Tuesday, May 19, 2009

The Silence

The last two nights, I dreamed that I was having a conversation with Jenelle. Even though I can't remember the exact details of our conversation, it was beautiful dream.

In the first dream, Jenelle was older. We were sitting on some bleachers at a football game for Jack. I think it was high school football. I was so worried and scared. We were sitting really high in the bleachers, and I feared Jenelle would get wiggly and fall. Sensing my worry, she spoke to me and told me that she was going to be OK, and that she would sit quietly and watch the game. She really wanted to concentrate on Jack's game, to watch him make a touchdown. She kept reassuring me that she was OK. After a while, I realized she was older, and calmer so I let the worry fade away. I wondered if the ability to now speak and communicate with us helped to calm her.

In the second dream, Jenelle was the age she is now. We were in Arizona, visiting our friend Lily, and it was hot. Jenelle was very cranky, and was yelling at me that she was very hot. I was amazed that she could talk as was Kim, Lily's Mom. Kim and I decided that she had the ability to talk all along, and the cranky brought it out of her.

I know why I had these dreams, specifically the first one. The other day, I was sitting with my Mother in Law and Jenelle at Jack's baseball game. I was very tired from the chemo, so my Mother in Law was keeping Jenelle occupied. Jenelle is very strong, and when she gets excited, it takes a lot of strength to keep her contained. She was giving my Mother in Law a real work out. My Mother in Law said, "Oh Jenelle, what are we going to do with you when you get even bigger?" That thought has been a reoccurring theme all her life.

When Jenelle was a floppy baby and much like an overweight blob, I worried so very much about having to lift her dead weight in the future. But every time I would fear that once she reached a certain weight I would reach my limit, I became stronger. As did Jenelle. And as I grew stronger in my ability to lift her, Jenelle learned to sit up and walk. And with that ability to finally control her body, she helps us help her. Each time I fear the next stage with Jenelle, it has always worked it self out.

I know in my heart that even though Jenelle is silent today, that someday soon we will communicate. If she can master the word "mum", I know she can have more words. It will work itself out just like it did before. I think my dream was trying to tell me that once we find a way to break the silence and communicate with Jenelle, she will calm down and things will be OK. Speaking of silence, please go check out a recent post from Dr. Danielle where she talks about a different sort of silence we all fear as special needs parents.

It was a beautiful dream. And in my heart, I know it can happen someday.


Unknown said...

I like how you say that things with Jenelle have just worked themselves out. Of course you guys really helped her get to this point too. But I agree she will communicate too. Maybe not perfectly, but it will work out.

Kim said...

Glad the awful AZ heat could bring it out of her!! :)
I have those dreams all the time with Lily, never walking, ALWAYS talking. And the voice is always so sweet...
Now when is Janelle coming to visit her friend Lily? :)
Always thinking of you guys, hope you're feeling ok.

Reagan Leigh said...

I have similar dreams. Ones that have Reagan walking flawlessly from across the room to me and others where she's speaking sentences. I hope all of our dreams come true!! (And thanks for the link to Danielle's post...it was a good one!)

Unknown said...

I accidentally stumbled onto Danielle's Silence post, and wound up here through your comment.

My son is 10 (almost 11***) with Lennox Gastaut and a whole bunch of other fun diagnoses.

We were told from the beginning not to expect much - he would never communicate. And boy, were they wrong :) He's still nonverbal, but the boy gets his point across quite well. He's got us all trained.

We've done the whole list of AED's, and VNS implant, with little success, until now. We started Banzyl (sp?) 20 days ago, adding it to his Phenobarb, Keppra, and Ativan. First week was hell, as usual, but... in the past 13 days, he's only had a total of SIX seizures. Our average, pre-Banzyl, was about 45-100 per day.

Just wanted to comment because this is the first time I've come across another blog about a family dealing with Lennox Gastaut and all the challenges that come with it.