Friday, October 8, 2010

For parents who aren't ready to celebrate Down syndrome

I read a blog yesterday from a mother of a child with Down syndrome. She loves her daughter but she's not ready to celebrate Down syndrome.

I would like to validate this mom. If Down syndrome awareness month is difficult for you because you are not ready to fully embrace the world of special needs; it's okay.

It's okay.

Your journey is simply that: yours. And it is valid.

Every person is different. Some parents get over the shock of a diagnosis in two days and sign up to run a Buddy walk at the end of the month. Others (like me) take a lot longer to process what a child with a disability means to the family.

My first year with Polly was slow going. It was painful.

I was jealous of other mothers who accepted Down syndrome as a small part of their children and moved on. They handled everything so much better than I did. Guilt added to my feelings of failing. It made it difficult to reach out for support. Guilt held me back from allowing myself to grieve. It actually prolonged the process.

Emotions like jealousy and guilt waste energy that would be better spent getting to know your child. They suck up time that could be used seeking out love and support. It's energy you need to take care of yourself.

If you are grieving the loss of the child you expected: It's Okay. Grieve.

If you don't want to go to a Buddy Walk this year. It's Okay. Don't go.

If reading upbeat blogs about families thriving in the world of Down syndrome makes you feel inferior. It's Okay. Don't read them.

Give yourself grace.

If you are forcing yourself to do things your heart is not ready to do, that's not awareness, that is peer pressure.

The only thing to do is love your child.

Even if you don't ever get to the point of running a Buddy walk.

It's Okay.


  1. I love this post! What a beautiful gift you have given these parents. You are absolutely right, everyone's journey is different and there's no "one right way" to feel. And I love that you added the part about grace. It's all about grace :)

  2. Thank you for this wonderful post!

  3. Thank you for expressing this so well! It took me a long time to be okay with it and sometimes I regress and then come back to acceptance - similarly to Evie with the bath! I finally had it in me to go to our first Buddy Walk this year and it went great! But it has taken 3 Buddy Walks passing us by before I could go. Thanks for validating those of us that took, or are taking, the long road to arrive at the Buddy Walk peace. :)

  4. As always, very nicely done.


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