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Monday, January 21, 2013

What You Hope To Say

When you have a child with special needs, you hope that you will get to say the kinds of things that other parents hope to say too:
"Run to first base!"
"Great job on your report card!"
"I'm so proud of you for four years of hard work in high school."
"You're the most beautiful bride I've ever seen."

But you also dream of other things, phrases that other parents don't ever think about.

You dream of saying "Take little bites!" because it means your child is eating on her own.

You dream of saying "Stay away from the stairs" because it means your child is walking.

You dream of saying "Leave your brother alone!" because it means that your child can keep up with his or her sibling.

You dream of saying "Let's get packed up for our vacation" because it means your child is well enough to travel.

You dream of being able to tell the school nurse that "He's going to stay home with a bad cold" because if that is your biggest health concern, you'll be so grateful.

A few weeks ago, I happened upon a blog post that I immediately sent to DeDe, and it really resonated with both of us. When you have a child who is born with special needs, who is not as society describes as "normal", your expectations and perceptions of your entire reality change. You suffer a bit of a loss from the child you expected. But you also experience another loss - the loss of the mother you expected to be.

The kind of mother who takes her kids to the museum and library on a weekly basis instead of therapy and doctors appointments. The kind of mother who mixes up her own baby food instead of running a feeding tube each day. The kind of mother who spends summer mornings at the pool instead of trapped inside because the air is too hot and the water is too cold for my child's body. The kind of mother who braids her daughter's hair instead of cutting out dead skin stuck in the fuzz that is barely growing out of her scalp.

But while it's easy to feel some of this loss of both the child I expected to have and the mother I expected to be, I also get to be Brenna's mother. And everything that we have been through together has made me a much more accepting and empathetic person and a much more appreciative and involved mom than the mother I would have been.

It makes me all the more grateful for the opportunity to tell Brenna the things that other parents might say without a second thought and to celebrate every little thing that she achieves that come so naturally to other children.

I am so excited to congratulate Brenna on the day of her high school graduation and to tell her how beautiful she looks on her wedding day.

And in the meantime, I will be waiting with a hopeful heart for the day that that I can say "take smaller bites!"


  1. Remember how long we waited to see pictures of Brenna smiling? Now you post pictures of her smiling every day. Brenna has already climbed her first mountain.

  2. Your post reminds me of a poem that my friend shared with me about her experience raising her wonderful daughter who just happens to have some different needs (Down's Syndrome) than other children:

  3. I saw my friend Stella Young speak over the weekend. Stella has osteogenesis imperfecta - brittle bones. She is very small, and in a wheelchair. Stella is the smartest, wisest and most outspoken person I know. Google her. She's one of Australia's leading disability activists. One timing that stuck with me was when she said she loves her parents most for having more children even though they new the risks, and this: that they saw her disability as a blessing, not a disaster or a loss. I love that thought.
    You will say so many "normal" words to Brenna. You will.

  4. What a great post, Courtney. I have been reading your blog for a long time but have never posted. My son is 25 and has a rare syndrome. He functions at about the 24 to 36 month level cognitively. He is almost 5 feet tall now and weighs 100 pounds although we carried him until he was 10. I can totally relate to your points in this post. I am amazed at how you have already figured out so much of this in such a short time. I'm still trying!! It is the little things that will get you through. We celebrated when he learned to drink out of a straw at 5. I cried when I saw him carry his own lunch tray at school when he was 12 years old. The Welcome to Holland poem is a good one. Another CdLS mom made a necklace in honor of her son's birthday one year and the inscription is "Find Joy In The Unexpected". There will be all kinds of joy you will notice where you would least expect it! Can't wait to hear more about Brenna!!

  5. Wow, such a great post Courtney! Hang in there, I promise you will see lots of joyful times.

  6. I hope you get to chide Brenna about eating too much as soon as possible!

  7. What a beautiful post. I got tears in my eyes reading it. You are a great mom to both your kids and they are lucky to have you.

  8. Courtney this is such a great post and it truly puts a lot of things into perspective for me. While none of my four beautiful babies have disabilities, I often find myself being very hard on them. I'm a perfectionist and oftentimes it's hard for me to let go. Reading your post made me realize if a messy room, unfolded clothes, or something not put in it's proper place is my biggest worry then I'm doing fairly good. Thanks for the inspiration, perspective, and change in heart.

  9. What a wonderful post, Courtney, and what beautiful comments. I guess acceptance is the answer. And acceptance doesn't mean you have to always like something, it just means that you have to accept that this is God's plan, and that you get to go with it from there. God bless you all. You are all in my prayers, especially you right now.

  10. Hi Courtney! My son is 14 months with nethertons syndrome, another form of Ichthyosis. Although I don't think it's related to Ichthyosis, he was slow to take people food. If its wasn't a bottle or totally liquified baby food he wanted nothing to do with it. In fact, if there was the tiniest chunk in his baby food, he would gag and throw up. Only about a month ago he started eating people food, and he did it with gusto! I truly believe it wasn't til we added the baby plate and baby fork that he started to "try". He wanted to be a big person all along. I know you get a lot of advice, I love hearing you share, and wanted to share myself.

    I enjoy reading your blogs. I truly relate to as parents with children of these rare diseases, we are all looking for hope. The trick is finding and embracing the inspiration like found in your blog. I know that when our baby was born the word Ichthyosis consumed us, but now it seems so normal and no longer a bad word. Im so lucky to have this beautiful and happy baby boy. Love is a wonderful thing!


  12. It sounds like you are very blessed to have Brenna, and Brenna is very blessed to have you. :)


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