Friday, September 18, 2009

With Heaping Spoonfuls of Love

Life is unpredictable. Years ago when I was in college I worked in a residential home for adults who had developmental disabilities. I worked with a man that had cerebral palsy who was non-verbal. He loved listening to music especially, when he was angry, "Alive" by Pearl Jam at full blast. I will never forget him. The odd thing was that I remembered that same man from my childhood, our families went to the same church for a short time, and I can remember watching him rocking, constantly rocking back and forth in the church pew. I met his mother once, years later at the residential home. I was young and naive and made judgements about her that I regret. Later I learned that she had two adult children; the man I worked with and his brother who had been paralyzed from the neck down during a tragic accident, who she was caring for at home.

Now as a mother I still think of that family often. I know that I will be caring for William his entire life. He is making progress, small things that I am proud of, yet I am a realist. I try to take one day at a time but my mind occasionally wonders ahead. When I first was told the severity of William's brain scan and outlook I balked at the idea of having to care for him into adulthood. Wayne and I would say that our lives were over that we didn't think we could do it and then lapse into depressed silence. Two years have passed and part of me is still selfishly clinging to my old dreams but love has changed me. William has changed me and I am thankful just to have him with me.

The truth is this: I am selfish and yet I am not, I want more for William and for myself. I want William to live a full life with love, joy, new experiences, exploration, everything I have had and more. How will he do these things if he is not able to walk, talk, see, or even care for himself. How will I give him the care he needs without losing myself? Life is unpredictable and I don't have answers.

The truth is that I am in love with my son and this love carries and strengthens me. Love for my son changes my outlook and makes all things possible.


  1. Life IS unpredictable, and it's difficult to even imagine what your lives will look like when William is an adult, but I know you will do it. Whatever path you choose for him and for your family, you are living and loving him. That is so clear.

    I'm really curious about the judgments you made about that other mother. I think it would be really wonderful (and so very brave) if you could share them with us.

  2. Kate, I have been thinking about your question; what judgements did I make about the mother who placed her adult son in a group home? Keep in mind that this was ten years ago that I worked in that group home.

    Since I really did not know the mother I suppose I was only seeing one side of the story; the sons. He seemed unhappy and that is what I based my judgments on. I am not entirely sure why he was unhappy, it was probably frustration and a combination of factors. I saw that he valued his personal space yet had to be "supervised" even when in the shower and had to share a bedroom. In the several years I worked there I only saw the parents visit a few times. I was also shocked at how some of the staff treated the adults. Not outright abuse but demeaning attitudes. The staff turnover rate was also very high. So the adults often had new people helping them with personal care areas.

    So I guess in my opinion it did not seem like the best fit for him and I wondered why his mother did not see that. Yet, I was only seeing one side and perhaps seeing things she did not have the chance to. I was also ignorant of the facts; like would there have been any other living options for him; like a group apartment. Could he function with a little more independence, would that have given him any more contentment in his life? I don't know.

  3. You are a mom, and you are honest.