Sunday, April 24, 2005

On Hunkering

I spent today in a training program for parents of kids with Down syndrome who volunteer to give support to new parents of babies with Down syndrome. It was a good training session and is a program that I'm very excited about.

But it was also a long day of hearing about kids with Down syndrome and looking at their pictures. It was a long day of listening to - and sharing! - the difficulties that their parents face. It was a long day and I'm exhausted.
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Before Ellie was even born, people encouraged me to go to a local Down syndrome playgroup. When Ellie was about 5 months old, I finally screwed up enough courage to go. I figured that if I went once, I could say I'd tried it and it wasn't for me, quieting the well-meaning but pushy folks.

The playgroup was worse than I'd feared; there were older kids there. Some of them were seriously "involved," as they say, and a couple had obvious behavioral issues. I escaped at a near run after an hour and Ellie and I both sobbed all the way home.

A few months later I gathered my courage and tried again. This time I loved it. There are three little blond-haired, blue-eyed, beautiful babies all born within a week of each other, all doing wonderfully. Ellie looks like a triplet. I now attend the playgroup regularly and value it highly, but it took me until Ellie was nearly a year old before I was ready.

When I shared my feelings at the training this morning, a more experienced volunteer cautioned us that this reaction is normal. Some new parents grasp for contact with other parents of kids with Down syndrome while some new parents need to hunker down for a while.

I like that. I do need to hunker down from time to time. When I hunker down, I focus on my child. I love her truly, madly, deeply. She is so precious to me. She is my child, first and foremost. Thinking about her Down syndrome gets in the way of that love sometimes, and I need to push it aside, hunker down in my little bunker with my baby, and focus on the little girl I know so well and love so dearly.


Blogger Emma said...

The one thing that's been so important to me throughout my life is the fact that my parents always focused on me as a child/person rather than on the fact that I've got CP and need to use a wheelchair. I truly believe I wouldn't be the person I am now if it wasn't for that It sounds to me like your doing a great job and are a great mom!

4:24 AM  
Blogger Moreena said...

You have so many pearls of wisdom on coping, keeping yourself mentally on track while also being a great parent to your beautiful daughter. I love reading your insights.

11:23 PM  
Blogger none said...

The first few months after my son´s diagnosis, I thought someone had snatched away my kid and replaced it with a label.

It was a horrible time.

In time I manage to push the label aside, and everything was well again, but it was a good experience.

It taught me to step back now and then.

1:54 AM  
Anonymous Monica said...

I really connected emotionally when you said, "She is my child, first and foremost. Thinking about her Down syndrome gets in the way of that love sometimes, and I need to push it aside, hunker down" ...and just focus on my child and his tender heart and sweet spirit and wistful eyes. Sometimes I just get so caught up in trying to 'fix' Doug's behavior that I miss connecting with Doug my son. It is wise to put first things first. Establishing order in our family is vital, but when I get so caught up in that goal that I start missing seeing my child for the little boy that he is, the cost has been too high.

9:20 AM  
Blogger Sarahlynn said...

Thank you all. I think it's so interesting that although we all have such different experiences, there are a surprising number of similiarities as well.

Emma, it was especially nice to hear your perspective as the adult child. Thank you. I enjoyed reading your story very much.

12:03 AM  
Blogger Randy said...

I can't say that I don't see autism when I look at my boys, but I don't let that spoil my time with them. I'm blessed with some ability to get on their wavelength and connect deeply with them. I hope that has made a difference, because with two afflicted kids, we never could get it together enough to implement a strict behavior program in the home.

11:08 AM  
Blogger kevin said...


12:05 PM  

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