Sunday, October 29, 2006

Some Moments

Lately, I've been feeling pretty good Clare-wise. We have been dealing with her delay in gross motor skills, which can be frustrating, as well as some eating issues, but other than that, I've had very few "this isn't fair" moments. (There were MANY of those in the weeks and months following Clare's diagnosis!) However, I did have one hit me the other day.

We went to a Halloween party. The other kids were from Jamie's playgroup from when he was a toddler. Now there are younger siblings as well, so there were nine little ones ages 3 and under at the party. Clare was not the youngest, but she is the only one who is not mobile. She seemed to have fun, but didn't really seem to get what was going on. She did not get to participate in any of the activities (other than eating pizza and donuts), but I think she enjoyed watching (if watching intently and smiling means having fun). We lined all the costumed kids up to take a group photo in the living room (much easier said than done!). After all the craziness and sitting still, the kids decided they were done with taking photos, and they all scattered. I was in the kitchen by this point. When I saw all the kids streaking by, I went back into the living room, and there was Clare. Sitting on the floor all by herself in a big, empty room, when before she had been surrounded by friends. She just looked up at me and raised her hands up to me. My heart broke just a tad bit more in that moment. Those are the moments that catch me unaware. I think I'm doing good and accepting all this, and then it just all gets to me again. I know Clare is not always shut out or set apart or different, and I know that this happens to all children at one time or another, but it is still so incredibly tough on a mother to see. Maybe because I KNOW without a doubt that Clare will have these moments in the future. They are inevitable. One of the saddest things I saw on the videos we watched about Williams syndrome is that the older individuals know they are different. They talk about how it is hard to make friends or fit in. They may not be considered smart or intelligent by typical standards, but they are definitely smart enough to know what's going on. And I wish I could shield her from all that. We have this gorgeous, happy, little girl, and I do not want her to know any of that fear or pain or feelings of being different that I know she is going to experience later in life.

I'm a happy-ending kind of girl, and this story does have a happy ending. Just as I was stepping close to Clare to pick her up, we were once again surrounded by a bevy of kids. Instantly, they were all over Clare. She was kissed and hugged and squeezed. Clare basked in her shower of love, and I finally had to step in and rescue her before she got squashed too much. Because she IS loved, and that's also important. The children may be young, but they know that Clare is something special, and they love her. We all do.

11 comments:

nichole said...

i think clare looks so much like her aunt christina in those pictures!

Kerry said...

I think my heart broke right when yours did - but I'm glad that your day ended happy. She is so adorable!

I hate those moments when you feel your mother-lion mode needs to come in and protect your youngins.
Love -K

Nancy said...

You always seem to have such a great attitude about the whole WS thing. However, it is nice to know two things about you: (1) You still have your moments, like me, although I am much newer at this, and (2) you can have those moments and still see the sweet in bittersweet. My weekend was much more sweet than bitter, although I am still struggling. Thank you for being you. Your family is beautiful.

Nancy

Aunt Joan said...

Teresa - What a beautiful column today! I think you will always have "those moments", but it sounds like you have found a few ways to handle them. I am sorry that life will not always be fair to Clare, but know she is beautiful, special and very much loved - even by those who have never met her!! Happy Halloween to all of you! Love to all, Joan

Lisa R said...

UGGG this post made me cry...I know how you must have felt to see her alone in there.

Kati said...

Oh, I know "these moments"... But we have to deal with them unfortunately. Sometimes I simply feel pain in my stomach while thinking about these moments and I can't imagine what will be when he is getting older. But don't give up, they are lovely!!!!

Big hugs, Kati

Amy K said...

Clare really isn't alone, she has us today, and in the years to come. She'll have Av, and Tate, and Erik, Daven and more. Our kids are not alone, because this is a different world than what we saw in the WS video. Remember that, I love you guys,
Amy

Aspen said...

Oh my heart breaks right along with yours. Tears filled my eyes as I read this morning. Like you said, the heartache for these children is inevitable. But who could resist such an amazing smile. Clare's smile can light up any room. Even from my computer!

I love you both!

Nicole said...

Hi Teresa, I just love that you are a happy-ending kind of a girl. Clare has such a beautiful smile and spirit. People and kids will always be drawn to her, I know that I am! Thinking of you.

Kim, Grandma to Ava,ws said...

It hurts sometimes, I know. I cannot get past Ava's disinterest in "Peekaboo". My kids loved it-big, ole belly laughs every time. Not Ava. She just stares at me and doesn't even blink. It is those moments, just like at your party, when you remember that your child or grandchild is different. I wish I knew how to make it go away. Thank goodness Clare has YOU..cause I know that you will always be there to comfort when she is alone. I love your family!

Christina said...

Can Clare possibly get any more beautiful? (I love that Nichole M. thinks she looks like me! -Thank you, Nichole!!) Like so many others, I experienced tears while reading this post. I don't ever want Clare to feel pain or loneliness... and I think that Amy K. makes a great point - Clare is being raised in a more recent, accepting time. And WS is hopefully going to become more recognized.

I think most important thing is the amazing love that Clare inspires in me... and I'm sure she inspires it in SO MANY people!! Everything that makes her different also makes her beautiful, wonderful, special Clare - the niece I couldn't imagine loving more.