I truly believe December is the most wonderful time of the year. I love everything about it. I love the hustle and bustle, I must because why else would I still be shopping Christmas Eve Eve? I love the crabby people who you run across and the happy happy joy joy ones too.
I love the smells, the baking, the decorations, driving around looking at lights, the mall Santa Claus, trying to get the gifts for your kids that will bring the biggest smiles, making evidence of a visit from Santa. I love it all. I love that my birthday is in the crescendo of it all. I get to celebrate my birthday at the most wonderful time of the year. I love December.
But December 2002 my opinion changed for awhile. I found out I was pregnant December 2001, but by 2002 I had a 4 month old I was afraid for Santa to hold because what if she would have a seizure with him. We had a 4 month old that had a total of 4 very large grand mal seizures on Christmas day 2002. And not much changed by 2003. And 2004. And 2005. And 2006. And 2007. And 2008. And 2009. And 2010.
My attitude has gotten better over the years, but you better bet I still don’t wish every Christmas morning Lily was tearing into presents, smiling big over her gifts. Not propped up watching her brother and sister open gifts and then have a big seizure amongst it all.
Every single time I watch her have a seizure I am taken back to that first one. I am frustrated, angry and mostly sad. I want so much for Lily to enjoy everything she is surrounded with, and maybe she does, but I want her to have fun. Smile, laugh, care about the gift we are showing up right in front of her face.
When I think about all we’ve gone through with Lily, I am reminded of how far I have come with my acceptance with her, but I am never very far off of the reminder of all that I am angry about missing with her.
Yes I stay positive and I love that little girl with every bit of me. But I so selfishly want to see her how I feel she was always meant to be. I want to see her and her sister Christmas morning running to the tree. I want to see that. I want that more than anything else in this world but it won’t happen. But it could happen for another family down the road who has a child with CDKL5 but never have to suffer the way Lily did because we raised enough money and awareness to find a cure and if not a cure AT LEAST appropriate treatment.
We are just a few days away from closing up this Pepsi voting thing and we are currently in 12th place. I see there are 3 (3!) animal causes in the top 10 that we should be replaced with. I love animals too, but can we even compare a child with an abandoned cat? How can priorities be so confused?
I am just pleading today, tomorrow and the last few days of 2010 that we all vote each day and tell our friends and family to do the same. Let’s push us up several places and get this thing done. Our kids need this more than any cat does. Hell I’ll take in several of those homeless animals, if we all did, they certainly wouldn’t need $50k would they? Let’s put the money to a cause that will save lives and families well being.
Please. And don’t forget to go to the contest post and comment if you voted.
Text 102973 and click the widget on the right of the screen.
Peace and love to you all!
Calm Amongst the Chaos 