Monday, September 1, 2014

Tell Me it Sucks

Maybe I've moved out of the shock phase to the 'it's real' phase... but I'm finally starting to realize that this is happening to me.

I haven't done much looking on line - I honestly just want to focus on my time with my family and not how I might die or how painful it will be getting there....but I'm trying to prepare myself for the conversation with the doctor on Tuesday and I want my questions ready to be answered.

I looked into my aneurysm last night, I got to the Treatment Options and all I find is a list of risks... I read:

blot clots
swelling of the brain

I started crying.  Not just because I'm already at high risk for stroke because of my MTHFR gene mutation, but because all I could picture was what I watched Jay go through and her having her skull cut off for months with one side of her head being way bigger than the other from the swelling and being in a coma for weeks, not able to talk or eat for even longer, and PICU for months, then rehab for longer, and almost dying multiple times.  She still talks to me about the first time I fed her pudding... 9 years old having to learn how to eat pudding again.  I HATE that this happened to her... to my sister... to our family.... and we're approaching the one year anniversary, so memories have already been flooding my mind as it is.

And honestly, the part that really breaks my heart about the possibility of me having my aneurysm rupture is knowing what it feels like to be on the other side of that and I don't want my family to have to watch me endure something like that.  To wait on every phone call fearing I won't make it. Driving hours a day to get to me. Or for them to have to arrange my funeral.  My kids have been through enough.  Matt, my parents, my sister and brother, my grandparents... they've all been through enough already.  It's been a LONG 4 years.

So last night I did all I know how to do when confronted with such overwhelming, heavy feelings... I dropped to my knees and cried out to my God.  I actually fell asleep on my knees, head on my bed.  And I know He is with me - I've been covered with peace in the midst of this all... but there are still those moments in the middle of the day... in the shower... driving down the road... watching my kids play... where I realized the magnitude of what is going on with me.

So tonight, I looked up the syrinx to answer some of Matt's questions and I'm again overwhelmed. While this finding was easy to gloss over at first because it's not a diagnosis I'm familiar with and so it didn't automatically shout "death" to me... I am feeling like this is more of a guarantee, whereas the aneurysm feels like it could possibly not affect me.

Here is a LINK with information about it.  Although this is the first site I have found that suggests that surgery can be successful.  Every other site said that most often the syrinx will recur shortly after surgery. :(

Seriously... what do I do with this?   Please save the 'right' answers.  I already know those... trust God... don't worry... pray... believe He can heal me...  I've got it all down as much as humanly possible and for where I fall short, I know He can cover the distance.  He is good, even when life is hard.  And I firmly believe with everything I am that He has a plan in EVERYTHING.  In Rachel's death - in this diagnosis and whatever will come as a result...

But let's be honest... this is really not good news.  It's not news you would want.  It's not news you would want your child to get.  And there isn't an easy solution and it's not going away on it's own. So be human with me for a minute and admit that this sucks.  I really need that.  Perhaps that sounds unchristian of me... well, tell me it sucks and then pray for me.  And if sucks is a word you aren't willing to use (I'm sorry if I've offended you), just admit to me it isn't something you would want to hear.

I'm so tired of listening to people try to coach me into more positive thinking.  I don't need that. I really do have that down.  I might not tomorrow, but so far, I've really let this news not just rest in God's hands, but actually cause me to live life more fully and to get as close as I can to the only One who can carry the full weight of this on His shoulders.  He taught me how to do that through Rachel.

Listen, it might make perfect sense to someone without a blood clotting disorder and brain aneurysm that 'people get these all the time and they can just operate on them'  or that 'the fluid in my spinal cord can just be removed' - But I didn't go in for an apt with the Neurologist because I had free time.  I went because I was having symptoms that are seriously affecting my quality of life.  Perhaps they are more to do with my autoimmune diseases, but they are real none the less.

And it might make you feel like you are encouraging me to tell me to not think about it or not worry about it. But it just doesn't encourage me.  It makes me feel more alone.  You know why?  Because I am an outward processor... meaning that share what's on my mind to work through it and not everything that comes out of my mouth is something I'm "obsessing" over - yet at least 4 times this week I have been told to not obsess over this when I have tried to talk to someone.  I NEED to be able to talk to people, but the more I do, the less I want to - and then I feel alone... it's a bad cycle.

So this is what I need... and I realize that if people couldn't follow what I asked of them where Rachel was concerned, most likely they won't listen now.  And I know, and I mean *honestly truly believe*, that people who do this do care and are only trying to help me... I know they don't want to make me feel worse... but what I need is for you to all just listen, pray, and admit that this sucks and you wouldn't want to receive this news.  And then instead of picking apart every word I say looking for where I am falling short in my faith that you might be able to fix... do this for me... look for GOD... look for JESUS.... look for the Holy Spirit...  because the one thing I know about what this trial will hold for me is a whole lot of Them.  And it would mean so much to me if it also held a whole lot of love from you.

I don't need to be fixed.  You can't do that.  I release you of the burden to try.   I don't want help figuring out what only God knows.  I just need my family and friends, near and far, to stop minimizing my reality and stay by me as I walk this path before me.  I know it's not out of God's sight, but yeah, I'm scared.  And I promise you, if you stop telling me why I don't need to worry, you will see that God's already got that covered... you will see that I actually *do* have plenty of good days and that I'm really making the most out of a very difficult thing... but you will also clearly see that it's not me doing that within my own ability to think 'right'... you will see that I know my God is bigger than the mountains creating this valley.

And if you can't do that for me... *I* will see that even when I am very alone, He will never leave my side.  Because unlike my journey with Rachel, I do not intend to beg people to be empathetic...I did that with her because in some ways I was protecting her and in other ways I was trying to teach people how to treat others in my shoes... I know, it seemed like it was about me and what I was 'demanding' of others, but it wasn't.

With this, I don't have to protect anyone and don't feel the need to teach anyone how to love someone with a brain aneurysm, a syrinx and autoimmune diseases.  All I would be doing is wasting hard-to-come-by energy that I could be using to enjoy my days with my family and real friends and I will NOT do that.

So, if you are able to let me be me... message me... call me... text me... come on over!  I'll put the coffee on and maybe even show you my best Running Man (for those of you who aren't cool, that's a dance - and one I am good at - or at least I used to be!)  OOH, no, we can do the electric slide... that's a fun one and easier on my knees! LOL.

I'm serious as a brain aneurysm when I say that I intend to make the most out of each day God gives me.  I will dance in this rain.  I will trust Him.  I will lean on Him.  And I will praise Him no matter what comes my way.  In just one week, I have already seen fruit in my life as a result of Him allowing me to walk another hard road.  I see His goodness, I feel His presence.  He is in this.

It's still very real and not likely something that I'm getting out of.  Next to a miraculous healing, which I invite you to pray for, I will face this for the rest of my life...or die a young death.  and when I think about that too long, I get sad.... what about when my kids have kids...I want to be a Nana... and it comes right back...   Bear with me as I ride this rollercoaster of emotions.

This sucks.


  1. This sucks, Stacy, this really sucks. I would love to see your running man and electric slide! :) lots of hugs whenever you need them. ..

  2. Oh man, this really really sucks, Stacy! There are no better words for it... Oh how I would love to come over! Be sure your in my thoughts day and nights and constantly knocking on heavens door with my prayers for you!
    Hugs hugs hugs to my favourite Rachel's Mama!

  3. I'm sorry you have to go through this. Hoping we can get together soon. Praying for you.

  4. Stacy- I wish I could get on a plane right now and challenge you to a Running man/ Electric Slide dance off.. I'm pretty good at it myself, but then again we always were a lot alike and what your going through , well it does suck and Im pretty upset right now for you, selfishly of course because don't get live close enough to get to spend time with my bestie and honestly Stacy, I love you just the way you are , I always have and always will.


We so appreciate your words of encouragement!
Thank you! ♥ The Aubes