Sunday, May 13, 2012

For Hope

"Lord save us all from a hope tree that has lost the faculty of putting out blossoms." ~ Mark Twain

When the boys were babies, I used to watch the rise and fall of their chests sometimes. I'd stand nearby and place my hand on them to feel the steady rise and fall, the assurance that they were okay. The first time Luke slept through the night, my heart panicked when I opened my eyes to the sunlight. I rolled over, placed my hand in the bassinet and was reassured that yes, he was still breathing. The thought that a baby could just stop breathing while sleeping was so scary and when they passed that stage, I was so grateful. It was one less thing to worry me.

And then Tommy was diagnosed with epilepsy and I learned about sudden unexplained death in epilepsy... and you know what? That's just not fair. Suddenly I was back to tiptoeing into his room every night, multiple times, placing my hand on his chest and waiting for that reassuring rise and fall. Only this was different than when I had infants, because I wasn't able to hope so much, because it might be something that he'd never outgrow. I wrote about feeling like hope was dragging around behind me, like a lead balloon. It was so hard and heavy, for a long time. I kept it inside of me mostly, but it was such a crushing weight. Somehow, the loss of hope is heavier than anything in this world. For awhile, I thought hope might never return. It's so hard to hope when all you see when you close is your eyes is the image of your child with twisted blue lips and a pale face.

But it did... it always does, and I found the sweet hopeful, happiness that we had before his diagnosis.
Yesterday, we walked and ran for people who might not have that hope. We walked and ran because epilepsy is not stronger than us. It's not. It might be big and scary, but it won't beat us. We walked and ran because maybe someday, there will be a cure and maybe someday, parents won't have to go through what we did. As I ran yesterday, I studied the faces of the people I passed. Some wearing team tshirts, some not, and I wondered how they were connected. I wondered what they went through to lead them to this place.

On the way home, Shane asked me what connections the people on our team had to epilepsy, if their children were epileptic. I said, "No. Their connection is Tommy," and that's it. Some of the people on our team are friends of friends. Some of them, I didn't meet until yesterday. Some of them held my hand through his diagnosis and cried with us.
And those who couldn't walk with us because of time or distance or commitments or illnesses were there in spirit, through donations and support. As of today, Tommy's Team has raised $3345. This amount far surpasses my wildest thoughts on what we could do--and we did it all because we aren't going to let epilepsy win. Because, no matter what, this disease is not stronger than our hope.


Huge thanks go out to the sponsor of our tshirts, Caribbean Pools & Spas


Love said...

this is awesome. i hate that your family has been through this, but so thankful for how well tommy is doing. love the support in your walk & your fundraising! proud of you!

Julie said...

So proud of everyone! I can't wait to do my bit next weekend.

nicole said...

Love reading this. Your family is just so cute. :) Sounds like a beautiful experience.

Crooked Eyebrow said...

I was so disappointed i couldn't go. I am beyond proud of you and Team Tommy.


Unknown said...

Absolutely amazing and inspiring.

k said...

Our children's hospital here just ran a radio spot for their epilepsy specialists and I instantly thought of you and Tommy.

I am so happy the race was a great success.

Anonymous said...

I am so excited to have found your site! We live about an hour northwest of Chicago. I come from a family of 12. One of my brothers is a runner and I am going to tell him of your organization and I'm thinking he may be interested in running.

You see, another brother of ours (he is 13 years old) has been suffering with seizures for 12 years now. It started with a febrile seizure..which left scar tissue on his brain. He was ok for a while, but began to have seizures again around the age of 3-4. They got worse and worse and worse. My parents tried so many different things. First they went the natural route, that didn't work. They really didn't want him on medication, but the seizures were getting so bad that they were left with no choice. Finally, January of 2011 he had brain surgery at Children's Memorial in Chicago. They removed the scar tissue that was causing the seizures. The surgery was hopefully going to stop him from ever having seizures again.

Sadly,just a few months after surgery, he began to have seizure again. It has been such a struggle, especially for my watch your child go through this is no fun.

It is not an easy thing to have to deal with, so unpredictable, so scary.
I think it's great what you are doing! Out of all of the diseases out there, epilepsy gets the least amount of funding. How wonderful that you are making a difference!

I hope that your son is doing well. =)


Mimi's Toes said...

Looks like a great success! Great post! I thought of you and your family.