I bought my niece a book.
Buying her a book is not a new thing or a thing worthy of a blog post. What is worthy of a blog post is that my niece is not like everyone else.
Her ribs are flared out instead of following the normal path. Her body moves a bit differently than everyone else’s. She has a “giddy up in her hitch” as we say. Her body can’t tolerate as much action as the rest of us can.
A lot more is physically different about her than every other 4-year-old.
When I see my niece, I see a beautiful child who works harder, endures pain longer, laughs louder, smiles brighter, and is just full of more life than a lot of adults I know.
I see a little girl who runs as hard as she can to keep up with others – especially my boys. A little girl who dances beautifully as her ribs and legs flare a bit differently in her leotard. A little girl who also acknowledges when she reaches her limits and needs to rest or use a stroller. I see a little girl who endures medical tests, treatments, surgeries, and doctors. I see a little girl who can inspire so many people – if they just allow themselves to see beyond her age.
She and her younger sister have a long road ahead of them. They both have been diagnosed with Morquio Syndrome/MPS IV Type A.
My sister explains it best in that the body is missing or does not produce enough of a specific enzyme. That missing enzyme is what breaks down the natural long sugars that the body produces. The unbroken down long sugars build up in the body causing skeletal abnormalities and can lead to problems with vision, hearing, and the heart. It is a progressive condition with no current cure. Currently, clinical trials are underway for an enzyme replacement therapy. My nieces are in the process of becoming a part of these clinical trials.
The book I bought for my niece is Willow by Denise Brennan Nelson and Rosemarie Brennan.
I first noticed the book because of the title. It is my niece’s first name. Willow.
I bought the book because the reviews and description said the phrase “except Willow” occurs throughout the book. I wasn’t sure what to fully expect, and I had the book shipped to my house first. That way I could read it and “approve” it for my niece’s sister’s sake.
This simple book left me with tears in my eyes. I won’t share with you the details of the book. I wouldn’t want to ruin it for you!
My prayer is that as Willow goes through life and hears things such as “except Willow” she will have an even greater impact than the heroine in this story.
So Willow, keep being “except Willow.” Because you are special. You are inspiring. You are brave. You are resilient. You are my niece!
I’m posting every Tuesday as part of the weekly Slice of Life over at Two Writing Teachers.