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


Thursday, July 1, 2010

a week…

One week ago…

wow.

one whole week already.

exactly one week ago this moment I was laying in bed with my angel baby, Conner, dyeing of lung disease. One week ago my friends and pastors were in my house sending up prayers and giving us unconditional love. one week ago my friend Sonja was mixing morphine and lorazapam for my angel, so that his last breaths this side of heaven were pain free.

i remember it as if it were yesterday.

an entire week ago.

it’s now starting to sink in.

the shock is wearing off.

i’m a mess. an absolute wreck. this past week has been simply details. planning. sleeping a bit, eating even less and simply breathing. yesterday it was done.

and today….

i’ve learned of beautiful tributes to my son all over, and my heart is full of love. so intimate these lessons i’m now learning. i’ve never been a very good sharer…but with Conner it wasnt ever an option. his smile, his warmth, his passion and determination…it was beyond this world. i always knew that. wow that he chose me. wow that god trusted such an amazing soul to me. simply amazing.

i spent my day in line to buy 20 copies of today’s paper with conners tribute article in it. i went to starbucks where i burst into tears over a woman wearing a red shirt drinking her coffee. my heart flooded the countertops at the social security office as i took care of the business of his passing. i walked into target to purchase more sweats so the laundry piles could be allowed to pile up when the quiet comes and my stomach nearly made me vomit. i went to see Conner at his place, well our place when i get there to join him…and i felt still. i went to the bank to add a friend to our accounts because i’m in no condition to add 2 and 2 together. good thing too because i only had $9 in there! the lady asked if i was doing this because we were going out of town…my heart said i wish…but my mouth said simply “no my son passed away and my brain is done for now…” we cried together…complete stranger, unsuspecting bank teller and grieving mother.

a week ago.

my grief is so overwhelming.

really, truly a week without holding him. without kissing his warm, breathing lips. a week without seeing the rise and fall of his beautifully skinny chest. a week without endless treatments. a week without special feedings, morphine, nebulizers, vest therapies…a week without having to call the cf clinic. oh my god it’s been a week.

7 days…

7 days without my 7 year old. oh my god…

hunter is taking this so hard. he’s balling unconsolably. his pain is so intense and so heartbreaking. how in the hell can a grieving mom even attempt to console a grieving child. a grieving brother. a best friend? “brudder hunter….”

i’m snappy with brad. i’m in a fog. a daze. i want space, but i don’t want anyone to leave. i crave quiet but nothing right now scares me more than quietness. my thoughts are overwhelming.

conners friends are struggeling now. and that breaks my soul. as an adult we get it. we know it hurts immensely but that one day it will get easier (this is what i’ve heard so far i don’t believe it!) but kids live in the now. they don’t know how to cope. and that is killing my heart.

conner is in my dreams each night, he’s in my mind all day long, and he’s talking to me constantly. but its such a tease. it’ll never suffice. he’s free. broken every chain that held him down…but now i’m left to pick up the pieces. i’m left to figure out tomorrow…and the next day…and the next. and i don’t know how to. i really don’t want to. the quietness is coming so quickly. i pray my children and husband can forgive me for whats to come. my world, my each and every day revolved around conner. his care, his med refills, calls to the doctors, insurance, pharmacies, daily online research, med after med after med, cleaning the nebs etc…they’ve stayed home while i took conner to the hospital or to clinic visits. when this quiet comes, how will i cope? how will i fill my time in a way thats worthy of it? those precious hours spent administering meds and life prolonging therapies was time fighting that damn disease…and now nothing seems worthy to fill that precious space.

my fight against this disease never seemed real until now. when you’re in the fight, with your kids or with yourself it seems like you’re fighting. but i tell you the truth…not until you’ve lost it will you ever truly know what it means to fight. your precious children, your precious parents, your precious bestfriends, your precious breaths my friends…i’m fighting so much harder now. truer. until my dyeing breath, oh that sweet last breath away from my angel baby, i will dedicate every free second of my life truly fighting this monster. raising awareness. raising funds. passing bills. talking to my senators and representatives. calling news media, writing a book my friends…WHATEVER IT TAKES!!!!! i will not end. until i end. and even then….

one short week ago. cf stole my conner reed. my angel. my fighter. my champion. my firstborn child. my light. my love. my hope. my determination. my everything…

god…

looking at the clock in just over 30 minutes from now one short but LONG week ago my son took his last breath. one week ago brad and i were holding him close in our bed trying to talk him into leaving this world. he kept stopping breathing, then a minute later would gasp and again continue to breathe. such a generous boy, didnt want to hurt us. but we kept telling him to leave. we kept telling him jesus was there waiting for him. we kept telling him we’d be ok without him…one week ago.

so far away from where you are. these miles have torn us worlds apart, and i miss you….”

so far away from where you are. i’m standing underneath the stars…and i wish you were here….”

i miss the years that were erased…i miss the way the sunshine would light up your face…

i miss all the little things….i never thought that they’d mean everything to me…. ya i miss you….and i wish you were here….”  (lifehouse…from where you are)

i better go. i can’t be on here writing when his one week “anniversary” arrives…

oh conner angel…i wish you were here…but i know now that CF stands for CONNERS FLIGHT… love you.

love love love

 

16 comments:

  1. Im so sorry that a week has past without your sweet Connor. It will get better I promises. The days will get shorter as they go on. Next time you turn around it will be a month, then a year. Your other children they will grieve, but it will get easier for then as it will you.

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  2. I know your heart is breaking, mine bleeds so much for you just reading your words. You have a real gift with words, you write so very beautifully, with raw passion, emotion, love - a mothers love. There are so many of us that have the priveledge of reading your messages that could never hope to put our feelings down on paper through such profound love, the words just could never be found, they have to be the right words - something you manage to do - you have a gift. One day, when the pain is a little less, by Gods grace, when you are feeling strong enough, with Gods help, maybe you could commit this most beautiful and love filled life of Connor to paper for all to share.
    Maybe I step too far, I apologise, its just that I have been so deeply affected by your wee boy, your family and the love you shared, I almost feel I need a little something of it where ever I go now. You have such a gift, you are a voice for many more of us that are at a loss as to how to explain our own selves and how we feel.
    My love goes out to you all, Connor will never be forgotten in this wee corner of Scotland - I never knew him but through you I feel I did. Thankyou so much for sharing your life and love.

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  3. Sarah, I have no words. I have never been where you are, and hope I never have to be.

    I just want to let you know how much we are all thinking about you and your family here in Scotland. We all wore red. We hope our love is reaching you, Brad and the boys.

    How beautiful that Conner can breathe again.

    Love to you xx

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  4. From my own experience Sarah, there are no words that are going to take this pain away from you right now. It's always been said that time is a great healer but for me that just is not so. Time never heals it just makes this journey of grief a little easier to bear throughout the years to come. The best advice I can give your right now Sarah, is to reach out to others that have also lost their children to this horrid disease. This is what helped me tremendously, knowing that I am not alone.

    It has now been 5 years for me since I lost my dear son and although he was that much older than your dear Connor, a mothers love doesn't differentiate when it comes to age.

    Someone advised me to write, write and write as much as I could possibly remember about my son. A little scar, his favourite colours, the funniest moments, etc. etc. I am so glad that I took this advice for when I read this list it does bring a tear to my eye and a smile on my face.

    With your talent for writing and your love of photography Sarah, I'm sure you will find many projects throughout the years to come to honor dear Connorman.

    Take once day at a time Sarah, that's all you can do right now and remember some people only dream of angels you now have your very own special angel watching over you and your family.

    Sandy
    (((hugs)))

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  5. A man looses his wife he is a widower, a child looses his parent he is an orphan, but if a mother looses her child there is no word to describe it thats because it is the worst feeling in the world. I too know exactly how you feel, and I know there are no words to console u. No, it doesnt get easier, u do find a new way of life. I have two other children, and all three are a year apart. They were so close, best friends. Kaylee is my oldest, my firstborn and she lost her battle to this horrible disease a lil over 2 years ago. Unlike u, i still have the machines, all of them. You see, my youngest who is now 11, the same age Kaylee was when she passed away, she also has cystic fibrosis. To hear u say u are going to continue fighting for a cure, makes my heart so full. THANK YOU so much. I know that its unbearable for u rite now, but as time passes u will learn to live. I have followed this blog off and on, never posted, but i can tell u r a terrific mom and i know u always will be.
    When reading Conners final day, i thought i was reliving Kaylee's. It was so much alike. If u get a chance I would like to introduce u to my angel, Kaylee Brook Maze, www.caringbridge.org/visit/kayleemaze
    One thing that did help me, she luved to draw cuz she didnt have much energy for anything else, so, each sunrise and each beautiful sunset, i think of as a picture she painted me. I will continue to keep u in my prayers, also if u have facebook, look me up, Sandra Kegley Maze. Talkin to people who understand you, does help. Much luv ur way, Sandi

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  6. I am keeping you in my heart and in my prayers as you and your family go through this difficult time of adjustment. Just know that God is taking each of you by the hand and leading you thru this time. Don't be afraid of the quiet - it's when God talks to us in the best way - and He will place on your heart the comfort and peace that you so desperately need right now. Stay strong, Sarah. Your words continue to be an inspiration to those of us whose lives are touched by CF. Peace and love to all of you!
    Sheryl

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  7. My thoughts and prayers are with you, even if we've never met. My heart is breaking for you. Please just take each day by the minute...that is all you can do right now. I'm praying for you. God is right there holding you up....he won't let you fall.

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  8. As one who lost a sister as a child, it's extremely hard. I devoured books about loss, titles such as Nobody's Fault, Beat the Turtle Drum... I know there's other's. I'd sob when Charlotte passed on in Charlotte's web. My dad said they used to play that alot. Especially for the two surviving triplets. (My twin and I were 9, the triplets were 5 when one of the triplets drowned in an accident.)
    Just being there for your survivors, talking about Conner, sharing pictures -- all those will help. They will cherish those.

    I don't know how my parents did it, but I do know they cried with us. Knowing this helps me, even now.

    And 27 years later (my goodness, that's a long time), it still hurts. But I treasure the memories.

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  9. Hold your boys tight and cry together if you can, your love your love your love-
    there are are no words.

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  10. I'm Erica's twin... So we know exactly what Hunter is feeling. Just make sure he knows you don't want him to take Conner's place and be in heaven. That him dying instead won't fix it or make you hurt less. Make sure he knows that you love him just as much as Conner. That Conner loved him. Also that families are forever. He will be asking you questions about what if he died, or traded places with Conner so you'd be happy again.
    I also wanted to say, if he needs it, find him a children's therapist. I went to one, and it really does help. My doctor was not the kind of shrink that used meds, just plain old fashioned talking and goals. I had to see him for about a year, 3 years after my sister died.
    And in regards to it getting easier. I picture it as a scar holding your heart together. Your heart is totally shattered... it does heal, but it will leave a scar. It's always going to hurt, but you find ways to continue to live. I still miss my sister more than anything. But I know I'll see her again and that she will always and forever by my sister. It will be the same for Hunter.
    1's year is shock. 2nd year it gets worse. 3rd-5th year it starts to get easier.

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  11. I just noticed you had another son.... it's going to be hard for him too. Harder in it's own way because he's even younger and will have less memories. Make sure he knows the same things I told you in my post for Hunter. Write down all the memories you have of him and Conner- specially just of the boys. And make sure he shares his own that you might now and write it down now. This will become a treasure for him.

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  12. I took a poetry class one time in college and one student wrote a poem about his mother who was dying of cancer. He wrote about holding his mother's hand while she was leaving this world and the last line of the poem was, "I push all the love I can through my fingers." That line has stayed with me for 12 years and every night when I put my CF babe to bed, or do her treatments I'm reminded of this. A mother's love is so powerful. I couldn't possibly understand what you're going through, but as I weep reading your words, I know that love, that boundless, neverending, all-encompassing, heartbreaking love. Every CF mom I know is thinking of you and sending love. We are pushing all the love we can through our fingertips to you, as we type these words. You have such a great community of CF family and friends following you and praying for your family. I hope you feel it. Love to you. xoxo Elise

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  13. My heart breaks for you! I can't even find the right words to tell you how sorry I am! When I first heard your story last week and I read your posts, I knew that you would write a book one day! You are an Amazing writer (from the heart) and everyone needs to hear about your sweet Conner and the fight for CF! Praying for you & your family!

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  14. I have no words, but I am sitting in my living room bawling for you. Praying for your heart.

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  15. I've been praying for you. Our church prayed as well.

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  16. Hi there...I just wanted you to know that you are thought of today! My prayers are sent to help comfort you through your day...secon​d by second, minute by minute, hour by hour...just for the day until you fall into sleep. What you write helps so many. I pray that your family is able to grieve with you, even though each of you is in your own world of Connor thoughts...​not really outside of yourself thinking of others. I pray that you have more patience on the outside than you are feeling on the inside. I pray that you can forgive each other this test of faith and move on...ever so slowly and painfully, until you are running and laughing as if you are all children...​open to God and realizing that Connor is right there with you...that wisp of air you feel grazing your cheeks as you laugh! You'll hear the birds...and know his flight!
    May peace find your family for a moment today. May you go outside, look up, see a moment of clear sky, all the way to Heaven...
    Toni Mott

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