What 'the Giant Slide' Reminded About Parenting My Child With Cri Du Chat


My daughter was recently invited to a birthday party at one of those inflatable lands of bounce. As a result of her rare diagnosis, Cri Du Chat syndrome, which includes hypotonia, this tends to be a place she spends more time giggling than bouncing, but nonetheless she has a wonderful time.

For this particular challenge, she was determined to scale the “Great Slide” — four slides of varying difficulties attached together. The first three are the “up” slides attached to a culminating slide where the victorious mountaineer can descend. My daughter started on the most difficult slide. To be successful, she would have to run up the entire thing, cling to a small handle and propel herself to the top. Her little 6-year-old body enthusiastically jumped on and slid all the way to the bottom, giggling all the while.

“Momma help me.”

Off comes my backpack. Off come my shoes. We allow some tiny toddlers to scoot past us, flying up the slide. We got this.

I place her in front of me. We take a running leap and quickly slip our way back to the beginning. Undeterred, she is up. Again.

This time I have a plan. I can push her with one hand while holding onto the railing with the other, as to attack the slick surface. Attempt three, four, five. We come tumbling back to the start. All the while she is laughing.

It is at this point, I notice the parallels. I am facing a physical symbol of this journey as her mother. I have to somehow guide her to the destination, while maintaining my own footing so we can both be successful. However, despite the rope burn, twisted arm, or small child landing on my head, we must uphold the laughter.

I was told many things she would never do. But she wasn’t. It is not an option for her to giggle down the slide. Again.

On the next running start, I learn if I carry her and dig my feet into the sides, we can get further than we did last time. I have never been more grateful to get up at 4 a.m. to go to the gym than I am for this moment. I am strong enough to get us both to the first handle. She clings for it – and misses.

MIGHTY PARTNER RESOURCES

The next journey, she reaches but does not have the strength to hold on. I have learned to shift my weight to gain more balance, and I catch her. We dangle together while the toddlers once again lap us, and I choose to explain how the slide works. If I can hold both of our body weight momentarily, she can perhaps see more closely what she is trying to accomplish, therefore increasing her chances. She reaches towards the yellow handle and holds on. It is enough momentum to push her further and further to the top. She shouts, “I doing it, Momma.” We tumble over the top and land in a heap at the top of the slide.

We did it! I look down to see a dear friend cheering us on. We did it! It may as well have been Mount Rushmore – we are overjoyed!

We giggle our way to the downward slide and victoriously celebrate our achievements. Our cheering section is there to capture the moment.

We jump. We celebrate. We found a way up the slide when everything told us we couldn’t. I’m ready for some water and a bench.

Again.

I am exhausted. It’s been work to get her to this point. I see the other children independently navigating the slide and the other parents making small talk. She can’t do it without me yet. And the accomplishment on her face cannot be ignored.

We are faster this time. But we are not graceful. There are no awards for how you get there – just get there. We are lapped twice by a boy half her age, but we reach the top. And we slide down – cheering all the way.

On our final trip, we pause at the top. I encourage her to look down to see how far up she is. She is using the same laugh she has when she tells her favorite joke, so I know she is ecstatic. I tell her to slide to the descending slide on her own and I will cheer her on from the bottom. I show her the fourth slide is the one that will carry her safely down to me. I know she can come down alone.

I leave her safely perched on top of this inflatable mountain. I climb back to the bottom just in time to see her slide down. However, rather than crossing it to the descending slide #4, she has chosen to slide down one of the “up” slides. I panic. She will get hurt, there are things in her way. She will hit another child. Did anyone notice? She gently bounces off all the obstructions, ricochets past them, glides successfully towards the bottom.

I run over to her. She can barely catch her breath from laughter.

Again.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by Zuberka

TOPICS
JOIN THE CONVERSATION

Related to Cri du Chat Syndrome

family mother and child daughter keep warm and look out the window on a rainy autumn day

I Thought I Knew the Power of Words - Until I Met My Nonverbal Daughter

It started in my basement. Each stuffed animal would sit on top of the ping pong table waiting to find out if they passed the spelling quiz. Beary could never spell “because” correctly and would have to stay after school to get some more help. Words were never his thing. Luckily for him – they [...]
Jim Chalmers running.

This 'Marathon Man' With Cri du Chat Syndrome Defies Stereotypes

In the wake of the 2015 Special Olympics World Summer Games in Los Angeles, my family and I attended a send-off celebration for Minnesota athletes traveling to California to compete. We strongly believe in their mission of promoting inclusion and providing opportunity for people with disabilities. It’s making a difference, and we’ve seen it specifically [...]
Ella

When the Experts Were Wrong About My Daughter With Cri du Chat Syndrome

Cri du Chat (CDC) Awareness Week is upon us again. The reason for this week is very important to raise awareness for my daughter Ella’s  syndrome. When she was diagnosed, the experts told me Ella would never crawl, walk or communicate. She would die young and her quality of life would be limited. A Google [...]

The Mantra That Gets Me Through Difficult Days With My Son’s Rare Diagnosis

Most people don’t know what to say when they discover you have a child with a rare diagnosis, and the fact is I don’t talk to most people about it (as odd as it is as this is open for anyone to read). But in the wake of A’s diagnosis with cri du chat syndrome, I [...]