Fast Forward

I remember the conversation as if it occurred yesterday. The physician, with his dark thick hair, freshly starched white coat that had his name embroidered in the standard maroon stitching, was in the hall of the Big Prestigious Academic Medical Center talking to a young couple. The mother, a young Hispanic woman, was holding her baby in this car seat type baby holder, that detaches for carrying. The physician recognized her and had stopped her in the hallway to ask how it was going with her Dear Son. The mother was all smiles and told him that things were going well. The physician, much wiser, knelt down by the baby, looked the mother in the eyes and spoke with her. He nodded while she told him how well things were going, but sat there quietly, intently listening, and ever so kind. The father sat quietly behind the mother, never saying a word. I was with Dear Son, adjusting him in his wheelchair, while finishing up one of Dear Son’s many tests. I was within earshot of the exchange.

The mother thought she was handling it quite well, I am sure, despite the fact that her son would have many disabilities, from what I could gather from the conversation. The baby, her son, looked pretty normal to a casual observer since the disabilities don’t become apparent to the outside world until you pick the baby up or they see that he can’t do something. That’s the beauty of the seizure babies, they can look so beautiful and so normal. Dear Son was a few years old at the time, and I distinctly remember the physician’s words while identifying whole heartedly with the mother. I could tell she was in love with her son, like I was with mine. I had also been in her shoes. You think you are handling it well, because you love your son and because there is not much else you can do. And yet, I understood that this conversation was much more than a “How are you doing?” The physician was looking at her life some twenty years down the road and knew full well all the hardships and bumps that would come along the way. I thought I knew too, but in hindsight, I had only touched the tip of the iceberg. Their conversation, would be stored in the back of my mind, and re-played from time to time, like it did on Saturday.

Saturday, was to be an exciting day. The Lions Club, as they do every year, invite all of the disabled children and adults in surrounding communities to a play at the local theater followed by a luncheon in the Grand Ballroom. All of the fees for the luncheon and the play are paid for by donations to the Lions Club. The event is pretty successful and is very nice. The Lions Club does a fantastic job of preparing for the event and making it a fun day for us. It is always appreciated. It is probably one of the few times that I go to an event with Dear Son, where it is “easy”. Easy, by definition, because they have a lot of volunteers that offer to push Dear Son in his wheelchair, up and down the steep ramp to the theater. The theater seats have been removed for wheelchairs. Children in wheelchairs, compromise only about 10% of the attendees, from what I could tell. The rest of disabled children and adults, had some stage of physical or mental disability. What was nice, was that this was a family event, so everyone in the immediate family was invited.

We get to the event and are welcomed by the Medinah Shrine Clowns and the Easter Bunny. The Lions President, works the room, as he does every year, making everyone feel welcome. But perhaps most striking on this particular day were the families. It was the first time that I actually saw the lives that they were living. It was just like the image of the physician talking to the young mother. I saw all of these families living the life with a disabled child and then as a disabled adult. I saw the children, I saw the struggles, and it was all the same. This was in striking contrast to the extremely elegant surroundings where eight five foot round chandeliers hung above us and ten smaller ones lit up the sides of the theatre. It was the type of surroundings that normally wouldn’t allow, anything but the “beautiful” people inside.

The play was a success, and just about the right amount of time, only one hour long, perfect for this audience, since many couldn’t sit still much longer. Lunch followed in the Grand Ballroom, which was filled with red, blue and yellow balloons commemorating this happy occasion. Lunch was served and the issues began. I attempt to feed Dear Son a hamburger knowing full well that he probably won’t chew it and the texture will be too much for him. He holds it in his mouth and refuses to chew, making a face and then holding the hamburger in his mouth for fifteen minutes before spitting it out. He refuses to eat anything there or even the yogurt and juice that I brought along. The little girl next to me, is dressed in a beautiful black and white top, with black beads hanging from the bottom of her top and her pants. She is all dressed in her finest, and looked beautiful. Her mother feeds her too and tells me how she needs a new “tilt” wheelchair but the insurance won’t allow it. She asks me how I lift Dear Son, since her ten year old, the one in the wheelchair, is now 85 pounds and getting heavy. The beautiful little girl was proud though, because she got to wear her “pretty” sandals, the ones she can’t wear every day because she has to wear the leg braces. The little boy sits across the table in his wheelchair, while his father feeds him, his leg braces hidden under the table. So all in all, same issues, different families to be repeated throughout the Grand Ballroom. There are many days were life is hard, but today was great. Great, because you get to relax and talk to other parents and children and great because the children are having fun and being normal. As it should be.