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...

GOING HOME!!!

Today is go home day for us....and we are very excited to do so. Over this past 8 days here we've met with each CF doc individually, both social workers, the nurse coordinator, child life, the chaplain and The Bridges hospice team. We feel secure in our right now plan, I'll call it. We'll continue the IVs for a week, bring him back to clinic and then decide then what the next step will be, and so on. I don't feel we're ready to make big, concrete hospice verses hospital decisions and I feel relieved to have finally realized that we don't need to yet. That nobody expects us to. That its perfectly ok to live in each day and when things progress, just go with the flow. I like that. So we'll meet the local hospice team and see what they're all about, and keep it in our mind, I crave flexibility. I don't feel comfortable yet saying home verses hospital. We're very connected to each one, for many different reasons. But I need to know it's ok to just have these conversations and over the next few weeks or hopefully months and MONTHS we'll just make each small decision as it becomes necessary...and it wont be as daunting as making one large decision right away. The Doernbecher CF team is extraordinary. They are compassionate. They are very loving and loyal. and most of all, they are heart broken over this as well. They are extended family by every sense of the word and to just walk away from them and not have them help see us thru every aspect of CF, the dyeing as well, is just unimaginable to me. You'd never probably understand that connection unless you've walked in it, which unfortunately many of you have, and I pray that more of you don't ever. But having intense doctors help and intervention since i was 18 weeks pregnant with Conner man and now 7 years later to just walk away from it all, is beyond my capabilities. They've been our miracle. These doctors saw me thru my pregnancy, they helped drain his little bladder when he was in my tummy struggeling desperately for life, they've seen him since he was brand new in the nicu and thru 26 different admits, thru his 105 degree fevers from the Zosyn, thru his rushed make a wish, and I simply can't live without them. and i'm so glad we don't have to.
So yes we are going home today from the hospital...not because he's well, but to just keep living each day and enjoy it and find the quality in each second until there is no more. and I think it's kinda wierdly beautiful. So he'll do another week of IV's then go to clinic and decide the next week and so on. and for now, that is the most perfect plan I can imagine. get out of here, and live our lives, fill his remaining time with experiences....fulfill his every wish and condense 60 years of living into whatever time remains. Such beauty i think. I think we'll all be better for it. Facing death forces you to live in the now and do each thing you can't make it thru your life without doing. and I'm excited to see where all we go...I do know though, that first stop is a visit and meeting with his best pal Grover here in Portland within the next week...Sesame is in town for some shows and Grover can't wait to meet Conner man. And from there...let the experiences roll..........
Love
Sarah

I hate cystic fibrosis more than spiders!

My 4 year old Hunter woke my husband up the other morning, dangeling a HUGE spider in his face. uh ya GOOD MORNING!!! Luckily it was dead...oh lord I would've needed to be rushed to the ER with severe panic attacks!!! Oooh how I hate spiders...but not as much as cf. they're both poison for sure, but at least we can just kill a spider or put it outdoors...theres no rest in cf. each day getting up, lining up the meds, having no idea how your child is going to feel that day, treat, therapy, sanitize, repeat...it is endless...
This was a clinic week for C-man and it was a very different day for me, for sure. I woke up a bit frazzeled...I've been trying to get Cayston for C since our last admit a few weeks ago...and nothing has come from it and Conner just ended IV's on Friday and here it was Tuesday and he was not one bit better. tied to his oxygen tank...so the day didn't start with much hope. But arriving at clinic was all different, normal routines, normal faces weren't there, or were different...everything seemed to be off a bit and lord knows i'd know we're there so often! :) The RN asked how conner was, and i told him no better...and thus the downward spiral began...Conner was on 2L of o2 and they started checking his sats, and asking the normal questions...but the tone of their voices were different. not in any way in particular, just subtly different.
Doc came in and listened to him and watched him breathe and said he'd need more IV's of course and asked if we wanted to stay or not...ha ha...funny one doc! we chose to go home of course...and just before he was ready to get up I remebered Cayston...I told him I wanted a script for it for Conner, and once again got the runaround. now keep in mind i've been getting the run around since the day it came out fda approved. The doc said they hadn't really discussed which patients would get it, and who wouldn't, etc...and then he looked at me and said "it's not a cure, nor is it a miracle drug sarah" bam...there it is....they think i don't know what i'm talking about apparently!!! Which is crazy because they know me...they personally asked me to be on their CF family council, to speak a lecture to med students about cf, knew i was constantly researching..and yet what the heck is that supposed to mean? i told him obviously i knew it wasn't a cure...or else i would've been up their ass even faster (c'mon WHO WOULDN'T!?) I just felt deflated. Like because they are doctors and i'm "only a mom" that I don't know whats best for my son...or what i'm talking about. give me a break. i'm not new to this disease. i just hung my head and said "well until there is that miracle drug i'd like to try cayston for my son because we've tried things that arent even in the hospitals drug formulary...and they didn't work...so i'm sure Cayston, being fda approved shouldn't be hard to get!" the tone of his voice was just kinda defeated. and agreed. it sounded almost like they've already written conner off, knowing he's dyeing, but giving up on him. doc left the room to get IV's dosed out for home health to deliver and i was just fighting back tears.
i wanted cayston for my son. but not in that manner. he wrote the script already feeling like it would do nothing for my son. it may not. i absolutely know that. but how hard is it to try? can't hurt anything to try! when we left clinic doc said "ok good luck" with this voice like he had little faith it would be ok.
that was the final straw for me.
barely made it to the car before i started crying. not just a tear or two...sobbing. i didn't care that Conner saw me upset. He asked what was wrong....and I simply said...I hate that your sick and mommy can't make you all better...and i just cried. a mixture of stress, frustration, worry and exhaustion.
for the first time i thought that my son wasn't going to make it. the docs didn't believe in him...how horrible of them! their job is to heal and if not heal at least help. and how does it help to make a mother feel helpless and worthless...invalued? tuesday was just a horrible day. horrible. how dare they try to rob me of my hope. hope is all I have...don't you dare try to take it from me.
there was so many CF families that I know and love at clinic that day around the same time and it just seemed everyone had a wierd clinic visit. there are so many cfers i know right now barely hanging on...to health, to hope, to patience, to trust...it's just been horrible with those i know with cf lately. So many waiting for lungs, waiting for cayston, waiting for docs to call them back with a plan while watching their kid suffer in pain...waiting. each waiting for their miracle.
so yes...i've decided that i hate cf with a passion...and tuesday was horrible...i just can't shake that negativity..still even 2 full days later. i know docs aren't God...I know they're frustrated as well that they can't help more...but lord don't take my hope away...thats all i have left...and i cant get out of bed without it...