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


Tuesday, June 1, 2010

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.

13 comments:

  1. I'm sorry, I obviously don't know how you feel at all... but I am sorry. I wish there was a way to direct the anger and let it unleash. I hope that some day it will be released and that there will be some solace that you perhaps do not see right now. I hope you feel better if even just a bit after purging your feelings. ♥

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  2. All I can offer is a huge cyber hug and a wish that light will shine again for you and your family.

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  3. I am still reading, Sarah. I am crying, hoping, praying for peace and relief from pain. It is not enough, I know, to fix anything. But it is what I am able to offer you so I hope it gives you even the tiniest measure of comfort. Peace and hugs.

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  4. Prayers are with you. Continue to vent and rail and do whatever you need to. You have every right to feel everything you are feeling. Let it out!!!

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  5. I'm just so sorry. Anytime you need to just type away and we will be here to listen. You are right that this is something that none of us can understand but we will continue to pray for all of you.

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  6. Wow Sarah....it is so hard to even begin to know what to say....I just want to scoop you and your family up and try to make things better. I am so sorry.

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  7. Oh Sarah, there are no words. My heart aches for you and your family. We are lifting you up in prayer <3

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  8. I know I don't understand, can't understand, as I haven't even had my kids yet, but my heart goes out to you and I do lift you up in prayer.

    I heard a song that made me think of you. It's "With Hope" by Steven Curtis Chapman and is on his Speechless CD. I don't know why he wrote this song at this time (it came out almost 10 years ago I think), but he is someone who would understand the loss of a child as his six-year-old daughter died in a freak accident last year. Mark Shultz also has a song "He's My Son" on the album "Mark Shultz."

    I wish there was something I could say or do to make it all better. I wish I lived closer (I'm in Texas) so I could come by and help with housework or something, even though we've never met. All I have to offer are my prayers.

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  9. Sarah, I am praying that you continue to be strong in this difficult time. You have every right to vent, I can't begin to imagine what you're going through. Thank you for making me realize that we waste our time with unimportant things, when time is so precious... ticking by. So enjoy your time with your son, be selective as to whom you share him with and have faith!

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  10. Sarah.. I read your blog daily. I lost my father eight months ago to lung cancer and we watched him slowly die and felt the similar feelings that you are going through. Four months after my father passed away our son with born with cf. I was not strong enough, and could not take care of him and he was adopted to an amazing family who has cf experience. We get weekly updates and they suck. CF sucks and I often wish it had a face for me to punch. Your feelings are normal, I went through similar thoughts. Take advantage of help and every now and then, vent. It makes people who get upset over little things think twice. I hope you know that you are so brave and are amazing. Thank you for sharing your life with some people that you don't know.

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  11. Oh Sarah. All I know to say is that I am so sorry for your pain and that I will continue to pray for you all. Thank you for venting and sharing your feelings. It has really made me think about what is important. You are living what is important.

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  12. I'm so glad you let this out. I am continually praying, making choices that I know will honor Conner's life and spirit, and loving my own little cf'er. I will wear red tomorrow for Conner. Just wanted you to know that I'm still here, reading.

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