Meet the Team: Carrie

SHARED BY CARRIE A.
BOARD MEMBER OF STORIES FROM THE TRENCHES

Friends, New and Old

Our family’s story with Tim and Jen stretches back to the mid-1990s. My husband, Steve, and Tim were best friends in high school. They lost contact with each other during college, but sometime in early 2006, Tim found Steve online and sent him an email. A friendship was rekindled, only now the circle grew to include spouses and children! I was so excited to meet Tim and Jen—I would no longer be the only girl in the group when Steve and I got together with his friends!

What I didn’t expect was the level of closeness we would develop over the years. This would turn into something much more than a casual, get-together-a-few-times-a-year situation, and we are both better for it.  

Harper Lee wrote, in her famous novel, To Kill a Mockingbird, that "You can choose your friends but you sho’ can’t choose your family." Sometimes, your friends become family, and nowhere is that more evident than in what happened here. In October of 2006, our son, Ted, was diagnosed with Autism. It is amazing what six little letters can do to change all manner of relationships—with family, with people who you thought were friends, and even with your true friends. Eleven months later, our nephew was diagnosed with Autism as well.

I’ve often struggled with "Why me?" and "Why us?" I cannot say that acceptance was always easy. As a parent, Ted’s diagnosis was our first real trench.

The Journey to Stories from the Trenches

That spring, two of my dearest friends were pregnant, due a month apart with sons. I was thrilled that the boys would have each other to play with at family parties. When Jen contacted me to say that Eli’s measurements were off, especially the head, my heart sank. I am a nurse, and my profession can be both a blessing and a curse. I hoped and prayed that it would only be hydrocephalus. Yet, as more and more test results came in, my focus began to change.

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If I have learned one thing in ten years of being a parent of a child with a disability, it is that people do truly want to help in times of crisis; they just need to know how and what.  As such, that is a big part of what we helped Tim and Jen figure out. We brainstormed ideas for what they would need. We told them that they needed to be specific and direct in their needs. Vague requests akin to “any help you give is great” weren’t going to cut it. They needed specific things: money for parking, food at home, childcare for the girls, the list goes on…

One of the things I am most proud of Tim and Jen for was their insistence on acceptance of Eli, just as he is. regardless of how things changed for them. Our house was the only house that Eli ever visited.  I wish I could say that my husband and I had the courage to be as forthright with our son as they were with Eli.  Six months later, I fell into the biggest and deepest trench of my life and it is during that deep, dark trench that I learned to have a voice. I learned to speak my mind, to tell my words to people, to let my voice be heard.  I finally learned to be “Brave.”  Eli’s brief life changed us forever in how we parent Ted. In fact, we call it the “Power of Eli.”  

The Power of Eli doesn’t end there. Eli’s short life showed our daughter Meredith, who was 11 at the time, that all life is beautiful and valuable, even if it is only present here on this Earth for a little while.  

Having experienced a fair number of trenches in my own life, I feel compelled to help others through their trenches.  I have a wonderful group of friends both in real life and through the internet that have seen me through some very dark times.  I am hoping that the coming months will help others to realize that they are not alone in either their struggle or their better times.