The Loss That Keeps On Giving: Raising A Son With Special Needs

Having our child with Special Needs be the oldest, the first born, creates a certain set of circumstances that haunt me. If you google the personality of the eldest child, you will find qualities such as high achievers, perfectionists, and responsible. Anecdotally, I have observed oldest kids to be the leaders in the family, those that set the tone for the sibling relationships. Moreover, they tend to take a care-taking role over the younger Sibs, not always willingly.

I try hard not to focus on how different Willie is from the typical oldest child. How he has set the tense atmosphere in our family, but it is not the one I had hoped for, imagined, or certainly ever wanted. Most days, I try to embrace the joys that Willie has brought us including wonderful caregivers, other Special Needs peers, and a whole new philosophy of seeing the world. I even work in the field of Special Needs so I can make "lemonade out of lemons," so to speak.

But Meningitis stole my oldest child. Instead of responsible, Willie is eternally dependent and sometimes powerless. Instead of high achieving, Willie is quite limited in those conventional success abilities. Instead of being a perfectionist, Willie is just plain frustrated at his incompetencies. I try hard to bury and ignore this type of loss, as it is especially painful to imagine what Willie might have been like as the eldest child.

The thing about loss though is it finds you even when you are hiding and have your guard down. And it gave me a good punch in my tummy just the other morning.  I am still reeling.

I am lucky and blessed to have a large extended family and was recently attending a Bat Mitzvah. My 13 year old cousin was beaming as she led a beautiful service. The luncheon afterward was just as happy, for a Bat Mitzvah is a joyful occasion. My cousins and I were talking about our children. This particular family has the same exact birth order and age configuration as we do, 3 boys and then a girl at the end. Those girls are both 13 and are handfuls, as most 13 year olds are. And as we were commiserating, my cousin explained that when she is just "done" parenting her little contrary teen, she hands her over to her eldest son, who happens to be living at home post college-graduation. And he swoops in and diffuses the situation, helping with homework or the fashion crises of the moment. For he is the eldest child.

Down I went. My soul was knocked over with my loss. I continued to smile and talk but inside I was one imploding cyclone of pain.  If only Willie could ever help out with our daughter.  If only Willie didn't create the stress that he does in our family. If only my 13 year old daughter didn't have to be Willie's caretaker. If only Willie had never had meningitis in the first place. Oh what a different family we would be.  Seems to be that this loss is the "gift" that keeps on giving.