vows

I just grabbed my husband outside of her room. To remind him how much I love him and how proud I am of us. . and how we as a couple are muddling through this.

And then I said this is the easy time.

We both know it to be true but after a night like tonight. With 2 headaches needing morphine and violent throwing up. . . its hard to believe.

When she is gone. When we have the 3 other kids full time.. . 3 kids too young to understand. . That need us and are normal (or at least our new version of it) children. That’s going to be the real test of us. We renewed our vow to each other tonight to cling to each other fiercely.

DSC_0561As I blog in the dark next to our daughter I hear him in the kitchen.. cleaning up and putting away dishes. He is amazing. I am lucky.

Even in that he allows me this blog. And to reach out publicly. He is not like me…he is much more private.  . I do wish sometimes he had a blog.. that way I could peer into his head and see what all of this looks like for him too.. .But he sees the importance in it and I think most importantly my need for this. My need to make a impact and right my wrongs.

 

I know I didn’t cause this. But had I done more. Had I not muted the tv or turned the channel for St Judes commercials. Had I really paid attention . . . Had I done more before. . .

well maybe we would have found a cure.

I’m sorry my love.

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There is a sound.. . .That sound.

When she is about to throw up.

A deep gurgle and bubbling. A rumble beyond her control . Then almost a  burst and explosion of liquid.

Its so different than any other time I have heard one of my children get sick. With her celiacs she has vomited quite a bit in her little life.. But this noise. . .the depth and power and pushing of it is different.

I wonder if its like that for all kids at this stage??

She is getting so weak. We have to use all of our bodies to prop her well enough so she doesn’t choke on it or simply fall backwards.

I want to keep the smell of her…but its no longer the honey sweet smell. . . already I find comfort in it. . this new mixture of smells that is her.

She ate again. . but then was ill a little while later. So now we wonder was it the food? Or just tumor?

Always doubting and wondering. . . things change hourly sometimes it is so hard to keep on top of it. So hard to stay ahead of her pain and nausea.

She needed me again tonight. My touch and scent soothed her. In the simple act of needing me she gave me such a gift. The feel of her hand pulling on mine making me wrap my arms tighter.

thank you my love.

She is gorgeous still. Beyond words beautiful. We teach our kids your actions and who you are make you beautiful or ugly. As she gets weaker. . it shines out even brighter.

I found a bruise on my inner thigh today. I couldn’t figure out where it was from. Then this evening snuggled up watching a movie I was very aware of it. And it hit me . .

I am bruised from her hip bone. It sticks out so far its given me a bruise.

How..???

Why…??

oh my sweet baby.

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46 Responses to “vows”

    1. Each day I come to work and look for your Blog…. While you draw your strenght for others…I draw my daily strenght for my everyday life from you!!! I do not know you ,other than what I have read in your story of your family… I am at awww each day at your strenght.. I pray for you and your Family Daily..God Bless You.. God Bless your Beautiful Beautiful Young Baby Girl!!!!!

  1. please keep blogging.. i really want to look up after Jennifer 🙂 and dont forget to keep smile and think that your family life is amazing.. God bless your family always..

  2. I have no wise words or advice, much to my dismay. I check your blog throughout day for an update on your beautiful daughter. I have been silently riding along on this journey with you. Your honest and eloquently written entries bring me to my knees. I am writing simply to make my presence known, in hopes that you find a small piece of solace in knowing that so many people are here for you.

  3. My Dearest Libby – Mom,
    I want you to have a hug that lasts and holds you up through this terrible pain you are going through each and every time you may gasp a breath of unanswered strength. You are every ounce an Angel and Jennifer feels your love even when it’s wringing you both into despair. When I read your words, I understand, empathize, and I want you both to know even though this time not what you ever imagined it would become, it is a place of deep devotion and intensity that as a Morher and suck daughter endure, you do have each other. Your husband us there too. Your other children are with you as well. Each will all acquiesce as they can, love and openly accept what they can endure as well. Each to his own does not refer to selfishness- it’s more a way of interpretation to ones own acceptance of understanding. These words may make sense as time dies go on. You Libby already know this, I can read it in your postings. I do not mean to come across as ‘preaching’ please understand. I only wish to offer relevance and comfort in your families times of sharing. Thank you for your courage and bless you and your family and many friends as you all love together. Hugs n Glitter, Kristine

  4. Gosh darn keyboard !!! My ‘ I’s came out as ‘u’, ‘
    ‘O’s as ‘I”s as ‘U’s…. Aaa ugh!!! I know Libby that you can see what I was trying to type. My sincere apologies for the typos!
    <3 to you All , KLK

  5. She will always be your beautiful girl and knows how much you love her. You have our support and love, from near and far and we all keep you and your family in our prayers.

  6. The thing that amazes me the most about this entire thing is you, you seem to elevate and progress to a different level of strength and being each day/step. Although I have never met you, somehow this doesn’t surprise me. I love that you and Tony and pulling closer together, that you have renewed your vows and continued faith that it will be you two as a team. We all deal with things so differently and this blog seems to help you tremendously which I think is great. As I drove into work this morning it was raining, and I couldn’t help but think of it as a cleansing period. I pray that today is a great day for you all, especially Jennifer! We will continue to send our love, support, and prayers your way.

  7. I too have been that person who changed the channel on St. Jude. I too have been thinking about that, a lot. We don’t do it because we don’t care, we do it because it’s too hard to know it’s real. Too scary to picture our own family in their place.

    And now I come here, several times a day, to see how Jennifer (and you all) are doing. While the page loads, I secretly hope there’s no new blog. They are such a devastating read. Yet, if there’s no update, I worry that she’s having a bad day (morning? hour?), hoping you are instead sharing good moments.

    See, once I knew of her, I couldn’t turn away, I couldn’t un-know. Your writing reflects her sweetness, her loving nature, how she would be the first one to take care of someone in her shoes, I think. She has touched me deeply. I never knew I could have such affection and tenderness toward a person I don’t actually know (though your writing makes me feel as if I do).

    But also, I don’t want to turn the channel. YOU can’t. Though I know you wish you could–I wish you could. I’ve been thinking so much lately that we stay away because maybe we have to feel to act. That only through experiencing someone’s pain–her pain, yours–will I (we, your readers?) do more than donate a few dollars to St. Jude when a cashier at the store prompts me to.

    I don’t mean to imply that I feel what you feel; I feel but an inkling. I fall asleep thinking of her, I think of her as I wake up. I have to force myself to stop. While I make breakfast and lunch, and oversee homework and activities, and baths and bedtimes, thoughts of your little girl wash over me and I sometimes have a hard time staving off the tears. That’s only a morsel of what you are all travelling through. I’m very sorry for you. But I’m not sorry I can’t un-know.

    One more thing. I was a sickly child. Not like Jennifer, but endless hospital visits, endless procedures, and poking, and prodding, and a big operation. I took it out on my mom, screaming nasty things at her while I clung to the leg of the kitchen table so she couldn’t take me to the hospital. Yet once I was there, she was the one I needed with me and to hold me. She was the one I called for. Because even when I was quite young and blamed her, with words and rejection, I knew this was not her doing. I knew. I think Jennifer knows too. She knows.

    1. Vonda . . . I feel the same way. I think of Jennifer all day. I only log on to facebook to see if there is an update. I pray for her, I pray for you mom and dad! I am sorry beyond words and emotions as to what you are experiencing. But I am thankful that if JLK was going to be born into this world, that she would be blessed with your family! It continues to prove to me that we are chosen to be a sick child’s parent. You have shown her so much love, so much dedication. Through this blog you show me that cancer can take many things, but it cannot take away, faith, hope and love. The greatest of which is love! Love wins not cancer. You will continue to be in my prayers and in my thoughts. God Bless you and hold you tight!

  8. Much love and prayers Libby. Jennifer will always be with you. I can feel my mom around me, and I am sure you will feel Jennifer after she passes too.

  9. You amaze me. With tears in my eyes I marvel at your strength. You are walking a mamas very worst nightmare and you have grace and focus. I am happy that you are seeing the small gifts Jennifer is giving you. I don’t know that I would be able to see those same gifts. God bless all of you.

  10. Libby, Tony and family,
    I have never been a blog reader and feel a little strange commenting when I have never met you. The Scharrenberg/Calcagno family has been loosely tied to us over the years but it is your raw honesty that compels me to want to DO something, so…..I flooded Diane Feinstein’s email yesterday and asked all I know on social media to do the same – here we come Barbara Boxer too, watch out! JLK will make a difference in children’s cancer research. Stay strong and know that there are so many supporting you – even those who you have never met personally – and sending love to your beautiful glitter girl.

  11. Your words are so beautiful and so touching. I want to Hold you all in my arms. I think and pray for you all everynight
    God Bless (((((HUGS)))))))

  12. My first blog, you are my first actual blog that I have ever read, the first that I have ever been so anxious to read when I see the next and even though I know it will make tears fall down my face, tons on tears, it will change my mood to be an emotional wreck. I still want to feel your pain, I want you to remind me how time spent is so important, how to feel your deep, painful, helpless love. Thank you. I am a believer, a follower in Christ and even though I don’t know if you are or not, pray with her, pray with him, find your peace my beautiful, find a Christian station (101.3 K-Love) and play it in her room, play it anytime you can. Jesus will heal your heart, ask him too. He will heal her tiny, fragile, precious body, belive this my beautiful…man I wish I could hug you right now 🙁 I am so sorry for what you, your family & your precious baby girl are going through. I feel your pain. Thank you.

  13. Phenomenal people. You can do this. Even when it “feels” like you can’t possibly…. You both can and will. Grace will empower you both. Love to you guys.

  14. First off, from the bottom of my heart, I would like to thank you for taking the time and energy to write this blog. The love and support that you all have for and give to each other are unmistakable. No one can ever take that away from your family. Your family will be in our thoughts and prayers. May God continue to bless your entire family.

  15. you and your strength and words amaze me and inspire me. so many prayers to you and your beautiful family from a family who does not know you personally, but knows Heidi and Matt and the boys. Love to you during this most awful time.

  16. I silently follow you and look forward to your
    blog everyday. It is my way of checking
    in with the family snd to see how Jennifer
    is doing. Please keep blogging.we will miss it.
    I love your honesty and love for your family.

  17. As I sit hear crying, I think of all the mothers who love their children so much. I admit I took the health of my 3 for granted. Is that how it always is? Until the ” unthinkable” happens. Oh Lord we just want to know why. Maybe there is no real answer. Please be with little sweet Jennifer and her family through this unspeakable trauma. Forgive me for taking such a beautiful gift of life for granted. All my love to little Jennifer. Surround her with angels, please.

  18. Your strength, courage and brutal honesty on this journey is nothing short of amazing. Your family will continue to be in my thoughts and prayers for the days, weeks, months and years ahead.

    Much love & prayers,
    Erin (A fellow “nestie Mom”

  19. I just emailed Senator Nelson in Florida. I won’t stop until more funding comes for kids like Jennifer. Sending thoughts and prayers of peace and love.

  20. You and your husband are the perfect parents, hand-picked by God, to go through this unthinkable journey with your precious daughter. Your love, strength , honesty, and courage are amazing. Jennifer feels your constant love and feels peace from that, even in her worst moments.

  21. (I tired doing this from my smart phone and I don’t think it worked…so here it goes from the laptop)

    I discovered the horrors of Peadtaric Cancer through a course I was taking a few months ago. I had no idea of the lack of funding. Before that I gave to St. Jude and the occasional charity when asked. I see and NOW know that is not enough. You made a very good point about acting NOW… fight it NOW before it is too late for other children. You are so selfless and giving in the worst time of your life. You are born leader, protector and fighter.

    My deepest heartfelt sympathy goes out to you and your family. Jennifer’s light is bright and her smile warms my heart. I want to fight for kids like her. My first step was a donation to a Brain Cancer foundation through my company they matched my donation. My next step was an email to Bill Nelson (Florida Senator). I won’t stop there… Jennifer is starting a movement and your voices are being heard.
    I had a classmate pass last December of Osteosarcoma her mark on the earth was live, give love… and that’s what I intend to do.
    Love and Peace to you and your entire family,

  22. Thank you for sharing real emotions.
    Thank you for fighting for your marriage in the midst of the war.
    Thank you for being a model to all of us on loving intensely.
    Thank you for being the best wife and mom to your little princess.
    Thank your husband for being the best dad and husband.
    Thank you for being in the moment .

  23. I stumbled upon your story from a Facebook post/share and dared to read your heart-wrenching experience. My heart goes out to you, your family, and your precious daughter. It pains me that there are illnesses that so devastatingly affect our beautiful children. I feel that our children should never have to suffer, especially from such terrible illnesses. And I’m very sorry that your daughter and family are having to go through this.
    That being said, I have been researching a particular topic and, for some reason, feel compelled to share what little information I have garnered with you.
    I invite you to contact me, if you feel so inclined. And please know, that I wish you and your family the best.
    I pray peace, love, healing, and strength upon your daughter, yourself, and your family.

  24. You 2 are simply inspiring and amazing. Jennifer is so loved. We will all help you make a difference. It takes a village, and Gilroy is an awesome one! You guys aren’t alone. Big hugs to all of you.

  25. Every day I wait for your post eager to see if that beautiful princess has had a good night or not. Today while I was reading I was sobbing. As a mother my heart hurts so much for you and the courage and strength you and your husband have is unreal. God is in the midst of all of this and as hard as it seems He is the one helping you through this each and everyday and I believe that because I dont think any mother or father can do what your both doing to get through this and holding a family together. I dont know you but I have come to love your family. What an example of strength and love you show. Jennifer will never be forgotten because there are too many of us that she had touched. Sending my love, and prayers and asking God to continue to give you the strength you need each and everyday to get through this. ~HUGS~

  26. Praying for the six of you all the time.
    I had no idea that ped. cancer such such little funding. That needs to change. I’m sharing your video, telling people, etc.
    Jennifer is making a difference. You are making a difference in her life by being the best advocate for her.
    My heart breaks for her, for you.
    Praying for comfort and peace and understanding for all six of you.

  27. Even though I don’t know you I started reading your blog because of the video you posted. I have a 5 year old in kindergarten this year and my heart breaks every time I read your posts I keep reading it even though it’s hard to get through. I guess I just wanted to let you know you are touching so many life’s in so many ways. You are just being a mom and being strong for your daughter and it makes me a better mom because of it. I have squeezed my 5 year old so much since learning about JLK. I pray for you and your family to keep your strength and courage, you are not alone. Thank you for your words. You are a powerful courageous woman and a role model for all mothers to be the best we can every day with life’s circumstances so thank you. God bless

  28. My heart goes out to you and your family. You’re right they need to change the amount of money that is use for cancer research for our children. I have always donated to Saint Jude Children’s Hospital.
    My thoughts and prays go to you and your family during this difficult time.

  29. wow, you are amazing you and Tony. good for you that can give attention to each other in the midst of this struggle. It is hard to just be there every day….and to not feel guilty for taking time for that relationship – smart girl! Jennifer knows that you love her ….as a couple and a family as well as individually…

  30. Libby,
    I am finally brave enough to post a comment. I am so afraid of saying the
    wrong thing, not knowing what the right words are, not saying enough, saying to much. Like so many other who comment, I agree, you are an amazing mother. My friend asked me to donate and when I came to your site I found myself needing to follow your blog so I could in my private way somehow send strength, love, support, anything to help you along this journey with your baby girl. Immediately I called, text, emailed nurses from work and friends and asked them to please help. I was overwhelmed with the responses I received back saying they had donated and were now also following. Saint Louise Hospital nurses are now invested in Love for JLK. We are so honored to help, to do something. I also wanted to tell you that I have donated to St. Jude’s for years and I do it for children like your little girl. Don’t ever feel bad or guilty for something that wasn’t forefront in your mind at the time. You see things differently now and that doesn’t mean you have to donate but you are helping raise awareness and that’s so important. I wish I could give millions, I wish I could save them ALL, I wish I could do something, anything so they wouldn’t hurt or be afraid, but I can’t. What I can do is give a little to you and your beautiful family and to St. Jude’s and I can tell you my heart aches for you and Tony and Jennifer. Words beyond that seem senseless. I will continue to encourage my friends and coworkers to help, I will think of you and your family daily and my passion for helping and supporting will never fade but will now be forever done with Jennifer in my heart. So much love and support to you all. My heart too is heavy for you.

  31. You are such a great teacher for us all.
    To live in the moment, to love with all of our heart.
    I want to help you but I don’t know how.
    I will pray. I will try to be better somehow
    every day for the love of Jennifer.
    I will never forget…

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