I Believe in the Child I Had

Shelley - Greenwich, Connecticut
Entered on March 17, 2009
Age Group: 30 - 50

I believe it is better to be born with Down syndrome than not to be born at all.

I believe it is better to hear a rattled delivery room nurse whisper that your newborn child “may have issues”—and to stare hard at that little, wrinkled purple face in case it is the last time you see him alive–than to hear that the amnio came back positive for chromosomal abnormality and what would you like to do now.

I believe it is better to thread a feeding tube down the nose of a baby whose lips and tongue are just not strong enough to suck the milk he needs than to empty out your womb in order to “try again” for a “healthy” child.

I am not sure I believe it is better to wrap your baby in a fuzzy blue blanket so that all you see are bright eyes in a round face, and not the ears positioned just a little off kilter, the back of the neck stretched out just a little too long.

I am not sure you need to wait so long before you tell his sisters that their brother has Down syndrome, but in those days, I thought that if we didn’t label him, the limits that came with the label might not apply. Developmental disability…it doesn’t trip easily off the tongue.

But Down syndrome is more than a label and much less than the disease some say it is. Down syndrome is one way of being human—and it defined my son from the moment of his conception when he somehow ended up with three 21st chromosomes instead of two.

I believe it is better to rock your restless baby to sleep, to catch your laughing toddler as he leaps into the pool, to feed your two-year old pizza just for the pleasure of hearing him say his favorite word than to pass on these joys because he will never go to college, or play on a sports team, or drive a car, or have a job (although people with Down syndrome do all these things).

I believe it is better never to hear a doctor say, with a stricken look on his face, “It’s leukemia,” when you were hoping the lump on his jaw was just a passing infection.

I know it is better never to be summoned from one’s bed to a pediatric ICU by the words, “pupils fixed and dilated,” to have to summon in turn a neighbor to watch your older children, to comfort her as she arrives in tears.

I believe it is better to insist that you will hold your child all night if necessary, that you will will his lungs to work hard enough that the resident won’t have to ventilate him and I believe that it is possible to forgive yourself if you cannot stay awake all night to make this happen.

I believe it is better to bury your two and a half year old, and to recall, when you visit his gravestone, his smell, his smile, and his love for the world than to have decided two and half years and six months earlier, that the life inside you had one too many chromosomes to risk seeing how it might turn out.