The Weight of What Isn't

  

         Sometimes I feel the weight of what isn’t.  It lies heavily on my heart. Mostly I focus on the positives about my life.  There are times, though, that it’s hard to find an uplifting view. Because the one thing I struggle with always is living a normal life; and my life isn’t.  Once a special needs child is born into your family your life may never feel normal. No matter how typical you try to be the fact is that things will always be different.  You’ll take vacations, attend family celebrations, go to school and sport activities, and attend town events. You’ll do all the things that families without special needs kids do, but it will be harder and it will feel abnormal.  We all experience things in unique ways, but your experience will be so unique as to be a completely different experience. Case in point: watching a parade. I constantly have to ask people not to stand in front of my daughter in her wheelchair thus blocking her view.  I used to enjoy a parade.  Now I dread attending a parade, which is a shame since my husband is a member of a pipes and drum band and marches numerous times a year. I see people all around me enjoying the spectacle, waving to friends and family marching, applauding and watching while I’m either trying to navigate my way through the crowd with the wheelchair or keeping my daughter’s line of sight clear. Perhaps what is most bothersome to me is how unlike everyone else I feel at those times.

         The weight of what isn’t is isolating if allowed to grow unchecked.  What helps me is regularly having some time to look forward to where I am not primarily known for being mother to a child with special needs.  A part time job, occasional visits with a lifelong friend, and joining a writers club are  ways I found to allow me to be Sue first, and that special needs mother second.  It’s important not to forget who we are, and who we were, to be the best parent possible.  Being known as a good worker, an aspiring writer, and a good friend ultimately help me to be the parent I need to be.