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, April 13, 2010

No time like the PRESENT

what a day.
a day full of love. thank you to Ronnie for posting our story out there, the outpouring of love and support from the CF community has truly kept my head up a little higher than i could have thought it could be under these circumstances. my head is spinning. my phone is ringing. i hear the doctors voice in my head over and over again. "it's time sarah...it's time" "i need to discuss with you what the end of life with cf entails, you have many decisions to make...." i just can't believe it's all real. i mean, can it be? how can it be? my son is sitting up, talking, sometimes laughing...when his fevers are broke he looks alright, not great, but alright....but definately not like he's dyeing. but hey what does dyeing look like? you see these pictures in movies of people dyeing and it's so unrealistic that maybe he is truly dyeing right now in front of my eyes but i can't see it. i've got mommy goggles on. i don't want to see it. i don't know what i'm supposed to be seeing or looking for. i just don't know. don't know anything anymore.
can he really be dyeing? someone pinch me. i've been crying so much, but then all of a sudden i'll look at him and think..."no...he's not dyeing. he's not leaving me...." it just can't be. he's my child. my firstborn son. my life. my love. my every breaths fight. one of my main reasons for existance. i know he's only on loan to me from God...and I count each day as a blessing...but how can this all be happening so fast? why wasn't there any warning to it....? maybe there was and nobody told me. maybe i didn't wanna fully see it. i don't know. had i known that he was only gonna be here with me for seven short years i wouldve made them better. i wouldve been better. i would've done more for him. more smiles, more family memories...but now...it's all moving so swiftly in the other direction that all i have are the undones and the what ifs. theres not more time for the shoulda and wouldas...and thats devestating.
hug your kids for me. love them. not just say you love them but truly love THEM. each and every moment. Life changes in the BLINK of an eye. Gods plans are not our own. And now I'm just wondering where things are going and when...and how much more time I have to make the best of the situation that I can. thats no way to live. Live each day to the fullest, how cliche but DO IT. kiss. love. hug. hug some more. cry. scream. dance. laugh. play. make messes. have arguments. have pillow fights. make the most of every single moment.
time here is so short and so precious. and i know he's not gone and is still with me, but with the prospect of losing him hanging over my head all i can think about is the what ifs. the i wish i could haves...the regrets. theres nothing more helpless then that.
bless you for your love and your support. you keep me going. the cf community is the most amazing and the most heartbreaking community i've ever been a part of. the group i wish i was never a part of....but because I am, I'm so thankful for each and every one of you. my family. my friends. my fellow sufferers. I pray for a cure. such a miracle that would be.
But for now, my eyes are heavy. there are no more tears to cry for tonight. we've spent the day in the sun with our family and with the grandparents, and conner laughed and smiled and struggled and all of it was just beautiful. i had the clinic call in a strong oral antibiotic so that he can enjoy his bday tomorrow (wednesday) and maybe be home for his bday party this saturday. that is my prayer. brad and i are meeting with the team on thursday am to discuss home vs hospital hospice and advanced directives and intubation, etc etc. until then we're just going thru the motions. i'm ready for bed. i pray i wake up tomorrow and this is all just one horrible nightmare.
i wish...i wish...

31 comments:

  1. I won't pretend like I know what you're going through, because I don't think anyone truly does. Even the mother's who have lost a child. Each situation is different.

    Although we've never met, I adore your family, and have grown to love you all so much. Conner's health is tearing me to shreds. I can't imagine what it's doing to you.

    Please keep your head high. Know that you have given him the best possible life he could ever hope for. You are an amazing woman, and an amazing mother. Conner is happy. All your sons are happy. There shouldn't be any regrets. None at all. His life is amazing, and he's known nothing but unconditional love, support, and faith.

    Happy Birthday Conner, and Stay strong Sarah. You're allowed to cry, and be angry, and be hurt; but you're not allowed to question yourself, because you have nothing to question in the first place.

    You're amazing, and Conner is amazing.

    Lots and lots of love!
    Chelsea

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  2. praying for your family and for peace whatever happens
    ill be following your story with love Jess

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  3. Praying for your sweet, precious boy Sarah... You are such a good mommy... I am sure he is feeling so loved by you.

    Praying for the Lord to wrap you in His arms and comfort you right now.
    Sara

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  4. Sarah, I want you to know that I am praying for you. I have posted about you and linked your blog so that my readers can be praying for you as well.

    I hope that today is Connor's best birthday ever and that you are able to enjoy every moment of this special day with him!

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  5. Cant imagine how hard it must be for you *hugs*

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  6. God is shining His light down on you. Feel the warmth of that sun on your cheek. You are not alone.

    Hugs my friend, hugs.
    k.

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  7. It's amazing how close this community is online... I've never met your family. I've never spoken to you, but I cry for your pain and struggle and exhaustion, yet you keep going... You are so strong. I admire that incredibly...

    I am praying

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  8. I am Josh's mother, and so sorry you have arrived at this moment. I am praying for all of you, and asking all the angels and saints to gather around your family. I am certain my daughter, Angela, will be waiting with open arms in heaven if it is truly time for your beautiful son. Your overwhelming sadness is being supported on my shoulders and in my heart. Christine

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  9. Sarah and Family,

    I am saying a novena to St.Jude for your family. I am praying. Miracles can happen! You are not alone.

    Kris

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  10. I just came across your story the other day on FB and just now read this post. I'm crying because I can tell you are hurting and I know that CF is not easy to be around. I'm 28, have CF, and had a double lung and liver transplant when I was 25. My son was just one year old when I had the transplant and I couldn't even imagine leaving him behind...but it was something I thought about every day. I feel for you at this time and send all of my love to you and your family. You have a tough little guy there! Happy Birthday to Conner and may a miracle happen for him today. <3

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  11. I saw your story posted on FB and came hear to read your blog. My heart goes out to you and your family during this difficult time. CF is such a devastating disease and I feel so sad for what it has put you and your little boy through. Don't question if you were good enough, did enough .. I can tell just from reading your words that you are a loving and dedicated mother who has done everything humanly possible for her son. I will keep you in my prayers and I hope that Conner is able to enjoy his birthday today.

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  12. Praying for you and your family. My older brother has Prune Belly Syndrome. Happy Birthday to your precious boy!

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  13. Happy Birthday Conner!!

    Today the Lord has blessed you with a beautiful day full of possibilities surrounded by loved ones. May you and your family have the best day ever. May you have strength and energy to enjoy today. My prayers are w/ you and your family.

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  14. Sarah- came across your story about 2 months ago. What an amazing mom you are and a blessing. I have a 2 year old daughter with CF and you inspire me daily. We all prayed for you and Conner last night when my little ones went to bed. I am praying that God will surround you with an overwhelming peace and love. Happy Birthday to an amazing little boy who I have never met, but has been on my mind since I read his story 2 months ago. Thank you also for the reminder to cherish everyday and moment to the fullest. You are amazing!
    Love and blessings in Christ,
    Tara

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  15. Sarah,
    I cited and linked your blog on one of my posts today. I just wanted to share some of the wonderful things I've read here. I really hope you don't mind.

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  16. Dearest Sarah & family,
    My heart truly goes out to you and your family for I have been there, where you are now. Your post brought back so many memories of that time for me and it's been since 1980-81. I was told my 4 1/2 yr old w/cf only had one month to one year to live. I too, like you looked at my son and at times denied that my son was going to die. Unfortunately, it came true 7 months later, soon after his fifth birthday. My thoughts and prayers are with you and your family. I pray that you are given strength to make this journey that is ahead of you. I wrote a poem during this time in my life and I would like for you to have it too. At the time, my son was the only child I had. I have since had two more children, the next born a daughter also has cf. She had a double lung transplant at the age of 16. She's 27 now. My youngest, a son is 15 no/cf.....Here's my poem to you.
    My Only Son
    I have only one son, whom God blessed me with
    But soon, very soon,
    He will be with our Father in Heaven
    He has to struggle to breathe the air that we breathe,
    But soon, very soon he will struggle no more
    I thank the Father in Heaven
    For letting me have this child,
    Even for a little while,
    For now I know what it is to love him, laugh with him, to cry with him and to suffer with him
    Thank you Lord for choosing me to be his mother
    While he is on this earth.

    If you ever want to contact me my email is
    cj1000193@uid.onemain.com
    Cloyce

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  17. We are praying for you here in Hillsboro. I can only imagine how hard this must be for your family. Love and prayers to each member of your family...

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  18. A friend just forwarded me your page. I have a 4.5 yr old with CF and my heart is breaking for you. Praying that the "God of all comfort" will bring peace to your mind and heart as you go through this time. Thank you for the reminder to take advantage of every moment. Suddenly, I'm viewing life a little differently.

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  19. Both my kids have CF, but reading your blog makes me so incredibly thankful and makes me realize that we are not guaranteed a tomorrow. Even though we have never spoken or met, your family has a special place in mine and my family's hearts and a constant whisper in our prayers. I pray for Conner's strength (which he seems to have already!) and comfort and strength for you and your family and also for faith and peace as your cherish the rest of your tomorrows with your son.

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  20. I cannot imagine your pain. I found your blog through Kristin Sweeney. I will be praying for you and your family and for a MIRACLE! May God grant you supernatural strength to walk this road He has laid out for you. May God send His angels to comfort and speak peace to you!
    Thank you for the reminder that our children are just on loan to us. I have been too flippant with our time. May God grant you and your family WONDERFUL time with your son!!

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  21. I only found your blog yesterday and I am just so, so sorry for what you are going through and what you must be feeling. I think you're story especially hit me hard because I have a 7 year old, named Hunter. He has a seizure disorder and I promise you, I will try to remember every day that I hate seizures, how lucky we are to "just" have seizures. I hope that came out how I meant it to...I just mean that I am in awe at your strength and your fight for your son. My mind will not even allow me to think of what you must be feeling; trying to put yourself in someone's shoes who is walking the road you are...well, if I'm being honest with you, it is just too heartbreaking for me to imagine. Your mansion in heaven, that you will share with your entire family, will surely be larger than life!

    I want to cry just thinking about you guys right now. Please know that my prayers are with you all, especially you and Conner. I full well know the love of a mother and her son.

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  22. Hey Sarah. I have been thinking of you today a lot. I want you to know that you inspire me to be a better mom. I am sure many people feel this way about you. I often find myself getting irritated about the little things in my day being a stay-at-home mom, but I tell you, when I do, I think about your situation and it melts those irritations way.

    I hope that today brings lots of good memories to be filed away. I will be praying for you and Brad as you face tomorrow.

    Lots of love,
    Yovan, April, Kian, Brahm, & Landon Luyt

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  23. As with a lot of previous posters, I am a CFer who found this blog linked through the CF networks. But my heart absolutely breaks for you. There are never adequate words in situations like this, I don't think, but I want to let you know your story touched me and I hold you and your precious boy in my heart tonight. I wish you all the peace and comfort in the world.

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  24. Sarah,

    my mind can't grasp or comprehend what is happening to you guys because its so unbearable to hear. You are a very strong woman who brought to this world a strong little boy with the will to live. I only know about you guys from this week, but you are such a huge inspiration. I forwarded your website to my CF doctors and I tell everyone about your story.

    I truly wish you weren't going through this, and I wish the doctors could just say hey we mixed up his records and it turns out your son is healthy. I really don't have any type of words that are good enough to give you comfort or heal your pain.

    I pray for you and your family that God gives you many more days of happiness and enjoy every moment with your family. You have a very very special boy, and he will always be with you.

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  25. I really wish I could give you a hug! I just can't help but wonder why Conner?? He's so young, so precious...this my sound selfish, but why not take me?? I've lived my life with this disease, why not take me and let Conner live the rest of his life, enjoy what there is out there. Since I found out about your story a few days ago, all I do is think about you and your family. I am always checking here, and facebook to see how things are, if there are any updates. I've cried every night..I've called my church and had Conner put on the prayer list, I've prayed...and I will continue to pray for Conner. I pray for the best for your family Sarah, and I will be here for you always!

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  26. Hi Sarah,
    I found your blog through Kristin's blog. My heart is so broken as I read about your precious son and family. We have 4 daughters - three here with us and one in Heaven. We lost our 5 month old baby girl due to a very rare genetic disorder so my heart really feels for you right now. I know we don't know each other, but we WILL be lifting your precious son in our prayers today! I certainly wish I could take away your pain, heartache, fear, anxiety and replace it all with peace, joy and hope - but we both know that only God can do this. I am still searching for my peace, joy and hope..but certainly it must be coming. I am so sorry you are going through this hard situation, though I have no words to make anything better - we will be on our knees, hands held to Heaven for your sweet family.

    God bless you all.
    Kelly

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  27. Sarah,
    I am so sorry for what your family is going through...I truly cannot imagine the pain. I just want you to know that my family is and will continue to hold you all in prayer. We have a 6 yr. old with CF and I just lost my best friend to CF in December. I was fortunate enough that I was who she wanted with her through her last days. I sat with her beside her hospital bed for 4 days. If you need to talk...please e-mail (addy is on the bottom of Zoe' blog)...
    Hugs to you...
    Jada
    zoeforlife.blogspot.com

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  28. I am blown away by your story! I don't know what to say except I am sorry for what Conner and your family are going through. I will follow Conner's story and we will keep you in our payers and in our hearts every night..
    Hugs to Conner, you and your family
    Cahri Citron

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  29. Sarah and Brad - I am so broken hearted thinking about what you are going through. It is beyond comprehension how awful it all is. I was so very blessed to meet you and Connor last summer. He is such a sweet little boy. You guys are such amazing parents. You all inspire me to be a better parent and to enjoy my family so much more.
    Many, many prayers coming your way !

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