OutRunning CF…

 

Its so nice to feel loved.

To feel supported in something so dear to our hearts. I love how God brings people together for a very important cause to our family. To destroy Cystic Fibrosis. A year ago, I couldn’t have imagined the variety of people who were there with us today, and who wouldn’t be there any longer. it worked out perfectly. we gathered at the lake at 2pm to do a 5k in honor of our sweet son who lost his battle 9 months ago…Conner

 

my heart was heavy, as were my legs, as I ran, alternating running partners between Erin and Brandon…

 

and Amy…

 

this time a year ago, we were in the hospital for another CF IV cleanout treatment, we were talking with hospice and trying to figure out what is best for our child so he could die peacefully…something I will never be able to put into words, nor would I ever wish that upon anyone. finding the strength as a parent to sit in those meetings, constantly with a HUGE lump in my throat, and trying to be strong for Conner, and to honor his fight, and help him to pass into heaven in comfort and free from pain.

a year ago we were planning his last birthday on this earth. and now we can’t decide what to do for his first birthday as an angel…away from us. I truly hate this disease. it’s killed the dreams of so many innocent families, it’s robbed so many moms of their babies, so many fathers of their firstborn sons, causes excruciating pain that cannot be put into words…

it took a HUGE bite out of me, chewed me up, and spit me out in pieces…tiny pieces, that I still after 9 months cannot figure out how to put back together again. I’m numb. I walk around wounded. a very heavy chest. a tear threatening to fall almost constantly, and I do release it every once in awhile…but I know that truly once I start, I may never again stop. my heart hurts. I’m incomplete…

so, today, it was my HONOR to run for you families still in this fight. for you adults living the day to day grind, you parents fighting with insurance companies and sterilizing and going insane over sputum cultures. I run in honor of all the pregnant moms-to-be who will have a child diagnosed with the leading cause of death in children of any genetic disease, I run for the afraid, those on ventilators, those waiting for transplants, those families sitting right now holding their CF warriors hands, for the parents starting “those” discussions, those in hospice, those who are thriving, those who refuse to quit living…and so tonight my feet ache, but it’s a good ache.

a worthwhile ache.

today I out ran cf with all my might…

so that tonight I can rest my head knowing that someday we won’t need to outrun it any longer…

 

With Love & Broken Hearts,

can I do it…I dunno yet…

my emotions are out of control lately, grief has washed over every part of my body and it refuses to let its grip loosen on me. I don’t know most days if I’m coming or going, if I’m helping or hindering, if I’m being a good mom to my two living sons or causing more harm then good, if I’m healing or tearing open the wound again…over and over and over. if you were to ask me when Conner passed if I could imagine such intense emotions and feelings I could never have fathomed this. never. I thought I had an idea in the beginning how this was gonna go, and play out. the pain was stabbing and sharp initially. it was all consuming and molding me into someone I never knew before. I embraced the process. I thought that it was all beginning to make sense and I was beginning to find balance. I thought, I thought, I thought…

truly…I had no idea what was to come.

while I no longer awake with a huge gaping wound, and while I no longer waking up hoping and praying that it was just a bad nightmare, though I’ve taken a step forward from all of that…man oh man I’d give anything for those emotions back again. not this. not what is the new normal. I cant hardly tell if this is normal or if I’m going insane from grief. I can’t find anyone who just gets it…to be honest with me…to tell me that infact I’m not losing my mind…because none of my friends know. they haven’t gone thru it themselves, so they’re along for the ride with me and I’m sure secretly praying that I’m ok. but I don’t feel ok.

nothing about me or this or any of it feels ok. I feel as though every nerve ending in my entire body is tingling and on the surface, even a touch sends me over the top. memories of whats transpired this past year push me far to the brink. I’m deep in despair…and I feel as though I’m a walking wounded…with my wound fully exposed to the world because I have to heal from the inside out. there is no scab. no magic bandaid. I’m fully raw and exposed. I cry. I wake up in the night with tears in my eyes. I’m tired of pity. I don’t want it, nor do I deserve it. it hinders, not helps. I’m sorry too. I’m sorry for all of this. I’m sorry this is my journey…that my son had to die. that I’d have to struggle more almost a year later than I ever could have imagined 8 months ago.

everythings a countdown. its march…this sunday I’m doing a race for his hospital, our home away from home, Doernbecher Childrens hospital. we just received an invitation from Doernbecher to a special ceremony honoring those Doernbecher hero’s who lost their battles in the last year. conner still gets mail from Lego that shows up and pushes me over the edge. I find myself getting upset when I see red now…because I don’t want red. I don’t want a stupid red lego. I don’t want any of this.

I want my son.

alive.

I want the pain to end. I want the nightmare to stop. I want to wake up and have found a way to learn these lessons and to allow God to mold me into who He’s designed me to be, but…WITH MY SON STILL HERE….

I can’t handle it all. spring used to be my favorite time of year…sunshine and flowers coming out and blooming signaling that life carries on into another season…I’m sure I’ll love it all again…but my mind wanders to a year ago. we were planning Conners last birthday on this earth. we were ordering Hawaiian Leis and palm trees…plans were being made with the Fire Department to deliver him his very own birthday cake. red balloons, love from family and friends, and a few that turned out to not be friends at all…people just along for the ride…it’s been a year almost. A year ago I was preparing my speech for the annual Chefs Dinner for CF, getting ready to talk about how my son is dyeing and how badly a cure is needed…and now…it doesn’t matter anymore for us. it’s over. done.

I’m tired of seeing nothing but old pictures of Conner. never any new ones anymore….cus he’s not here to take new ones. I have lots of new pictures of B and Hunter growing and getting so much bigger than a year ago…but I’ve seen every picture of Conner…I carry them engraved in my memory and forever in my heart. but he’s not getting bigger. he’s not taking new pictures. time keeps passing…we keep moving ahead…and he’s never going to. and as a mom, guys that’s devestating. that’s more difficult then I can put into words.

registering Hunter last night for Kindergarten and trying to keep reminding him that it’s Hunters Kindergarten each time he says its Conner’s. seeing some of Conners friends and how big they are now…almost done with 2nd grade…its almost too much to put into words.

he’s gone…

can I possibly keep up with all of this emotion and still function a bit normally? I don’t know. I’m trying, but I don’t know how well it’s working.

can I run this race on Sunday for our beloved hospital and make it thru without becoming overwhelmed with emotion? can I possibly Outrun CF the next Sunday with some of my best girlfriends…can I walk for Great Strides towards a cure for the very disease that is causing me so much pain? Can I Rock and Roll my way to the finish line of a half marathon coming up in June that takes place the very day after my sons “death-a-versary?” can I ….

I just don’t know.

because anymore…I can barely make it thru a day without tears and pain. living in the full knowledge and understanding that Conner’s time was done here, but mines NOT… for whatever reasons God has planned and in store for me, I’m still here…barely breathing…but here. and all this pain has a purpose and is part of this plan. but man on days like today I just don’t know how much more I can take…

I just don’t know…

 

chefs dinner, last year I had a reason to still smile…

LOVE LOVE LOVE