Thursday, May 20, 2010

Days like today - I didn't want to...

But, I couldn't not acknowledge this day...or this entire week for that matter. I mean, it's sole reason behind this blog.

Another year has gone by. Two total since we began this journey. On May 19, 2008, we made the two hour drive to Texas Children's Hospital in hopes we would be sent home with a new found peace. Instead, we spent the rest of the week there. And on this day that year, May 20, 2008, Austin had his first EEG. We were still clueless as to what that really meant. Even after returning home with a new diagnosis, we had no idea what it really meant.

I wish I never really did have to find out what infantile spasms meant. Thinking back to the prego days, I always wanted a happy, healthy, thriving baby. Health was critical. And he is healthy. But, in all the times I worried about things that may happen or complications or diseases I feared...I never once thought Gee, I really hope he doesn't develop epilepsy.

Nope, never entered my mind. Never realized how severe it could be. To me, epilepsy was not an ongoing battle. People I knew of that had it only had occasional seizures. Certainly not 100+ every single day. And none had deficits because of it.

Even with all my new spiritual growth and optimism, I can't deny that days like today don't nag at me. I do still grieve over the life we didn't have and the milestones we have yet to reach. Days like today force me to wonder what life would be like right now had the term "infantile spasms" never been said two years ago today.

I would probably still be an over the top safety nut...a constant worrier...and a proud mama. I would most likely be dreading the beginning of potty training days right about now. I bet I would probably enjoy getting out more than I do now. We probably would have made lots of family outings by now...restaurants, shopping, the zoo, boating at the lake, parks, and maybe even a vacation? Who knows, I might would even be working and/or thinking about family additions at this point.

It's so easy to go "there". That place you wish you were. So easy. It's sad...very sad when you snap out of it and realize you're not there and may never be. But, if these past two years have taught me anything, it's that anything can happen. And not just devastating epilepsy disorders like infantile spasms. But, good stuff too. At least five of the eight kids that I have followed closely over the past couple years are seizure free now. Just because something horrible has happened, doesn't mean it will always be this way. That kind of thinking and my faith is how I manage days like today.

We'll get there too.

7 comments:

happy's mommy said...

((((((((((hugs))))))))))

...danielle

JSmith5780 said...

Hope today is a little better.

blogzilly said...

I'm glad you posted. It's important to acknowledge the dates I think. For our sake and yours. In my mind, I'm giving you the biggest squeeze I can and whispering 'Hang in there'...

Colby said...

This was a beautiful post...

You have echoed what every single one of us has felt...and maybe not yet found a way to verbally acknowledge...I am sure every parent remembers those days....I sure do....

But you are living as much "in the reality" of this maze as you possibly could be....I am very proud of you and the younger parents I have had the pleasure to get to know here online....

I agree with Ken....It's good to talk about these times....It;s good for us as well....

Cyndi

Jamie said...

I have these same thoughts...I wanted to check in and ask how the keto diet is going? Is Austin still on it? has it at least helped a little? We are taking madie to meet with dietician at hospital on wed!
And Faith is all we can have! Madie's Tonic seizures have not been good..maybe a growth spirt and v.acid is just not flyin anymore..who knows!
hang in there!!

Jamie said...

I have these same thoughts...I wanted to check in and ask how the keto diet is going? Is Austin still on it? has it at least helped a little? We are taking madie to meet with dietician at hospital on wed!
And Faith is all we can have! Madie's Tonic seizures have not been good..maybe a growth spirt and v.acid is just not flyin anymore..who knows!
hang in there!!

Jamie said...

I have these same thoughts...I wanted to check in and ask how the keto diet is going? Is Austin still on it? has it at least helped a little? We are taking madie to meet with dietician at hospital on wed!
And Faith is all we can have! Madie's Tonic seizures have not been good..maybe a growth spirt and v.acid is just not flyin anymore..who knows!
hang in there!!