Last night, as I was tucking my 2-year old snugly in her bed for the 7,364,732th time, she looked at me with her big brown eyes and said, "Mama, I'm so excited for my birthday. I'm gonna be FREEE!"
The tears welled up and I was thankful for the darkness in her room, so she didn't try to poke at my eyes as I said, "Yes, Baby, you are."
There was a time when everything was not so clear. A time when I couldn't take for granted that my daughter would turn one, two, or, as she likes to say, "freeee!"
My pregnancy was relatively uncomplicated. Sure, I had a third trimester fluid retention problem that left my legs resembling two tree trunks. And yeah, there was that whole first trimester bleeding thing. But overall, it was medically uncomplicated.
Things only got complicated with her birth.
As I pushed my last child out of my body, my doctor said eight words -- eight tiny words -- that forever changed my life. "Becky, there's something wrong with your baby's head."
My world shattered. Something wrong with her arm, her leg, I could've handled. But her head? I'm a nurse, and I knew that this mysterious "head problem" had to be one of two things. One wasn't really a biggie; the other -- that was a huge biggie.
You can guess which she had.
My daughter was born with an encephalocele, a neural tube defect so rare most people haven't heard of it. Her skull had improperly fused well before I knew I was pregnant, leading to the development of some pesky brain matter outside of her skull. When she was just 3 weeks old -- around the time most mothers are complaining about lack of sleep or chapped nipples -- my daughter went under the knife and had neurosurgery to fix her skull.
As much as I joke about parenthood, I have never, ever taken even one breath my children take, one insult they lob at me, one potty training disaster, not one, for granted.
For I now know how precious life is -- how incredible it is that any of us are able to walk around, form sentences, and live. Life is precious. I know that.
And her third birthday, which will occur in a week and a half (January 28), is a milestone I wasn't sure I'd see. For her third birthday, she will, for the first time, have a houseful of people here to celebrate her and to eat cake with. We'll all marvel at the miracle of my daughter, as she runs through the house, scampering after balloons.
For she is the one that lived. And in her short life, she has done more, touched more people than I ever will. She has given hope to others with her condition, inspired me to start a non-profit, and brought light into the hearts of many. Miracles, they don't happen often, but when they do, you'd better sit up and take notice.
And I have. Thanks to her, I have.


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Comments 16
What a beautiful story. My daughter was born with a bilateral cleft lip and palate. I was shocked and had never hear of it before and even though it wasn't life threating, she had her first surgery at 3 months and has had a total of 6 with more to still come. Every time she is put under, it is a very scary time! Children like this and all children born with a harder start in life make you appreciate these "blessing" that we are given in life even more. Don't get me wrong, I love my older child just as much but it is not the same as watching a special need child overcome all that they need to. Happy Birthday to your daughter!
Wonderful story, thanks for that wake-up call. My only daughter will be 1 on January 28th :), and this reminds me never to take her for granted.
God bless - for any parent to have to watch your child go through things like this, it's unimaginable.
This just almost brought me to tears. Life is precious <3