Thursday, June 16, 2011

It's been awhile...

Wow, I didn’t realize how long it’s been since my last post! Although, my life has not stopped and the tasks of everyday living are insurmountable- I’ve managed to be in a state of solitude. I have taken a much needed break from all things “ALS”.

In this media driven society “awareness” is both a blessing and a curse. The constant feed of ALS facts, tragedies and reminders can be extremely overwhelming for those of us who are actually living in an ALS nightmare.  I long so badly to fight and maintain a passionate spirit… to scream and yell and tell the whole world what this horrible disease does to families. But, some days the fight becomes too hard. The research and forums and constant reminders of what is to come are all too much to bear. I think I hit my breaking point at the end of May.

May was ALS awareness month. I realize that “awareness” months are created to- get the word out- and make those who have never heard of the disease aware of how tragic and horrible it is. It’s there to give a specific time and place to lobby for research and cures. It opens doors that may have otherwise not been there. They serve as reminders that we need to fight and not give up- that this disease deserves just as much attention as cancer and heart disease.

But after the fight- after the grueling days of listing facts and reasons why we need a cure- you can’t help but feel defeated. A break is so necessary! A time of peace and solitude has served as the only healing grace from the noise and static of living through this hell.

I am finally feeling refreshed. I am gaining my fighter spirit back. I am ready to tackle the world and share my compassion with others fighting this same fight.

Thank you for granting me this break and supporting me and my family. Thank you for the sweet “tweets” and emails.

….because I want to remember every detail of this new life… I will leave you with this picture!
                                                              Mom's way of sharing awareness: Love her spirit




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