But looking back, I now know I became a card-carrying member of the grown-up set the morning I looked down at my gorgeous second child, who was only six weeks old, and was struck with the overwhelming feeling that there was something profoundly wrong with her. Yes, I became an adult at 36, the day I knew in my heart that my daughter had significant special needs.
That was the beginning of many, many visits to a host of specialists, therapists and teachers. Countless appointments that started with, “I don’t think it’s anything serious,” and ended with, “Something does seem to be very wrong.” So many invasive tests and procedures that suggested syndromes and diseases that were life-threatening, only to have other tests contradict them. Five MRIs that showed significant brain damage but not one doctor that could tell us what it all meant.
Through it all I had a little girl who needed me to make it better. Yet, I couldn’t. Despite countless professionals reassuring me that she would eventually be OK, she wasn’t.
I have never felt more like an adult. My husband and I were responsible for this little girl. Her future depended on us. The fear that we would screw up was overwhelming at times.
The way I sometimes describe Lizzy’s condition is to compare her to an amazing computer that has all the bells and whistles you could want. Yet each time you turn it on, you get another result. Some days it never turns on. Other days it turns on but gives you information that makes no sense. Then there are the days it may work perfectly for an hour or two and shows you just what an amazing machine it is, only to stop working again.
Before we had Lizzy I believed that doctors, therapists and teachers would always have the answers, and if they didn’t, all I had to do was look harder to find one who did. I lived under the delusion that all I needed was good insurance, a supportive family and a husband who was willing to work as hard as I was, and we would not only find out what was wrong with our sweet girl, we could actually “fix” her.
My friends and family would tell me that I was doing everything I could, but how can that be true when I was unable to help her? My husband and I started to wrap our family in a cocoon. We stopped sharing the more difficult aspects of Lizzy’s issues with our loved ones. I couldn’t take any more looks of pity or comments that I was a saint.
And I was angry. I had always been able to solve any problem that came my way; why couldn’t I do it now when it mattered the most?
I began to realize that my belief that I could always find an answer and a solution came from a place of privilege. One only needs to watch the news or read the paper to see that difficult, horrible things happen to people every day. Why did I think I was immune? What made me so special?
Whenever I have a pang of the “why me’s,” I focus on everything I do have and think about the families who are dealing with everything that we are and more. Many are doing it without the resources and support we are lucky enough to have.
I stopped being consumed with finding the reason behind her condition and started to look for ways to manage it. We were very fortunate to find a doctor who was able to find the right combination of medicines that allow for Lizzy to be able to go to school and sit through a meal with her family. Today she attends a school for children with special needs and is a happy 13-year-old girl who loves princesses, cheerleading, art and music.
Today I see all that we have gone through, and will most likely continue to go through as an odd blessing. I am a much stronger, more understanding adult than I would have ever been if I weren’t the mom of a special princess.
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