all night

My blogs are going to be short. And probably not every day. I just feel like I need to give a warning of that.

Each day is so long . . .normally that would be a complaint.

But I am thankful beyond explanation for each moment and each breathe.

She was up every hour last night. Struggling to urinate. She bears down and shakes with how hard she is trying. . . its so heartbreaking to see her fight so hard to do something that should be simple. . .that just a week ago was so simple.

One week ago . . was it really only one week ago?

Last Sunday night was the last we went to bed hopeful . . it was the last night before the new prognosis.

Next Sunday I will likely be lamenting this one. I think she will already be gone.

my baby. no. please. no

The hospice nurse came. We tried all different avenues to help Jennifer today. I got in a bath with her. We tried unsuccessfully to put in a catheter. the first time she screamed and I did my best to hold her and assist the nurse. The 2nd time my sister who is a R.N came and helped with allowed me to better hold her.

The first time it was so reminiscent of the time they tried to put a feeding tube in. She tried so hard not to resist. She called for me to help her. Begged for me to tell her when it was done. Once even yelling I love you mommy. And that was the breaking point. I scooped her up and held her.

Her frail naked body. Bones sticking out.

She hasn’t eaten…anything short of 1 popsicle since Monday. Tomorrow will be a week.

Luckily a friend stopped by this morning to drop off breakfast. We pretty much just walked away and left her there to take care of the other three kids.

While they were trying to put the cath in the 2nd time Jonathan sat on a chair outside her room. He just kept saying “No I am waiting for sissy.” as they tried to coax him away from the door. Finally they left to go play at a friends house.

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Tonight I tidied up while Tony snuggled her zonked out body on the couch. I found paperwork talking about to talk to kids about loss . . sorry I mean about death. It talks about using proper words . . .

I sobbed. Into my Charlotte baby’s hair. I told her this was her mommy now. Probably for the rest of her life. . this noise I was emitting. . . she better get used to it.

I don’t know how she does it though. She is still so with it sometimes. So lucid.

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How is it even possible?

Last night at one point she was totally alert. I woke up Tony just to be with us in the room together. Just sitting. . and chomping on ice chips. Especially making the squinchy goofy face we know and love so well.  To enjoy her living.

 

 

And now we try to eat dinner together, my husband and I before I go hold my baby all night..

all night

all night.

. . . please

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71 Responses to “all night”

  1. Libby… so many of us are here, reading, aching for you and for your family. I can’t say anything except that I am so sorry this is happening to Jennifer, to all of you. We are here, we are lifting you all up, all the time, and I hope you can feel it. Sending so much love my dear, I wish I could hug you.

  2. aw Libby. I have no idea what to do to send comfort. Watching the little girls have a lemonade/hot chocolate stand to raise money to keep JLK’s daddy home longer reminded me that your little one is their age – nearly made me cry just watching them. I am so truly sorry for this awful reality. Nothing worse than this in my opinion. Hugs to you.

  3. Libby and Tony, hugs and prayers, and love and more hugs and prayers. I truly believe angels are looking over your family and JLK. You have the world thinking and praying for you. You are amazing <3

  4. I am devastated for you. Sending so much love and prayers. I have been sharing your video and begging others to share.

  5. Libby all I can say is that I’m willing so much love to you guys and thinking about you all. I’m praying for… Something, anything to make it better for all 6 of you.

  6. My heart is shredded apart. I sob daily. You and Tony and JLK, Nicholas, Jonathon and Charlotte are in my prayers. Much love to you and your family.

  7. So very heartbroken for you guys. Though we’ve never met, I think of you often and just wish so very much you were on an easier path. Sending so much love and strength to you guys.

  8. Libby, I pray for you and your beautiful family often throughout each of my days and have wept many tears. I often want to say something but the words just don’t seem to come out right. my children pray for your family and for Jennifer’s comfort. Tonight my daughter and I wept together for you and prayed. It isn’t fair and my heart breaks for you. Your strength and courage is amazing. Sending our love & prayers.

  9. Libby, still sending love and light amidst the heart ache. I’m so sad to hear the hospice care isn’t bringing more relief for her and your family.

  10. I’m at a loss for words. Though I know no words can take away your pain. Sending you loads of love, strength, prayers.

  11. Libby, I’m praying for peace and strength. I’m so sorry your family is going through this. Please talk to God, may He comfort you, may you feel His love surrounding all of you. Many hugs, much love, and many many prayers.

  12. Dear Libby and Tony,
    I do not know you personally but my prayers continue for each of you and especially Little JLK. BTW your blog name for her is so sweet, I smile every time I see it. But, then, when reading your comments I become so sad. Your Precious Daughter (and family) have touched my heart so deeply. I’m not a parent (my only children have been fur babies, for which I love and have loved very deeply) and do not know what it’s like to have human children. Therefore, I certainly do not know all the pain and suffering going on there. But, I’m here so wishing I could take it away from each of you. I truly do not know how you’ve done it. STRONG…is what it is…You are so strong and your family is so beautiful. Lots HUGS.

  13. Libby, I continue to pray for Jennifer and your whole family. I am at a loss for words but please know I am thinking of you all and sending you much love.

  14. I don’t have any words. There’s nothing I can say there’s not much I can do, and I am so sorry for that. I am so heart broken and I’m so angry for you… I don’t even know at who but still…you a r r in my thoughts so often and this is so so wrong.No one should have to endure any of this. I am just so so sorry

  15. Libby and Tony,
    I know there are no words sufficient for what you’re going through, but I’m continuing to send my love and prayers to you, JLK and your family.

  16. Sending love and understanding to you across the miles from the UK. I just wanted you to know I’m following your story and thinking of you. I know how it feels to be helpless, desperate and feel that switch go inside when you know you just have to dig in for the end of the journey. The love of children truly is the most precious gift, when that love is so cruelly threatened and there are NO answers it is soul destroying. I hope and pray in our lifetimes we know why this happened to our beautiful girls. Sending strength should you need it xx

  17. Libby,
    I am in awe of Jlks strength. She is an amazing little girl. We all can learn from her. I pray for peace for all of you. You are being lifted in prayer. I pray for one more night and one more night and one more night……with your beautiful baby girl.

  18. It hurts so much to read this but at the same time I want you to know we are reading in hopes of taking some of the pain you are bearing. My heart aches for you.

  19. My heart just breaks for your family. There are no words to comfort you during this time. Just know so many people are praying for you and your family. We’re praying for you Jennifer… You’re such a brave girl <3 Jesus take her pain away.

  20. Libby and Tony, sending you love and prayers all night and day. Always know that we are here. Libby, you have a gift with words and are able to express so much. Unfortunately, I am unable to put into words my feelings besides expressing how sorry that this is happening to JLK and your family. Much love and virtual hugs.

  21. I am so sorry. You have such a truly family. I wish I could find some magical, comforting words to soothe your hearts. Your family will be in my thoughts and prayers. Much love.

  22. I just want to send digital hugs to you and the whole family. I’ll do what I can to send money for research and share your video to help make a difference. I am just so sorry.

  23. Libby and Tony my heart aches for you and JLK. I am so sorry and wish that there were words I could write that would make this a little easier. There are no words anyone can say to make this easier or better. To watch a child of yours suffering and hurting and there is nothing you can do is devastating. Oh my God how much this hurts me to read and to see how much you and your husband and family are hurting. I am praying for a miracle and for God to touch your sweet girl and give her some relief from what she is going through. No child should have to go through this its not fair they are innocent angels in a world of a terrible disease. I am sending you hugs and prayers and only wish the next time I read your blog you tell us she had a wonderful day and night and she was able to eat and not throw up. Continuing to pray for you and your family with a heavy heart for all you are going through. God Bless you both and give you the strength you need everyday to make it to the next.

  24. Libby, I am just so sorry that all of you must go through this. I know that watching someone struggle like this is so painful and the thought that it is you daughter is just heartbreaking beyond words. I pray for peace for Jennifer and for your journey back to happiness. I pray that beautiful memories, the love of your friends and family and your fight to honor JLK will help to fill that hole in your heart she will leave behind. Sending love and prayers your way everyday.

  25. You are such and amazingly brave and strong women. You give us all strength.We all cry with you and for you as we all pray with you and for you as well. You and your family are filled with courage and strength. To sit here and keep blogging i know for you but to include everyone in your struggles and your fears and you saddest hardest moments to the moments you will cherish and remember for the rest of your life. You all are truly amazing. God bless youand your entire family . We send our love prayers and warm thoughts to you in the times you need most. Please know you have a whole community here for you and you probably feel alone at time but you are never alone.

  26. I do not know your family but heard about your heartbreaking situation through my mothers’ group. I have a 6 year old son and can’t even imagine what you all are going through. I’m sitting here crying for all of you. During the hardest times (now and to come) please remember that there are so many people thinking of your family with love and crying tears for you daughter even though we’ve never had the privilege to meet her.

  27. I ache for u. Ur one of the strongest mothers in the world. Ur in my prayers dayband nightband so is your angel. I wish we could stop time and change the world. I admire u in everyway.. please know god only puts what he knows u can handle in your life. He knows ur strong and will be with u and ur angel every moment. My heart aches for u and ur family. God bless.

  28. So many hugs to you, Libby. I am so very, very sorry. Hoping this week is more comfortable for Jennifer. We are all here for you and behind you every step of the way. What an amazing mother you are. xoxo

  29. May the Lord cover your family & hold you close & tight. I pray and PRAY so much for your comfort. My heart aches. My heart cries with yours. God Bless you know you have hundreds of us holding you and your family in prayer in love & hope you are able to feel a bit of it knowing this.

  30. There are no words to express my deep sadness for your family. This is one of those times when there is no answer as to why? There is no possible reason why any child should suffer like this. There is no way that this is “God’s will”…..His heart breaks with yours. I pray that His love will sustain you, His arms will hold each of you and all of you. Much love and many prayers coming your way.

    1. There are no words to express my deep sadness for your family. This is one of those times when there is no answer as to why? There is no possible reason why any child should suffer like this. There is no way that this is “God’s will”…..His heart breaks with yours. I pray that His love will sustain you, His arms will hold each of you and all of you. Much love and many prayers coming your way.

  31. Libby, you are constantly in my thoughts, as well as sweet Jennifer. I hope you can feel all the love and strength and hope we all are sending to you all. I have no other words. Just love.

  32. I read your blogs through my tears…. never being able to write something because what words could I possibly say to help you. except that my thoughts are constantly with you and your beautiful family. I pray that each day Sweet Jennifer has had a good night and that she can eat and not throw up. I Pray for a Miracle and I pray for your strength.. Thank you for sharing your words with us. All our hearts are with you and your family.

  33. Libby, Tony and family,
    There are no words for a loss of a child. When we lose a spouse you are a widow(er) but there is no name for someone who is losing a child as it is simply unspeakable. One thing I do know is that JLK was given the most amazing gift of parents that any child could ever wish for. You chose JLK and she chose you and I will forever believe that there is not a family on this Earth that could have provided the love, strength, fun, warmth, security and protection that every child bases their lives upon better than the Scharrenberg/Kranz/Calcagno families. You make me want to be a better mom every single day and remember to cherish every single moment that being a mom entails. While JLK was dealt the crappiest of hands with cancer she won the lottery with the parents who are lovingly holding her every single day. I don’t know what to say and don’t thing there are words to bring any sort of comfort to you but I DO know Jennifer couldn’t have a better mom, dad, sister, brothers, aunts, uncles, grandparents, etc than you all. Keep fighting and I promise to send your plea to everyone I know.

  34. I don’t know you but can’t stop thinking about you and your family. I am so sorry for what you are going through. There just aren’t any words. Your Jennifer has touched my heart and I know her legacy will live on and help change the fight against childhood cancer.

  35. Every time I read your blog, my eyes well up with tears and I hurt for you, I think of my babies and how that would be. I know I don’t have the right words to give you..I don’t know that there are “right words,” but know that you have people praying for you daily!

  36. I do not know you Libby but I am originally from Gilroy, a mother of 4 and I am touched beyond words by your strength. You are both beautiful heroes in my eyes. Sending you love and light in these darkest days.

  37. I cannot empathize. I have not felt the kind of loss you are feeling! But my HEART is breaking for you, for your beautiful, sweet, lovely child. There is nothing I can say except that I ache for you. I will share your story. No child should go through this horrible disease. I am so glad she has a wonderful loving family surrounding her. God please take away the pain, please I pray.

  38. I’ve been reading your blog posts and crying with you and all the others. Your daughter is beautiful. You are beautiful. No other words exist in the human language that could possibly express my sympathy, sorrow and sadness I feel. All I can say is I’m sorry.

  39. My heart aches for you. I am at loss for words. Just know that I, too, am sending more love and prayers to you and sweet Jennifer.

  40. As I’m reading here in tears ruby is commenting on how much she loves all the pictures, I’m so glad you have all these amazing pictures to save and cherish

  41. Your words are powerful and poignant. You describe so eloquently the feelings that all parents with a sick child go through and put into words the feelings that so many of us cannot express. The emotional roller-coaster of all the emotions you experience in one day: hope, despair, grief, compassion, fleeting moments of happiness, and most importantly love. You and Jennifer gave us all a gift. I know that’s not your intention but these brief moments and feelings you have shared you let us see how loving, strong and admirable a person can be. Scream, get angry, pray that it is you and not her, beg God to give you her pain instead of her. (I know because I’ve been there.) Do whatever it takes to get you though one moment to the next, but know that because of you we all got to see what a wonderful and amazing person JLK is and that no matter how short or long her time is here, that she has experienced and given more love and compassion in her life than most people will ever experience. I know that my words won’t take away the pain and despair, but know that I cry with you. Please know that you’re not alone. That even though you may not know who we are, that we sincerely care and appreciate you sharing one of your most precious gifts to the world, your amazing little girl and her story.

  42. I know you have lots of love and prayers sent your way as there’s is no way anyone can imagine the heartache you and your family is going through. We do share your pain with tears and a heavy heart..I will put your family in our prayer chain at church. May God Bless and Comfort you through this time of pain. Keep your Faith.

  43. My heart has been broken by what you and your family are enduring. I pray for you daily and send love your way. You are always in my thoughts. xoxo

  44. “This is her mommy now”. You don’t know me. My name is Erika and I am a grieving mother. I lost both of my older two children, Arthur and Erik. After Erik passed away, I used a sperm donor to get pregnant with my youngest and only living child, Juice. Today is his 5th birthday. I’ve been crying since last night for Arthur and Erik, even on Juice’s own wonderful day. Because this is his mother, and the only one he has ever known. He was born right into the middle of my grief for which there is no solace or ceasing. So I am with you, sweet mother. And from the bottom of my heart that never stops screaming, I am so so sorry. And I love you.

  45. I an so so sorry. I am completely heartbroken. I cannot imagine your feelings. I have read your posts over & over. I cannot express how deeply sorry I am. I pray for your comfort. & I know she is resting now. But it doesn’t take the pain of a mother away. & for that I am sorry. ❤️

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