Monday, February 27, 2012

I'm With Him

I had a really great day Friday. It started with dropping Luke off at preschool. I don't get to take him directly to his preschool class very often, so this is kind of a big deal. Before I took him to preschool, he wanted to go to his Extended Care room so he could introduce his teachers there to his brother. Isn't that sweet? Even though my boys get a little crazy with each other sometimes, the love they have for each other is pretty awesome.

After dropping him off, I took Tommy to get his haircut, where I had a very awkward encounter with a woman who thought I was named Serena and had just bought her house. By the time I realized what was going on, it was too late to correct her and I had to pretend to be Serena to be polite. I couldn't get out of there quickly enough! Following his haircut, Tommy and I went to Starbucks, where he asked for a donut. Of course I got him a donut--and one for me, too.

Then we went and visited Julie at work. In typical Tommy style, he refused to acknowledge anyone in Julie's office, but he made himself very comfortable.

Of course, when we left her office, he immediately began chattering away about Julie and her office and the pizza he ate for lunch.
We also rode some elevators and saw some fish.


And then we made our way to the fourth floor of the Comer Children's Hospital, where we saw Tommy's neurologist.

It's amazing how easily this comes to me these days. How when I told people that I was taking off work on Friday to take Tommy to University of Chicago, they were immediately troubled. "Oh no, we just have to see his neurologist. It's routine." And it is. Epilepsy is routine for us now. Tommy having a neurologist is also routine.

There was a time when it wasn't, though. Many of you followed me through that time and I can't thank you enough. There was a time when it was big and dark and scary. There are STILL times when it is big and dark and scary, but mostly it lives in the back of our mind. We know how long it's been since his last seizure (he's in his longest seizure-free stretch yet!), but we don't watch him every minute worrying that he'll have one. Mostly, we just let him be a kid. I know we're lucky. Some epileptic children have more severe cases than Tommy. It's strange to say that we're lucky, but we are. If sitting in a pediatric neurology waiting room has taught me anything, it's that it could be so much worse.

There's so much that is unknown about epilepsy. So much research that is yet to be done, and so, we've decided to participate in the 2012 Epilepsy 5k. Do you live in the area? We'd love to have you join Tommy's Team . It's a fun run/walk (we will be doing the one in Wheaton, on Saturday, May 12), so you don't even have to run. Thanks to a tremendously awesome sponsor, we will have matching shirts (now I have two months to figure out how to design a shirt), and I promise to bring donuts. And hugs. Lots and lots of hugs.
There's so much that I can't do. I can't see in the future. I can't determine if Tommy is going to outgrow his seizures. I can't make it so that another parent won't have to go through this, but I want to help. When Tommy was first diagnosed, the epilepsy foundation sent us a huge packet of materials to share with Luke. It might seem simple, but the ability to explain to Luke what was happening to Tommy--when we could hardly understand it ourselves--made such a difference. This is one of the many things the epilepsy foundation does and one of the many reasons that this is so important to us. I am running for education--and for hope, for the hope that someday, they'll understand this disease a little better and no other parent will have to helplessly hold their seizing child, praying as the seconds tick by that it will stop, that they'll be okay. I want someone out there to have this future.

11 comments:

Julie said...

Which race are you doing? I'd love to join Team Tommy!

Adam said...

Okay . . . awesomeness. I love that you are in this place of peace with Tommy's epilepsy, and I love that you're doing something to help other families get there too. I definitely want to support you some way, some how. The middle of May is looking rather eventful, but welcoming a new daughter into the world makes this more of a priority, not less. I definitely want to help at least with a donation. ;)

Julie said...

HEY EVERYONE-- if you can't go to the Wheaton race, I will be heading up Team Tommy for the Montrose Harbor race on 5/19. Tommy is awesome enough to warrant two races. :-)

Stephanie said...

You are such an amazing mommy. :) And YAY for the longest seizure free stretch! I know how scary just ONE seizure can be, so I'm so happy to hear how well your Tommy is doing. And I may have to find a 5K to do nearby...even if I walk most of it it would be a great way to keep me active once I'm past the morning sickness stage. :)

Stephanie said...

By the way...can I join Team Tommy but do a walk/run closer to me?

Stephanie said...

Ok...never mind my last question. There's a possibility, if I can convince my husband that we can make it to the Wheaton race as a family to support Tommy. It's not too far of a drive and my husband's sister just lives in St. Charles so we could make it two trips in one day. :)

Kristen said...

Jared, Nate and I want to join team Tommy. I cannot run since I have a bum knee, but I'd love to walk/slowly jog with the group. If we have a jogging stroller will we be able to bring Nate with us? We have an Ergo so I suppose we can always strap him to Jared's back.

I have never done a walk/run for charity so I'm not exactly sure how this works. So you might have to walk me through this. :-) Can you e-mail me at Hager_Kristen at hotmail dot com with what I should do?

p.s. - Also super excited at this chance to finally meet you!!

Elaine A. said...

Good for you! You're such a good Mom to your awesome Tommy! And how did he get to be such a big boy already? Seems like just yesterday I was reading your jaw-dropping tweet of his birth... ;P

Lyndsay said...

Is this what happens after a day with Beth? I LOVE THOSE TOP 4 PICS!

And good job Mom - I wish I lived closer and could join you!

InTheFastLane said...

Love the pictures of Tommy!
They really capture his spirit :)

Foursons said...

I love that you're running this race and organizing a group for it. :)

I totally get the shy, not gonna say a word until I get out of here boy. Nolan does that to me all the time!