inhale

I lied. I want to blog for me. I want to remember. . .

everything.

Because even the horror is her. . .and because she brings her beauty to it.

And because I want to remember the anguish.

To stay angry. To stay focused on what i have called my “after plans”.

The thread. My thread. Her thread.

Our thread.

Last night I came to bed and she was sprawled across it. Please please don’t let have been scared and alone.

She was up every 15-20 minutes begging to go the bathroom. We think its a spasming side effect of one of her meds. I gave her a bigger adavan dose and prepped morphine. I was probably 30 mins from waking Tony to transport her.

I felt hopeless. And helpless.

I tried to calm and focus on a workable solution.

. . . still cant believe she is dying of a brain tumor and its pee thats our biggest issue. . .that pee is the thing making me wish her to sleep through it instead of being so aware.

You just can’t plan for it all.

I am confident I have advocated well and firmly. That I made sure we were two steps ahead of potential problems. This we didn’t see coming.

I realize with fear what I am sure all parents who have gone before me also realized. . . in the same desperate way. . unable to fix the problem.

There really is no such thing as comfortable with cancer. There is only as comfortable as possible.

Fuck

And even in her suffering state. I am not ready to let her go. I feel terribly guilty for that.

My last ditch attempt was to try to her to pee laying down in bed. I laid a towel an wrapped one arond her.

it worked.

Twice. The send time we both slept through it.

The first time I held her on the toilet last night she changed positions. She uses her good arm to throw her bad one around my neck to hug me.

thank you Jennifer

She told me. . . ” I love you Mommy”

all i said was “i know” . . .

because I really truly do.

She said it again. And asked me to stay with her.IMG_3764

I promised to. To not leave her except to make meds, pee and nurse the baby to sleep.

Dr. Partap said often they wait for the alone moment to die. For the parent to pee or sleep. I think she just might gift me her last breathe.

But i am trying to prepare for it not to happen.

Every time i come back to her my throats seizes. . .

. . . and then I watch her inhale.

Today she woke suddenly. Wanting to do something. By the time we settled on coming to the couch she was back asleep. But she asked for Daddy too.

I watched the sun grow outside the window with them.

…and now I simply watch her. . .

inhale.

IMG_3759

 

75 Responses to “inhale”

  1. Thank you for continuing to post, Libby. We are all here with you in support. Please JLK, please let your mommy be with you for your last breath. She needs it. She deserves it.

  2. You will remember every minute and one day the memories won’t hurt so much. In the meantime, you’re being the best mommy that anyone in this situation could possibly ask for. It’s ok to be scared, it’s ok to be mad, it’s ok to curse everything you ever once believed in. Eventually, down the road, your happier memories will fill that hole in your heart. Trust me, as much as that seems impossible right now because you are trapped in the horror of knowing you’re losing your baby, it will happen…one day.

  3. I’ve just come to your blog a few days ago and read the whole thing. I do not have words for how sorry I am that you are losing your beautiful JLK. Your blog has been a gift to me in stopping and appreciating my own blessings. My daughter has the same Hello Kitty pajamas as yours does (she’s seven) and it hit me so hard to see her in them after seeing your JLK in hers. I am trying to live in each moment with my daughter in honor of yours and eventually in memorial to her. You and she have gifted that to me and the world. Take some solace in that.

  4. I am so sorry this is happening to you and your family. Your daughter is so brave and even in her short life she has made such an impact on so many. You are incredibly brave and I am praying for you. Thank you for sharing your story. I admire your courage. I’m here with you.

  5. As a mother with 3 small kids of my own, reading your story breaks my heart. You are living my worst fear in the world. But as you hold her, I pray that God makes every single moment for your family special, that the good moments will take up your days when she is awake, and that you get those final moments with her. My prayers are with you and your entire family.

  6. I’m truly sorry for your pain, and as I read and cry, wishing I could ease some of that pain! Vent you’re not alone! I cry for you, I’m angry for you, and I fear for that day… I see her beautiful angelic face and it breaks me even more! She has become one of mine… Praying for peace, strength, and resignation but still hoping for a miracle!

  7. These memories too will be precious. The intimacy of them. It is so hard to let go. I felt that way with my mom. I knew it was selfish but I didn’t care. She had to ask me if she could go and even then my true feelings were “no!! No you can’t go!!” I was in the front yard standing in the sun when she passed, just yards away. I struggled with the fact that I wasn’t there but I know now with confidence that she needed me to be somewhere else because she knew I didn’t want her to go and she loved me too much to leave me. I can imagine something of what you are going through. And I also can’t imagine it at all. But I feel for all of you so deeply. And I send all my love.

  8. A FB friend of mine shared your blog and I have been catching up on it. I don’t pray often but your beautiful baby girl deserves the world so the least I can do is say a prayer for her right now. God bless her and your family and give you the strength of the world.

  9. As I read your post last night I couldn’t sleep. I cried for JLK, you and your family. I just want to say that you are a strong amazing woman. I can’t even imagine what you and your family is going through. Through it all, from your blog ,u remain strong for your little girl and your family. I pray everyday for your little girl to be healed. And one day she will. We love u and your family.

  10. I started reading this blog just a short time ago through a friend, but I wanted to know, I’m praying for peace, strength and healing for all six of you.

  11. I read your blogs, every single one, and I cry with you, and get angry with you, hoping to take on some of your sorrow… To help in some way… I hug my kids a little longer now… savor the good and bad times… and the thought of you, Jennifer, and your family always crosses my mind when I am with them.
    My 21 year old nephew is also fighting for his life… We fight cancer too… His is called Rabdomyosarcoma… Fuck cancer, its what we say, its our motto… It helps to get mad when there is not much else you can do. I will keep reading, and I will stay angry, and I will advocate and fight… For you, for my sister and nephew, and all parents. My heart and thoughts are with you always…

  12. I do not know you personally, but I just wanted to let you know that I have been following your blog and you and your family are in my families heart and prayers.

  13. It was only a few days ago when I seen a post on Fb but I have read everything you have posted and You are the strongest most well spoken advocate I have ever come across! I have attempted to type so many sentences here but the exact words just can’t come to fully explain how truly remarkable your family and friends are! Libby, You are the most beautiful soul inside and out that I have ever got to know. I hope that if I ever have a situation where it takes grace and strength, courage and love that I can remember the way you handled all this and follow your example. I so much envy how you cope. Jennifer is so very blessed to have you for a mother and I believe God gave her the gift of you as well as you the gift of her. I will pray daily for the whole family. Sending our love.

  14. My husband gifted me his last breath. I think of that moment often and I’m so thankful for it. It was his last gift to me and i am forever thankful for it. When we meet again in heaven, i will thank him face to face.

  15. Thank you for your candor about living through such an ordeal. My thoughts and prayers are with your family during this time.

  16. Oh my prayers goes out for Jennifer and the rest of the family. I’ll pray that when the time comes, JLK will go in peace and the family is given peace too. She’ll go and be a beautiful angel looking over you all, Lynn. She’ll be in a much better place. God is good.

  17. I am praying for your daughter and your whole family. She is beautiful, I don’t know what to ask of God for her but I will pray that he takes care of all of you. I am so sorry that you have to go through this.

  18. God has his big arms wrapped around her….and you. When she passes you will have an angel who will call you by name. Praying for your peace and sending much love to you and your family.

  19. I have been where you are….3 years ago. You are doing it right to savor every single moment.

    ps for us the urine retention was from Dilaudid and our daughter could not relax her bladder sphincter. An in and out bladder cath can give tremendous relief… just a thought.

  20. Libby, I am sending so much love and prayers for you guys and I read each entry with tears flowing. You are an incredible mother, incredible. I was thinking, I know she hasnt been able to eat and you may think I sound crazy but maybe she could digest some pumped milk? Or milk frozen into a popsicle and that would give her lots of nutrients and goods from mama. Just a thought, I pray every day for you all and thinking of your precious girl all the time. oxox

  21. Libby, if your strength in sharing your feelings thru your blog are any indication, you will get thru this. It may not be pretty all the time, but you better than any know that mother hood is not pretty. You and Tony will ALWAYS be her parents and she will ALWAYS be your daughter. Being in the presence of someone dying is surreal, special, and awful all at the same time. I wish you strength.

  22. I do not know you yet I feel like I have known you my whole life just from reading your blog. My heart aches for you, your family…for Jennifer. I can tell from your words that you are an amazing mom, the love you have and dedication to your family is inspiring. You deserve so much more…life is not fair.
    Please know you are all in my thoughts..everyday. <3

  23. thinking of you all, constantly… no one should have to deal with what you are dealing with. wishing you strength and peace.

  24. You are living every parent’s worst nightmare. You are a wonderful mommy to that beautiful little girl!

    I pray that when the day comes for her beautiful soul to go to heaven you are there when she takes her final breath as you were when she took her first breath.

    Lots of pictures, lots of hugs and unending ” I love yous”.

    I pray for eventual peace and comfort for Jennifer, yourself and your family.

  25. I have read your blogs and it breaks my heart. I cannot imagine the pain you and your family are going through. Yet through it all, your strength and determination to find a purpose prevails. There are no answers and some say everything happens for a reason, an explanation for something that just cannot be explained. But if we can find some bit of good, what I have gotten from your blogs is the need to savor each moment as if it were a gift, because it is. I have an 8 yr. old boy who is silly and loud and 100% boy, and in the moment that I have just about had it, I think about you and realize how lucky I am. To have my boy. I am so sorry you are losing your girl. Your sweet little girl. It is not fair. It is not o.k., but yet it is still happening. My prayers go out to you and your family. May you all find peace and the continued strength to get through this. So many of us in Gilroy have you and your family in our hearts.

  26. I’ve seen a few of your posts from a mutual friend, and I just wanted you to know that I am following and praying for you and your sweet girl. Lots and lots of prayers.

  27. You have the right to feel whatever your heart dictates- scream, sob, laugh, or be silent… Grieve or be thankful… Or do it all at the same time. This is your child and she loves you dearly . What an incredible gift you are giving her- you brought her into this world, cared for her, and are lovingly easing her way to heaven… What an incredible blessing… You are an amazing mother.

  28. Once again, you have written words that are truly eloquent. No one cares why you blog but we are all so very thankful you are able to as I really believe it will help you even when this road has ended. You will always remember and if you every start to doubt that you did everything you good to make Jennifer’s life and it’s end the very best it could be, the blog will show you the proof that you did it all and then some! Been thinking about you all day yesterday and today and wishing you peace.

  29. Libby, I admire your courage, your strength, and the unconditional love that you have for your beautiful daughter. You are both angels in my mind.

    1. Are came suddenly for us too. We always thought she would go when she was alone, it took my Dad cuddling her and my brother and I being sound asleep before she left us. JLK will go when she is ready and not a moment sooner. I am praying for comfort for all of you. I wanted to tell you this as it brought me comfort when my mom was dying. The fact that she isn’t eating is good, her nerves are dehydrating and so she is not in as much pain. One of our nurses told me that, it got me through those last few days. You are all in my thoughts and prayers.

  30. Fuck, fuck, fuck, fuck!!! Sorry, but that is what I feel when I read your blog. I feel mad, and I want to say fuck. Much love Libby. Much love and strength to make it through this…and when you feel you can’t, fuck always helps, a bit.

  31. I just found your blog. I was stunned to see how much your beautiful Jennifer looks like my beautiful Raylee. My sweet girl also has a brain tumor, Glioblastoma Multiforme. She is on hospice, at home, and I too watch her breath, look for those breaths. I’m so sorry your sweet girl has to go through this! Love and hugs!

    1. I am so sorry. Laura. Its horrible. And for me so eye opening.. I truly had no idea how little is being done for pediatric cancer.

  32. I went to high school with Ann. I’ve followed your blog and it absolutely crushes me. Jennifer is so lucky to have the parents God graced her with.

    Not sure how many people could handle this so eloquently or bravely. We are praying for all of your every day.

  33. I’ve been thinking of you and your family a lot. You don’t know me, but you have touched my life so deeply in telling your story. I have been bearing your pain, carrying it with me each day, feeling your sorrow and in turn savoring my moments with my son. You are the bravest woman I know and your daughter is even braver to face such a difficult fate. I hope with every fiber of my being that you find peace in these quiet moments with her. And that she finds bravery from your support and love.

  34. Kranz family, I saw your struggle through a friend on FB last week and have a 6 yr old of my own and a 4 mo old as well. It pains my heart to read what you are going through. I pray everyday several times a day that Jesus take away JLK’s pain and suffering, that he take away your pain and suffering. I pray that He bring healing to your family.

  35. Love and prayers for peace. Thinking of you always. I actually called someone at school, “Libby” by accident. Your family’s on our minds and hearts. xoxo

  36. Unbelievable parents. You guys are incredible. We weep for you and Tony. For Jennifer. Our hearts are with you.

  37. You have always been Jennifer’s advocate and always will be. She knows that as do the rest of us. Fervent prayers are continuing your way. We stand beneath you to hold you up, beside you to keep you steady, behind you to keep you going, and ahead of you to let you know we’re here for you along the way.

  38. Libby, I just can’t believe it. I don’t want to believe it. I read everything you write and I think of how strong you are. But this is just not fair to any of you. You are touching many with your blog but it’s yours, for you. Enjoy your time as much as you can. Thinking of you a lot.

  39. You are doing an amazing job, and so is she. I think of you all every day, and hope you can feel the love being sent from your old LMSV08 group to you.

  40. You are the best Mommy in the world!! With all my heart and being I am sending you so much love, prayers and strength and a whole lot of angry “fucks!!!” Pardon my language on the reply.

  41. Dear Libby, Tony and our Glitter girl. I am amazed at your strrength and hold you all in my heart every moment of every day. I pray for an wasy day, followed by an easy night where you can be together and know the love and spirit of life among your family. You are loved and being cared for by more people than you know. While we do not/cannot feel your grief, pleaee know that your pain is ours…and we ache for you. You’re right…some girls have glitter in their veins…and we are proud to know one of them… take care.

  42. You, your family and your sweet JLK have been with me, in my thoughts and my actions, all day. I pray for you and your sweet baby girl, pray for the pain to be taken away and for some sort of peace in all of this. You are an amazing warrior mama and I am in awe of your incredible strength and you faith throughout all of this. I will continue to keep you in my thoughts and share your story.

  43. Libby you already have raised awareness and I know you will continue to. Jennifer chose you and Tony for a reason just like you were blessed with her. Love you and your family

  44. Just not fair. I’m so sorry you are going through this. I will continue to share your story and bring awareness. I am a single mom of 3 young boys and we are praying for you. Please continue to share your life with us.

  45. I’m so so sorry for your hurt and pain. I know this pain too well having watched several young siblings die what seemed like slow deaths. It’s been 10 years since the last one died and yet your posts bring back the flood of memories as if it was yesterday. The last days are incredibly painful preparing for the end. My heart aches for you and all those who love Jennifer. The Bible passage I clung to the most during those times is Psalm 121. I’m praying for God’s strength to sustain you and His peace that passes all understanding.

  46. Libby, I’m friends with Julie Carnesi, Melissa Rainsford, and Casey Wilson. We have been thinking of and praying for Jennifer and your family often over these past few months. My son Judson, now 4, had a brain tumor removed 1 1/2 years ago. Your family’s story hits very close to home. Judd asks about Jennifer often. You are doing a great job caring for Jennifer and your family. I have no words of wisdom or encouragement I can add, you’re already walking it. Blessings and Love.

  47. I do not know you or your family, but I almost feel like I do. Your account of what you are experiencing is so raw and personal. I just… Can’t believe what you are going through. I don’t know if I have ever wished so hard for a complete strangers peace than I do for you, your family and Jennifer. I think maybe I feel a strange connection- I am Jennifer as well. Oldest of four. Two brothers in the middle and a little sister. I hope you feel some comfort in the fact that she will soon be free and always be with you. You are a wonderful mother- don’t ever forget it. I can’t believe how incredibly strong you are. I am praying for you and your family and your sweet baby Jennifer.

  48. I could not help but think of you and Charlotte when I read this blog post… I am not sure if you have ever heard or read Ann Voskamp) but if you have then you know that Ann lost her older sister as a child. This blog is about her and her mother who held that precious little girl on the day she died. The photos and the message offered some comfort as I thought of you and Charlotte (and all of your family). Not sure if you have a few moments but if you do….

    http://www.aholyexperience.com/2014/02/why-its-good-to-be-a-loser-this-is-how-you-win/

  49. I do not know your family, but I have been reading your story. I’ve shared your plea on Facebook and I am praying for all of you.

  50. Your sweet Jennifer and my daughter Sadie went to preschool together. She saw her picture while I was reading your blog and said “Jennifer was my bestest friend in school”. I just wanted to tell you that she (and your whole family) have been in my thoughts and prayers so much lately. My heart breaks for you. Thank you for reminding us all to cherish the small moments. Praying that you and Jennifer will have peace and comfort.

  51. We cry with you, we pray with you, we are angry with you, we love your sweet JLK with you. Although I’m sure it must feel that you face this alone, please know we are all here behind you, holding you and your family in our hearts.

  52. I cry with you. Your journey is so similar to mine with my six year old son, Sam, losing my beautiful first born child to Ewing’s Sarcoma. Ten long years without him. I pray for your daughter, your beautiful, sacred child. I must thank you, too. I carry such horrendous guilt. But you wrote TWO things that have alleviated it a little. The part when you wrote that even in her suffering, you can’t bear to let her go. I felt that way also, and have labeled myself a selfish, horrible mother. Thanks for helping with that guilt. And then the part about leaving her alone, and the Dr. commenting that that is when they choose to die. My son waited for me to leave his side and then he died. I am crying right now because the guilt is still so heavy. But maybe the doctor’s right. Maybe it’s what he wanted. Anyway, thanks and God bless your daughter and your family.

  53. I lost my son to brain cancer too. I also didn’t want to let go and I felt/feel guilty for that. But our kids understand and know that it is our deep, unending love that makes us desperate for them to stay. I’m a year and three and a half months out. I don’t believe it gets “easier” but you do learn survival mechanisms. I am so very deeply sorry for your pain. Blessings to you and your sweet little girl.

  54. This is Matt the Executive Director of The Young and Brave Foundation. I just wanted to say that all of us here are with you. Sending good vibes, prayers and everything else throughout the day. You are not alone in this, although it may feel that way, please know how may people love and support you.

    Matt

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