Tuesday, October 31, 2006

Happy Halloween

In case you missed it, here are some photos of Dear Son’s Halloween costumes through the years:

Age 1-M & M

Age 4.5- The Scarecrow

Age 5.5- The Cat in the Hat

Age 6.5- The Chef

Age 9.5- The Tin Man

Age 10.5- The Jack in the Box
There are some gaps through the years, when he was sick.

I am not back to blogging but just an occasional post here and there. A new post, “The Swing” is below.

Monday, October 30, 2006

The Swing

Dear Son was quite young when we moved into our new house. He was three at the time and our backyard looked out over the pond. The back yard was empty, devoid of landscaping, devoid of anything, other than the new sod that had just been layed. But the view was spectacular. The aerators were located in the middle and far ends of the pond and our house was directly even with the center of the pond, so we could see the water rising up high into the air and even better, hear it settle back down into the pond. It was beautiful and tranquil at the same time. You could see the pond from nearly every room in the house, which I loved. The bay windows in the kitchen allowed for a panoramic view when you sat at the kitchen table, regardless of where you were sitting.

Over the next year or so, I purchased a rather large sugar maple, that had to be planted, because it was so big we could not do it ourselves. The sugar maple sat half way between the back of the house and the pond, so it would grow and provide some much needed shade to protect us from the hot west sun. The tree would come to be one of my favorite trees, especially in the fall, when the sun would rise in the east and shine down on the bright orange colored leaves.

At the back of the yard, was the new swing set. It consisted of very large chunks of cedar bolted together. We decided to make it a little wider than most, so that one part could hold a double swing and the other side would be for a special swing that was just for Dear Son. The swing was expensive, as most pieces of orthopedic equipment are, and was $600. It had a high back which he needed for support and a safety strap to hold him him. But it was worth every penny, to see Dear Son laugh and smile as he would swing.

I’d take him out to the swing every day after work. He’d start yelling and laughing, getting louder the closer we got to the swing. Once I positioned him in the swing, he’d quickly proceed to make quick work of his gym shoes, flipping one off followed by the next one in rapid succession, flying high in the air, and watching them fall. Then he’d shuffle his feet as fast as he could, until his socks would fly off of his feet, then his mission was accomplished. A huge grin would settle in over his face, almost as a punctuation mark, emphasizing his glee.

I would push him forever and he would laugh. Sometimes, I would sneak over the Rose of Sharon, located directly south of the swingset, and pull off the large pink blossoms, or dead head them, in between the pushes. When he’d get tired of swinging, I’d take him out and he’d sit next to me on the double swing, me with my arm around him for support, so that he wouldn’t fall. I would sing to him or whisper sweet nothings into his hair kissing his head in between the words.

His birdie, Blackie, a red winged blackbird, sat on the swing set every day. This bird took a liking to Dear Son and would sit on his swing set every day, some times for hours on end. He’d fly over to the triple French door where Dear Son would sit every morning, then fly back and sit on the swing set, once Dear Son left for school. Sometimes, when Dear Son would swing, he would sit on the top of the swing set and sing a song for him. At least that’s what I would tell him.

I remember too the conversation with the physical therapist at about this time. When she heard I let him swing, she quickly scolded me and told me that “swinging would not be good for Dear Son” and then gave me her “medical” reason. I can’t quite remember the words she used, but only the fact that I dismissed her words in a heartbeat and told her so. I told her that Dear Son is happy and smiling when he swings and that anything that makes him happy or makes him laugh, we are going to do “more of” not less of. It was the last time, we went to her.

I sold the house a few years back and moved closer to my job. Our new apartment was located on a golf course and had a clubhouse and double swing that looks over the pond. We quickly made use of the new swing.

We walk six months out of the year, from March through October typically, and all of our walks would start and end with a stint on the swing. Typically, we’d sit there and swing and then after five minutes, Dear Son would start to scoot off the swing, letting me know it was time to go. I’d put him back in the wheelchair and we’d walk a few miles and then finish our walk on the swing. He’s swing for five minutes or so, then try and scoot off, to let me know it was time to go home.

Over the last year, we didn’t walk very often. He didn’t have much physical strength to sit up in the wheelchair and without a tilt wheelchair, I couldn’t tilt him back for more support. He also grew a lot this past year and has gotten quite heavy. Last Saturday, I took him out for our usual walk. As we got closer to the swing, he began to smile and then to vocalize. I pushed the wheelchair over the fresh mulch and attempted to lift him. With his down coat on, I could hardly get my arms around him. The weight of his coat and shoes put it over the edge and I barely managed to lift his 145 pounds into the swing.
With that lift, I sat him on the wooden swing, tucked my arm around him for support and told him that this was the last time. This would be the last time that we could swing because I could no longer lift him into the swing. I told him I loved him and that I was sorry, sorry that we would no longer be able to do the one thing that he loved so much. He looked me in the eye and wouldn’t break the stare. I knew he understood.

We left the swing that day and didn’t look back. The days are getting colder now and there aren’t too many days left that we can walk anymore. I wonder though, how many more things, he’ll have to give up because he can’t do them or because I can’t do it. There’s not much left.

When Dear Son was a young boy, I used to write him a letter from Santa every Christmas. In that letter, I would write about the two or three things that he was able to do that year. Those would be the highlights of the letter. While other mothers were checking off all of the boxes in the baby book, I decided to pitch the book and record his milestones differently. I would write this note on a sheet of construction paper, always in crayon, and always rolled up in his stocking. I would pull out this letter and read it to him every year, while he would sit on my lap. He loved that note. Every note was signed the same way, “All my love, Santa”. I continued this tradition every year, and he always looks forward to it.

So this year, he’s lost his ability to eat by mouth and must be fed through his feeding tube. He is physically weak and now he can no longer swing. What more does he have to give up before it’s just too much? And now that he’s doing less, and giving these things up, what on earth will I write to him? Somehow, saying, “remember when” just won’t cut it in the letter.

Monday, October 02, 2006

Lovely and Amazing-You Made My Day

Most days I still go out to the Site Meter and check to see how many visitors have stopped by my site. Since I’ve quit blogging (although I still write), I have seen the numbers dwindle, however the past few days the numbers have been double. I often check out to see where the referrals are coming from, and most often they are from people doing a google search for information on Hayley Rey and come across the blog I wrote about her some time ago. Most want to know how tall she is, is she anorexic and some want to know about how much money Dr. Rey makes. I don’t know the answer to any of these questions.

Today, I came across a referral and I clicked on the link. It was from a blog called, “Lovely and Amazing”. This blog details a woman’s life with her two children, one of which has Down’s Syndrome. As I clicked on this link, titled “Humble Pie”, I read the most amazing compliment. Here is an excerpt:

“That was my second piece of humble pie today.

Then, as I continued on my cyber cruise, I happened upon true greatness. A woman whose words made my body tingle all over in the way only a superb writer can; a feeling that can only be evoked by a beautiful description of a heartwrenching experience. I strongly encourage you to visit Dream Mom, a blog that is no longer active, but one that is of the highest caliber and written with the eloquence, class, and passion of an old soul. She is whom I want to be when I grow up.

As I glimpsed the moments of her life that she has frozen in time, I sat awestruck at my computer. Awestruck by the beauty inherent in those moments and in her life with Dear Son, and awestruck by the intensity of her life experience.

That, blogland, that was when I threw my fork aside and shoved my entire face in the pie pan. I devoured that humble pie.

Reading Dream Mom's entry Don't Hate Me Because I'm Beautiful also made me realize that maybe my family hasn't been victimized by circumstance; maybe it was only fair that both of my children were born with these two oft described defects. Afterall the yin and yang of life bespeaks of a very delicate balance in nature, one in which you can't have everything..."

Thanks Emily, for making my day. If you get a chance, I urge you to check out her blog called, Lovely and Amazing where she details her life with her daughter Emma Jayne, her Wonder Babe.
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