Sunday, June 04, 2006

The Big Day

Dear Son’s schooling began at the age of three. I was very worried, sending a child off to school, who could not walk, talk, feed himself or do much of anything. The school bus would arrive at our home, and I would wheel him onto the little yellow school bus, then leave for my part time job. Dear Son loved school. I was so worried and yet, he adjusted so well. There were seven children in his classroom, five little girls, and two boys, one of which was Dear Son. His teacher called it Dear Son’s harem, because the little girls would circle around him and dote on his every move. I found this hard to believe, until I attended one day, and saw the little girls in a circle around him. He would look at something, and one of the little girls, would couldn’t walk herself, would scoot her body across the floor, like a mermaid, and retrieve the object for him. He would give her a big smile and the scenario would repeat itself many times a day during the school year.

School consisted of physical, occupational and speech therapy, on a regular basis. Therapy was hard for him, not only didn’t his hands and arms work, but he had fluctuating tone in his body, which made therapy more difficult. His shoulders and chest had extremely low tone and he was quite floppy at times. Everything he did, was just plain difficult. He’d take naps at school too, always in the same spot, nestled in a corner, near the teacher’s desk. Substitute teachers would soon learn the routine, when they’d try to move him to a different area, and then he would fuss until they put him back into the same spot.

But there was one thing Dear Son wanted more than anything. He wanted to walk. Walking was problematic because he couldn’t use a regular walker because his arms and hands didn’t work. He required a special walker that would attach around his torso, to assist him. He always loved the physical therapist the best, because he’d get to practice. He’d get annoyed at the activities to build strength for walking, he just wanted to walk. And when he did, he would come alive. His face would light up, he would squeal and he would try to get his feet to move really, really fast, forgetting everything the therapist just taught him about standing and balancing. He wanted to go. And he wanted to go fast!

He would work so hard at doing things that just came so easily for most other kids. He would endure countless minutes in a stander every day, a stander where the kids have their leg braces on and are strapped upright in a standing position to increase their ability to weight bear on their legs and to help their bones grow strong. If you have ever witnessed a child in there, it’s not very pleasant to watch. When they can’t talk, it’s even more difficult, because you worry that when they get tired, and they can’t speak, that they can’t tell anyone. I asked the little girl who went to school with Dear Son years ago, who I wrote about in the Bingo story, what it was like to stand in the stander. She was the young lady who at fifteen, just had her sixth hip surgery. She said, “It really hurts. Sometimes, after I am in there five minutes, my legs really hurt and I try not to think about it.” The children were sometimes in these standers, for up to forty five minutes. I wrote too about Dear Son, in “The Silent Champ” where he worked for three years on trying to pull himself upright into a sitting position. My point is that these kids work hard, and have worked hard for years.

Years passed and the kids grew with him. Neighborhood kids that were the same age, wanted nothing to do with Dear Son. They weren’t being mean, they just didn’t have anything in common. He couldn’t talk or walk so he couldn’t play the same sports as they did and his hands didn’t work, so there were never any game boys or anything else for him to play. Bikes were out of the question and just about everything else was too. There was nothing that was normal, that they did, that he did too. He was like an outcast.

The Special Needs Programs were great though and Dear Son flourished. His friends on the little yellow bus and in his classroom were great. Always the extrovert, always the handsome boy with a great smile, that was Dear Son.

So in January, I received a letter regarding his high school placement in the fall, which means he would be graduating from the eighth grade this year. Curious, I sent an e-mail to our District Coordinator to see if he would be receiving a “real” diploma, a different certificate, or none at all. While I know that he certainly doesn’t meet the requirements for graduation in an academic sense, he still deserves some credit, for working so hard. She responded and said that he will get a “real” diploma. I was estastic. For once, Dear Son will be normal. Average. Like everyone else.

Eighth grade graduation pictures were taken in February. In early May, I wrote the check for the cap and gown. They would be green, the school colors, which would look great on Dear Son. Graduation was just around the corner. I was so excited. Then, the MRSA pneumonia occurred. At this point, hoping he survives becomes my number one priority and graduation was the furthest thing from my mind. While he was on the ventilator, I received a visit from the school nurse and the District Coordinator of the Special Education Program. During the course of our visit, the District Coordinator mentioned how much she knew I was looking forward to the “graduation” and that she hoped Dear Son would recover and attend. My eyes began to tear up. It was the kind of conversation that you have with someone when you know there isn’t a snowball’s chance that this might really happen, but you say it because you are trying to be nice and give them hope. On that day, I was just glad he had lived through Mother’s Day, but he was still on a ventilator and I thought he might die.

Fortunately, Dear Son did recover from the MRSA pneumonia and I was asking his doc about his recovery. He said that the recovery is typically two to three months, so Dear Son would not be returning to school. My hopes for the graduation were dashed. On a whim, I decided to ask him if he could attend. He said that he imagined I could strap him in his wheelchair and wheel him into the graduation, if I wanted to, but that he didn’t think he’d be ready. I spoke with his teacher last week, about the big day. She agreed to attend rehearsals and offered to take him into the gymnasium to receive his diploma, if he is able.

Dear Son is home now. He’s happy, he’s smiling and I have been talking to him about this big day, on Tuesday, June 6th, 2006. I can’t wait. We plan on attending the graduation, unless of course, he is not feeling well. I will finally get to see my son graduate. And get a real diploma. And be normal, for one day. This graduation, is for me. I’ve earned it.


Peg said...

You sure have earned it. Congratulations to Dream, Mom and Dear Son! Happy 8th Grade Graduation.

I am so happy that you made it through this last battle with illness. I just read all of the posts telling the story. You are a remarkable woman to have gone through all of that and still somehow manage to have a very positive spin on everything.
Don't forget to take care of yourself, but above all have a fabulous time at the graduation...take lots of pictures :)

shj said...

A big glad you are home, and congrats on the graduation. My youngest, 22-mos old, is an amputee, so I know what it feels like to wish for your child to be normal. I respect you so much for being such a strong woman--I don't know what I would do in your situation.

Peace & blessings to you and DS!

zoe said...

Pomp and Circumstance or Bust!! Praying that Dear Som feels well enough to attend his graduation day!!

Emily said...

How wonderful to read,that you are both home again!!!

I'll be thinking of you and Dear Son and saying my prayers that he is able to attend his graduation.

Your writing is so very eloquent! I hope that one day you will consider writing a book, if you haven't already. These entries are certainly a wonderful beginning.

Hugs to you Dream Mom and Dear Son.

Awesome Mom said...

How exciting. He sure earned his day in the sun and I am glad that he will be able to attend.

Fat Doctor said...

Hang that sucker on a prominent spot on a prominent wall in a gold frame!

Loracs said...

I have been so touched by your writing. My partner of 23 years is disabled; a form of MD and he uses a power wheelchair. Stories he has told me of his youth resonate in your writing. Sometimes I turn off the tv and I share one of your posts with him.

Congratulations to both of you!

Cathy said...

I'am so hoping he will be feeling well enough to go tomorrow. I can hardly wait to get all the news of how that day went. As BMD says, "hang that sucker on a wall."

Wrkinprogress said...

I, too, will keep fingers crossed for a wonderful graduation day that INCLUDES Dear Son. His online Auntees and Uncles will be with you all in spirit and love. :)


Waverider2 said...

Congratulations Dream Mom and Dear Son. I wish there was an even better way society could recognize the powerful accomplishments you have made. You are teachers for us all. Keep on writing.

Dream Mom said...

You guys are really the best! Thank you for such nice comments. I really appreciate them.

Shj-I am sorry you have to go through that with your child. No mother or child deserves a life any less than normal. Peace.

Loracs-I am reminded of some cousins of mine who had MD. My father's sister had two boys affected by it. It was very hard to watch. Here's hoping your days are filled with much love and peace. It is nice to know he can relate to some of these posts. I am always surprised by the number of people who can identify with them.

Anonymous said...

Happy 8th grade graduation Dear son! WOO HOO!

Having watched my brother graduate from school to a workshop program (complete w/cap & gown) I know how proud you must feel.

Kim said...

This is wonderful!

To receive a true diploma for the true work he has attempted and accomplished , to wear the cap and gown....

I have just caught up on all but the last post and today IS June 6th.

I am hoping so badly that you made it to that special ceremony today, and that Dear Son is still with you and through you, with us.

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