97 Days

I was at work upstairs. My desk is right next to the window which is usually open on warm days. The room gets a nice breeze which seems to mock me as I send out each email. Occasionally I hear the cackle of two boys playing in the sandbox, a mother correcting some behavior, sometimes I even get to smell a grand breakfast being prepared on the grill outside. But Monday, June 21st I heard Amy ask Noah if he was okay, followed by her telling O to get Dad. I knew when I heard her ask Noah that question that the string of 97 days seizure free was broken.

It has been a long time since we have been able to say ninety plus days. We have had the occasional month with no activity, almost got to two months a few times, but never ninety and certainly not ninety-seven. We can most likely attribute this to the medication he is on. There is also a possibility that he is growing out of the earlier form (which seemed to knock him around at least once a month with seven to ten seizures in a single day) and moving to more complex form. Not nearly as frequent but more powerful. In the end, who knows? The doctors continue to be at a loss however, we don't dwell on that much. Our job is to just help Noah be the best he can be.

The seizure was short, no more than thirty to forty seconds, but the after effects were strong. It took The Fighter nearly a full week to reach his baseline, a full week to regain his muscular control and body sense. Like always though, he came back. He can take a punch, he may be pushed around, but he will get right back up and flash you that smile that melts your heart. He will look at you with the most penetrating blue eyes, and the child who only says two words, will speak a thousand with one look. "I am fine Dad, I can take the punch. Just hold onto me, give me that snuggle that tells me the shaking will go away. Together we can do this." Noah, we won't back down. Ever.

For the Fighter:



Best,
G

On the Brighter Side of Things

I've always been a pretty positive person. Without trying very hard I enjoy myself almost anywhere and can see the bright side of nearly any situation. I have a perfect example. I went on a trip to Mexico with my best friend, Amanda and her sister (also, my friend) Dana several years ago. When we got back from that trip Amanda and Dana would joke about what a terrible trip it was. The first time they did, I was like, huh?

To give you the highlights:
-- The first night we are there Dana realizes she is pregnant with her son, Justin, and can't drink; On a Mexican vacation-no alcohol, I don't think its ever been done before poor Dana had to endure it.
--Mexico was also experiencing some sort of cold front, so it was freezing cold the whole time we were there. We sunbathed under newly purchased blankets by the pool.
--We went for a horseback ride and my horse who I had nicknamed "Muy Mal" had diarrhea and I thought was going to die beneath me.
--Dana had menu mishaps wherever we went. Ordered chicken fajitias that were so gross the street dogs were not even interested and got a seafood pasta that smelled so bad it put me off my own dinner.
--We had wild dogs attack our rental car, got lost in the same rental car in some shanty town where I thought we'd never make it out alive.
--On the way home we had a multi-hour drive to get to the airport. In Mexicali, which we had to drive through, there was some sort of saints' day parade blocking most of the streets and locals had decided that was a good day to burn all the garbage in the city making it a hazy, lung chocking mess.
--The delay in Mexicali meant we missed our flight and had to wait 12 hours for the next one. Amanda was so exhausted and sick by the time we got on the plane that it was the first and hopefully last time I get to witness someone using the barf bag the airline provides.

Somehow through all of that I still walked away thinking I'd had a fine vacation. I think I have proved my point on how I look on the bright side of things. I have always thought of life as a journey and it's not good or bad but will always be, for everyone, a mix of the two. I think that attitude has helped me enormously with coping with my sick child. And luckily, I think little Noah has inherited my attitude.

Some once asked me if I would wish Noah to be different. You know, of course I wish all the time that he didn't have to work so hard to gain every new skill and that he wasn't plagued by seizures that scare us all. I don't, however, wish he was different than who he is. I am so immensely proud of Noah. He works so hard at school, therapy and with me at home. He does it all with a smile and giggling. Noah is trying, right now while I am writing this, to make me laugh. He loves people and you know when Noah loves you. He greets you with crazy giggles and a huge hug. If he really loves you he may include a bite because he is just so darn excited to see you. I would never be ashamed that he is a special needs kid. Noah is awesome.