Something Has Come Between Us

Sometimes I imagine myself many years down the road as an old woman alone in a houseful of books. My daughter will be grown and having adventures of her own, my son may still be living with me but my husband will have left me. Once he realizes the true love of my life this will surely be the case.

I think he already has an inkling that something has come between us. Yes, I admit when the children and my husband are nestled in their beds fast asleep I am with "the other love of my life." Who can blame me. When the day is done and I have wholly and completely given myself to my children, my home, and my husband who wouldn't crave a little adventure. Perhaps a little action, romance, laughter, and even a little murder mystery......

Yes, I love my husband. Yet, when he says to me, " Erin, come to bed" I find myself looking to that book thrown on the couch that I have abandoned for way to long....... and besides I know he will be asleep in less than ten minutes. So in the end I choose my books. Actually, I just had an idea while writing this little blurb. So here it is; I pretend to go to sleep with Wayne and as soon as he falls asleep I sneak out of bed and go to my books!!!! Then after a few precious hours of reading I will return to bed because lets face it even scandalous ladies such as myself need sleep ;-) Aha, its the perfect plan. Maybe now I can picture myself as an old woman in a cozy home with marvelous wall to wall bookshelves, a gas fireplace warmly glowing, a glass of whiskey in hand AND a handsome hubby rubbing my tired feet ;-)

* No I don't drink whiskey; but surely by old age I will. Its family tradition ;-) *

Peek-a-boo I HEAR you

William is listening very intently, he knows Ella is near...............
William hears Ella enter the room as she is roaring like a lion.....LOL
William coo's for Ella to come back; apparently he is enjoying the game! He is even trying to look in the right direction! This is something their mommy loves to see :-)

So Big!

My baby boy is getting so big! Sometimes it is easy to miss how much progress he has made because he is always with his twin sister who is typically developing. Even as his mom I sometimes overlook all that he has done. Just last week someone dear to me said, " Erin, you are underestimating him." At first I was a little taken back and angry but soon realized that she was right. Although my love for him is strong I saw that my expectations for him were very low. I suppose it was a sort of self-defense mechanism that I unconsciously used. Although his progress is slow he IS moving forward when seizures are kept under decent control; which is always a struggle. Just last week William was almost rolling for his Physical therapist. She placed her hands on the muscles he needed to use and gave a little pressure to activate them. Then slowly very slowly he rolled without being directly manipulated!!!!! This is HUGE for William. It really opened my eyes to seeing what my son can do. Not only has he begun to use his muscles to reach and roll but also has been eating like a champ and using his vision more. This morning I noticed that he was holding his hand in front of his face longer than usual. At first it seemed like he was itching his nose, which he does often, but then he just held it there and watched it!! He was looking at his own hand. For a child with a cortical vision impairment this is also HUGE!! He is also starting to feel his diaper when I change him. Learning to use his hands to explore his environment has been a tremendous accomplishment.

I could write a few more paragraphs on how proud I am of my son! He is such an amazing boy that is getting big so fast. I hope others can see the seemingly small things he can do and realize just how huge those accomplishments are. Way to go William!!!

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