Sharing My Life with Eric

This post was written by Lisa Raffoul, mother and co-founder of Ensemble. Excerpt from "The IDEAL WAY to Cook: Food for Thought".

I remember so vividly the day that Eric was born and every day that followed. After he was born, they placed him in my arms. I looked at him and thought that he was perfect! His face was pink and round, and he looked so peaceful and sweet. I couldn't seem to take my eyes away, for he was more handsome than I had ever imagined. For that one moment, time stood still and it was only me and my baby. That moment would never return.

The first few years after Eric was born were extremely exhausting and emotionally intense. Eric hardly slept, there were numerous stays in the hospital, and we also had another child, Adam, who was two years old. I was so tired that I felt like I was floating through the day. My husband, Lou, and I would take shifts so that we could get our rest; he would stay up late and then wake me up around 2:00 a.m. so that I could take over. I was lucky to get at least three hours of sleep and then I was up to face the day. Eric screamed for most of the day and it was a challenge to spend time with Adam. Once Lou got home, he would take over and I could focus on other things. My parents were a huge help to us and I honestly don't know how we would have made it through this time in our lives without them.

This went on for about four years. During that time, I learned to ask for help and realized that although I was the mom, I definitely needed in-home support. It was very difficult to have someone come into the privacy of our home, but we knew that we couldn't do it alone.

Our lives were filled with doctor's appointments and medical tests. Everyone was trying to figure out what was wrong with him; to try to find a possible "fix". After years of testing and trying to figure out a diagnosis, I said to Lou, "you know what, enough tests, enough questions. He is who he is and that's it. What we have to do is make sure he's happy and offer him the best life we can, and let's carry on with our life."

I believe this was a turning point for us. We no longer viewed Eric as our sick child, but rather just our child. I can't deny, our situation was still very overwhelming and difficult, but at least we stopped letting it consume our lives.

Eric has been our greatest teacher about children. We know that every child is unique. Too often our children are assessed by traditional expectations...how fast can they run, how high can they jump, how far can they throw. While holding a spoon independently may be an easy task for a typical child, for Eric, it was a major milestone achievement. Eric has taught us to look for the uniqueness in all children and realize that each of them has gifts and contributions to offer and that they will achieve success at their own pace according to their own abilities. We have learned to pace ourselves, nurture one another, take each day at a time and appreciate the good in our lives. There is a cliche that says, "success doesn't come without hard work." In our circumstance, the work is grueling, the pace is demanding, but for all that we have learned and for the wisdom we have gained...priceless!

"Ensemble is a parent directed resource for families that have children with disabilities and for related professionals. We offer a continuum of support from the beginning of diagnosis through to adulthood."

Photo: tibchris