Thursday, December 16, 2010
Take your cheer and shove it...just sayin
Before I become a total downer let me start with this... I always love being able to show off the great advances and research that is done at one of the hospitals we go to. Kudos to CHOP for it's epilepsy research!!
Now, Christmas. There was a time that I loved Christmas. Heck, I even liked shopping. Wrapping, not so much. I enjoyed the lights, and the tree, and the Xmas eve traditions my family has.
Then there were seizures.
Going back, I had a hard time with this time of year because my grandfather died at Christmas time. Then my dad had his first heart attack December 23, followed up by a fatal heart attack in January the next year. I have been pretty down on the holidays with all that. If I am honest, I knew my first Christmas as a mom was going to be hard. My 5 month old had been only months earlier diagnosed with perinatal stroke and we were just trying to come to grips with the developmental delay. SO all of my big mommy thoughts of having this wonderful big first Christmas were already not going to happen. Second, we were (are) broke. So you can only do so much spoiling. But I bought 3 different Xmas outfits (including santa outfit) and went forward with Christmas Numero uno. My family celebrates Christmas eve, Larrys celebrates Christmas Day. Works out well. Our first xmas eve the baby was off. Very crank which was not like her at all. She was miserable. I thought maybe she was teething. Christmas went the same way...cranky. Not ripping papers like I had expected. I should've known something was in the wind. Dec 26 she went to get her 6 month vax. That night with a spiked fever came her first seizure. (complex partial) she became post ictal and slept for hours. And when she woke up she almost immediately went into a cluster. And that was my first introduction to infantile spasms. We went to the ER, where they told us that she wasn't seizing because they didn't see it. and basically tried to kick us out. I flipped. We went home, and as soon as we got home she immediately went back to back clusters with probably 200 spasms. Right back we go this time with covering pedi on our side who got us direct admit to the floor. IV in her scalp at midnight, and they did NOTHING that entire time. Dr Crappy Neuro came in, sat on the other side of the room and didnt care to see my video and said sometimes kids get febrile seizures, and because she isn't seizing now you can go. I said not without a med until we get an EEG. So he placated me and gave us Phenobarb. So he sends the little girl out the door who has a CATASTROPHIC form of epilepsy with phenobarb and no EEG. Now I've started to research, spoken to my pedi who I love, and I'm nervous as hell. It looks like it has to be IS. It has to be. We were right. Dr. Almost as ignorant as the other called to confirm the worst. Infantile Spasms with hypsarrythmia. Which brings us to now. Last year was slight better, her meds had her less in a fog so she was able to appreciate the goings on a bit more. But I dread the holidays. I dread this time of year. So much has happened and I associate so much with this time of year.
And then, as if life doesn't hand us enough shit. Jake. Everyday I wait for Heather to write Jakey a letter. And I cry, and I feel numb, and I want it to all go away. My friend just buried her son. Do I really think I should be all about holiday cheer right now. Eff no. I put up our tree for Charli. and lights. But my mind is so far away from here, my body would give anything to be anywhere but here. I want Charli to have a Merry Christmas, and I want to take the pain away from Heather...and I feel lost and useless. Winter as a rule makes me miserable, but this is a new brand of miserable even for me. I wish I could close my eyes and make everyone I know and love happy, healthy, and alive. And I hate that the holidays depress me like this now. I hope someday I will get better because I don't want to be like this when she is older. I don't want to have to fake it. There has just been so much pain, and loss, and trauma with this time period it's hard not to be affected.
I honestly can't recall a time I've been this depressed in a LONG time. The last few months with all the in patient stays and surgeries, the infections, my health has been crap...I just cant take it anymore. I just want for once something, anything, to go smoothly. I know. that is asking for a lot. I just wanted you guys to know that if I seem off this is why. Jakes death has profoundly affected me, and this time of year is horrible for me in terms of associative trauma. I am in AWE of Jakes mom Heather. Her strength and ability to write her feelings so openly amazes me. She has always been my hero. That will never change. And I thank her for letting me have the opportunity to know her and Jake. Because Jake is an amazing boy who taught so many people so much. Resolve, Strength, fight, love. That's just a few things that Jake taught the world. I know I feel better knowing that he is watching over Charli. But it doesn't negate the fact that it FUCKING SUCKS that he is gone. I would do anything to bring him back for Heather and Brian, and for his big brother Ethan. But I will help to continue on his story and legacy.
I hope I can snap out of this funk soon. I'm sorry guys. I know it's miserable having to read this. I just needed to get it out.