I wasn’t much for causes as a young adult. Oh, I had opinions, and I respected people who fought for what they believed in, but I just never spoke out. Nothing drove me to that point. I participated in walk-a-thons and read-a-thons for MS and other things, but I wasn’t engaged. Nothing mattered enough to move me that far.
And then I had a very premature baby. Life as I knew it was upended, changed forever. All my dreams were shattered. I had a baby fighting for his life, dependent upon me to advocate for him. I prayed, I begged God to save him, I watched him battle for every breath, every second of every hour of every day. I thought to myself, “If this tiny boy can fight this hard, I can fight just as hard for him.” I discovered a voice I didn’t knew I had – a strength in myself I never knew existed.
Fast-forward four years, and my discovery of how research funded by the March of Dimes had essentially saved his life. Add to that their providing of an online support community in which I found others who spoke my preemie-mom language, who understood my fears, my anxiety, my grief, my pain. And then an outlet, a focus….we formed a family team to fundraise and walk in that organization’s annual March for Babies. I haven’t looked back. We’ve served as a local Ambassador Family, speaking at numerous events, participating in radio, news, and print interviews, my precious boy’s photos splashed across all sorts of media.
Then there came the autism diagnosis for Little Man, four years ago now. I had to again learn to advocate for my child, reach down deep inside and gather a strength I didn’t know I was capable of, to fight for my child’s needs and a place in a world completely NOT designed for him.
My voice – both written and spoken – was found through my children. I didn’t choose this path. I didn’t choose these battles. But they are our story. I speak out. I write. I advocate. I research. I help others just starting similar journeys. More than this, I’ve been given the courage to use my voice in other areas of life.
Today is World Prematurity Awareness Day. I’m wearing purple in honor of my beautiful survivor, for all those other precious babies who have come out the other side of a too-soon birth, and those for whom their early birth took them from this earth. We in this house are perfectly aware of Prematurity. We’ve lived it. But the voice I gained sixteen years ago, and the voice I have continued to develop over those same sixteen years, enables me to reach out and help others around me be aware of the severity of the problem of prematurity.