I often answer the phone absentmindedly, not thinking a disaster could be happening on the other end of the line. But a few weeks ago my cell phone rang and it was my son Bobby’s Day Program administrator.

My heart always skips a beat when I hear from his caregivers or his day program and then I ask: “is everything alright?” This time there was a very short hesitation and then the response: “Bobby is ok now, but I wanted to let you know he choked on a hot dog and we had to call the EMT’s and do the Heimlich maneuver. He is resting now, they checked him out and he’s ok.” “Any ribs broken?” I asked. “No, he’s fine, just tired.”

His choking has always been a huge fear of mine. When he was 3 years old, he choked on a banana and I was home alone with him and had to get it out. I did the Heimlich maneuver and had to turn him upside down as well, all the while with adrenaline shooting through my body and my heart racing a mile a minute.

His choking this time lasted about 45 seconds and I could only imagine his fear. He doesn’t talk except for a few words, so he couldn’t tell me what he felt – I only know for sure what I was feeling when I heard; fear and sadness that he had to go through that ordeal and that I could have lost him that day.

Since the banana incident, I have been obsessed with cutting his food into small pieces, even pizza, hamburgers, everything. If he has a seizure while he’s eating he is more likely to choke and I always hope someone is watching closely. When he’s away at camp, that’s one of the first things I tell the counselors, “He always has to have someone with him when he eats”.

I realize everyone always does the best they can when they care for Bobby, but of course being his mom I still worry. I have been blessed with great caregivers, counselors and teachers throughout his whole life. In the training I give them on his care, I review everything from seizure activity and all the types he’s had, his 24 medications a day, to how to put his leg brace on and his shoes, to which arm goes in his shirt first so he won’t break a finger on his paralyzed arm. All the details of his life are written down including which words and gestures he uses to communicate.

It’s overwhelming for me sometimes, so I’m sure for everyone else it must be very scary to be responsible for his life and his living.
Knowing that everyone does the best they can, I try to ally their fears and let them know in advance, that if something happens to Bobby, it wasn’t their fault, just do the very best you can for him and that’s all I can ever ask. I don’t want anyone to ever have guilt for the rest of their lives.

However, Bobby is the shining star to everyone he meets and cares for him. I’m told over and over again how his sensitivity has made them feel better, changed their perspective on people with disabilities and changed their lives, and he is always the favorite camper at camp.
He will be 32 years old this month, a Valentine’s Day baby, how appropriate for him, he is always so filled with love and I’m sure he has an old spirit. Even with his mental retardation he is by far the smartest person I know, loving unconditionally the people in his life. And isn’t that what we all aspire to – a higher love and most of all - acceptance of others as they are with no expectations.

Bobby has taught me most of my life’s lessons and with his mental age of 3, his joy for life, his zest for living and with his ability to live in the present, I often wonder who really is the one who is disabled, Bobby or me? I don’t think it’s him.

Love and kisses,

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