24 hours…

Wow…

what an amazing, excruciating, painful, relieving few days it’s been. Conner’s been breathing free and deeply for 24 hours now…and it’s just surreal. More for my memory than for your information I need to write out all that has happened. It’s been the most powerful, life changing few days of my life and I don’t want to forget one second of it. Ever…

My mom must’ve had mental telepathy or something…she called me Monday and said she had taken the rest of the week off and just wanted to help us out and be there for us. Sure I said, C’mon down…She arrived Tuesday evening.  Conner took a long bath that evening, and was leaning on the bathtub edge but oh he enjoyed the water. it really soothed him. Wednesday there was alot of running around for me since i had my mom to sit with the kids because Conner was in no mood for travel. I spent the day getting an A/C because it was FINALLY warm here and with Conners oxygen concentrator running 24/7 the house was staying pretty warm. He was running off and on fevers so I wanted to make sure he was comfortable. Wednesday evening I went to CF family council and after the meeting I sat down with Ben and Wendy from the team and discussed pain control issues with Conner and we exchanged good information and they gave me specific things to look for etc, but at this point Conner wasn’t great, but he wasn’t dire that would come later, unknown to me. I made it home and Connerman and I snuggled in my bed as we have been bed buddies for the past few weeks now, Brad has been sleeping upstairs with Hunter boy. Time very well spent in my opinion for both brad and myself. That night Conner was whimpering off and on and he even was pottying in his pants because it was too much for him to get up to go to the bathroom. His breathing was rapid but it was still on the “normal side” for him. This went on all night and we didn’t get much sleep at all (conner and I). He ripped his bipap off that night as well saying it wasn’t giving him enough oxygen. That was a first sign.

The next morning, well probably only about after 3-4 hours of sleep things took a horrible turn. and I mean HORRIBLE. His breathing was so rapid and so struggled that with each breathe his body shook the bed with the energy needed just to breathe. I called Ben first thing about the bipap to see if we could switch settings to help him out. we did. it still didnt work. I called Conners home nurse, Correna to come out to see him cus i wasn’t sure if this was really happening or if I was overseeing things. She came out and took one look at him and I just knew then that it was now not a matter of days weeks or months…but hours. I prayed at that exact moment that when Conner passed that it would be in the evening. Past the time most people are awake so there would be no nosy gawking neighbors, or commotion, our other small children would be sleeping and wouldn’t be scared when it happened. I’m so greatful that Conner gave us that one last amazing gift…thats our boy. at some point here conner looked at me in bed and just kept saying “why why why why” that was almost unbearable. I had no answer to soothe my son. so painful. Noontime came and Hunter returned home from VBS and brad and I brought him into our room where we were with Conner, and told him that today would be the day his brother would meet Jesus. Hunter understood very quickly, he laid next to his best friend and he didn’t want to touch him so he wouldn’t hurt him (although was reassured over and over he wouldn’t hurt him) and then ran outside to play. The family had already started arriving for help and support and to say their goodbyes. Dear friends were there coordinating our lives and house and things really were smooth.

Time from here is very foggy. The last time I remember was noon and that was because hunter came home from vbs. i think one of our dear pastors came out that morning as well, leaving vbs to be with us. to pray with us, for us, and he and conner had a very private prayer time. At this time forward Conner was mostly out of consciousness. He was there but not really there. He was only taking oxicodone and ibuprofen every 6 hours then. Brad and i were with him almost the entire afternoon holding him, talking to him, resting with him, loving on him. and every once in awhile he’d open his eyes and his eyes would be frantically searching for something so i’d tell him “mommy’s right here” or “daddies right here” and he’d settle back down. There was an hour that he was completely lucid. He all of a sudden woke up and asked to be moved to the couch in the living room to be with everyone. Balloons with a stuffed animal arrived just then from his dear buddy Mason Grahl in Wisconsin. Perfect timing. We’d been trying to keep his mouth moist and clean since he’d stopped drinking the night before. Conner asked for an Otter pop, he ate two. Then he wanted watermelon and he ate a slice, he wanted mini marshmellows, and ate alot, and then finally a banana. His last meal on this side of heaven. Such a great menu for him…

A little later he asked to be moved back to our bed. So Brad carried him back and we got him all situated and comfortable. His home health nurse Correna came back by to check on him and we talked with her about doubeling his pain med dose. She left and called Ben to talk with him about it, after checking his sats and at best they were 85 by then. Awhile later Ben called me and said that legally he can’t up the dose since nobody is in the home as far as a licensed nurse to be there for administering it. He suggested that if our ultimate goal now was to keep Conner pain free then we should make the switch to hospice. I think at this time of the day i was feeling a bit more optimistic or in denial of it all since conner had just been wide awake just a few short moments before. We decided to have Ben switch us to hospice.

BEST. CHOICE. EVER.

Here’s a bit of disapointment. As a CF mom I’m used to having insurance companies deny Conner a med like it’s a fun game, or make us jump thru hoop after hoop to get a prior authorization for things. Ben called hospice, made the referral, hospice then called our insurance to get the mandatory prior authorization and it went thru LIKE. THAT. that hurt my soul. Insurance is so backwards. Not the point. Anyway. hospice nurse came out at this time and was in our bedroom with brad, conner and i, as our bed had become our couch, table and bed over the hours of the day. i signed the consent forms and Brad and I watched as the nurse showed us how to administer the morphine and the lorazopam into Conner’s port. We then gave him his first dose as the RN was there since he was just about due for oxicodone. He was comfortable within minutes and was able to actually fall asleep. which was such a huge relief to us.The script was for those meds every hour at the small doses, or every 4 hours at the highest dosage prescribed. We stayed with the low one since he’d lost SO much weight and wanted to be cautious with narcotics. we hate them.An hour passed and we gave him a second dose. i walked outside to sit with family then for a bit since brad was in with conner. we alternated being in there with him so he was never w/o his mommy or daddy. i think this may have lasted around an hour or so. i have no clue.

What I remember next is that all of a sudden I looked at the clock in our room and it was 9:30pm. Conner was half hour past his dose of morphine. Almost immidiately I asked Sonja our dear friend and nurse to draw up the meds so brad and I could stay with Conner, he started moaning a bit. it wasn’t really like a cry, it was more of like a deep humming sound that started off very faintly and then grew louder and louder. It seemed to take Sonja forever with the meds and Conner in a matter of seconds had rapidly become very uncomfortable. I yelled for Sonja to hurry. Brad and I kept our faces low to Conners and kept whispering words of comfort and love into his ear. After what seemed like forever (but it I’m sure wasn’t!) Sonja came in and gave C the meds. A.M.E.N. After a bit the moaning stopped but then his skin had started paling and his fingernails were turning blue as well as his lips and his chest. His breathing became intense. It was very intense. It was heartwrenching to watch. I don’t wish that on the devil himself. Nobody should EVER see their child in such pain, distress and misery. Slowly people began gathering in our room with us. talking with conner, telling him how much they loved him. People came and went, I have no clue who all was even there. There was so much my friends were doing behind the scenes. They all were so amazing. So amazing.

It got to a point around 11pm where everyone was gathered around him and praying and conner would stop breathing then start again like 30 seconds later. After about ten minutes of this we asked everyone to leave. It was just Brad and I and Conner, just like the day he was born. Perfect. He kept fighting off death, I think more for us then for him. He kept stopping breathing and then a bit later would start again. Brad and i kept whispering love into his ears, telling him we’ll be ok without him, that we just want him to be out of pain, that it’s ok to go.  He just seemed worried about us. Bless his heart. He’s an amazing child. Brad and I were laying with conners arms on us. He was in the middle of us and we each had a hand and the other hand was either touching conner or holding each others hands. It was beautiful. really. powerful. The time came when he finally stopped doing the gasp for air after stopping for a period, this time his body tensed up, he squeezed our hands and instead of inhaling he exhaled. silence. then a short while later again he exhaled. He was gone. at about 11:40pm our firstborn son died. I knew he was gone but denial told me otherwise and so i asked brad if he was gone and he said yes. the pain that ensued at that exact moment is simply out of this world. indescribable. I’ve never, EVER nor will I ever again feel such deeply intense pain. Every nerve in my body was tingeling. My heart felt like it was going to burst from my chest it was on fire. The tears and moans were intense, loud and simply horrible. There simply are no words really. Brad then went and told the people in the living room that he was gone…they all came in. I heard voices but my eyes simply wouldn’t open. I kept screaming out to God, I remember screaming for someone to just turn off the oxygen concentrator since I heard it buzzing still on Conners face and it just infuriated me. They did. Whomever that was, thank you. I remember hands all over us, hugging us, rubbing us, consoling us…then I remember Brad telling me that I needed to open my eyes to look at Conner, He said that he was beautiful, looked so peaceful and pain free. I fought that for awhile, I simply wasn’t ready, and I was scared of what death would look like on our child.

I opened my eyes.

He was breathtakingly beautiful.

He had a Conner smile in the corners of his lips so I know what he saw as he was leaving this world was good. amen for that. He looked like an angel. truly.

We spent time with him, everyone said their goodbyes to him and gave him a kiss and then at some point the hospice nurse came in to record what she needed to for the death record. She did so without disturbing brad or I, a true gift. She was exceptional. Our funeral home that we’ve been making arrangements thru was called, and at some point a few hours after conners passing Rick Little showed up to take Conner.

THAT’S WHEN MY WORLD STOPPED.

The intense feelings of just him being in our home, in a wonderfully tailored suit at 2 or so in the morning. That made it all the more official. Brad and I gave Conner some last loves and kisses and left our room to the living room and told Rick we were ready for him to take Conner. What a man. He made sure to leave the stretcher outside, out of view. He didn’t put Conner in some horrible black zippered bag. He simply draped him in a white blanket, but I noticed that it was tied on either end so his body wouldn’t show. A true gentleman, where brad and i were sitting, literally being held up by friends mighty arms, he made sure to carry him out in such a way that we couldn’t see much of him. As he walked out of our home Brad and I simply cried, screamed, whatever. This would be my first night without Conner. Since I was with him at the hospital for each and every moment, and arranging all of his therapies, appointments and medicines for his entire life…seeing him leave this house that we bought for him to be closer to the hospital…my dreams kind of died. My dreams for my firstborn son kind of walked out the door with him. i simply couldn’t breathe. i was gasping for air. Brads head was buried in my lap, he didn’t want to see it all unfold. Our wonderful family and friends were all around us holding us together as best they knew how, yet allowing us to simply express our grief. Rick came in after he placed Conner in his vehicle. He knew our family. He knew and prayed for Conner. This hurt him as well. He gave us his hand and looked into our eyes and expressed his deepest sympathies and said “i’ll take good care of him” and left.

People were already called of course but there was one more call to make. To the CF doctor on call. Mary called to wake up Dr Wall and told him of Conner. Then she brought the phone to me…he expressed his deepest sympathies. He said in his almost 30 years of being a peds pulmonologist that he’s seen unfortunately many with cf pass away. He remembers vividly very few. He said Conner would be forever in his memory. He has a picture of Conner and his bingo buddy Matt (mary’s son with CF) hanging on his wall at the hospital.Since they could never be that close, we photoshopped them together and made a picture. Mary’s family did that. He asked about services…and said that he would let the entire team know and all of the nurses and respiratory therapists and child life people on floor 9 know. The school teacher even. I know that he did. At some point Brad and I fell asleep, him on the couch and me in our bed hugging Conners Grover doll. I was woken up by Hunter around 9am asking where Conner was. I said in heaven now..Hunter looked at me and then smiled and said “no more oxygen mom” then he ran off to play. thruout that morning there was a flood of help in our home. I stayed in bed for quite awhile before I would brave going out. Dr. Link among others called. I had a friend call the home health company to remove all medical paraphanalia out of our home. I wanted to see nothing of it. Bless their hearts, as I walked out of the bedroom dreading what I would face, all of Conners meds, nebs, tubes, syringes, needles, feeding bags, boost, EVERYTHING was gone. Out of sight. What was unopened was placed in a large box and already was arranged to be given to families with CF who have no or little insurance. We had just reordered pulmozyme which is expensive and even had almost a full months dosings of Cayston which is around $5000. I feel so good to know that more than $8000 of meds would be given to those with CF who need it most. Conner would be thrilled. Obituary was turned in and will appear in Sunday’s paper in town, in Olympia, Vancouver and the Long Beach Peninsula as well.

the rest is simply details…

Dear friend so close to our hearts Dana, gave us the most amazing gift…she took pictures of us with Conner on his last day on earth…these will simply take your breath away. We will cherish these for a lifetime.

Moms hands with Conner

Mom with Conner, my tears running down my hand.

dad and son

Conners hands on daddy

just as I kept whispering in Conners ear…

Love Love Love

Sarah

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....

the end

….is near.

Conner took a horrible turn last night.

We feel today will be his last day…if not today then very, very soon.

god help us all…

 

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

 

Terrific/Terrible Tuesday

Conner’s having problems with his breathing today. He’s been laying around all day. Now he’s finally sleeping next to me in my bed. He asked today to restart his IV’s…I’m so glad he made it a week and a day w/o them. He was able to bathe, and be free of IV’s, though he wasn’t really up and walking around at all. Still, emotionally and physically, he got to really ENJOY his days without antibiotics.

But today he says no more…

I called the docs, and either tomorrow or first thing Thursday he will have his PORT accessed with that huge push pin needle in a way that is so brave you’d be SHOCKED…and we’ll restart antibiotics to booster him up. and hopefully help him to feel a bit better for awhile.

Family came to visit from out of town today, my dad and his wife and her grandma from Hawaii, Nana. Nana hasn’t seen Conner since he was maybe 2 or 3. It was a great day for a visit. The little boys played in the pool and had a great time. and mr. conner laid on the couch inside most of the time. He was able to come out and lay on the outdoor couch in the shade for about 20 minutes. so that was nice.

Now he’s sleeping.

And I’m watching him.

closely.

And praying over him.

For peace. For no pain. For breath, deep breaths. and good rest.

breathing is a privilege, not a right!

Ok bare with me, this might get a little bit ugly.

AAAAAAAAAAAAAAAAAAAAHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!!!!!!!!!

Ok I feel a tad better. Lets start over shall we?!

Ok hello, it’s Monday…pajama Monday as a matter of fact…a tradition we started when Connerman was just an infant. Doesn’t matter if we’re staying home, cleaning, running errands or whatever…we stay in our jammies all day long. I love PJ Monday! LOVE LOVE LOVE!

We’ve entered a weird phase of Cystic Fibrosis recently. In the form of headaches. Really sounds like no big deal…until you realize that headaches in end stage CF are caused by a lack of ability of the lungs to remove the excess CO2 from them…causing the body’s PH to become acidic resulting in Respiratory Acidosis. Phew…thats alot of cf talk. So yes headaches. Conners having them off and on now. Usually a good dose of ibuprofen makes them disappear, for now. So I won’t get all panicky just yet. But yuck. We’re there now. His lungs are becoming unable to properly exchange his oxygen and carbon dioxide. Which will eventually lead to coma and/or death.

In other “bright and shiny” news…Conners handmade casket arrived to town last week.

I’m not sure how best to describe my feelings and emotions on that one. But lets give it a try shall we?

It’s beautiful. Handmade by a wonderful gentleman in Vashon Island area (Washington). He donated it to our family. Which was a HUGE burden lifted from our shoulders. Not sure if any of you have priced caskets but oh my…they are in the THOUSANDS of dollars range. My friend is going to stain it a medium brown color and then another dear person is going to paint a beautiful picture on it for us, and when the time comes, our family of 5…well 4 will leave our handprints on it for all eternity…so we’re always there with our connerman. But until that time comes I don’t want to see it. Or touch it. Or smell it. Or talk about it. I know where it is right now, and I won’t drive anywhere near it. Odd isn’t it? It is the most kind hearted, PRICELESS gift anyone could have ever offered our family…but I hate what it stands for. I love it. and I hate it. It will be perfect for our family, Conners personality will shine on this beautiful gift unlike the cold, sterile ones we’ve looked at that are so ridiculously overpriced it’s unreal. We are blessed. And we are cursed.

Conner sleeps more. He breaths harder. He panics more…oxygen related that is. It’s so tough on his body to travel. I’ve removed the high back on his booster seat, and recline his seat back in the van and put a airplane pillow (which MAY have come home with us on his make a wish trip in January…) behind his back so he can be somewhat comfortable. It really sucks. The time we can be out of the house is less and less.

and here we sit, defenseless. Helpless. Backed into a corner with nowhere to turn and no way to escape. I just can’t believe this is all real. I really cannot believe how much I felt like he’d make it. When we had these talks with the Dr’s a few months back, I kept saying and thinking…”if we can make it out of winter and into summer he’ll be fine!” because we all know how hard winter is on CF lungs. Lots of disease going around…but here it is…summer (well despite the WA rain…) and he’s not getting better.

He won’t get better.

I’m just not sure what to do. where to go. how to help. what to say. how to feel. how to best enjoy all of this.

each night when he sleeps next to me, i hold his hand and just watch him for what seems like forever, until my eyes are forced shut by sheer exhaustion. I keep thinking in my head how oneday I’m going to look back on this time and simply WISH I could do these things again. The little things we all take for granted. holding hands. hugging. kissing. laughing. loving. watching him breathe. all of it. i simply can’t imagine my life w/o him in it. i can’t. and i don’t want to.

Piper said something in one of her latest posts that really struck me hard. She said something along the lines of “I wish for all the CF’ers who are awaiting new lungs, or who will never want new lungs could feel how wonderful it feels to just breathe…”

wow.

How horribly true is that? You and I (most of you i would imagine) can breathe just fine. No need for oxygen supplementation. No need to take breaks from just walking up a hill. No need to lug o2 tanks everywhere you go. To go out in public wearing o2 proclaiming to the world just how much your lungs hurt. how lucky are we? I would do anything…ANYTHING for all of you with CF to simply breathe. It should’nt have to be a struggle. Breathing is supposed to be something involuntary that we don’t even have to think about, it simply is…

it’s so unfair that it’s not. for you. for conner. it’s not. it’s unfair that there are so many people in this world who do horrible things, but are perfectly able to breathe. It just doesn’t make sense. Like Josh said “don’t let your broken body lead you to a broken soul”…so SO true…

Anyway…don’t really know where I was going with this, or if there was any point I was trying to make. I’m just simply sorry. So sorry so many of you can’t breathe. So sorry there’s nothing I can do to help you. I can’t even IMAGINE what it feels like to not be able to breathe. I’d trade my lungs for yours. I would. I’ve seen too much of the horribly CF sufferings…and I know for sure that it’s horribly unfair. and unacceptable. And i’d gladly take it all away…and give you my lungs…

Breathing apparently isn’t a RIGHT…it is a PRIVILAGE!!!!

Father of the universe…

Of course I’m biased…

but I’ve known my husband since we had graduated high school. the epitamy of immature.

there is nothing like a 20 year old “boy” to put into perspective…a life of self centerdness and things of unimportance.

I’ve known him thru all of that.

I remember the day like it was yesterday…

the day he became a DAD….

and not just a dad…because anyone can be a dad…but a FATHER.

A loving, caring, compassionate, up in the middle of the night with a smile on his face, MAN…no longer immature, self centered and relying on his own dad anylonger…

but a MAN who stood up to the challenge and jumped in with his heart leading the way…and I am so honored to say that he is the father of my beautiful children…

Heres to you my dear…

the firstborn son…the child who made him a FATHER…

the secondborn who made his heart melt even more…and confirmed in him that he was always destined to be a fabulous father…

spending time with the both of them and then…

soothing the fears of his 3rd newborn son just minutes old…

Thank you Brad for creating with me three of the most precious, perfect sons I could ever dream for…for leading this family to a wonderful life, with wonderful memories, and teaching our children of Gods love and their parents never ending support and love and ENDLESS boys nights and cuddles…

we are so lucky to have you…

Happy fathers day to all you fathers out there…seasoned fathers, fathers to be, fathers in the making, and fathers who are dreaming of being fathers…you all matter so much…

All my Love,

Sarah

No need to argue parents just don’t UNDERSTAND

Totally not unlike the DJ Jazzy Jeff and the Fresh Prince song that I’m sure you have stuck in your head now.

You’re welcome!

It’s just a day for me I guess. It’s Friday, my hubby is home with us, we took the kids to see Toy Story 3 this am and ABSOLUTELY LOVED IT, but this day is leaving a very sour taste in my mouth already and it’s only have over. (Please Lord let time speed up to end this day!)

I can’t really go into too many details of it all but I just wish people would listen.

I really wish that they’d finally “get it”

I feel very unheard.

Unlistened to.

Like what I say isn’t taken seriously.

Like what I say is to always start a ruckus.

It’s been so long and I’ve been saying the same thing over and over AND OVER AND OVER….until I’m WAY past blue in the face…but it seems to still haven’t gotten thru.

Hasn’t sunk in.

Only now instead of making me angry how it has before.

Today I’m crushed.

Unsettled.

Unhappy.

Confused.

Unheard.

Heart broken.

Speechless.

I wish eyes could be opened. and hearts as well.

I wish for once that I felt like I wasn’t the one whose trying to be selfish.

Because I’m not.

I’m being completely realistic.

Times have changed. Situations have changed. and yet here we are at ground zero…having the same conversations. over and over and over again still.

But i’m just crushed now. I’m hurt.

What could I possibly have left to say that I haven’t said already?

Or what more can I do to possibly have it finally sink in and make sense?

I thought maybe we were nearing the finish line between getting it and not getting it.

But I guess not.

Guess we’re starting over.

Only I just don’t know what to do.

What to say.

Or even if I should.

It shouldn’t even be a discussion.

Should I even waste my time? Because thats all it in anymore. A waste of my time. Expressing the truth of the matter over again. Being blamed as the bad guy. I’m just past this. I thought we all were.

Guess I was wrong.

Guess my expectations were too high. Are too high. Who knows.

I just don’t get it…and I think for now I’m done trying to…

Love

Sarah

Wordless Wednesday…

Oxycodone…

Today he was in pain.

Back pain.

Today he needed oxycodone, heat packs, and ibuprofen all day long.

He wanted to take Bradyn to the library, as we usually do every Monday in the summertime…so we did. It completely wore him out. He couldn’t catch his breath…and I kept asking him over and over if he wanted to try another day and he refused. This was important to him, so it became important to me. We checked out some books the boys picked out, and came home…and Conner rested the rest of the day on the couch…dozing in and out of sleep…

I’ve been putting off using oxycodone unless he absolutely needs it, because in end stage CF it can hasten his progression as well as slow down his breathing…both of which scare me to pieces.

Today was simply supposed to be our weekly pajama Monday. A trip to the library. Fun in the yard. Laughter. Smiles. Not a day where we go to get daddy’s fathers day gift and Conner simply says “can you just make this quick i really wanna go!” He was in pain. And it showed.

Today was a very strange day for me. I can’t really put words to it, as to why…I have a few things that stick out, but nothing concrete. It just feels different. This all is starting to feel permanent. Very, very wrong. Yet the world keeps spinning, refusing to even slow down so that I may try to catch up with it all…with reality. My friends make plans, our extended families make plans, all of which include us.

But I cant commit.

I won’t.

This is becoming too important.

The time is ticking away. Slipping by each and every second.

With each breath he breathes…

I can hardly remember the luxury of planning things out in advance…we live hour to hour…

I wish I could fully put it into words. But there are no words powerful enough. There couldn’t possibly be. how could there? A child isn’t supposed to die. A mother was never intended to outlive her firstborn son…breathing was never supposed to be a struggle. Oxycodone was never supposed to be in our house. Or oxygen. Or monitors. Or feeding pumps, or medications, or nebulizers and sterilizers and needles and iv’s, and flushes and port supplies and mickey button replacements…our firstborn son was supposed to be the big brother. Be there to help his two younger brothers learn to talk and walk and run and play and ride bikes and read and sing with…

it was never supposed to be this way.

My heart feels so broken. So lost.

I wish I could hold him tighter each night as we sleep entangled in my bed…but it’s not possible. I wish I could love him more during the day and make his smile shine brighter…but I can’t fathom it any better than it is.

CF has effected every single aspect of our lives, EVERY SINGLE ONE. There is no safe place for me to go to anymore. It’s all drenched in CF. everything. everyone.

Everyone I see, is smiling and enjoying life it seems…but I can’t. I’m dyeing inside. My heart is outside of my chest in tremendous pain. coffins. plots. gravestones. memorials or funerals. open casket or closed. speakers. flowers. churches. Everyplace I go and everyone I know have been coated with CF’s horrible presence and I wish it’d just leave me alone. one day. one hour.

some people gauge miracles as a huge healing or a life spared…

my miracle is each and everyday Conner wakes up.

My miracle is a day without planning a funeral.

My miracle is seeing my children loving each other and catching it on film.

My miracle is a day for Conner free from pain…

Some random pictures of the past few days…

Really…the last picture sums up our day today…smiling in the pain…

Love to you

Field Day…

Yesterday was Conner’s Field day at his school. It was the first time he’s been there since in October. He had a great time visiting with friends and they were so nice and caring to him. It was a great day. He made it until noon time then was really wiped out so we left at lunch. I’m so glad he got to do this. This was really important for him to go, and I’m so glad that he was able to make it. Thank god for that miracle…

Here is field day in pictures…

 

Love,

Sarah

Well here it is…

It’s been finished. Brad and I met with the funeral director last night to get the arrangements made for Conner’s future services. We were treated with great respect and compassion and I felt as if God was sitting in the empty seat that was at our planning table. Because I was so calm. So peaceful. So determined. Brad and I found a beautiful resting place for our beautiful son on a quiet corner in the section entitled “Soaring Heights” which fits our Conner perfectly. For just like his CF walk tshirts say…he soars high on angels wings…only God. He has a quiet corner plot so he won’t be crowded and it’s in a beautiful area overlooking the beautiful trees and others resting there as well. It truly doesn’t feel like a cemetery in that area, to me anyway. Brad and I will be laid to rest in Connermans same plot when our time comes. We’ve already made our arrangements as well, so it will be paid for, our kids will know our wishes and not have to worry over financial concerns, and our Conner boy will not be all alone…his mommy and daddy will be right there as well…it will be perfect.

that entire corner will be ours…

 

it overlooks the areas below…

I cannot convey to you all how much we thank you for your prayers, support, and your financial help as well. I can’t imagine having these meetings without the means to pay for it all, funerals are terribly expensive. Our funeral director cut our price in a third since its a childs service. And we found an amazing woodsworker whose offered to make us a beautiful coffin for Conner, complete with our handprints on it as well as a custom painting on the side with a beautiful wood stained finish. It is breathtaking. God is so good.

Yesterday we also got an amazing gift from another church member…an edible treat for sure in Conners favorite toy theme…

Conner loves this Lego cake…and OH MY it is so delicious….it’s what we had for dinner tonight infact…so happy unbirthday to you Conner!

So Conner’s feeling ok. Having some anxiety and his breathing is worsening…but amazingly he is still smiling. He is truly remarkable. My hero for sure. He’s been using his bipap during the days as needed to help him catch his breath. He doesn’t sit up much. He says it’s too difficult to breathe sitting up. Cf sucks. His school’s field day is coming up this Wednesday and I’m going to try my best to get him there. He’s been talking about going forever now…and he hasn’t seen his school buddies since October. We’ve continued to extend his IV antibiotics since they provide comfort for him, and they’re not interfering with his life, or causing any bad side effects. I must admit I’m so glad to be done with those funeral meetings…the county coroner called me as well and gave me his personal number so that when Conner passes, we don’t have to call 911 and have firetrucks and police and ambulances arrive and cause us more stress…he will take care of it all for us. A huge blessing…truly Only God.

He promises to only give us what we can handle…and that if we take a step forward in faith for Him, that He will provide us with everything we need to accomplish His plans, his mission. Over and over he has proved to this to me. In our grief He has provided so much love and support and that makes all of this gloomy, unhappy nonsense so much easier…

blessings

watching...

Spent the better part of today watching Conner sleep. Breathing in and breathing out, just laying there exhausted by the energy requirement necessary just to breathe. trying hard to stay one step ahead of this wreched disease progression. Constantly worrying.

I'm so exhausted....

Each day blends into the next...it waxes and wanes and I feel like I'm wasting valuable time in my delirious state. But I am so tired. I wish I could waste one whole day in bed, sleeping. But I know that even then I'd never be caught up.

I just wish for peace....

I want for all of this to end. I don't want my son gone...but I need peace. I need to figure out how I'm going to handle the rest of my time here without him. I'm a planner by nature, and as much as I'm getting done and prepared for when my whole world crumbles, I feel like this is something I can't plan for.

The devestation...

The heartbreak...

The inability to breathe...

To not be able to think...

or form sentences...

or clear thoughts...

I simply can't imagine what it will be like to not be able to hold him in my arms whenever I want to. To look over at him laying on the couch next to me with his beautiful gap toothed grin, with his bright, piercing black/brown eyes...gazing at me. I just can't plan for that...so the constant worry over it, is simply overwhelming me. and exhausting me to the core...

I wish our days were filled with more...

Not sure really what that means...just something more than laying around watching him breathe or sleep...or giggle at a cartoon...I so don't want any regrets. Nor do I want to push him beyond what he's capable of. Everythings getting harder...the days are passing by faster..and my heart is breaking deeper then i ever knew possible...and i just need peace.

only sweet peace...

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.