April 12, 2008 - The Story of Audrey Caroline

As mommy to a child with developmental disabilities, sometimes I become overwhelmed by all the facts, the diagnoses, the prognoses, the prescriptions, the therapies, etc. etc. etc. I forget what a blessing Brianna is to my life. Two things tonight have served to drive home just how special she is.

It's funny how something as simple as a television show can impact someone so much. I was watching the show "Secret Life of a Soccer Mom" on TLC. Tonight's episode featured a woman who, for the past six years, has stayed at home with her children, a daughter and a son. Her decision to be a stay at home mom came when she was five months pregnant and found out that her son would be born with Spina Bifida. To top it all off, she later found out that her son is mildly autistic.

This woman is amazing. Her son is on more medications than I ever want to see Brianna prescribed. It would be difficult enough to deal with the issues that come along with spina bifida. Trying to get a disabled child to do something in therapy, when they are tired, in pain, and fed up, is difficult enough. But you add on the added issues of autism, the behavioral issues, the ticks and quirks, and I'd probably tear out my hair. And she does it on her own. Her husband works constantly, leaving as early as 3am, and getting home, sometimes not until 8 or 9 pm. And yet, she gives props to single moms. She says she doesn't know how we do it. I don't know how she does it. I really don't.

Anyway, something she said during the show really impacted me. She said that, staying home with the kids, giving up her career, giving up a part of herself, in essence short changed her kids. In order to be the best mom she can be, she has to do things for herself, too. I know this is a concept that is constantly thrown out there for moms. But as a parent of a disabled child, you often feel as if you have to be there 100% of the time. This was an observation this woman made, as well as an observation I've made numerous times. It feels like a betrayal to leave Brianna in the care of someone else and go to work. Who's going to make sure she gets the exercises she needs? Who is going to cuddle her and soothe her when she has a retching spell or a seizure, or a noise startles her? Who is going to go to her appointments, her therapies, her classes? Who is going to be the voice for her and her needs, if I'm too busy working to speak up? And so, it's been easier to stay home with Brianna, to live, or rather, subsist, off of welfare and SSI. It's less scary. But the fact of the matter is, by staying home with Brianna, by not doing anything for me, by becoming a shadow of myself, I am doing neither of us a favor. Brianna will never learn to survive and thrive without me, if I don't give her the chance to learn. So, I'm going to look for work again. For certain this time. My baby is too important to me to continue living the way we have been.

The other event of tonight: I read a blog that a friend, Denise, posted a link to, and it absolutely broke my heart. Those of you familiar with Christian music might be familiar with the group, Selah. Well, one of the wife of one of the group members created a blog to chronicle the journey of her pregnancy with her daughter, Audrey Caroline. It's a bittersweet story, with a bittersweet ending. But it's threaded throughout with so much love for this child who, through her life and death, has touched the lives of so many others. Knowing that their daughter would probably not live, that the chances were so very slim, the Smiths still chose to carry her, to bear her, and to love her, as if she were not dying. As if, from her very conception, she was more than just their daughter. She was a miracle. The words to describe the impact of this story on me escape me. It's beautiful, and poignant, and my heart aches and lifts with the emotions. The most important thing it has shown me, though, is how very lucky I am to have Brianna with me. To be able to love her, and see her smile, and know that, thanks to God and the efforts of so many doctors, she is alive and with me, regardless of any disabilities she has. I am so very blessed by her, in so many ways.