Life With The Disabled .....

As a woman, and a mother of a son who was born with a disability (something I don't like to talk about much), my heart goes out to anyone of similar circumstance. Whether the disability be physical, mental, emotional, a result of birth, of accident none of it matters. Only the present moment matters.

Remembering the day my son was born, I was terribly excited because I already had a daughter and this was just 'perfect'. Now I had a girl and a boy. How wonderful ! My family came and they all ooh'd and aah'd over the new baby. So did I. During the doctor's rounds the next day, he came in and sat on my bed and told me that there might (he did say MIGHT) be a problem and that they'd like to do a blood test. For whatever reason, and maybe it just was from exhaustion, I said ok and didn't give it another thought. My son looked perfect to me. But there was something that didn't seem right. Something I couldn't put my finger on but must have instinctively known.

When the test were back that afternoon (wow, that was quick) the doctor came in again and told me I should call my husband, that he should be here when I was told the results of the test. Brave me, I said that I was ok and the doctor could just tell me now. Well, he did. But it just didn't register until he left my room. What was it he said, that my son was born with Down's Syndrome (Trisomy 21) - an extra chromosome. Shouldn't that make him better than the rest of us. Maybe he should be exceptional. No, No, No......I was told to take him home and love him. That maybe (MAYBE) he would walk and talk and grow up. Holy crap.....what did I give birth to????? How can this be?????

Well, took him home I did. Although he was very jaundiced and we were right back at the hospital one day later - this time to the neo-natal intensive care unit. His jaundice was very, very serious. A blood 'washing' might be in order and that was very, very serious. He could possibly die.

I remember the ride back to the hospital. My husband was very upset and praying out loud that god should help my (our) son live. All I remember doing was feeling very confused. I don't remember praying. I don't remember feeling anything at the time. Thinking back on that moment, I wonder what was wrong with me not to be bargaining with god to save my son at all cost. But I didn't. I actually didn't know if I was up to the task of handling such a future.

24 Hours later, my son was out of danger. His jaundice was disappearing. He would be going home in a couple of days. OK, that's when my mothering instinct seemed to kick into high gear. Well, if I was going to have a child that was labeled mentally retarded/disabled, I was going to figure out a way to give him every opportunity to live the 'best life' he would be able to.

He came home with me two days later. My daughter was in kindergarten at the time and I remember clearly taking her into school and talking to the teacher, explaining about her brother. That afternoon, I got a note from the teacher telling me that she was so proud of her new brother, she went around the classroom asking every student: "My brother has Down's Syndrome, what does yours have"? It was a bitter-sweet, new beginning.

....to be continued
~ The Mediator