Tag Archives: babysteps

Learning how to measure  time 

We live in a world of dates, deadlines and milestones. I catch myself measuring each special moment and holiday in reference to “last year” or the “last time.” The good news is we are beyond grateful for having the chance to say these words. We loved those moments like they might really be our last. But I want to push myself beyond the milestones and monthly markers and yet I find it’s much harder than I thought.

I can’t decide why and I’m not sure there is one single answer. Maybe it’s partly because we were trapped in a time warp for two years and it feels unnatural to actually move forward. But it’s also maybe because we got stuck in a safe place and staying in that rut is easier than starting fresh, even when the rut includes the scary memories always haunting us like silent ghosts.

As I have reviewed this weekend’s photos I am reminded of our pumpkin photos last year, how we felt, what we worried about and I wonder if maybe next year it will be too far away to keep up the comparison. But I also don’t want to ever forget, because this fight never stops for our little warrior nor for hundreds of thousands of others.

It’s almost November, our month to share, so I’ve decided it’s not all bad to keep reflecting on the crazy moments. It keeps us vigil and empathetic and these qualities are what I am most thankful for learning through our journey. It’s about the baby steps we keep taking and making sure we keep an open mind for the change we face.

We celebrate where we are and we want to make sure we spread the awareness so there will be many other stories like ours.

6 Reminders for Families Learning to Live with Epilepsy

As part of our commitment to sharing about epilepsy every November, we are making a video this year. There was too much info to fit and this is something I thought might be a good blog list.

Our list of reminders for families first getting accustomed to fighting this battle.

1.  Face the monsters. Don’t be afraid to let others see epilepsy. It’s hard, but it’s also a powerful way to get people to understand you need their support. A very brave woman has a TED talk about how we each have a closet we are afraid to come out of. I think as parents we feel vulnerable opening up to others because it feels like we’re admitting we’ve failed as parents, because we can’t fix this problem without help. Don’t be afraid.

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Testimony Tuesday: Endoflex for Immune Support

Last week was a little rocky for us. Still not sure what really triggered her seizures, and although we are still suffering through our lovely fall allergies, I think she is clear.

So I ask myself, what happened. I can’t be sure whether she was sick or not, but I can say her immune system was stressed, because she doesn’t have any ability to respond naturally TO stress.

Continue reading Testimony Tuesday: Endoflex for Immune Support