When the phone rang, I didn’t think twice to pick it up, even though it meant leaving my then five-year-old son and two-year-old daughter alone in the sunroom with a preschool goody bag filled to the brim with Easter candy. I figured it was my mom asking me a quick question about the upcoming holiday. Not for a second did I think I was picking up a call that would change our lives forever and fill me with a terror I had never known before.
When the pediatric neurologist recommended a few weeks before that Lizzy have an MRI, he told me he was not one to routinely schedule this test for a child so young. But he was a little concerned with the size of her head and the shape of her eyes. I was already worried about the significant speech delay that led me to schedule an appointment in the first place. There was a part of me that was relieved my husband and I were not the only ones who suspected something was really wrong with our daughter, but I desperately wanted to believe everyone in our life who said it all would work out.
That was not the case.
The doctor told me that our daughter’s MRI had shown significant damage affecting the white matter in her brain. Serious and life-threatening conditions were mentioned. “Some of these are the worst of the worst” are words that I’ll never forget hearing him say. My whole body felt the words he was saying. The fact that my instinct was right wasn’t comforting at all.
In a matter of minutes, our life changed.
The idea of taking our family, moving to a deserted island, and cocooning ourselves away from the rest of the world crossed my mind. As did the thought that there was no way I was strong enough to handle this. Nor smart enough. I was a theater major and former executive assistant, I simply don’t have the skillset for this monumental task.
I quickly tried to call Joe and when I couldn’t get him, I called my mother. Tears that don’t always come easy for me would not stop flowing.
Keep in mind Tom and Lizzy were still playing in the sunroom with a bag of Easter candy right there for the taking. It finally occurred to me that I better check on them. There they were, covered in chocolate, candy wrappers blanketing the floor, smiling and playing, none the worse for wear. I couldn’t help but laugh. It was in that moment that I knew the answer to the question, how was I going to deal with this? I was just going to have to. I had no other choice. The kids needed to be bathed, and dinner had to be made. The day-to-day tasks of living were not going to stop just because my daughter had a brain disorder.
It’s these day-to-day moments that continue to get me through the tough times, even 17 years later. Thankfully some of the worst disorders the doctor mentioned have been ruled out. But Lizzy does have significant issues and will always need our care. Though she’s now 19, she’s more like a little girl of four in the way she processes the world. In other ways, like her love of heavy metal music or her ability to slam her bedroom door and tell me to leave her alone, she isn’t that different from other girls her age.
I would be lying if I said it’s been easy. It hasn’t been. Not in the least. But through it all, there’s Lizzy. Her spirit and smile fuel me. My love for her gives me strength. Being her mom has taught me that I’m so much stronger than I ever thought I was. I also do my best to take comfort and joy in the here and now. And I laugh. A lot. Just like I did that day I left my kids alone with a bag full of candy.
This piece was originally published on The Special Needs Nest by Kathy Radigan.