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feb26

 

 

February 26th of this year will be the day I die.

No this is not a suicide post, it is a for your information, so be ready post.

Okay so it isn’t set in stone. But as far as I am concerned, it is. Actually the 26th may be off just a bit but definitely before I reach the age of 32 which is on March 23rd. So there is a like a 24 day window.

I have a friend that does a very good job keeping track of any Chiarians that pass away. I touched on this a bit in my last post but just for an update here are some numbers. In 2014 my friend was made aware of 31 deaths (this number is much higher but these are the only whom were confirm-able and that were known). That is 31 Mothers, Fathers, Sons, Daughters….a loved one that because of Chiari their life was cut way too short. I talked about those that committed suicide but a great deal of them don’t. Some of them have complications during surgery or the Chiari is found too late.  Then there are those deaths that are due to a secondary cause such as Sleep Apnea but if not for the Chiari they would never have. Those are the scary ones. There are always risks in surgery but those secondary conditions are hard to diagnose and treat. As the Chiari can cause a enormous range of symptoms it is difficult to know when it is Chiari, when it is a secondary condition related to the Chiari, and when there is something totally unrelated going on. So if you have Chiari, how do you know you aren’t also suffering from a secondary condition just waiting, lurking in the shadows like Death himself.

chiari flame

 

As most of you know my Mom died when I was 12. It was completely unexpected. She had talked to me the day before, went to bed and never woke up. At the time the only thing we had to go on was the fact that she had had a cold that week. The medical examiner took his sweet time releasing the death certificate, around 3 months in fact. There was a reference to Viral Pneumonia but officially the cause of death was inconclusive. None of this meant much to me at age 12. My mom was dead, it was from some type of natural cause, it didn’t matter what it was.

Now however it means quite a bit. My Dad and I are convinced that my mother had Chiari. Obviously as unknown as it is now, it was basically unheard of back then. Looking back I am certain she suffered from Chiari and died from Central Sleep Apnea or similar. I hear myself telling my boys things she said to me all the time. “Give Mommy 20 minutes to take a nap” “I’ve got a headache, please keep it down” I can not tell you how much this new found epiphany has explained. My dad, I think, has found some comfort in knowing she had Chiari as well. I know he had watched her be in pain a lot, not knowing how to help, watching as she self medicated with alcohol and recreational drugs. I don’t know how hard it is to be the spouse but I know it has got to be heartbreaking. As much of a comfort it is to me to finally know, and understand what she was going through it scares the hell out of me because I now know how I will die. Which actually brings us to the date of February 26th

When my Mom died she was just 31. She was to turn 32 the next month. I am 31. My 32nd birthday in March. I’m convinced I will die exactly the way she did. Mark, humoring me helped me do the math. My Mom died January 26th and her birthday being February 20th. That gives us the February 26th, but more importantly before I turn 32.

Yes I know that chances are I will be just fine and live well over age 32. We know I have Chiari, I’ve had the decompression surgery, medicine has improved in the past 20 years. Yet there is that part of me that can not shake the feeling that this is it for me. So I have spent time talking about it, planning it, and preparing for it. I know some of my family can not stand it, my dad especially. Lets face it though, how many people do you know died and it wasn’t a surprise? No one is ever really ready for a loved one to go, and a lot of the time there were no preparations made ahead of time. So for that just in case here are some of mine:

I know this is probably not like a legal document or anything but nothing in here is anything that would need for it to be legal. Also I currently do not have life insurance so you may all have to pitch in. 

  • In the event of my death I need the boys with Mark and only Mark for the first few months.  A lot of you may want to help him out by taking the boys to give him a break as he deals with this difficult task, but please don’t. I understand there may be times he can not do something with the boys and so they can be watched by only a grandparent for up to 2 hours tops.  I have a lot of reasoning behind this but I wont go into all of it here, Mark knows all my reasons.
  • Anyone is welcome to speak at my funeral but I want a separate person for each of my passions that knows me well enough to talk on them. One for the University of Utah, one for School, my work in kindergarten &  the PTA, and one for Chiari.
  • I want to be buried wearing red and my Chiari bracelet.
  • Please give enough time before my funeral for my out of state family and friends to make arrangements
  • Amazing Grace is a must
  • My choice for Pallbearers are: Charles Vincent, Dillon Vincent, Kyle Jackson, Mike Bard, 2 Undisclosed names but Mark knows and so do they, Strider Vincent & Chuck Vincent. Honorary ones: Scott Bard, Peyton Bard, Floyd Jones, Jonathan Jackson and whomever wants to and Mark is okay with. On leaving Mark out of the Pallbearers; He is more than welcome to be one, but he has carried me so much in life I don’t think it is fair he should have to carry me in death as well.
  • The football will go to Dillon as it is both of ours ( he knows the one) The rest of the Utah stuff will be saved for Peyton. Scott will be the beneficiary of the rest of my meager assets with Mark deciding what will go to him.
  • My season tickets will automatically go to Mark as per the ticket office policy. He and my dad can figure that one out as they are as much as my dads as they are mine.

That really is all I have. However I will be keeping a record of these wishes on paper as well as updating them if necessary. 

I apologize for all the gloom and doom of this post but I had to put it out there. As the days and hours get closer to my birthday I worry more and more. I’ve been told its natural to feel apprehensive about this sorta thing, but it is more than that. I’m more than apprehensive about my upcoming birthday…. I’m downright freaked out. My biggest fear is leaving my boys. I grew up without my Mom, I don’t want them to have to. I think about all the things my mom missed out on, and of course I would miss out on that and more with my boys. I pray that if I do end up leaving them, that they will know how much I love them and that someone will be able to be there for them when they need ‘a mom’.

Any one of us can die at anytime. It happens everyday. So if I do somehow end up making it to 32 unscathed, I’m celebrating. I’m celebrating like crazy. I know that it doesn’t change my health and the fact that I will die, most likely before anyone is ready, but the monkey will be off my back for at least awhile. Until March 23rd I will be living life til its fullest and continuing to do all the things I love. Carpe Diem, YOLO and all that.

 

 

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