I doubt you'll ever remember this day. You will have been on this earth for 32 months in two days. We spent all evening in a hospital because tonight very well may be your father's cousin's last hours on earth. We bussed home from Manhattan, discussing what we may and may not have to explain to you. No one wants to explain death to their kids, but it's always a necessity at some point. We avoided the awkward conversation today, as you were too little to actually go to into the ICU ward where Eric is. But you smiled, and giggled, and gave out hugs in the waiting room. A much needed breath of cheer.
Eric was not expected to live beyond 6 months, let alone 24 years. His brain stem is not attached to his spinal cord. He has no mobility. He cannot eat - must be fed via feeding tube. He cannot speak. He does have brain activity, but not a single person has any idea of how much of our world he is cognizant of. For all we know, he could be the world's biggest genius, but trapped inside a broken body with no way out.
I stood by Eric today and looked at him for a while. I wasn't really sure what to say. I was never really able to get to know him... and how could I truly? But I reflected on the way this world works. When I was pregnant with you, they found a hormone missing from my blood and that caused enough concern for me to be sent to a gene therapist. When your father and I told this gene therapist that he has a first cousin with a severe birth defect, that was enough to get me put on watch. Eric was the reason I was monitored so closely. Eric changed the entire scope of my pregnancy with you.
As a mother, I now look at Sue with massive amounts of sympathy. No parent should outlive their child. No child's death is easy for a parent, even for a child as disabled as Eric. I watched you play and laugh and cry this evening. And mostly I realized that Sue was robbed of all of this with Eric. And I wanted to cry... and I thought about how many times she must have had these thoughts the last 24 years and did cry.
So you won't remember Eric. But I want you to know that there was once a disabled boy who never moved or spoke that made a ripple in your life before you were even out of the womb. Sometimes the only thing you need to do to make a difference, is just be.
