Friday, December 31, 2010

It happened when? In 2010 (graphic...warning)

Im not even sure how to accurately convey all that went on in 2010. I often think during the times I am telling our story people must think I have one very overactive imagination. I only wish that were the case.

I'm ending this year the same as I started. Alone with the Xmas lights on, drinking hot chocolate. My baby is with her daddy right now (hopefully sleeping). My heart and thoughts are all over the place. It seems every year I say that was the most trying year. I think this year definitely wins that title. If you had told me on Dec 31 2009 that a mere six months later my daughter would undergo the biggest, most radical surgery one can have, and come out of it smiling like she didn't just have half of her brain removed I would have thought for sure you were smoking.

But, that was 2010. Surgery. So much happened this past year. But really, it will be known as the year of the surgery. The life changing, life saving, life altering, traumatizing, most radical, amazing, glorious, miraculous gift we could have ever been given. It isn't often that you get excited about having half of your childs major organ removed. But I was. I was ecstatic actually. Because she was a candidate. Sadly, many are not. So May 26 after about 6 hours Dr. Asano came out to tell us how things were going, and to show up the pictures of her hemisphere. My daughters little brain, that never even was able to develop because of her stroke. Like Shel Silverstein... a big missing piece. But we found the piece that fit in Detroit with her surgical team. We had a rough go for a few days and she ended up needing a VP shunt...which of all the things this year that has been the most problematic.

Since Oct 28 she has had 3 emergency shunt revisions. One colonized atypical staph meningitis. A UTI that grew pseudomonas. And currently, as I type, Micro at Alb Med is keeping watch over the gram positive cocci growing in pairs and rods that seem to indicate there is some variety of staph or strept infection. That is really just a small sampling of the crazy that has been this year. With only 57 minutes left of the decade, I could easily be up for hours writing about all of the goings on in 2010. But I wanted to be in bed an hour ago, so I'll wrap this up quick I think. (there is a slight chance at the 48 hour culture mark we could get admitted so I need sleep NOW)

This year has been a roller coaster. Joy of meeting new friends, new children who share the same journey as Charli, new parents who understand how frazzled I am and totally get it. Sadness at the lives lost this year.....Jakey, Brex.. my school friend Jared, Todd, most recently the week of Christmas my Uncle John. Gratitude for the amazing dr's that are involved in Charli's care...specifically her pediatrician who if I didn't have I don't know how I would function. He is my angel. I trust him more than anyone in the world, and he knows my daughter quite possibly better than I do. The neuro and nsurg team at Detroit is beyond phenomenal. And an even bigger surprise was find a neurosurgeon who was at the Med Center who not only knew what he was doing, has a kind heart and personality and an amazing amount of patience, and wonderful bedside manner. I have nothing but the best of things to say about Dr. Adamo and the neurosurg team at Albany Med. It was a blessing we found him (or landed in the ER and he happened to be on that day) because he has saved the day twice with two of her revisions.

Sadness. Lot's of sadness. Sadness over loss. Sadness over seeing my baby girl fight so hard everyday of her life. Seeing her eyes pleading with me while they try for the umpteenth time to find a line. The sheer horror I felt watching her vomit from the hydrocephalus after her surgery and the pain she was in. Sadness because my family fell apart. Not for any one reason. Many, rolled into a newly wed couple has a baby born with a massively complex medical history. That is enough to tank the most solid of marriages. Pride- in watching Larry grow this past year with Charli, seeing him get more picking out Xmas toys this year that had therapeutic value instead of just buying toys. That was huge to me. I'm so proud of who he is for her. And we are finding our way back to being friends and doing it all for her together.

Anxiety. Cuz with shunts (and seizures) comes anxiety. I've spent many a day analyzing her behavior instead of just enjoying being with her. That is something that will change in 2011. I'm going to let her be. Just be a kid. Not a kid that has a catastrophic form of epilepsy. Not the kid that had a stroke. Not the kid that is missing half of her brain. Just a kid. A kid that is going to do Kindermusik, and go to play groups, and have fun. Because Damn it she deserves it.

There is no greater thing in any day of any year since July 1 2008. That was the single most amazing (and again, terrifying, chaotic, catastrophic) day of our lives. But it was the day my life started. It was the day my mom hat was on, and it soon merged with advocate mom hat. Mom. still seems weird. I forget sometimes I am a mom because I so often function as a nurse or medical professional. But that girl. That precious little curly headed girl is the most amazing thing in my life. And I will make damn sure that this year is good to her. Because she has made my life amazing by being in it.

So, while I didn't get out all that was in my head. I feel like I can go to bed now. If we get admitted tomorrow I'll need all the sleep I can get now. Good bye 2010...I have mixed emotions about you. Let's see if 2011 will treat us right from the start.

Happy New Years everyone. Be safe, happy, and healthy...and seizure free to all.

Sunday, December 26, 2010

there is no way around it. I HATE this day.

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.

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.

Friday, December 10, 2010

This blog is dedicated to Jake Straughter... a beautiful life taken too soon. NOT ANOTHER MOMENT LOST TO SEIZURES!

This is Jakeys blog. His amazing, strong, beautiful mother Heather started this blog for him not too long ago. They are inspiration for me. The strength, resolve, love, patience, ability to still smile in spite of it all... it is what keeps me going. I have been on the Stroll Committee with Heather the last two years, and I consider a kindred friend. Seizure mom. And Jake. Sweet Jake. I am so thankful that you were a part of our lives, and that life allowed me to meet your amazing mom. She loves you so much. And I know how much you love her, and your family. I told Charli Thursday that she has a new angel in heaven watching over her. Listen for us.. RIP Jake

I don't really know what if anything is in my head right now. My heart is broken. The ability to form a thought or sentence seems to have left me. So I guess right now, I'll say this. My heart is broken. Reading Heathers last post to Jake.... I think I just went numb. Nothing you can say, nothing you can do will make this better. There is no making this better. They just lost their CHILD. As friends, and co seizure moms...what do we do. We sit back and we mourn this tragic loss. We figure out who to help a friend who is going to need support. I can't even imagine what they are going through right now. Nobody should have to go through this. No parent should EVER have to bury a child. The many ways of how wrong it is don't seem strong enough to point out the fact that children aren't supposed to get sick. Children don't leave. They get bigger, and different tx options, and they live. I want that for him. I know it's not possible, but I wish it was.

Jake gone too soon..... <3