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.

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.

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.

Some Late Summer Moments

Run, Run, Run

Wayne and I took the twins on a little family adventure today to a local farm. We had a nice time showing Ella the animals and imitating their noises. The rooster was especially chatty. William slept most of the time in his adapted jogging stroller which made for a smooth ride over the fields and mud. The farm is run by a local agency that operates group homes for adults with disabilities so it was completely handicap accessible with nice ramps and some paved paths. This is where I need to stop and vent. While we were strolling along one of those smooth paths I couldn't help but to overhear a mother (because she was shouting) for her girls to "stop running and walk." "Walk, walk, walk," she shouted over and over again. It is really not that uncommon for adults to be telling children to walk yet it really struck a nerve today. I literally stopped pushing William's stroller and watched the woman's three beautiful daughters laughing and running as children should be. What was the worst that would happen if the girls fell? A scrapped knee? A bloody lip?

So there we were on a beautiful day enjoying time together and the pain strikes fresh and new once again. Will my son ever be able to walk let alone run? I can hope.

I began to push my stroller again and looked ahead on the path to where my daughter was running and laughing at the sheep. She looked so beautiful and carefree in the bright sunlight. I will not be the one to tell her to stop running.

"Run, Run, Run," I say, " If they can let them Run!!!!"

Tough Decisions

In my community is the only state certified child care home for medically fragile children! All of William's terrific therapists go there to work with children. A few months back the Occupational therapist, whom I trust and respect, handed me a information folder and application. I told her I was not looking to have care outside the home and put the folder on my crowded bookshelf.  I trusted her judgment that is was a wonderful place but was just not ready yet.

Recently a friend of mine called to tell me of her wonderful experience leaving her son there one day a week so she can work and spend time with her older daughter.  She encouraged me to visit and I did not; I told her I was fine and I had the help of my mother.  

This month my mom has been working everyday and I have been without help more often.  My mom is terrific and she comes to help when I ask and schedule it with her in advance. So I began to think that it would be nice having more help and not having to relay solely on my mom. I called Daystar and scheduled  a visit. It was not at all what I had imagined or expected. The house was on a cozy little street in a quite neighborhood.  Inside the house was beautifully decorated and completely kid friendly. I was given a tour and met many friendly women who seemed very devoted to the children they serve. Many were certified nurses.  It was truly a unique place that I want to be part of.  Now the question is can I leave William there for one day a week without judging myself harshly? Usually the home has a waiting list but I was told that many children were graduating and I could pick any day of the week! I would love to have time to get errands done and time alone with Ella.  It would be wonderful for Ella to have mommy time but I am not sure if I can leave William for an entire day in someone else's care besides my moms? Now I have some tough decisions to make!!!

A wonderful summer moment

I have been trying to get William to enjoy the water and this little whale pool is just right for him. With his limited vision he likes to feel snug and secure so this tiny pool helps to cool him off without upsetting him. The only catch is that Ella also loves the whale pool and tries to climb in with him which makes for a pool crammed full of cute naked babies!!! Wayne snapped this picture during one of those perfect summer moments of sun and relaxation. Ella was trying to splash William and I and I was caught up in laughter! Laughter and sunshine.......those are two things I could use more of in my life.