I carried my daughter with one arm, her arms wrapped tight around my neck. With my other arm I carried the double inner tube as we slowly made our way to the top of the water slide. My inner tube kept hitting yours, I know you were annoyed, and I apologize.
It would have been easier to put my daughter down, I agree with you, as I noticed how you glared at me for having her perched on my hip. But she has cerebral palsy, and the climb was too much, too high. And I guess I am one of those mothers, the kind that won’t let her daughter miss out on the small pleasures of life because of disability.
When we were a step away from the landing, I pushed the inner tube to the side.
“I am so sorry” I said to you, as once again my inner tube pushed yours.
You didn’t respond with words, but I could see in your eyes you were bothered as you moved your tube away from us. It’s true, the eyes are a window to our emotions.
Then you watched as I put my daughter down.
“Okay sweetheart, hold on real tight okay, don’t let go. Wait here until it’s our turn and I will carry you to the tube.”
That’s when you noticed the way she stands, and how her knees bend a little so she can balance. I watched as your eyes travelled the length of her legs, and you took in the scars that show for the many surgeries she has had. You recognized she wasn’t a typical little girl, she had a disability, and there was a reason I had carried her up all those steps.
You looked straight at me and you smiled a sad smile. It only took that one look for me to see pity all over your face. I think I preferred your annoyance over your pity. I don’t want your pity.
I want you to acknowledge that my daughter is a child first. Your daughter was jumping in anticipation of the ride, mine was just as excited to go down the slide.
I want you to notice her smile, and the fact that her cerebral palsy had little to do with this moment of fun.
I want you to smile at her, and maybe ask, “Are you excited to go down the slide?”
And when you smile at me, I want it to be a real smile, because we’re both mothers, getting in big inner tubes with our little girls; and whooping and hollering as we go down.
I don’t want your pity over what you don’t understand, because our lives are rich and full. She is a little girl with more gumption and determination than you and I will ever have. She is a fighter and a champion in my eyes. And here she is, on a fun family vacation, walking around the water-park holding on to my hand, like many other kids.
And I don’t think that is worthy of pity, on the contrary, it is worthy of respect.
Special Needs Parents, Are You Surviving?
I created a guide with 13 practical ways to help you find peace in the midst of chaos, opt in to make sure you get a copy of this freebie!
I hope you had a blast! Sad that some only see special need instead of a little girl having a great time. We did the water park, too. Crazy fun! Lee
Well said Ellen! I have CP too and i don’t want anybody to pity me or my family.
Beautifully said Ellen.
Just found your BLOG via a wonderful friend. I read many of the posts and find the understanding I have been searching for. I founded a nonprofit to serve children with special needs…and I am a mom of a child with CP. I am beyond sick of hearing….”I’m so sorry” when others discover my daughter has CP. I am not sorry…any more than I would be sorry if your child had blue eyes and not brown, or was taller or shorter or smarter or whatever……When will we accept differences as equal of love and respect. My child’s disability is not something to be sorry for…to be pitied. The greatest Disability or “difficulty” my child faces in her life is not CP, but rather the crippling pain and hurtful actions of typical people. She has not ever shed a tear for having CP…but her heart is broken on a daily basis for the way other kids (and grown ups) treat/view her. And as a Christian…I can say that our experience has been that Christians can be the worst offenders. This saddens me to my core. I am so thrilled to be reading your posts now and see that there is someone who gets it!!! Please continue on in the work God has called you to. Your eloquence to speak for the children He created so beautifully and loves so fully is a gift. Thank you for being a place of grace for me to come to and refill my sometimes empty and always broken pitcher. I look forward to reading past, present and future posts. Blessings!! Wendy from Kindred Kids.org
Wendy, thank you for taking the time to leave a message and share a little bit of your journey and experience. it sounds like you are really working hard on behalf of our kids, thank you!