Sunday, July 10, 2011


I have a confession.  I have become a stalker.  Not the creepy type (hopefully), but the aware and interested type.  I find myself looking for people with Down syndrome (or any disability) everywhere I go.  When I see someone, I just want to watch them.  Ok, I realize that does sound a bit creepy, but I promise you it's not!  I want to watch and learn.  I want to see how people react to them, and how their friends interact with them.  I want to learn how to be a part of this new world.
Making silly faces!

For you other mothers out there, it's a little like when you were pregnant for the first time.  All of a sudden you see expectant mothers everywhere you go.  You try to figure out how far along they are.  You notice if they have other children.  You take note of what they are wearing and how they are walking.  It's a learning experience.

A couple of months ago Matt and I took Luke to South Carolina for a week.  During that week, we observed two different families traveling with children with autism.  I was locked into these families.  I know staring is not socially acceptable, so I tried to be cautious, but it was so amazing to watch.  I had the opportunity to tell one of the mothers how wonderful she was.  Her son must have been around 12 years old and she parented him beautifully.  She let him have his space, intervened when necessary and showed him love every step of the way.

My eyes have been opened.  In the past, I never would have seen that mother for who she was, or her son for who he was.  I would have looked away.

It is embarrassing and humbling to become aware of your own ignorance.   How often do we only interact with people who are easy to talk to?  Easy to understand?  Easy to accept?

A little child shall lead them.

Luke has already made me a better person and he is only 5 1/2 months old.  It's hard to remember who I was before his birth.

Before Luke entered our lives, I turned away.  Not because I didn't care, but because I didn't know how to interact with someone who was ... disabled  ...  handicapped ... had special needs... I'm not sure what word to use.  I know now how to use person first language, but beyond that I still struggle with how to talk about disabilities.  I also struggle with the term "special" because I think all people are special, not just ones with different abilities.  And yet ...  Luke is special, and he will have different needs throughout his life.  It may sound strange, but I am still not entirely comfortable around people with different abilities, but now I make an effort.  I try.  I put myself out there, and dare to make a mistake. 

"You'll grow into it."  That was the advice from a mother who has raised a daughter with an extra chromosome for over 20 years.  She reassured me that there is time to figure everything out, or at least some of it.  I can't imagine we'll ever have it all figured out.


Since Luke's birth, I have become aware.

Aware of every single person around me.

Aware that most TV shows, commercials, books and magazines do not have images of people with different abilities.

Aware that at some point the other shoe is going to drop.

Aware of how people look at Luke.

Aware of conversations that deal with marriage, college, moving out ...

Aware that I am now a "press 2 for pediatric specialty" instead of a "press 1 for pediatrics."

Aware of every interaction I have with Luke, and wonder if I'm doing enough.

Aware of pregnant mothers, and how unaware they are.

Aware that I have most likely had interactions with people who have terminated a pregnancy due to Down syndrome or another prenatal diagnosis.

Aware that we all have disabilities, some are just more obvious than others.

Aware that our family has gotten closer because of Luke.

Awareness is a single step, and one that will most likely seem small in a few years.  But for right now, it's a big one.  I wish I could say I knew all of this before Luke entered our lives, but I didn't.

My eyes are opened and I will never go back.


  1. Beautifully said, Claire. And we all have something that we can use from our own lives to encourage and enlighten someone else. Since I began wearing an insulin pump 2 years ago, several "strangers" have come up to me and started such a conversation based on their own personal experience or one of a friend or family member, and now I look for similar opportunities to "pass it on". Thank you for encouraging me to step out and encourage someone else! God bless you and your precious family. Joan Strauss

  2. This is what I meant when I said Luke will be a bigger blessing to your family than you could ever imagine. Not just because we have to re-evaluate what our life's perfect plan may be (there isn't one). . . but because we become sensitive to the world -- not just the world of Down syndrome -- but the world of everyone --someone with even more challenges, hoping you're not thinking 'I'm glad I don't have THAT to deal with. . .' or diabetics at the potluck who cannot eat all the wonderful desserts 'everyone else can' -- the person who is belittled or controlled by someone in power over them -- or made fun of -- and they take it out on someone who is weaker -- spouse, child, animal. Or not being intimidated by the snobbiest of people; many times they are the most insecure. The more you try and put yourself into their world, the more you understand, and all the more able you are to meet them in their world with great confidance and love. Unafraid to allow them in, unafraid of other people, because they can trust you to value them just as they are. Luke is teaching acceptance, understanding, confidance and love to the world.----as are Gwenyth and Colin -- and anyone who has the ability to view people simply in all confidance and love.

  3. Very Inspiring Claire, I think we can all take home great wisdom from your experience. I also like and agree with with everything Julie said.
    May God grant you all the necessary strength, wisdom and love through this journey.

  4. Sue says:
    Clair, thanks again for sharing. Since Katie is 13, I have in the past 10 yrs, we are more alert of my surroundings. When we do see someone with differing abilities, Katie usually mentions it and we introduce ourselves. Find out where they live and how they are doing. Always getting pointers from those around us.


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