I have been stewing on this feeling for more than a week now. There is a huge guilt overshadowing this entire two weeks of spirited festivities. I haven’t been in the spirit really at all. Yes, we’re exhausted, and yes, we don’t see an end in sight so I think that Ground Hog Day feeling has set in. And yet, we are so very grateful for one thing, the only thing I asked for in all of 2013 and 2014 and now we have it.
The truth is it’s not enough. At the time it felt like it would be a miracle to go one day feeling normal. We just wanted to get through special occasions without our world being overturned in an instant. We didn’t want hospital stays to be our measure of life going by. And we have it. We officially have gone 365 days seizure free, (and a couple extra for good measure because we are somehow ridiculously superstitious about a disease we couldn’t control, predict or understand).
We live every day holding our breath a little less so that is a gift for sure. We are watching our children grow together more deeply and beautifully and that is an amazing feeling. We know everyone we love is better off because we are in such a better place than we were a year ago. And we can’t seem to find a way to be thankful enough. So much so that the guilt just keeps sitting there, with nowhere to go, because we are far from past all this.
We will continue to loosen our co-dependency on this disease, and I imagine we are going to stop using it as an excuse. But we have this other obstacle to overcome and it’s so much more nebulous and it won’t hold still. One day I’m targeting insurance challenges and the next I am searching for the perfect toy to rise to her next milestone. We know it’s never over and we know it’s always going to require us to fight.
The only way I know how to describe how we’re doing for all those who ask and we don’t really answer is this… There has been this unsettling reality waiting 365 days for us to arrive to this moment. And with big hopeful hearts we now see all that we asked for, seizure freedom and saving her life, it was just the beginning. We couldn’t see beyond the stress and the tragedy to have anything else to ask for. So there’s a little guilt that we can’t just be happy with what we have, because it really is a wonderful fabulous change in our lives. It’s just that we are changed forever and what we were really asking for back then; it just doesn’t exist.