably have fewer funny looks for the next few months, since she now walks.

I can remember being much more self-conscious about our daughter's disabilities during the first year. I saw the angel kiss on her forehead (it's faded quite a bit by now) and thought EVERYONE else could see all the physical characteristics that pointed to Rubinstein-Taybi Syndrome. I finally realized that everyone can spot a kid with Down Syndrome, but no one can spot a kid with RTS (ok, well, very few people on the planet...you can, if you look at Natalie and the other kids' blogs I've linked to). So I gradually became less self-conscious.

But the biggest reason we've had no awkwardness is because of Natalie. Her effervescent personality draws everyone to her. If I hear "she is so cute!" once, I hear it five times, every time we go somewhere. She is always getting people to clap with her, and she waves and smiles at people everywhere. I never worry about whether she will "have a fit" when I take her out shopping...I know she will make friends with everyone we see.

All of that being said, the thing that Tom and I have talked about concerning her age is: who will Natalie's friends be in the future? Right now her friends are her own age or mostly younger. But we can see that as she gets further and further behind developmentally, that some of the friends she plays with now may view her as too babyish as they get older. Will the younger kids be willing to pick her up as a friend? Will this become a moot point as she makes friends with other disabled kids (right now she doesn't have any disabled friends)?

Tom and I aren't kept up at night about this, but it's been a recent topic of conversation. We pray that her current friends will continue to be drawn to her, even as strangers are drawn to her now, and she'll make new friends as they come into her life. We're pretty certain this will happen, too!


Heather said...

Yep ... Even though I have never met your family IRL I can say that Natalie seems to just have an awesome personality ... that cute smile is contagious!

Kelly said...


I like your comment about the pregnancy test. It hit home!

Today I was kind of down when I picked Max up from the day-care center he goes to. It is hard to watch all the other kids fly by him developmentally. I was talking to one of the moms about it being hard that Max takes much longer to hit his milestones. The other mother made that comment that he may not hit the milestones as quick as you would like him to, but his personality has to make up for that. That put a smile on my face for the afternoon. And we too have so many people comment on how cute Max is (a lot more than we did with Ava :). It must me the hair!! Take Care!

Jacqui and Lloyd said...

Thanks for sharing. Your positive world view and faithful soul is an inspiration for me.
Jacqui :)