Brainstem Surgery: March 4, 2016

Yep, you read that right.  Go ahead.....read it again.  I did.....like 10 times, or 50.  I received this letter on Tuesday.  I was instantly relieved when I read it.  I needed someone to say absolutely yes to this to make me want to take the leap and be able to find peace with it.

Forty-five minutes ago I scheduled my surgery.

Picture me repeating this in my mind using different tones and inflections in my voice:

I am going to have brainstem surgery.  I am going to have brainstem surgery.  I am going to have brainstem surgery.

I AM GOING TO HAVE BRAINSTEM SURGERY.

I am going to have brainstem surgery on March 4, 2016 at 9 a.m by Dr. Robert Spetzler at the Barrow Brain Institute in Phoenix, AZ.

Picture me this way:
Blank stare at the screen, fingertips paused on the keyboard, mind blank, tears falling, and heart racing.

Breathe, Jamie.  Breathe.

Holy shit.

So.......how do I feel about it?  What don't I feel since last Monday?  Seriously, I barely recognize myself the last week and a half.

Patrick took the phone call.  Tears immediately started welling in my eyes.  Essentially, I have been waiting for this day since December 26, 2013 when I was officially diagnosed with my cavernous malformation.  That is a REALLY long time to fear....dread......anticipate for something to happen.

We had originally been told that Dr. Spetzler was going to be out of the county the first two weeks of March and that March 18 was going to be the earliest available date for surgery.  Patrick voiced our concerns; my bleed is fresh and my CM has been pushed to the surface because of it.  If we wait too long, it could begin to grow as one with my healthy, undamaged brain tissue again making it more risky to reach and causing me more potential deficits.  As the conversation went on, Patrick was put on hold.  When she returned to the phone, she informed us that he could squeeze us in before he left as long as were okay with him leaving the next morning.

I didn't hesitate.  It was a sign and I listened.

I have never been so at peace with a decision, but so terrified at the same time. I know, deep in my heart, that surgery is the right decision. Why?  Because for the last 22 months, I feel like I have been living in the land between fear and freedom.

I could best describe fear as a leash.  It lets you get just far enough away, but not as far as you want to go or could go.  Here are some examples of how fear has governed my life:

Every time I physically exert myself:  "Be careful, slow down, listen to your body.  Whoa, was that pain good or bad?"

Every time I don't feel well: "Is that stroke related?  Do I remember that from last time?  If I'm not better by......, I'll go to the doctor."

Every time I do something athletic: "I can't do that, I'll hurt myself."

It is exhausting.  It is debilitating.  It is demeaning.  Fear, what I go through physically and mentally from my strokes, will eventually kill my spirit.  That is just not acceptable to me.

I dream of being free.  Free of the worry, of the fear, of the self doubt, and the I can'ts and I shouldn't's.  I want to be free.

I believe that surgery will grant me this freedom.  IF they get all of my CM, there is chance that it could never grow back and I will never have another stroke.  Do you even understand how calming that is to me to even think about?

I will have deficits after the surgery.  No doubt.  I have been told that whatever you experience when you bleed is heightened after the surgery.  I could assume that I will definitely have vision deficits, balance and motor loss, and possibly even facial weakness or paralysis.  These are all things that I have experienced before with bleeds.  I also know, just as with a bleed, that as you heal, your brain creates new connections and things slowly return.  I will never be "normal", but I will be free.  To me, after living with this for the last 22 months, that is a trade off I'm willing to make at this point in my life.  A point in my life where I am young, with a beautiful family, with so much time to live and the understanding that even though we have so much time it actually is such little time.

I will be able to wake up in the morning grateful that I am alive, rather than worried about another stroke.  I will carry on with my day knowing that I can do WHATEVER I WANT TO DO because I am free of my CM.  I will go to bed at night at peace instead of thanking God for giving me another day stroke free.

But even though I am at peace with this decision and my family and friends are as well, I am not any less scared.  I am having brain surgery.  In the Pons.  Where the 12 cranial nerves, our bodies most important nerves, run directly through to bridge the spine and the brain.  There are going to shave a piece of hair (which I don't have a lot of), cut in to my head, and I will forever have a scar to remind me of all of this.  This. Is. No. Joke.

Bet your ass I am scared.

I am scared of the pain and the headache that I will wake up with.  After experiencing the headaches with my bleeds and feeling like my head was being squeezed in a vice script, I honestly can't imagine anything worse.  I am anxious about what type of recovery I will be facing once I wake up.  Will I wake up like the Saturday after my first stroke or like the Friday after my second one?  Or will I be even worse or better?  Unfortunately, there is no absolute way of knowing that until I wake up.

How long will we be gone?  The kids.......God, watch over the kids.  If I am gone for weeks, how many words will Myah be saying when I get back?  How much will Linden have grown?  How many more teeth will JJ have lost?  How much more matured will Seeri be?  How will I go that long without my babies?

Am I strong enough to do this?

Yes, I am strong enough to do this.

Because even throughout all the dark, when I envision my future, I have never pictured myself unhappy or sick.  When I close my eyes, I see Patrick, the girls, my family, my closest friends, and I on a sunny summer day having a cookout and celebrating the beauty of life.  And the expression on my face is one of peace, joy, and exultation.

I WILL NOT let anything take that away from me.  Nothing is going to take that from me.

So, am I strong enough?  Hell yes.


Seeri, Jaelyn, Linden, and Myah:
I just left JJ and Myah's room (our blondies) after putting you to bed.  Tonight, you were sharing JJ's big bed and playing a game where you would both sit up, look at each other, and fall backwards.  You would giggle hysterically at each other and sit up and do it all over again and again.  I laughed with you until eventually my laughs turned to tears.  To watch you both in all of your sweet innocence made me realize why I am really going through with this surgery.

This surgery is my best chance to be the Mom that I want to be for all of you in the best capacity I can physically, mentally, emotionally, and spiritually be.  It is my chance to watch you go to homecomings, proms, and graduate from high school and college.  It is my chance to see you blush when you talk about your first crush, or hear you gush about this guy you want to marry, and watch your Daddy walk you all down the isle.  It is my chance to get a "your going to be a Grandma" gift, and go to a gender reveal, and BE a Grandma that spoils all those babies silly.

This is my best chance to watch you all grow in to strong, courageous, compassionate, and selfless women.

I want you to know that I am scared.  There is going to be a time in your life where you are going to be scared too.  And it is OKAY.  I hope that I am setting a good example for of how to battle adversity with grace and fight like hell.

Because remember, SMITH'S DON'T QUIT.

From your Dad -

Seeri, Jaelyn, Linden, & Myah - your mommy talked me in to putting words on paper to share with you when you are older.  It seems like yesterday that we were holding you in the palm of our hands and now I wake up and see four beautiful young ladies that possess so many of their mothers traits. I see your mother in all four of you every time I look at you- your eyes, your smiles, your heart, your care. The example your mother has and will continue to set for you is a great blueprint to follow - cherish the opportunity.

As for all that has transpired over the past week - your mother is absolutely correct.  It is SCARY.  I am scared.  I feel as if I am living an out of body experience.  I have cried tears until there has been no more to cry.  I think of your mom and think of you and try my best to be your rock, but many times I feel as though I crumble.  What I have learned is that your Faith has to be steady and constant in times like these.  I have often asked God to help carry me, to take some of  the burden off of our family and carry it for us until we are strong enough to carry it on our own.  Grandpa Smith in his wisdom always said to us, "If you don't have your Faith, you don't have anything".  He is absolutely correct.  No matter the challenges that you face in life, face them with your mother's determination and with your Faith.

Girls - I pray, that you four will grow up and love one another unconditionally.  I pray that you have strong Faiths and you will rely on your Faith at all times.  I pray constantly for our family.

To Our Army - I admit and I will always admit that I did not know how much of our story that we should or should not be sharing.  Growing up my family faced adversity with the diagnosis of my mom's breast cancer.  Whenever asked, "How's your mom doing?"  It was always a very quick and almost without thinking, "Shes doing well, thank you for asking".  I said that whether I knew she was having a terrible day due to the chemo or not.  It was just how I was wired; put on the strong front. To this day I remember trick or treaters coming to our front door the night prior to my mother passing and putting on the same front.  Well, if you have gotten this far in the blog, you know that we have taken the exact opposite approach.  Some mornings I wake up and probably know less than you as the reader does, yet I don't know if I would have it any other way.

You see, over the next two weeks, or maybe two months, or maybe two years, we will need each and every single one of you pulling for us.  It is my hope that come 10:00 am on Friday March 4th that each and every single person in this Army, in our corner cheering for us, stops what they are doing and prays.  Whether it be for one prayer, one minute, one hour, one day.... just pray for Jamie.  Because watching her go through those operating doors is going to be one of the toughest moments of my life. Yet, I know with my Faith, that one of the happiest moments in my life will be seeing her come out of those operating doors.

For all of you who have reached out to us, who have provided for our family, who gives our kids an extra squeeze for us, for all of you saying prayers..... THANK YOU!  I continue to be indebted forever to all of you around us.