Six Weeks and Counting

Today we mark six weeks–six weeks of Edgar being seizure-free: forty-two days without a single visit from the paramedics; thirty without a single phone call from school; no adjustments to his medications; the most significant conversation with his neurologist a rescheduling of an appointment in June.

Someone asked me today if I could finally relax.

The short answer to that is “No.”

Once you have lived through watching your child have seizure after seizure, once you have witnessed firsthand the extreme and resulting vulnerability, you never really relax.

I still check my phone, my email with (some may say obsessive) regularity.  When the phone in my classroom rings, the pit in my stomach involuntarily returns.  When I hear the sirens of an ambulance, I think “What if?”

I still observe my son, watching for the signs.

And while certainly as each seizure-free week goes by, I feel relief and gratitude, I don’t take a single milestone for granted.  I can’t–because if epilepsy has taught me anything it’s that life can change in a second.  On October 10, 2011, Edgar did not have epilepsy, and on October 11, 2011, he did.  That is our new reality.

So, when will I finally relax?  Well, as a parent, I’m guessing never.  But in terms of Edgar’s seizures, maybe after twenty seizure-free years.  Maybe.

In the meantime, though, we will celebrate each day that the seizures stay away and continue to work tirelessly to raise epilepsy awareness–for Edgar, of course, and for all people living with this reality.


14 thoughts on “Six Weeks and Counting

  1. Luv, luv, luv!!!

    God could not be everywhere, and therefore, he made mothers…

    I will be there with you, Edgar, Don, Oscar and August to celebrate in 20 years.

    Sending continued prayer, strength and love.

    Love you all!!!

    Pam XOXO!!!

  2. i’m so happy and grateful that things have turned around and will continue to pray for endless seizure-free days for my little buddy….xoxo

  3. Amazing to hear! I can only imagine how impossible it is to ever ‘relax’ after what you’ve been through. Keep thinking positive and knowing how special every moment we have with our kids really is…that is a lesson most learn after they are grown. I know, mine are grown…and working with the Grandson now. I watch young parents stressing over the uneaten hamburger at McDonalds and think, just take a breath and kiss his/her head. It is just a cheap bit of food, not a thing to worry over! You keep loving and knowing you are blessed with these wonderful kids and wonderful moments! Hugs and prayers are with you!

  4. What wonderful news! Thank you for sharing this with me and allowing us to share it with other Matty Fund Families!

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