Thirty years ago today you were barely expecting. You knew there would be a third child but in those days there was no advance notice of gender or deformity or anything else. It was not a problematic pregnancy and your son arrived on a Sunday morning. Already named Jonathan in the hopes that the baby would be a boy, he was beautiful and alert.
On day one you noticed a strange attitude in the nurses and the pediatrician. They gave you pamphlets from the March of Dimes with titles like “This Baby Needs You Even More”. They would not answer any questions about why Jonathan would not suckle, just taught you how to enlarge the nipple hole so he could drink better. A loving mother and dad do not notice anything unusual in their newborn son unless it is specifically pointed out to them, so you and your family took Jonathan home along with pamphlets and questions and just proceeded on with life.
At his six week checkup, you and your husband were the last people in the waiting room, even though your appointment had been scheduled. The pediatrician slowly went about showing outward features of Jonathan that were different from normal babies. You were very slow to absorb what was being said. Sure, he had big lips and sure he had some difficulty sucking. But yet, until she said the words Down Syndrome, and showed you the genetic chart, did you realize what was being told to you.
The doctor told you and your husband that Jonathan was lucky to have two parents who were teachers and that he would get lots of help from us. She said that her son had juvenile diabetes and was lucky to have two parents that were doctors. You did not see the similarity at all. You left the office in tears. You went home and started to phone family members.
Fast forward a decade, for there is too much uncertainty and grief in the early years to recall it all. It is just too painful to relive all those emotions. So fast forward a decade to the days when your mentally challenged son dumped wood ashes all over himself while seated on the new sofa. To the days when your delayed son learned to ride a two wheeler because his older sister just would not give up on him. To the days when your son with Down Syndrome won a prize at the Science Fair for a project he really did do all by himself. Pride is the only emotion that follow love for this child who works so hard to accomplish each task he does. You now laugh and cry over his antics, not over his lack of them. You speak in public and in private to those doctors and nurses who were afraid to tell you the truth when he was born. You start support groups where there were none. You travel to Hershey and Pittsburgh and State College for the advice of experts for specials glasses , for equipment like a standing box and special toys. You wish you could put him on the big blue farm tractor, which he now drives in the fields, take him down the PA Turnpike and right up into the office suite of the psychologist that told you he would never drive a tractor.
It is now 2015. Your son will turn 30 years old in September. He lives independently in a lovely group home with supportive staff and peers. He has a job site that he attends every day. He goes to dances, drumming, horse riding, swim aerobics, church, bowling, movies and makes the most amazing latch hook rugs which he gives away to his friends. You would not give him back for a “normal” son in a million years. The road has been tough but you have been assertive and determine that he grow up to be a responsible and independent adult in whatever way is possible. He never misses sending a birthday card and called to sing Happy Birthday to all family, however extended. He never misses buying his monthly DVD with his paycheck. And he never misses baking bread and splitting firewood with Dad when he is home. Here’s to many more decades of memories and good living. You certainly can make it from here on.
Love, 2015 Self