The Life of Our Dreams – My Messy Beautiful

One evening at bedtime, Sienna started begging for dessert. We let her have dessert now and then (ok, fine… just about every day), but it is most definitely out of the question after toothbrushing and storytime and lights out.

I have to say “no” all the time in our house: “No running!” “No jumping!” “No trying to ride the dog!” (more on that later). But that night I didn’t feel like saying “no” again. I was out of “no”s, but also too tired to get into a back and forth discussion with a very persistent 3-year-old.

So I got creative. “Tonight, you can have sweet dreams. In your dreams, you can have cookies, ice cream, cake, candy, all of the above! And I want you to remember your dreams, so you can tell me all about them in the morning.”

She was skeptical. But interested.

We lay there for a while dreaming up outrageous desserts, until finally I was able to get out of the room without a fuss.

Our little daydream about dessert got me thinking about how wonderful dreams are. No matter what you are allowed to do, whatever happens in your life or whatever happens to your body, you can always be or do anything in your dreams.

Now, I should tell you that Sienna has FOP (Fibrodysplasia Ossificans Progressiva), an ultra-rare condition impacting 1 in 2 million, in which her muscles and soft tissues are progressively turning to bone. Adult patients are essentially frozen in place. If an effective treatment is not found, Sienna could be in a wheelchair by her teens, bedridden by her 20’s, and that’s where I stop with the “what if’s”. Bumps or bruises can speed up the process and cause her to lose motion sooner, hence the “no running” and “no jumping” and “no riding the dog” rules in our house. (although, “no riding the dog” would have been a rule anyways. That’s just common courtesy.)

I try not to think too much about the “what if’s” of FOP because researchers are getting very close to an effective treatment. And I believe that they will get there before Sienna’s FOP progresses much further. You can help them get there sooner by donating to the non-profit to support FOP research for the cure here: http://www.siennasflowergarden.com.

During the day, Sienna can’t run wild like other kids. She can’t do a somersault, swing from the monkey bars, or twirl until she falls down. She can’t even turn on the light switch, pull a shirt over her head or hold my hand when she walks. But in her dreams, Sienna can dance like a prima ballerina ladybug, ride her beloved dog Pepper in a magical dog-equestrian show and perform triple backflips. Or she can imagine a world of chocolate and eat her way through it.

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The next night, I asked Sienna to tell me about her sweet dreams. She told me that she was on a boat in a chocolate river, using her paddle as a scoop. I asked her how many scoops of chocolate she had eaten, and she gleefully told me “800!” (the largest number she knows).

I was feeling like a parenting genius. And also, how fun is this?!

But then, a few nights later, she started to resist eating her dinner. I asked her to pretty please eat just a few more bites of peas. And do you know what she told me?

“Mom, I ALREADY ate a HUGE dinner. In my DREAM!”

TouchĂ©, little one. I guess it’s time for dessert!

* This post is part of the Messy, Beautiful Warrior Project being undertaken by Glennon Melton of Momastery.com. To learn more and join us, CLICK HERE! And to learn about the New York Times Bestselling Memoir Carry On Warrior: The Power of Embracing Your Messy, Beautiful Life, just released in paperback, CLICK HERE!

When I heard Glennon was looking for bloggers to tell their own “Messy, Beautiful” stories, I knew I was in! Dreams are my messy, beautiful coping mechanism for an uncertain future for my daughter. When it comes to my own dreams, I don’t dream about chocolate rivers. I dream about a world where Sienna wakes up, turns on her lights, pulls her shirt over her head, grabs my hand, and we run out the door to buy peas. Just kidding. We’re buying cake.

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3 thoughts on “The Life of Our Dreams – My Messy Beautiful

  1. I researched FOP for a college genetics class. That was nearly 15 years ago, so I am overjoyed to hear that they are nearing a treatment. It is a tragic illness since taking such care to avoid injuries means a child must forego much of the unruly routine of childhood! Luckily nothing can take our dreams from us! Well done teaching her to embrace her dreams so early on!

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