By Deb Whitman

Since my son Luke was diagnosed with a genetic disorder, I have learned to accept things in my life I never would have thought possible before. As parents, we face challenges every day with our kids. We make decisions that will mold the kind of adult they will become. When we find out our child has special needs, those challenges can become daunting. One of the first things I did was set up a support system. I went to “Changed By A Child” support group. I called everyone I knew; I needed to know who would be there for me. At first, it was frustrating because I felt pitied. Once I was able to see past the fact that I didn’t want to be pitied, I found ways to let the people in my life know. It wasn’t always easy and I, of course, found out who my real friends were. I went online and found out everything I could about my son’s disorder and I armed myself with education. I let myself make a lot of mistakes without beating myself up and I asked a lot of questions. I didn’t know I was coping at that point.  You never do when you are in the middle of the chaos that comes with a special needs diagnosis. I only knew that I had to find a balance in my life. Instead of my baby adjusting to us, we were adjusting to him. I am grateful for my deep spirituality; it has really seen me through the toughest times. I knew that God sent Luke to me for some reason.  I just didn’t know what it was, but He trusted us with this very special child and I wasn’t going to let Him down. 

When you learn your child has a disability you go through the same grief as those who lose a loved one. The difference is you have to make changes and adjustments in your life that you would not in the case of death. You also have to let go. Let go of the child you thought you would have. For me I had dreamed of Luke chasing after his older brothers and going to school with them. He has three older brothers and I am realizing as we drive to soccer or karate or pick the older boys up from school, that Luke, who is now 2, may never have the same experiences as my other kids. What I’ve tried to do is be grateful for the fact that I am not pulling my hair out trying to keep him out of things and that he isn’t torturing me with the terrible twos. It works for a while. I also have started researching schools and Special Olympics for him and I am learning to let go of what I have always done for my kids and adapt to what he needs. What I have learned is that he needs my love, just like my other kids. That is something that is not different. Letting go is sometimes the hardest thing we can do. It isn’t reasonable to think that if I let go, I will somehow stop grieving all together.  Sometimes, at the park or the mall, you might see a child the same age who is typical and can do things your child can’t.  You may grieve that loss all over again. Each time, you may let go a little more. The best feeling was when I learned to embrace Luke’s life as part of mine and the rest of our family.  

Over this last year, I look back and I see how my husband and I are very lucky. We made it through and our marriage is strong. Take time with your spouse: don’t let your child’s disability come before everything. When I put it in perspective, I was surprised to see how we survived. I am now active with the IEIC and my energy as an activist is still there. I don’t know how much I can improve things for families who have kids with disabilities, but if I can make a difference for one child it is worth it. I found that when I started putting my anger, grief and frustration into my volunteer work I became a much happier mom. Find something that is good for you. Read, write in a journal or just get out of the house for a cup of coffee with a friend. Take care of you and let go of what you can’t change.