Breathe in, breathe out repeat…

I don’t know where to start, or where to end.

I don’t know if there ever really was a beginning, or if there will ever be a real ending.

There are no words.

no words.

this pain, this intense pain in my chest, this pain that is stinging my eyes is undescribable. I’ve never EVER had a day with such intense feelings.

emotions.

each and every day this week conner’s deteriorated.

every single day.

i have no clue what he will look like in just 24 hours from now.

i’m trying so hard, so desperately to enjoy the today, for i know all to well that tomorrow is going to be horrible.

more horrible than today.

conner’s been crying or whimpering all day today.

his breathing.

labored.

intense.

pain. pain. pain.

i had to even hold him up while he went to the bathroom. he didn’t even have the ability to sit up to do that.

even with his bipap on he’s not getting good oxygen.

the carbon dioxide must be taking over.

forcefully.

i’m losing him.

i can’t believe i’m losing him.

i can’t believe a life can be over at 7 years old.

SEVEN.

my soul is breaking.

my firstborn child is losing his fight.

i can’t believe there is nothing i can do for him.

not one thing.

loving him alone, doesn’t seem adequate. it seems like a slap in a mom’s face. wanting desperately to help him. fix him. and i can’t. can you imagine how inadequate that makes me feel? how helpless? Look I know i’m losing him. I’m not denying that. I’ve known for quite some time….we’d get to this point. I have faith the size of a mustard seed and I fully know Gods holding conner and us in his hands. And He said all we need is faith of a mustard seed.

It’s all I can muster anymore.

But it’s not enough. It feels like it’s not enough. I wish so much to be done with this horrible lesson. I wish so much as horrible as it may sound for Conner to not have to suffer anymore. For Brad and I to not have to watch him suffer. It is like slowly slicing off our skin with a butter knife. There is no pain as horrible, as intense, as helpless, as deep and as raw as this. he’s laying next to me in tears. He can’t say one word without taking a breath in. he is being slowly suffocated by this horrible disease. This devil. And my faith KNOWS…I really do KNOW that God is with us and for us and is carrying us. but it doesn’t seem to make a difference. it doesn’t make it hurt one ounce less.

i knew he was dyieng. the CF docs explained to Brad and I how it happens. We’ve been prepared. Or so we thought. NObody told us about this suffering. This long drawn out suffocation…that our angel, our firstborn child will have to endure all of this pain.

I had our monthly CF Family council meeting tonight. We go around first and give updates on our CF’ers.

I passed.

I have no update.

There simply are no words.

Walking into that hospital that we’ve spend collectively over a year and a half of his lifetime in, I realized we haven’t been there in what seems like forever. Truly, it’s only been i think a little over a month…but we’re used to being there all the time. Seeing the CF nurse, the CF social workers…it was overwhelming to me. They are our team. I can handle the horribleness of the disease, I can talk about it with strength…in the bad is where i seem to be able to be brave…but when they started talking nice to me, saying how much they think of us, how much they miss us, how much they admire our strength…thats where i break down. I’m used to them being like a dragon slayer team you know? Come out guns blazing full force…ready to beat this disease to a pulp.

What a reality check tonight was.

I realized now for the firstime that we’re no longer fighting CF.

We’re done fighting it.

We’ve moved from fighting for life to fighting for a pain free death.

I hate that the last 7 years we’ve worked hand in hand, talking nonstop to the CF team, being on firstnames with the docs, there so much we know the rotation, we know the nurses rotations, we know the cafeteria rotations…we know it. and now we’re done.

can you possibly grasp how much it pains me to say that?

that we’ve dedicated every second of every minute of every hour of every single day of Conner’s entire life fighting this disease. With a team that is family to us. They send me personal emails letting me know they’re thinking of us. They call when they’re on call just to check on Conner. They have 300 patients but they are so extremely dedicated to Conner. I think our loss is just as much there loss.

and now we’re no longer fighting the disease.

we’re fighting the pain.

my throat is acheing from the huge knot stuck in it. Tears are threatening to flood my room. My heart is as close to out of my chest as I could’ve ever imagined.

There are no new lungs waiting for my son.

we’re on no list.

we’re simply on our way to becoming one of those statistics that have kept the 30,000 number of people with CF at that number for as long as i can remember. It won’t go down. There will constantly be 30,000 people with CF because we lose so many lives to cf every single day.

everyday.

24 hours in one day.

CF death statistics on average are 484 deaths per year, 40 per month, 9 per week, 1 per day

those numbers are way too high.

This so is not a game to me.

it’s no laughing matter.

and it is not a joke.

this is my son.

my dream.

my husbands hero.

our baby.

it’s not ok.

i can’t take listening to him whimper and cry. I hate that each day is worse then the day before. I hate that we can no longer travel…I pray he’s had a full enough life. I pray that his heart is full of peace. I pray that he dreams of God and of heaven. I pray he’s not afraid. I need to tell him that it’s ok to let go. That we’ll miss him terribly, but we’ll be ok. We’ll still love him. and talk about him. and do things that we did with him. He’ll always be our son. a brother. But I wish i could say those words and truly mean them. because I don’t. how in the world am I going to be ok? How in the world is our family going to make it? How will we go on? How can we be strong enough to guide our living children thru this maze of grief so it doesn’t negatively affect the rest of their lives? How do we honor Conner? oh lord…

how am i gonna live without him…how will it feel to wake up and realize he’s not there. to look at his seat in the car, his empty seat, and not miss him? how will i go upstairs and see his bedroom and not wish i could hold him as he slept? how? my life will never EVER be the same. never. never. never.

that’s enough.

i’ve had enough.

I cant talk about this anymore for now…

Love Love Love

         Sarah