Silence

My husband and two of our friends just left taking the two boys with them to the county fair. doesn't that sound southern of me. hee hee hee...no offense...anyway. I bet they're going to have a blast!
it is very quiet.
it's me and my dog, grover.
today was a hard day. i've been overwhelmed with some news i heard from a dear cf'er this morning...my heart literally broke. and then to find out about CG's hard night, filled with a code and yet another surgery after having her double lung transplant just days ago, and another little warrior continueing to have issue after issue after ISSUE from cf...gggrrrrr
so today is just very difficult.
it made me very emotional, not just about them but about Conner and the reality that he's gone now. for good.
and life as we know it is hanging in the balance for CF, for Skye, for every single person with CF. I don't believe there's a "mild" cf...because those with "mild"cf can still catch the same CF bugs and they too can get lung infections and they to can die from this monster. I feel like each and everysingle one of us is joined together and holding onto life with just a tiny little sewing machine thread. that frail, that fragile. one quick swoop and it can break, it can be over in the blink of an eye.
I've seen it. I hate that I have, but I have.
I've seen with my own two eyes how fast CF attacks when it's ready to. I've seen my child go from no oxygen, to nighttime only oxygen to 24/7 oxygen in a matter of a few months. I've seen him go from eating to not eating in one day. I've seen him go from being able to run and keep up, to run and be behind..to not be able to run...to not be able to walk in only 3 months time. I've seen a talking, eating, laughing beautiful bright child one day, turn into a shrivel of a human being slipping in and out of a coma and barely breathing the very next day.
i've seen my own son die.
i was there.
my husband and i were holding his hands begging him to just let go.
let go.
breathe.
let go.
we love you.
honey...it's ok, just go.
we love you so much...
it's never goodbye sweet prince.
i love love love you, always always always...

BEGGING him to die. because of what cf turned his life into. our lives. there wasn't a part of it, cf hadn't touched.
can you imagine that...begging your child to die...
uhhhg...
Cf is horrible...it's swift and precise, steals one smile after the next, fills your day with heartache, and gosh we need that cure...we need to stop this beast. no parent should ever have to beg their child to die...
i wish i never had to.

i dunno

i don’t know how i’m feeling today.

my heart feels empty.

my day just drags on

the birds are chirping

the kids are laughing

the sun is shining everywhere but in my heart

where is conner?

why can’t i take care of him any longer?

i’m only human and i can’t take losing a son…i know god knows my pain exactly…but thats why he is god and i am not. i can’t handle it the way he can.

it’s quiet

its lonely

its isolating

he’s almost been gone one month…

how did that happen

this saturday is one month

went out to dinner last night with my boys and husband…it was so quiet

there were no enzymes to pack

no oxygen to tote around

no 7 year old son to carry in and out of the restaurant

there was no breadsticks to order for him

there was no conner

i’m trying so hard not to be bitter…so hard

but my heart is shattered beyond recognition

i see his pictures and my heart rips to shreds

my chest hurts

my soul crumbles

my eyes water

my lips twitch

i have to remind myself that its ok to feel these feelings

that its ok that piece by piece my grief is coming to a head

that its important to try to move ahead

but today i’m mad

i’m glad gods big enough to take my anger because im pissed at him

for allowing conner to suffer

for allowing us to love him in the most intimate way possible just to have him taken away

i’m mad at all this silence

i’m broken

but i trust in him.

the plan is perfect

it’s bigger than you or i

but having faith doesn’t make it less painful.

god never promised us a life free from pain

and i think i got that message loud and clear

i’m mad, i’m sad, i’m bitter, i’m relieved, i’m joyful, i’m thankful, i’m confused, i’m lonely, i’m broken but i’m trusting in you god,

all that i have is for you…

everyone life is going on and moving forward

and mines just taken a HUGE step backwards…

and i’m shattered

and i wish it all would go away.

Conner Reed

Conner Reed Jones April 14, 2003 to June 24, 2010.

He earned each and every feather on those beautiful angel wings of his...

Breathe free sweetheart...mommy and daddy love you so much....

Verbal Vomit

Nothing good is coming in my mind today...so today I'm allowing myself to expel all of this negativity out of my brain, so that maybe it won't continue to eat me alive today. i'm going to now shut off my brain and just type whats in my heart...hope maybe it makes sense...

i'm so pissed off.

today i'm so beyond emotional. i don't think there's an emotion for the way i feel today. i want it to end. all of this crap. i want to get up tomorrow morning and not think about death. wish so much that i didn't have to walk thru this valley of the shadow of death...but that i can run thru it. that it will stop following me. everywhere i go. clouding my every single thought. i want to pick up and go to the store with my children if i so choose. i dont' want to have to find someone to sit with Conner or to pick up groceries for us. i want to not feel so overly helpless any longer. i want to recall conners childhood with fond memories, not ones now filled with bitterness because at the time i didn't understand just how blessed we used to be. we are still so very blessed now, but it's different. he used to eat. he used to run. he used to smile without pain. we used to go thru days without once thinking or talking about heaven. i used to be able to drive past a cemetary and not even think twice...didn't have to glance in to see what its like. not anymore. our blessings are different now. but they all revolve around death. i'm so angry. so angry. actually anger doesn't even sum up a fraction of my feelings. there is just no word strong enough. he used to be free to dance and play and sing and run and smile and laugh and go to school and see his friends and go to bible camp in the summer and swim in a pool and live without iv's and go to the hospital knowing we'd be going home healthier and go to clinic and gets smiles from the doctors...we used to plan for the future, take family vacations, hell even just plan family vacations knowing we'd all be there. going thru a day without thinking about or planning in my mind even just one aspect of a funeral is just not my reality anymore. thinking about finding a plot for my sons body to rest, listening to him cry because he wants his doctors to help him breathe, having to think about what size of a coffin would best fit a 7 year old boy, listening to others take all of this life so for granted. yelling at their kids cus they couldn't tie a shoe or because they'd be a moment late to something of unimportance...it's just frustrating. going to mine or my husbands doctor appointments and even our own doctor crying over what we're going thru. the simpathy. the piles of cards. the prayers. the well wishes. it's all just so discouraging to me today. because why is this for us?

why does this have to happen to us?

to our family?

to our son?

why is there money waiting in this beautiful account from beautiful people, just sitting there, mocking me...waiting for him to die so it can be spent? why? how in the hell am i supposed to run thru this valley of death....when i cant hardly find the courage or the strength to stand up in it? to find a way to really live in it. i can't imagine living past it. this anger is so deep and is directed at nothing. not a person. not god. nothing. it simply is. a new part of my daily life, or hopefully just a few days here and there of my life. i still have to function. i still have to cook. to clean. to wipe noses. to gather ivs and meds and supplies and breathing treatments and bolus feedings and grocery shop and mow the lawn and hug the kids and my husband and order everything we need...the world simply doesn't stop for death.

it pushes you right thru it.

and it's not fair.

how in the hell am i supposed to greive or be FULLY aware and living in each moment with this damn reaper on my neck...sitting at our doorstep. just mocking us. just waiting. there can never be enough time. each day flies by and blends with the next one, and the one just before it. i try so hard to make each day quality. i hope that it is. because i don't feel alive. i only know that i am because of this despair in my heart. in my brain. in my body. each and every second.

i'm tired of hearing people say that this will pass. it won't. it never will. sure the time will come and he will earn those beautiful wings and be free from pain. but it will never pass. it will never be done. it will forever alter the way i live my life. how my family lives their lives. how can we be forced to grieve publicly the most intimate loss of our lives? it's horrific. theres no words for it. no person can fully understand these feelings. unless they've lived thru the loss of a child. no aunt or grandparent or cousin or friend or great grandparent can ever come close to imagining how we as parents are feeling. i remember planning his birth. how we spent months decorating his nursery, picking out clothing, fighting for his survival then finally meeting him. the fight in me grew ten fold that second i first held him. and now we're forced to plan his death. why? all of this is crowding my brain each and every second, i'm so absolutely exhausted just from what goes thru my brain each second....its no wonder i just can't find the energy to clean the house up or even make a sandwich to eat.

living....breathing....this upcoming disaster....my heart is fully raw, and broken and angry. there really just are no words. i'm just broken. and nobody i know quite understands. i'm more overprotective now than ever over our family of 5. i refuse to let others ruin the time we have with our son. i'm very selective who gets to spend time with us. because it can be a distraction. while they are good here and there, it really is time taken away from my sweet son. and i'm not willing to do that. where does this all end......where does it all go????????????? how will i ever learn to live with this new way of my life??? when will i be ok?

answer probably, is simply....never.

a break...

Conner man decided today that he's ready for a break from his IV leash...such a big decision for such a young person...although he's wise beyond his years naturally from all of this. This decision scares the bejesus out of me. I asked him gently if he realized that the IV's help him feel good and that w/o them he may feel bad again quickly and he said "ya i know mom..."
so there you have it.
I talked to hospice today, have to schedule an appt....and tomorrow i'm calling our local funeral director here that has come highly recommended and see what he thinks if theres anything we need to do before hand....
this.
sucks.

Beauty...

I can hardly stand how beautiful the weather was this entire weekend. It was Gods grace and Gods love shining down in those beautifully warm rays of sunshine. We didn't do anything too exciting, projects around the home...I delved deeper into my love of all things gardening and created a little hide away for me to just sit and simply...be. I love it.

It's not quite finished, I'm going to string some lights out there so I can sit there at dusk or whenever and just kinda be...this garden right now is my life. It's a sign of new life and new beginnings of course...it's a story of reusing what we already had within us...and it's a story of peace and hope and love. The border rocks are actually concrete my husband broke out of our walkway, the wooden planter box is built from extra fence boards by my husband because he knows how much I love to plant and garden. There are bird feeders and a bird bath so our kids can sit and watch them. And one of the plants that I have planted is called a bleeding heart. Because that is where I am these days...how fitting.
We love to be out in our backyard as a family, but the sun can be so piercingly hot for Conner, so I went and got a umbrella and a table so he can be outside in the shade with us with his O2 near by.

But you'll see he's laying on the couch instead.
He didn't get off the couch much this weekend at all. His body is tired. Even on 4Liters of o2 he gets completely winded even walking to the bathroom from the couch not even 10 feet away. It's been a very difficult weekend. Emotionally. I just feel so robbed. I keep getting glimpes in my head of life without him in it. I'm terrified of that. absolutely terrified. I find myself unsure if it's morbid to figure out all of these decisions that will have to be made when he does leave us. I just know I'm going to be an absolute mess and the last thing we'd want to do is think about burial plots etc...but I don't want to waste time here and now doing it either. precious time with my son. I am stuck in between two worlds and neither one is completely appealing...life without my son in it or life with him suffering in it.
and that sucks.
As a mom I try my best to do each thing I possibly can for my children...and I've never been told that it's not enough. that it'll never be enough. that no matter how hard I try, I will not be able to fix the way he is broken. While I completely know it's not realistic...I feel a failure to him in that respect. I know it's a disease that I could've done nothing to prevent for him, and absolutely we've done all we can for his health...but we've failed still.
Conner has such a tender heart for his family, for his brothers especially. The day I shot the picture of him laying on the couch outside watching his brother play was Thursday while it was just him, me and Bradyn. Bradyn was playing in a little bit of water with some toys and Conner wanted me to take a picture of him with Grover because he said he just loved them so much, and that Bradyn was so cute...


Snapping that picture for Conner so he could see it up close because he was too weak to get up was absolutely heart wrenching. This is just happening so fast...I mean I know it's not really... it could be months or whatever of this...but to me...just a few weeks ago he was walking most days oxygen free until bedtime...and now...he's on more o2 then he's ever needed constantly and he still doesn't have the energy to walk.
This is just surreal.
No other way to explain it. Like this is all a movie I'm watching. I'm just lost in all of this. Conner asked me to sleep with him last night, Brad has been for the past week or more each night, so I felt special it was my turn.
I don't think I slept much more than 4 or 5 hours tops. He was wimpering in his sleep. His breathing with the bipap was loud and forceful. But I did my best to just hold him as close to me as I possibly could and just breathe him in. Just be in that moment as long as I could. It was beautiful and difficult.
He's just so little. His my firstborn child. His body is so tiny and fragile now. He knows whats going on with his body changes but he won't talk to me about it yet. So i'll just keep trying. I need him to know this is ok. That when Jesus is ready for him, we'll be sad, but ok without him. I need him to know that if he's too tired to stay here, that he doesn't have to hold on just for us. For our pain. Because thats selfish of us. He hurts. We ache. Such a delicate balance. I need him to know over and over and over again how much we love him, how proud we are to be his parents, how from the moment of his conception, his father and I fought for him to live, to breathe, to exist, to laugh, to grow, to play, and to live the fullest life as possible. Who knew that could be accomplished in not even a decade of living...
I only hope that when I say to him that I'm going to be ok...that I really can be ok....

Ahhh it's over.

Please don't get me wrong. Usually I love mothers day. The weather today was beautiful, and I got to sleep in til 9:30am...it started so perfectly. My husband put the kids in matching outfits and they looked so adorable. Melted my heart. We went to Starbucks and they gave me a venti instead of my usual grande for free since I'm a momma they know and love (guess it pays to go there alot eh?) Then we headed to church.

Thats where the good day ended. No specifics even needed. I just felt broken. Have you been there? See all of this, I know I've mentioned before waxes and wanes...comes and goes. One second I'm feeling good and in control of my emotions then WHAM! a second later my world is caving in and it's everything I can do just to keep from crying. I can not recall a day where I've been this emotional, EVER. They prayed for Conner man, it's the first time he's been in so long since he's so fragile. so it's the first time in awhile they've seen him. and he now looks so frail and so tired of his fight. i just felt devestated. Like for the first time, others could genuinely see the difference because they don't see him day to day...and i was overwhelmed. I couldn't keep from crying during worship...we left church, did some mothers day stuff and i just could never really recover from that. Brad made bbq hamburgers, and then I grabbed my ipod and walked the lake a time and a half...so a little over 4 miles and each and every breath I breathed in was a struggle. not to breathe...but to keep from just busting out crying. I've never felt his way before.

I believe in Gods plan for our lives....I pray for Conner to have a long life, but I have to allow myself to be honest and realistic. I thank you all for your upbeat words and on normal days they get me thru.

But not today.

Probably not tomorrow.

He's dyeing. In front of my eyes, each day he wakes up weaker. His eyes are darker. his breathing a bit harder than the day before. and today it was simply too much to take. mothers day. for the first time today i think i really felt like i wished God would take me. Take me first. Because if this is the despair I feel already and my son is still alive, then I can only imagine how I will feel when God calls him home. and i simply can't handle that. i know i can't. because today proved how unprepared i truly am for all of this. losing a child is the most devestaingly painful, heartwrenching, blindly numbing pain that anyone in life can experience, and this i know for sure. and i have yet to even fully experience that. i've only delved into a few layers...not the whole pain. so i know for sure, that losing a mother, a brother, a grandparent or even a spouse simply can not compare. and i am scared to death to fully experience this pain. scared. to. death.

today leaves me so open.

so raw.

and so vulnerable.

with so many questions now to find answers for.

but more than anything I wish God would take me first. How parents get thru and survive losing a child is simply miraculous to me. I look up to them, to you reading this, so much. Because i honestly don't know if i can. but more than that, i don't want to. really. from the depth of my soul i don't want my son to die. i know i can't handle it.

my eyes are so heavy from the tears. my throat hurts from swallowing back the tears all day long. my stomach is flipping all around today. my heart is simply broken.

b

r

o

k

e

n

and I don't know if i'll ever be whole again after today. the first of many, i'm sure horrible days. so happy mothers day to all of you wonderful mommas out there with kids sick, healthy and in between the two. count your healthy days as blessings as i do...and to you mommas out there whose child has already lost that battle and is no longer alive to hold. i am so, so deeply and terribly sorry for your loss. words are of no comfort to you for this i know for sure. i pray for you each and every night for your strength, and for your broken heart to once again become whole. i wont pretend one moment that i know exactly how you feel, because i do not. not even close i'm sure. but this pain that i'm feeling today. right now. in this exact moment is so desperatley intense that i can imagine the pain you feel is just a thousand times greater than that. i am just so, so sorry for your loss. no mother should ever feel those feelings. no mother should have to go w/o hugging their loved ones tight and kissing them in the flesh...i too, know you will see them again when it is your time...but for now, until it is your time, i will pray for your strength and your brokeness every single time i pray.

tomorrow will be a new day.

and so for that...i am overwhelmingly greatful.

goodnight.

No time like the PRESENT

what a day.
a day full of love. thank you to Ronnie for posting our story out there, the outpouring of love and support from the CF community has truly kept my head up a little higher than i could have thought it could be under these circumstances. my head is spinning. my phone is ringing. i hear the doctors voice in my head over and over again. "it's time sarah...it's time" "i need to discuss with you what the end of life with cf entails, you have many decisions to make...." i just can't believe it's all real. i mean, can it be? how can it be? my son is sitting up, talking, sometimes laughing...when his fevers are broke he looks alright, not great, but alright....but definately not like he's dyeing. but hey what does dyeing look like? you see these pictures in movies of people dyeing and it's so unrealistic that maybe he is truly dyeing right now in front of my eyes but i can't see it. i've got mommy goggles on. i don't want to see it. i don't know what i'm supposed to be seeing or looking for. i just don't know. don't know anything anymore.
can he really be dyeing? someone pinch me. i've been crying so much, but then all of a sudden i'll look at him and think..."no...he's not dyeing. he's not leaving me...." it just can't be. he's my child. my firstborn son. my life. my love. my every breaths fight. one of my main reasons for existance. i know he's only on loan to me from God...and I count each day as a blessing...but how can this all be happening so fast? why wasn't there any warning to it....? maybe there was and nobody told me. maybe i didn't wanna fully see it. i don't know. had i known that he was only gonna be here with me for seven short years i wouldve made them better. i wouldve been better. i would've done more for him. more smiles, more family memories...but now...it's all moving so swiftly in the other direction that all i have are the undones and the what ifs. theres not more time for the shoulda and wouldas...and thats devestating.
hug your kids for me. love them. not just say you love them but truly love THEM. each and every moment. Life changes in the BLINK of an eye. Gods plans are not our own. And now I'm just wondering where things are going and when...and how much more time I have to make the best of the situation that I can. thats no way to live. Live each day to the fullest, how cliche but DO IT. kiss. love. hug. hug some more. cry. scream. dance. laugh. play. make messes. have arguments. have pillow fights. make the most of every single moment.
time here is so short and so precious. and i know he's not gone and is still with me, but with the prospect of losing him hanging over my head all i can think about is the what ifs. the i wish i could haves...the regrets. theres nothing more helpless then that.
bless you for your love and your support. you keep me going. the cf community is the most amazing and the most heartbreaking community i've ever been a part of. the group i wish i was never a part of....but because I am, I'm so thankful for each and every one of you. my family. my friends. my fellow sufferers. I pray for a cure. such a miracle that would be.
But for now, my eyes are heavy. there are no more tears to cry for tonight. we've spent the day in the sun with our family and with the grandparents, and conner laughed and smiled and struggled and all of it was just beautiful. i had the clinic call in a strong oral antibiotic so that he can enjoy his bday tomorrow (wednesday) and maybe be home for his bday party this saturday. that is my prayer. brad and i are meeting with the team on thursday am to discuss home vs hospital hospice and advanced directives and intubation, etc etc. until then we're just going thru the motions. i'm ready for bed. i pray i wake up tomorrow and this is all just one horrible nightmare.
i wish...i wish...

Just keep breathing...

TGIF???

So once I heard of a saying like “TGIF”???? Hhhhmm…well I saw it all over Facebook today and I just thought wow…so TGIF really doesn’t apply to those trapped inside the 4 walls of a small hospital room. It’s funny how I say it like I’m the one stuck here. Really? I’m here by free will, I could walk out this door because I’m not hooked up to IV after IV, I don’t have 15 more therapies and meds to get done before midnight tonight. No respiratory therapist will be looking for me if I left…so why in the world do I feel it at all appropriate to call this my suffering? Because it’s simply not. It is not my own.

It is my sons.

He’s the one lying on that God forsaken bed, playing video game after video game, trying in desperation to numb the pain of being here, away from his brothers and his daddy. It is him. Not me. It’s him having to endure all of those medical miracles pumping thru his veins every 6-8 hours thru that implanted PORT in his chest. Not me. It’s him having to do all of these blood tests, blood troughs, blood cultures, x-rays, sputum cultures and viral panels. Not me. It is him having to drag his oxygen cord around this room like he’s a dog tethered on a leash, just so he can breathe. Not me. It is him who has to endure all of these tube and bolus feedings thru his g-tube implanted in his stomach, because he can’t find the strength or the desire to eat anymore. Not me. It is his pain. His life. The only life he’s ever known.

Funny thing, this cf disease. It is quite sneaky and devastating. And yes, it is of course progressive. Naturally. That’s the first thing you learn about this disease yet it never really sinks in fully I think. Hey Sarah define progressive…ok sure…it means to do something slowly over time, not right away. Wow Sarah, you are right! How smart. But sheesh, you must have then somehow MISSED the lesson on how it is real. How in cf it totally applies. Each day is worse than the one before. Noticeably or not. Always for the worse. Some days you may think for the better, but that’s how cf gets you. It is indeed a very sneaky disease. You may sometimes feel like you’re making great progress, that things are finally going ok. You’ve escaped those isolating, sterile hospital walls always knowing in the back of your mind that it is truly only a matter of time till the next shoe drops. There’s always another shoe. Always. You get to a point of comfort outside of these four walls. You make plans. You go about your day to day routine. Enjoy time with friends. Family. All the while knowing in the back of your mind, that at any moment it could all end again. Just like that. You start to fear making plans. You let cf kind of take over your daily planner, your summer vacation. Not intentionally of course but pretty soon it just creeps its way into your life very subtly, progressively. Not just health wise.

Progressive.

It’s really not a term that I gave much thought about until recently. It’s a word I hear all the time with that dang lady name d Flo selling auto insurance on tv, but disease-wise you also hear it. You understand its meaning. But you don’t fully let yourself comprehend it. But here almost 7 years into the fight I look back and can see without a shadow of a doubt the progressiveness of this monster. It’s horrid. It’s progressively devastated our family more and more. It’s progressively closed the lines of communication between my husband and myself from fear. It’s progressively crept its way into more and more of our days, hours and minutes. It’s progressively taken my sons health, almost unknowingly. Well more unnoticed I would say. Because generally I knew with each hospitalization growing closer and closer together that it was progressively getting worse. But never fully saw the effects of it all. The progressive disaster it’s caused Conner. Stick thin. Ribs flaring. Knees poking out. Thighs so thin I can fit my hand all the way around them with ease. Dark sunken in eyes. Pale skin. Blue tinged fingernails. Toes clubbing from lack of adequate oxygen circulation. Less talking. More breathing. Heavy breathing. Labored breathing. Sunken in neck. Rapid heart rate. Less eating. Less appetite. Less energy. Less drive. More rest. Less able to make it thru a day w/o accommodations. More riding in shopping carts or being carried everywhere. Less walking. Less. Less. Less. Always less. Progressively less.

Eating.

Seems like just yesterday he ate. A lot. Chunky cheeks. Healthy, happy smiles. I have many pictures of him up until I’d say age 4 where his face would be smothered in something. Pancake syrup, mashed potatoes with a heap of butter. Buttered noodles. Whipped cream. But as his breathing ability got progressively worse, so did his appetite. So did his ability to eat and breathe at the same time. Less. Much less. And now almost nonexistent. Can you imagine the arguments about that? How hard as his mom to not fight him to eat. He desperately needs calories. More than 4000 a day he needs just to break even. The business of breathing eats his calories right up. Always. Sitting together at the dinner table watching my 2 and a half year old younger son eat away. Eat anything. Always eating. And looking at Conner’s plate, hardly touched. Not even moved around in an attempt to pretend he’s eating. Nothing. No point. “go to bed!” “no more games!” you name it. What a struggle. The stress and the horrible helplessness as a mother knowing just how desperately he needs those calories but he’s unable. Unwilling. Eating progressively less and less. I had to stop the fight over food. It was too much stress. Unnecessary stress. Because I cannot imagine in any shape or form the feeling he must feel each day. Just to breathe. The pain. The constant pain. Always pain. Heaviness in his chest. “my breathings not good today mom!” uhg. I just can’t fully comprehend that.

The business of breathing.

The rise and fall of his chest. Progressively more rapid. More noticeable. More pronounced than before. Not even that long ago really it all changed. Damned mrsa and pseudomonas. Horrible cf bugs. The bugs keep getting worse. With worse implications. I’ve educated myself almost daily about cf, about the bacteria, all the colonization’s possible. The medicines, the therapies. The hope for a cure pipeline. I know it. But when it’s your son who cultures pseudomonas at 2 years old, knowing in your mind all the research that you’ve done on it says it usually leads to places where you don’t want to be. Knowing it’s your son now. No longer research, but real life. Then the new fight starts. So we fight cf. we fight pseudomonas. Then along came mrsa. Oh the lovely methicilin resistant staph. You just had to come along into the mix right? Maybe feeling a bit left out. Cf lungs are just like fly paper. Just so coated with the stickiest, most dehydrated mucus you can possible imagine. Then breathe in. breathe in fresh air. Full of bacteria. His lungs are a perfect breeding ground for them to grow. To thrive. To progressively take over his lungs. They find a section of it, they thrive in less oxygenated areas…PERFECT, because CF lungs have less oxygen in them than normal. PFT’s prove that. Conner’s lungs are 33 % of normal lung functions last checked months ago. Pointless now. Thick, sticky mucus that is just nearly impossible to clear. Cf tricks you into thinking that with antibiotics you can get rid of the mrsa, or even the pseudomonas. And you may. A little. But once you get it, it never fully leaves. You culture something else. But guess what? It’s still there. Just in harder to reach places, or crowded over in some random corner of your lungs. But it’s still there. Don’t let it fool you too. So disappointing. How utterly helpless. Pound on his back. Shake him up with a vest treatment. Have him blow PEP to loosen the mucus. Go ahead try. Stay ahead of it all. Because it just keeps getting progressively harder to get rid of it and progressively harder to stay ahead of it.

FIGHT.

But try. Give it your all. You only get one shot to make it right. Only one. And that starts from the moment of birth. Fight with all you got. Don’t take no for an answer. You just only get one shot to take control. One life. And it just keeps getting progressively harder to control. It gets harder to fight. To have the strength to fight. The motivation. It’s a very helpless feeling being his mother. Watching him. Praying for him. Listening to friends and acquaintances say to me how he looks good or that he looks healthy. No. it’s a lie. I’ve seen his insides. I’ve seen them. I know his lungs by heart. I know the blockages. I know why he gasps for air. I know why they have to so closely monitor his oxygen to make sure he’s still able to get out all the co2 he breaths in. normal lungs just do that. Simple. Not his. Not cf’ers once they get progressively worse. They don’t. They can’t. They stop. Helpless I tell you to not get upset at it all. To see people in the stores fighting with their children over something so small. So unimportant. So worthless. The jealousy and the anger I feel. If only they knew how lucky they were. Such a simple topic to fight over really. Not at all life or death. Imagine death. A child’s death. On your brain. Every second. Every day. Imagine that. I wish I couldn’t. I wish I could fight over something trivial. But trivial is just not important. My battles are so much larger. They are life or death battles. Kids want to fight? Ok great! At least their lungs are healthy enough to yell. Kids wanna run away from you in the store and you get all upset? Gosh…what I’d give to see Conner be able to run from me. To just be free from his chains for one moment. To run and be free. To breathe free. I fight only the important battles. The rest is just so meaningless. Absolutely a waste of time.

Lesson?

Life is all about lessons. Every single thing happens for a reason. There are no coincidences. Not one. It’s all laid out and orchestrated to be just perfect. Each and every trial you learn from it what you can and move on. I get that. I understand that completely. But death. A child’s death. What in the heavens is there to learn from that? Not one thing I can think of. It cannot possibly stand to teach me one thing except suffering. About the unfairness of it all. Not about my strength, or my sorrow, or how I loved. It’s not about that. A child is simply too young. Hasn’t seen enough yet. Hasn’t really been able to dream the largest dreams. Take it all in this world…simply can’t do that in such a short amount of time. Especially in a time that is only filled with suffering. There is just nothing there. No lesson in it at all. So why does this happen? And not just to us. To so many. SO MANY. Miscarriages, stillbirths, infant death, SIDS, immunization deaths, car accidents, drowning, disease. Why? The absolute selfishness of it all. Such a test of true character. It is a test that I’m just not sure how one would pass. How could you? When it makes no sense, and kills you right along with it. No lesson to be learned as you move progressively to the end. Always moving that way. There’s simply always a shoe left to drop. Always. It is a test that I know that one day way too soon for me, I will fail.

DENIAL

What a safe place to be. I find it as a very fuzzy, soft comforter to envelope me in, just swallow me in and take with it my worries, my fears. I love it so. Numbness. A very productive coping mechanism. It’s not the same as denial, but it is an escape just the same. I go thru fazes almost daily. Sometimes hourly. Sure the doc said it was bad…but two weeks later I’m home and not in that hospital and I forget. I get back to my numb little existence. Ok well wait a second doctor told me those same horrible things….it’s real I think. This time for sure I think they mean it. Numbness again. So easy to cope with it all. I don’t deny the truth any longer. But I choose to be numb to it. It’s what gets me out of bed each day. Helps me to put one foot in front of the other. Can you imagine? Can you? Please walk in my shoes somebody. Please tell me how I can make it thru this all in one piece? I simply don’t know how. I don’t know why I’d want to. If he no longer existed. Why should I? More than because I have more family, because naturally I’d never intentionally leave them. Physically. But emotionally. It’d be so unbearable. Fighting from the moment he was conceived. Years and years. I grew up with him. He taught me how to grow up. He showed me the real meaning of life. To find a passion, a dedication, a meaning, a purpose, honesty. Nothing would matter without him. Numbness would overcome me. But I don’t think it’d be progressive. It’d be immediate. It would mean that cf won. It would mean that I wasn’t strong enough. That I had absolutely nothing to offer cf except my firstborn child. My son. It would mean that once again, that I have failed. And it’s just not like I’m losing a game of checkers. I’d be part of that elusive, very exclusive new club that nobody wants the invite to join. The one that nobody sends back their RSVP for. Yeah me. The underground society of parents who have lost a child. Where do you go from there but down? Into numbness. I just don’t ever care to find out. So please, let’s just not.

Fortunate

Please don’t get me wrong. The fight is horrible. It is physically, mentally, emotionally, and spiritually draining. It is constant. There are no day offs. No lunch breaks. No quitting time. I punched in my timecard the day he was conceived and I will never get to punch it out until I’ve lost. And I am not complaining of the fight. I live for the fight. I love the fight. Because as long as I’m in the fight it means I get to keep my son. To lose the fight is to lose my son. So I love this fight. I’ll do anything to stay in this tedious fight.. As mind boggling as it may sound or seem I need this fight. Like nothing else. I’m so thankful for it. For my semi-fair chance against cf. One and only chance that is. And I’m living it; I’m taking it, as far as I can as much as I can for as long as I can.

Daydream.

My mind just travels, it twists and turns and takes me to places I don’t want to be. Places a parent shouldn’t be. Let’s dwell on making it to second grade. Summer break. Reading full books, losing and getting all teeth. Anything but where my mind wanders to. Funerals. Blackness. Emptiness. Despair. Suffering. Emotional death. My mind it seems is trying to get me thinking, accepting, or simply just grasping the full severity of it all. How we’ve been progressing and where we’re almost to on our path that we were for some reason meant to travel down. Somebody let me make a free right hand turn please. Stop this train. I didn’t ever want to be on it. Not me. Not my son. But I guess then whose? Why not me? If it’s gotta be somebody, better it be me. Save others from it. Just wish it was me and not my son. Just me. My mind just wanders. All the time. I’m in a constant state of daydreaming. Always it seems. Guess its part of the journey. And if it saves one other person from being on this journey, then god knows I can handle it. I will learn to. Nobody should feel this. I don’t know if it’s different than actually having the disease. I just can’t tell. It’s different for sure. He suffers. He aches. He struggles. But I ache, suffer and struggle, but all for him. And there’s nothing I can do for him. I will take this burden though. But I really know there is simply no lesson at all that you can ever learn from the death of your child. I won’t pretend there is. There just can’t be. It’s the ultimate insanity. But one day he will be free. Free to breathe. And I’ll count the days till I can be there with him. Making this earthly hell so worthwhile. So yes. Cf is a horrible, devastating and progressive disease. It is lethal. It doesn’t differentiate between taking an adult or child. But I love the fight. I’ll gladly fight till my dyeing breath for him. For all of them. For all those yet to be born with it. But I simply won’t accept that it’s for a reason. There’s never a reason that could justify a child’s unending suffering and ultimately having to die for peace. There’s just not.

just my random thoughts today...

"Why is gramma so sick?"

Those are the words Conner asked me tonight at the dinner table. Brads gramma Shirley in Idaho has been hanging onto life by a slim thread this past week in the ICU on a ventilator. She's had moments where we thought she wasn't going to make it, then miraculously she'd wake up a bit to acknowledge the visitors, so it's been quite a roller coaster of a week. Well tonight, she gave up her fight. She passed on about 2 hours ago now...which brings about a very wierd mix of emotions, worries and feelings. Brad is very distraught, naturally. And I miss her terribly already. I feel a bit better knowing that now she's another angel watching out for sweet Conner along with both my grandpa's, my great aunt, and brads other grandma among others. Because we could really use all the divine intervention we could get! but now...


Now we have to figure out how to bring up gramma GG dyeing to our sons. We were planning on talking to the kids about illness and dyeing with everything that is going on with Conner, and now it's going to be very real. a very intense talk. Because now it's not taboo...it won't be a "someday" you will die type talk...it'll now be "today" your great grandma died...etc and im so very worried about that. Talking about death never was something that I felt would be easy to do, or for Conner as well, but now it's real and now it's going to be even more difficult.



He asked at dinner why is GG (great gramma) so sick and in the hospital...and Brad has real emotion right now having just lost his grandma...so now i'm very concerned about this discussion. and I'm just not sure what to do

Lordy, if anyone has any advice or ideas I'm all up to listening. Because I feel so confused just thinking about it.

Please pray for strength, pray for me, for brad, for conner and hunter and please pray for the entire Erikson family for their great loss tonight. And may GG Shirley forever rest in peace.
(GG surrounded by Michelle, me, Tammy and Jenny)

Conner's famous again!!!

Well I guess I shouldn't be too surprised...but our home away from home, Long Beach, WA did a remarkable article in this weeks paper (yep...only one paper a week!!) Conner's had articles in papers before, but this one is truly exceptional. The writer, Amanda Frink did an AMAZING job capturing CF and our lives!!! You can read it HERE.

In other news, last night was Brad and I's counseling appt where we discussed the when and how to talk to Conner and Hunter about Conners declining health, CF, and dyeing. ICKY! Thats not a good talk to have! I feel we've made a solid plan, and I have complete faith that God will help to give us the words to speak, and the strength to do so. Part of me is still in denial of it all, quite honestly. I mean here's the best way I can explain it. So back in October when Dr Link sat me down and told me how serious Conners condition was, I went thru a good 2-3 week mourning period, where I just felt broken and was easy to cry...but as time went on, even though we kept going back to the hospital week after week up thru January it kinda wore off. I got numb to it. and life went on. Then when the second peds pulmonary cf doc sat me down in mid January before our trip to Hawaii and said the same things, i was completely taken back! why? because i was so numb. i refused to waste time FEELING the grief, and honestly, I just didn't want it to be true. So when he said that to me I again went back to that intense feeling of despair, but as we got home from Hawaii and his health is stable (not great, but it never has been) I'm back to my numbness. I don't believe it. It's easy to see and believe when he's in the hospital, horribly sick, but when he's home and doing ok I just can't believe it. So I pray that our plan will fall into place, that it'll open up a dialogue between us and Conner, to let him vent because we just know he knows whats going on but has been too afraid to say it, and to let us all just love each other and hug and support each other. Our plan with Hunter is very similiar, only the conversation will be different. He's only 4. It will be very devestating and quite confusing. It is a grown up conversation being given to a 4 year old child, with child like feelings and understandings. It won't be easy. But I pray that it'll be effective, and it will just continue to help us grow closer in this time that we have together.
Nothing else is really new, I think that's enough for one day, don't you?! Continue to love and support those with CF and their families. We all need strength and love and support to navigate thru life with his disease. But I still say we're the lucky ones, who learn in a very short amount of time the true meaning of life. and love. and living each day to the fullest. and that tomorrow is never a guarentee!
Lots of Love!