Yesterday a lady came into the office where I work. My desk sits behind the receptionist so I don't always see the people she helps. The lady Karen, had been in the office for a few minutes when a co-worker whispered in my ear, "Does her son have Down Syndrome?" I told her I hadn't seen her son so I didn't know. Now I was curious. I decided I needed to use the restroom and walked past them on my way. Her son, he looked like a teenager, was laying on the couch and definitely had Ds.
They were still there when I returned so I sat down in the chair and asked if he was her son. I was looking at him and smiling when I asked. She said yes, then asked in a way that made me think she was tired of people always asking about him. "Yes he's my son. Do YOU have a son with Down Syndrome?" When I told her I had a daughter with Down Syndrome, everything changed. She got a big smile on her face and I could see her relax, "You do??"
We sat and talked for quite a while. Matthew is 23 but has the mental capabilities of a 1 year old. She is the single mom of 4 kids, one is an older daughter who moved out of the house as soon as she could, then Matthew plus 19 year old twin boys. She asked me something that sort of caught me off guard, "Are you still married to Beth's father?" The way she said it, it sounded like it was a rare thing in her circle of family and friends. One of her twin sons helps with respite care, but under the respite rules, she is unable to use that time to work or go to school. You could tell she was tired and lonely.
She pulled a G-tube out of the bag and said that people complain when she feeds Matthew in public. (To be honest, I've heard about g-tubes and seen pictures of them but had never seen one in use.) She attached the tube to the plastic piece on his tummy, opened the small jar of liquid food and poured it in. Matthew began to rock back and forth and she handled that tube like a ninja warrior! She kept moving it so he wouldn't knock it or grab it. I was impressed! She said he's used a g-tube since he was two. I asked her why he had it for so long, but she didn't give me a clear answer.
After a while she stood up and got her things together. I brought over Matthews wheelchair as she grabbed his hands and pulled him up from the couch. She walked him (she was backwards, pulling him forward) over to the chair. He walked like an 11 month old taking his first steps, very slow and deliberate. She sort of swung him around and sat him down.
I got her information and want to call her in a few days. That meeting has me more appreciative of Beth and the life we've been given. I've always told people that for having a child with a disability, I actually have it pretty good. Beth's heart has always been healthy, she hasn't been sick very often and for the most part she is self sufficient.
I haven't stopped thinking about Karen and Matthew. Right this minute she's probably feeding him... with the g-tube. Beth is eating her lunch downstairs. The lunch she fixed by herself. Did she give him a bath last night? Beth took her own shower. I probably won't complain anymore about how much shampoo she uses. Did Karen put him in bed? Does he stay in his bed? I bet she had to put him in a clean diaper before she layed him down. (Last night I went downstairs, gave Beth a hug and told her I was going to bed. I'm not sure what time my daughter went to sleep.)