My arms are empty and acheing...

I can’t believe I’m a mother without…

Life has been twisted and turned upside down. As a mother, I had both the wonderful privilege of holding my sweet son as I brought him into this world…and the horrible chore of holding him as he took his last breaths and left this world, at only 7 years old. June 24, 2010 he earned his angel wings, passing away after an inspiring but brief fight against Cystic Fibrosis. Now I live, solely focusing on living a life to get to be with him again in heaven, and to raise awareness for Cystic Fibrosis research. I am dedicated to a cure, not only for my sweet sons legacy but so that other CF families never experience the greatest loss of their lives that we are now facing. My mother’s arms are missing Connerman, yet he still inspires me daily to leave a mark of LOVE on this world…so for you my sweet prince, mommy will try!



Love Love Love

Always Always Always


Wednesday, May 26, 2010

God provides....


We've been home from the hospital for a full day now. We've settled back in, got unpacked and everything washed and sat for a few minutes before dragging it all out and repacking it again! Only we are so excited that we get to! Tomorrow we're leaving for the beach trip that was so graciously provided to our family by Living Hope Church. Thursday thru Monday in a immaculate house right on the beach in Manzanita, OR. We are so blessed and so thrilled to be going. Not only are the accomodations taken care of for us, but they gave us a HUGE tote full of beach toys and sand fun, kites and bubbles galore. Our kids are more than excited for this wonderful distraction. Life has been so difficult and mundane, just going thru the day to day motions, this couldn't come at a better time. We all need a good distraction and some very quality family time together away. I had a garage sale last weekend and managed to sell enough stuff to more than take care of our food and gas needs for this trip, so that too is a huge blessing. We're taking Conners pain meds and his IV antibiotics along with his other daily medications oh yes and plenty of oxygen to get us thru this trip very comfortably. Much like Conner mans make a wish in january to hawaii, this is giving our family something to look forward to, instead of the everyday lull of watching him struggle. I know many are reading this from Living hope church and my heart just needs to tell you thank you so much. For blessing our family in the time of the greatest need. For praying for us. For loving us. Our cameras are charged and ready to shoot a million pictures and at least 3 hours worth of dvd's...nothing matters more than family.
Last night Brad and I met with the local hospice, and we still decided its not for us. For some it's great, but their limitations don't fit with our therapies for Conner. But they are extroidinary people there, and since our home health nurse is in that same office they'll just tailor to our needs as far as the bereavement groups and counseling, and keeping his pain under control all while having the flexibility of doing home iv's or even a trip to doernbecher if we so chose. we really feel so glad to have that meeting done, and our minds made up for now. We'll reevaluate as things change, but for now we're good. and that is very comforting.
Brad has taken all of this week off so he can spend time with us as a family and to try to manage the stress and grief he's going thru at this time. like me, it comes and it goes, and some days are great and others it is a fight to even get out of bed. so please pray for him that this weekend can help him to feel refreshed. Usually I'm worried about our finances if he misses work because we're a single income family, but more than ever, and more surely than I've ever felt or said before...

God provides.
He proved that to us without a doubt. He provides.
I pray you each enjoy your families for this memorial holiday weekend, and while we take time to remember those who've served for our country and to protect our freedoms...first and foremost take time to simply enjoy being alive. for family. for friends. and most of all, for God.
Love

Sunday, May 23, 2010

a fund has been established...

well...i've been asked a few times to post this on here so as to maximize the donations. this is so very heartbreaking and morbid.
a fund has been started for Conners funeral expenses.
I did not start it.
Another cf mama did that for us, and I have to say that it has lifted an extreme amount of pressure and stress from my husbands and i's shoulders. Last week I started the agonizing process of calling funeral homes and talking costs and options etc and I hung up the phone so discouraged.
here we have been shelling out money for CF expenses for the past 7 years, and a high risk pregnancy for Conner to boot. Money is an issue for us as well from SSI limitations etc. So to know that at least part of the funeral can be covered w/o having to charge up credit cards has lifted a burden. I will post it on this post and add it to my site here as well...no pressure....only gratitude...



we are in the hospital right now, just got in a few hours ago. Conner man is having excruciating pain in his back. We are here to get a head start on pain control with morphine to transfer care home to ourselves or hospice...
we are waiting for xray now, they're going to make sure he doesn't have any stress fractures as well as run urine to rule out the possibility of the kidney stones....
i'm prayerfully hoping that we can make our beach vacation trip from the church this weekend...the goal with the doc is to get in, get his pain under control and go home. so i'll keep you updated....

Thursday, May 20, 2010

don't stop talking to us....

this is a wierd topic...but i feel it's an important one. and this is not just about me or my husband, but any grieving family...because once upon a time, i was on your side of the fence not knowing what to do or what to say...but now i feel i can help you all understand a bit from my new side of the fence...
(once again..not about me...about every grieving family)

please don't ignore us.
don't not talk to us simply cus you don't know what to say.
saying nothing adds to our pain.
because ignoring us makes us feel isolated and neglected and unloved.
it really hurts.
the dumbest question to ask is "how are you doing?" or "how are you feeling?" because the answer is obvious...and it kinda seems like you just want to hear "ok" you don't really genuinely want to know about us...
instead a better question is "how is today"
don't say "let me know how i can help" or "can i help" just find something no matter how small and do it. because if others are anything like me...asking for help is a very hard, learned process and i'll always say "i'm fine" even though like today i'm drowning...
the best way to describe it is that we're not really sure how people best like to help, so when someone says can i help you...you're unsure if they mean cook a meal, mow the lawn, watch the other kids etc...so just offer what you'd like to help...because we want the help but are not sure what you want to do to help....
men are mr. fix it's by nature...and when they can't fix something like a child dyeing they walk away. and thats a huge slap to the face. we don't expect you to fix it. because lord knows we've already tried to. we just need the bond to remain open.
it's perfectly ok to not talk about the situation sometimes...infact a welcomed distraction is great, laughter goes a long way...but don't, not talk about it at all like it's the elephant in the room.
if you don't know what to say simply say that...because honestly...we dont know what to say either. this is all new to us as well...
but by not saying anything, we interprit that as not caring.
and that adds to our pain.
losing a child or husband or whatever the circumstance is painful enough, but add to it losing what you thought was a close friend, thats just fuel to the fire.
one of my dear friends has been reading books about grieving to help us thru what we're facing and i thought that was a great idea! i wished i had thought of that before...so if you are genuine then maybe find a good book targeted at grief and loss and read up...it'll explain best just how we as grievers are feeling and give you good ideas of topics to talk to us about.

so anyway...the only reason i'm writing this is because i wished i had this information before in my past relationships that suffered loss...not because anyone is making me upset or anything..
love
sarah

Wednesday, May 19, 2010

9 years ago today....

I married my bestfriend Brad Jones at 2pm in the afternoon on a beautiful sunny day in Olympia, WA....Today I focus on our love and not on our circumstances. This reality has thrown us closer together...and for that I'm very greatful and blessed. Yes we are both grieving, and both in very different ways and at very different times...but we have managed to keep our foundation solid despite it all...not perfectly...but enough for us each to get thru this horrible circumstance.
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I'm so greatful to him for everything he has done and continues to do for our family. The sacrifices he makes for us on a daily basis. The job that provides our family with food and a roof over our heads and dinner on the table, the cuddles that he gives that makes us all smile, the love he has for his 3 sons who look just like him, the gratititude he shows me for the work I do at home with our kids and im just greatful that despite my craziness he has never wanted or threatened to leave my side...
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and i love him now more than i ever thought i could...and far more than I did when we got married. Because as you married folks know...the beginning love is what pulls you together, but the tested and enduring love is what lasts a lifetime...
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Happy 9 years together Brad, i love you and I can't wait to have date night dinner with you tonight...
Love
Sarah

Monday, May 17, 2010

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.

Sunday, May 16, 2010

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.
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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.
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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...
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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....

Thursday, May 13, 2010

pain by any other name wouldn't be as sweet...

So enough has been enough.
i feel like i am swimming in this huge pool and can't find my way out of it....but the pools not filled with water...it's filled with my tears. my heartache. i'm just broken. i've never been one to wear all of my emotions on my sleeves, not that i was too proud or embarrassed to but simply because I still have 3 children who come with lots of responsibilities, projects, dressing changes, diapers, groceries and house cleaning to boot. Never really had time to wallow. But well i guess i don't feel i'm wallowing. maybe thats not the right word.
grieving.
I hate that word. it means so many, many things. and at so many different times as well. my grieving sometimes is laughter and smiles cherishing the moments i'm engrainging in my memory to remain there all my life with bittersweetness in those moments...and sometimes i'm just tripping on my bottom lip. i literally can't pull it up to where it should be. my smile has really faded. my heartache has nearly multiplied by a thousand. my days it seems now pass by so much quicker because Im so aware of each and every second passing by. Time is running out. but my love isn't. i feel now more than ever that i truly know what it is to love my children and to love my husband. i KNOW it now. not just that giddy feeling you get, or the instant love you feel when you first hold your precious newborn in your arms...but the deepest love you can ever imagine, but that you can never imagine until you're watching it slip away. faced with death, you really learn to love. fully. wholly. unconditionally. deeply. selflessly. painfully.
i simply haven't been able to write lately. since mothers day i've been struggeling. i'm just not me right now..only i am me. a new and different, grieving me. a me, i don't really like. and i don't blame others if they don't really like me right now either. i'm lonely. desperate. hopeful. wishful. exhausted. my mind is a wanderer lately. i hate this too. sometimes i sit in some line or in some crowd and i witness people being so rude, probably unintentionally...and sometimes i wish so much i could just scream...others have no clue what crosses you bear. if you didn't know my story, and you saw me, you'd see a somewhat put together woman, with a smile on my face and a joy and love in my heart...but you wouldn't have time to stop and see the agony in my eyes. going thru this has taught me so much. so so much. i will simply never be the same. and i hope for that in a good way. because this pain is so deeply intense, and everlasting as it may be, i know these lessons i'm learning as invaluable. and that i wouldn't have forced myself to learn them any other way. the greatest lessons from the greatest pains...makes perfect sense. cus now i get it. i just wish i could learn these lessons another way. any other way.
i've called to have the hospice team come over and give me their list of can and cannots...
that was an extremely difficult call to make.
but i think necessary.
my arms just ache to hold conner all day and all night. but i simply cant. i have come to need much time to myself. me and my ipod walking the beautiful lake here in town just allowing myself a breath of fresh air. i'm investing in my children who will be survivors. i'm trying desperately not to let the stress of all of this put a wedge in my marriage.
i'm simply doing the best that i can.
thats all we can do.
i think josh's message yesterday on whats inspiring really hit home to me. what i'm doing is not inspiring. at least not to me. but what is happening THRU my pain is inspiring....
well i'm off for now, a beautiful day here and conners calling for me to help build legos...
until next time...

Sunday, May 9, 2010

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.

Friday, May 7, 2010

Steps of determination and love...


Wow...I was just looking at my sons feet in his hospital bed this morning and marveling at just how big they have gotten lately. How quickly life is flying by...how fast he is growing up. Then I started looking at my feet.
The feet of a mother.
So completely different. My feet walk with a much different purpose then my sons. They walk to my children when they call my name. They walk around the grocery store picking out food to nourish my family. They walk to stay in shape. So different then why his feet walk. His feet walk for joy. For fun. They walk to collect candy on a Halloween evening. They walk to hug and kiss their families. They walk solely to live. To be present where there hearts are drawn to at that exact moment in time.
As a mom my feet walk with a very determined purpose. To heal. To love. To cherish. They walk to give hope for a future without cystic fibrosis. They live to carry me from each space where I can share my sons struggle and bring awareness to the most common genetic disease in the us. They walk with a purpose. They don't take much time off. They don't get put up to rest as much as they should. But they are what keeps me going. They carry me to my purpose. and tomorrow they will carry me thru 3 miles in hopes that others won't have to take those same steps with their loved ones. They walk for a cure. Tomorrow they walk for cystic fibrosis. The most powerful 15,000 steps they take each year.
The steps that mean more than anything in my life.
They walk for my son.
For your son. Your daughter. You.
They walk for 29,999 others...most of which are strangers my feet will never step close to.
But still so important to them. To me.
So tomorrow at 10am these feet will resume their purpose. Their determination . Their mission. Their dream. Their greatest hope. Their greatest fear.
Join us.
To everyone they're just feet....something to be covered with socks and given the occasional coat of nail polish. but to me...they're my greatest asset and my greatest treasure. because they carry me to just where I want to be. 3 miles of pure adreneline and pure bliss. And then they will carry me to my bed tomorrow night to rest my head, relaxing and knowing that with each step I took one of your kiddos, or you yourself were in my thoughts. Pictures of them floating in my head. Praying that maybe this is the last year I'll have to take those steps, but fully prepared to do it again next year and the next year if need be. They walk for your pain. They walk for my pain.
They walk for you...

Thursday, May 6, 2010

Shelter from the storm...


I've been reading a book called Shelter from the Storm that was given to me on our last admit by The Bridges team here at the hospital. It is a book for parents with children facing life threatening illnesses written by two palliative care nurses whove walked the walk with their own children...one who lived and one who passed away. Not CF specific...but about cancer, CF, and neurologic disorders...even talks about those paralyzed by car crashes etc. It is a good book that I highly recommend. I'm almost thru with it now and I feel I'll probably wind up reading it over and over again it is full with so much good information and recources. and the best part is, it's not just for kiddos who are almost ready to die, it is advice from the moment of diagnosis and then walking you thru all the hard parts and decision making processes. An invaluable asset to me, to us all I believe.

I've been elbow deep in going thru all of the faces of CF photos you've been emailing me. and i was just moved to tears today. this is going to be powerful. i get so wrapped up in conners care and his disease process that sometimes its easy to forget just how many other ones are fighting this too. and seeing all of these beautiful, smiling faces is simply overwhelming. it just can't be ignored. I've only just begun with them, I have many more to go thru and it isnt too late to email me a pic of your cf warrior to connersfightagainstcf@hotmail.com and put the name and age. i've even gotten pictures of those warriors who are now breathing easy in the sky...and that is just as important and powerful...so send those as well! and again, i'm humbeled you are allowing me a glimpse into your kiddos (or your) life...such beauty in it.

We are going home from the hospital tomorrow (friday!) on iv's. we've got them all switched up so it's time to jaunt out of here to be with my house of boys! and saturday is our GS walk for CF (wear red for conner!) and then of course mothers day...it'll be so nice to be home. i can't wait. each time i'm away from my boys i come home and i swear they've grown a foot...i hate that i miss out on so much of their lives right now. mommy guilt is so easy to creep up on me if i'm not careful to keep it in check.

Going thru this all is just so surreal. it is an everyday mourning. each day i have to wake up and remember it all and allow it to become real again. i don't spend much time dwelling in it but there are times that i'm fine...enjoying life and the day and then out of the blue i'll look at him and really remember it all. which is both painful and a great reminder of how precious time is. in that respect i do feel i'm lucky. i get to live in the day and not in the future. and many others dont....simply because they have never needed to. but it's just a different feeling. sometimes my mind blocks out the pain, i'm kinda numb to it, and i think we're just here for ivs like normal and then we'll go home and it'll all be fine....but then i have to remember our new reality is thats just not true anymore. it's all changed so quickly. and sometimes i get so jealous and so irritated that i don't get more time. that i feel like i wished so much that i did more in the 7 years he's had so far. that we've done more, loved more, lived more, laughed more, played more, prayed more, enjoyed more, smiled more, cried more, screamed more, painted more, hugged more, and kissed more. it's a very strange feeling, feeling now that i'm trying to cram 60 years of living into this very shortened existance. it's not fair. i wish that i knew years ago how to truly appreciate the healthiest years he had. i always considered them better, luckier times...but now looking back i really wished i had known then how to live. and how to be fully present in the moment. because now i feel rushed in each second to make the most of it. each and every single breath a gift, not just for those with cf but for all of us. and i simply am glad that maybe you will hear this and get to make that choice to learn how to truly live and not just go thru the motions. get out of bed, go to work, eat lunch, come home, eat dinner, kiss your kids then go to bed to start it all over again. but really live in it. those summers when conner was feeling good, heck even last summer when he didn't have to be tethered to ivs, sat monitors and o2 tanks i wished that i really lived in each day. because truth is i didn't. we don't. it's not how we're made to live. it's a learned behavior. so i guess in my small way thats my gift to you. there is no better gift then time and memories. so do what i wish each second that i could've, should've done...just live. really live. cus things change in the blink of an eye...and i'd hate for you too, to have these lessons learned a little too late...leaving you feeling like you need to play catch up...because thats no way to live. i am however so thankful that now i have learned that lesson and we're living in it each day...but don't wait til you or your child is too sick to really learn this lesson...start it today. i'm jealous that you will get to do that. to have the opportunity to do what i could only now wish i would have. so be thankful. and be joyful. and love. and really...just live

Wednesday, May 5, 2010

we're all made for more than we can see....

Hello.
It is Wednesday, Bingo day at hotel de-Doernbecher and it's on! Word got out that Conner man the bingo champ was back and so we've been challenged by many CF'ers to a duel! The bingo card has been delivered, we requested the winning card of course, and I feel we got it, because they handed us his card and a RED marker to use...so hello...red means we'll be victorious! Then it'll be school and then Kim in child life will be in to play. A fun day for sure.
We saw Dr MacDonald today, the oncall CF doc for this week and I told him we'd like to hopefully go home on IV's Friday since it's walk weekend AND mothers day (don't forget that!) and so as long as he responds well to his IV changes we'll plan on going home Friday. Good times. It's nice that they trust us enough to care for Conner man at home. I know they don't let everyone go home with IV's because some people aren't complient...so it's a big compliment when the docs let a CF family do that. a nice boost of confidence. and we all know CF parents need nothing more than encouragment and compliments on a job well done for what we get accomplished each day. So I appreciated that today. It's the little things that count.
My heart is pretty broken today. Im feeling pretty overwhelmed and fragile...so any prayers would be greatly appreciated. It's hard not to feel defeated and unappreciated sometimes in this fight. I'd like to also ask that you keep my husband Brad in your prayers as well as he could use all the support you can muster. This is a more difficult time in our lives then what shows. Brave faces become the "norm" and almost more important than the words that we do say, are the ones we don't have the heart to say. Unspoken words, unspoken feelings easily bring us down and make each day difficult. Our prayers as well, go out to each of you, for God giving us your amazing friendship and strength, His plans are to prosper us and not to harm or hurt us and seeing our despair it's easy to overlook the amazing blessing God is giving us in you each day. So thank you once again. I can never say it enough. We inspire you and you keep us afloat. Even a person who doesn't know of the Good News can plainly see God thru all of this pain. I received an email yesterday that put it all in perspective for me...it said "I found you from a friend. Your story caused me to pray. Pray for the first time in so many years."
isn't that amazing. It's not me. It's not Brad, nor Conner, nor Hunter and Bradyn...
It's ONLY GOD...
and it's simply beautiful
happy cinco de mayo to all of you...have a margarita for me... ;)


Tuesday, May 4, 2010

Hotel de-Doernbecher needs no prior reservations...

Here we are again.
Tuesday.
CF clinic day.
The day we were due to end weeks and weeks of IV's....
The day we were supposed to come to clinic and then promptly return home...
ah...many are the plans in our hearts right? You would think by now...heck I would think by now that I would've learned that our plans mean nothing to Gods plans...so to stop making such plans. I think I'll get there one day...but it's not a mommy's nature to not plan. A momma with kids thrives on plans and arrangements...right?! So ya to not make plans...we'll see how that goes. But either way we made to to clinic and conner just didn't feel well. I gave him the choice if he wanted to be admitted or try to change IV's up at home...he chose to stay here. So we drove the hour home, packed and drove back here...phew lots of driving.
But more than learning to live w/o so many plans I'd say my greatest lesson in today is that words are so very profound and powerful. They have the capability of lifting you up, or cutting you down. You never truly know what anyone around you is going thru, you can't see thru the smiles on their faces into the despair they carry in their hearts, or know where they're going or what they're doing. I was cut off by some luny driver and i was already going about 10 miles over the speedlimit cus i wanted to get back here so I didn't run out of o2...and this guy as he was passing me flipped me off and mouthed some word that shouldn't be spoken...and rather than get mad at him, i felt sorry for him. shame on him. you know, on the freeway everyones driving with such a purpose and you have no clue what that purpose is...maybe its driving home or to visit friends or family, but you know what...? Everyday there are people on the road who are barely hanging on...who are rushing their kids to the hospital knowing full well that each admit growing closer and closer together can only mean one thing...and how dare people treat complete strangers as if they don't matter? as if their purpose for driving was more important then theres. He may have been on his way to a meeting, or home, or to a hospital as well, but he has no excuse for doing that, shame on him. So I guess it taught me a lesson today...about words and their power. CF is a horrible disease, but words can destroy you faster than any disease ever can....so chose your words and actions wisely...especially to strangers... cus you may be driving to some happy destination...but the person your flipping off may be headed into a desperate situation, clinging to sanity and needing loving support....
so we're here.
ya for that.
chat soon.
and chose your words carefully

Monday, May 3, 2010

a new week...a new hope


Gosh it's been awhile, I kept getting online to update and then something kept me from doing it. it's been kinda crazy here, with meetings, cf parents night out, appointments, bipap and iv's and plain ol living life. So now I have a second to let you all know things are going ok. not great, not horrible. thats all i can ask for these days i guess. Conner's been receiving lots of your mail and postcards and he LOVES it! thank you all so much for your generosity. I've gotten a map so I can start marking on it where you all live, everyone who loves and supports him. That will be great for him I believe. He always asks me if certain people who write to him are "in this world" so I think he'd really enjoy the map. As always your continued love, kindness and support are whats getting us thru this whole time.

Parents night out was a blast, lots of our cf parent buddies there for a nice dinner complete with wine (and I don't even like wine but this was yummy!)

Our GS walk is this coming saturday and our team is huge! We have I believe 6 teams nationwide this year and a few have already taken their steps for the cure! thank you for those who have, and to those who yet to as well. WE're knee deep in fundraising now our team is already over $4000 in donations and thats only online, not the checks and cash yet, so that I'm very glad for, and thats just our vancouver walk, not the other walk sites. Next up is the poker tournament my buddy Ryan's putting on (he's 31 with CF), another local CF walk, then our golf tournament for CF....busy time...but it's well worth it.

I'm sure you all know that last week we lost more precious lives to CF, I know we continue to lose people each day to this disease but that's the hardest part of reaching out and meeting the cf community. you make yourself vulnerable to pain. I would like to express my greatest sympathies to the families of Sam, Sonia and Emily...may they finally breathe easy and may you find the strength to keep fighting. Blessings to you.

Conner's due to end IV's tomorrow and we're going to clinic in the am to discuss if we want a short break, which would be great or if we want to keep going. Conner's continuing to struggle to breathe he's tied to his 02, last night at dinner he was on his o2 and still struggled and asked if his bipap would help him breathe easier...the sweetheart. This whole experience has been so difficult at times, and yet quite normal another moment. But its so heartbreaking. breathing shouldn't be something one has to work for, its a natural reflex, involuntary even, yet why is it that he has to consciously think about doing it...uhg. so my hope i guess for this week is for his comfort. whether thats on or off iv's...i just want him to breathe easy...
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