Nothing good, I feel, will ever come from this day again. Maybe I'm being over dramatic. Whatever. This was the single most horrifying, panicked day we had ever had. The first seizure. The first of what would be thousands and thousands of seizures. Of dr's, ER trips, ambulance rides, side effect, transport method, med changes, med increases, med decreases, The Beast that took hold of my life, shook it to its core, caused more collateral damage than one could imagine, and robbed my beautiful girl of months. Months of learning, developing, playing, sleeping, eating without gagging.
I know this day is long behind us. But the scars are fresh still. The memory remains like it was yesterday. I close my eyes and can smell the ER as we waited. I remember breaking in to the hospital at 11p to bring her to the floor because we were being admitted and security tried to stop us and I essentially told them to go eff themselves because my daughter needed treatment so they could either get out of my way or I would plow thru them.
Since that fateful day, life was never the same again. In any way shape or form. My marriage has fallen apart. For reasons not specific to any one thing, just that it was too much for us as newlyweds and first time parents to deal with. We choose to deal in different ways, and those ways just don't work together. I love him, he is my best friend, he adores our daughter ,and I trust him implicitly with her. But our marriage was slain by the beast. Friendships have been slain by the beast. People you think would be around suddenly fade off into the sunset. Although in the interim you meet TONS of parents who are JUST LIKE YOU and know just what you are going thru. So I guess it's kind of a good trade off.
Life. What exactly is that. Our life consists of 19 therapies a week. At the most we have 4 or 5 a day. Not much time for anything else. And the small amount of time we do have is spent for follow up drs appointments.
Larry and I have joint custody. He gets the baby on the weekends. I have such great aspirations for the weekends. I'll clean, I'll nap, I'll go to the mall and use a gift card, I'll go visit Joyce and see the babies. I end up on the couch watching NCIS marathons.
Dating. psssh. WHAT. who has time. Who the hell in their right mind would want to get involved in the constant chaos that is me. No one sane that is for sure. And on the few occasions where I've found someone who I think maybe, just maybe, this person is the one who can handle it. They can hack my craziness. They don't mind my quirky. They are ok with me being OCD stalker about my baby. And, inevitably something happens. Most likely me being the screw up I am and never allowing my self even the smallest bit of happiness sabotages it. I don't even realize I'm doing it. I always said I would be the crazy cat lady with the big old house on the corner and sit in my rocker and the kids would throw eggs at my house at halloween.
My focus. My only focus. That sleeping beauty in her crib right now. But I do admit that it would be so nice to have someone to swoop in and save me from time to time. someone who doesn't run the first chance they get because my usual sparkling demeanor (***cough cough BULLSHIT)) hits a snag because of what ever brand of stress is being thrown at me from life. I can't smile and nod thru it all. I have to vent. I have to get pissed. I have to be angry. I need to cry. Because otherwise I would end up the emotional Mt. Vesuvius and that would be good for no one.
So today. Day that I hate. Day that never ceases to amaze me the amount of horrible shit that can happen in this day. Not just in my life, but in others. Like the new parents I heard that were on their way to the med center with a seizing baby. Just starting their journey. My heart breaks for them. And I will be here for them for anything they need.
The only thing that I did that gave me a sense of accomplishment today was I went to visit Jakey. I left an ornament on his tree. Told him we think about him all the time, and his mom and dad, and brother Ethan. I asked him to please take special care of his momma. And that Charli and I will do our best here to make sure she is ok. Being with Jake was the only time today that I had a sense of calm. A sense that it will be ok. His energy is so powerful. I will persevere thru all of this for him, and for Charli, and for Heather. Because, when it comes down to it. I have no right to bitch about anything at all.
Next year I want to do something completely crazy outlandish and fun on this day. Sean Miller is coming with me whatever I do. He has a hard time with today as well. Next year we shall start a tradition.
In the mean time. I count the many blessings I have. My friends, family, my amazing support system of moms. Most importantly my beautiful daughter. The strength I know I have, the tenacity to keep fighting and power thru this depression that is plaguing me. A family unit that was once fractured that is healing, and coming together for Charli, and to support each other which is all I've ever wanted for Charli.
54 minutes til the 27th. This day is almost done. I've survived another one. Wounded today, yes. Hurt, yes. But I will recover. I will smile because I deserve to. I will rejoice in the fact that my daughter is healthy and happy. And I will start to prepare myself for summer projects which will keep me occupied. And that is always a good thing. Distraction is good.
Farewell December 26th. I'll see you next year. Not willingly, but we'll meet again. But for now it's your time to leave. And let me carry on the rest of this year and start the new year in a new and hopefully better frame of mind.