Tuesday, September 22, 2009

Playtime Positions for William

Last month William finally began seeing the physical therapist that I have been wanting for over a year. He loves her and often greets her with a "coo" and smile. This is a rare treat considering that he used to scream for his physical therapy sessions. Since having this new PT William has been able to try several different types of standers, floor sitters, and more fabulous equipment. She is the equipment queen and often buys pieces on her own to loan out to her children. Today we tried a child rite floor sitter which is like a huge Bumbo with a higher back. William is able to sit independently and work on head control while playing. I included pictures of William in this chair with a table and of William in the Leckey stander which we have on loan. Also shown are pictures of William using a Rifton corner chair and playing with sparkly beads during light box time. We use the light box nightly to strengthen his vision.

So when you have a vision for your child it is worth fighting for. It has been a long journey and difficult at times to get the therapist I really wanted for William. I wish we had known about her when we first started EI but I am grateful that William gets a whole year with her.

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.

Thursday, September 10, 2009

Balloon Gazing

Last weekend Wayne and I took the babies to see some hot air balloons. It was neat to watch dozens of balloons inflate and lift into the air. They made a striking sight like so many sparkling jewels suspended in the sky. Beautiful bold colors in many different designs. Ella especially loved the barn balloon complete with a cow and pig. William gave no indication that he could see them. I had to remind myself that he does enjoy new experiences just not in the same ways I do. He seemed entertained listening to all the new sounds and voices around him. I stopped to listen and think, "what does William hear?". All the sounds that I may not have paid much attention to because I was relying so much on my vision. That is William's world. Yet I still mourned that he could not see such a beautiful sight.

Wednesday, September 9, 2009