Angry

Today was hard.

Will I ever not feel that way?

So much of today was spent talking with nurses, pharmacists, and thankfully our great docs. Her oncologist from Stanford cried with me today. I don’t do that. I am a private crier.

I have a need for Jennifer to eat, at least one more time. She might regain some of what she lost. She is hungry, but scared to eat. So tomorrow we start fresh to try to get on top of this awful vomiting and nausea. I hope to get her to eat. At least with this new plan I’ll know I did everything and didn’t just–this isn’t the right word– “quit.”

She hates meds by mouth. Always has. So tomorrow we try a new path. I know it’s only been a day, but when time is this limited, when a tumor is this hungry and fierce, a day is more than enough.angry1

I am advocating. I’m trusting my gut. I have no regrets today in any of those areas. I write that so if another DIPG parent, or parent of a terminally ill child, reads this, they’ll do the same. Voice. Advocate. Trust yourself.

I do regret that it took so much time to do it, though. I missed her day. This gift of a day: I missed it. My hope is that I missed it to ease her suffering and pain later. . .

our far-too-soon later. . .

If missing her today can equal her comfort, it was a worthy trade.

The boys came home tonight. But it’s harder than we expected. In her small periods of happy times we couldn’t just be in the moment with her.

Tomorrow, a new game plan. One of them being the talk with our older son. At a ripe old age of 4, he’ll hear the truth of death. That sometimes people’s bodies stop working and bad cells take over good cells. Which ultimately means sometimes children die, though we hope not to get to that level tomorrow.

All trying to do so in a way that won’t scare him. . . or make him feel guilt that he did this . . . which is the thing that any 4 year old would feel . . .

Today I realized I am hitting the angry stage. I had felt we were so lucky to know we would be losing her. Gave us time, nine months, right?…to plan so many life experiences. We talked about all the things she wanted. We wanted. Jonathan wanted.

But now we don’t have the time to do those things.

Not with her. Maybe we will do it together for her . . . maybe that can be a gift she gives her three younger siblings.

A lot of people wonder why this happens with a good and loving God. How this makes them not believe. For me, it’s fairly simple. . .

If there is no God, then I will never see her again. I refuse….I CANNOT…..survive if I believe that.

And I look at it like this. I love my kids. A lot. But I say no. Even to what is their deepest and truest hearts’ desires. They may never understand the reasons I say no. They may rage against my no. But I still say it.

I believe in God the Father.. and like all parents he has to make choices for his children .. even ones that our children will never understand. 

This is my God; this is what He is doing now. I will never, ever understand his why (but I believe he has one), and even if I did . . .  his why would never be good enough.

I am raging at him. I think he is a huge dick right now. A total asshole. And wrong . . . so very, very wrong.

But I will still love him.

As I hope my children will when they think I am so very, very wrong.

I will wake up when my youngest calls for me to feed her. I will wake my oldest to give her medications.

For those things I am grateful.

Many people will be thinking of us. Praying for us and crying for us. Giving to us.

For this I am grateful.

. . . and so angry.

 

 

morning

 

 

39 Responses to “Angry”

  1. I am angry with you. Because this is unfair… because of who he hurts… because of what is stolen… because it makes no sense… because it happens THIS way… because there is no miracle.

    But I will love him too. Because I have to. Because I even need to. Because you love him.

    1. I’m angry – hurt – confused – frustrated!!! But I love the Lord with all my might. I believe God allows us gifts of others coming into our lives for a reason and when there work here is done he removes them. Some our taken home to him some just move out of our lives and into another’s. Either way they move on. I don’t know what Jennifer’s mission here was but I believe she accomplished it so he is taking her home. I’m selfish and HATE it!! But I have to believe he loves her so much to it’s his turn to be selfish! :'( your in my constant prayers Libby!! I love all of you and will be praying always!!

  2. Oh sweet Mama! My heart is aching so much for you and your family! You are in my mind always. I have no words of comfort to share. This does suck and I am so angry too! I am sending you all my love and keeping the 6 of you surrounded in constant prayer.

  3. It’s sucks. I always ask God why!? Why do u allow this? Especially to such a beautiful little girl? I pray that God can use this horrible situation and turn it into something beautiful. We love u and your family.

  4. I think it’s so important to walk through your anger just as you are doing. Not pushing back or hiding from it. God can handle it, he is strong enough to bear the weight and one day (maybe not for a while and maybe in baby steps) he will draw you close and whisper in your heart that He will bring beauty out of the ashes. That his love never fails. But until that time, he is a safe place to take your deepest pain. Christ was allowed also to suffer, Gods own son! And through his suffering we were redeemed and we have a Saviour that understands personally what grief and pain are and he can bear that burden with and for us.

    I’m so sorry friend, praying that you will get more good days with her and that she can be comfortable during this time. I pray that you will have a heart of peace and without regret, knowing you made the very best decisions for Jennifer and all your children. You are one tough, smart, kind and loving mother.

    Lindsey

    1. What beautiful words Lindsey! Libby, you are in so many people’s thoughts and prayers. I ditto what Lindsey said. You are being embraced by everyone’s good wishes for you.

  5. This is going to sound over the top religious. I get what your saying and I agree. Faith is just that, faith in the unknown plan. I don’t feel like God can choose this for you, I don’t even know he can stop it because surely he would right ? I just believe he’s there to show us to live and love through pain and suffering. He after all couldn’t save his own son, he knows this pain. I’m angry too. I am also thankful you have your faith. The faith that will let you know you WILL see JLK again. She will be with you, forever. It’s a blind faith, but it resonates in us for a reason. God will lead you through this. I am praying for you every step of the way.

  6. Hi, You don’t know me. I was introduced to your family through Ava and the photos and links she has posted. I read your blog – all the way back to in the early stages. And I cried for you…with you… I just wanted to say that I think you are doing all the right things for your family. Even though you were dealt a shitty card, as you said, you are doing everything you can to make these final months, days, hours, the most happy and comfortable and full of love for JLK – and for your other kids. I’m so sorry for what all of you have had to go through, and the final decisions and heartache you still have ahead of you. I just wanted you to know that. Your story has touched my life, all the way out in Boston. Please stay strong. And don’t feel guilty for being angry. You have every right to be.

  7. I wanted to hug you and yell “YES!” with you when I read “his why will never be enough.” Amen! Sometimes, the explanation for our unimaginable pain can NEVER be made right or lessened by an explanation or reason. And trying to come up with reasons just seems to make us angrier. Thank you so much for putting words to that feeling. You are amazing. I’m just praying for peace daily so you all enjoy each ‘today’ and don’t miss a single one out of anger or sadness or grief.

  8. When our beloved dog, Mocha, died last May, we had our 4 year old son there when the injection was given in the yard, on her favorite bed, in the sunshine. He still remembers it, but not in a horrific way. He talks about what a good friend she was and how he misses her. And now he puts plastic gemstones on the place where she died and draws her pictures.

    We really debated about how much exposure and information he could handle. But we asked him if he wanted to be there or if we should do it during his nap time. And he chose to be there. He is a wise soul and we trusted him.

    Please, please do not think I am equating your dear Jennifer with our Mocha. I have only lost a dog, not a child. I just wanted to let you know our approach to death with our 4 year old son. It’s OK for them to witness it. It’s OK to cry together. And whatever you choose as a family for your other children’s experiences to be will be the best choice for you.

    I also remember so vividly that we thought we had weeks with Mocha once she was diagnosed with spinal cancer, but it was just days. The decline was so rapid. We were in shock. Each being’s death is so different. When she would no longer even take chicken stock by syringe to her mouth – completely stopped any type of eating or drinking – I felt so helpless and sad. I can not imagine how magnified that pain must be for you.

    Thinking of you guys and wishing this was not what you were going through. Wishing you just had the normal concerns of parents with normal problems. You did not deserve this. Jennifer did not deserve this. I am so sorry.

  9. As you know, I am there with you in spirit and here if you need to talk. I am so sorry you are going through this. I’ve been there…and I know how empty the sorrys seem. So what if people are sorry…your child still has to go through this…your child still has to leave you. I know. I get it. I will tell you one thing. Because I am his mother, I know my little boy is ok now. My mommy instinct is strong and fierce, and I KNOW without a doubt that he is peaceful and happy now. I feel it with all of my heart and soul. So I can tell you that your little girl will be ok too. She will be watching over you and waiting for you. But that doesn’t make it ok. It will never make it ok. Jonathan will be ok too. You are doing it right, and he will understand much more than you think. Big, big love and hugs going out to you.

  10. I read your blog for a very simple reason. I don’t want you to go through this alone. I want your words and feelings and experience to be heard and read and prayed for. This has to count. If I read your pain then you aren’t alone. Everything counts. I can never do enough or be enough to help you. It’s so damn frustrating!! In the middle of all this there is so much love. That’s the miracle. That love can be found in the middle of a nightmare. So many of us wish that we could remove this for you. Thank you for putting words to your pain so we can try to understand.

  11. This is not fair. And I wonder why and question God for you. Your perspective oddly helps me in my own life… Your gift of sharing your journey is affecting lives in ways you may never understand. May you find peace in the midst of your understandable anger. God bless all of you.

  12. Libby, I am angry for you/with you. It’s not fair, not at all. I am so impressed with your attitude towards this journey, and I am sending you all the strength I can to get you and JLK and the family through this.

  13. Love to you all~so much.
    “Without suffering there’d be no compassion.”
    The quote that has reminded me of my faith in the hardest of times.

  14. Praying for you today for God to show you the way to “explain” this to your son. I pray that he will wrap his loving arms around all of you and comfort you. I pray that your younger children will always feel comfortable to talk to you or God about what they are feeling weather it be good or bad from this day forward. That this whole tragedy will NEVER let any of you grow apart but to ONLY grow CLOSER than ever before. I pray for Jennifer to have peace and happiness and to feel the LOVE that surrounds her… and may that bring her comfort.

    AMEN

  15. Angry and crying with you now as I read this. From one Mom to another this all scares me and strengthens my will to be a good loving mother all the time because time is not a given. I hope you are finding some peaceful moments knowing that your daughter is experiencing love beyond what some children will ever experience. You are amazing and inspiring with all the balancing you are dealing with. We will be praying here in Tennessee!!!

  16. You are all in my prayers, daily. I am a true believer that God is good, but with something like this, it is so hard to really trust in his plan. I hope and pray that God brings you peace, understanding, as well as the right words to explain things to your son, so that he can understand what is going on. It breaks my heart to see this happening to you, and I am truly sorry. I will continue to pray for you, your family, and for a miraculous healing for your beautiful daughter.

  17. I’m so sorry for the hurt and pain you’re going through. He is crying with you all, and for you. He feels your pain. I’m sorry He hasn’t chosen to take this from each of you. He has promised so much, yet we wait to see those promises mostly in eternity. It’s just so hard to see and feel that love and those promises in such painful circumstances. Praying you experience and feel His love in a very real way as you walk through this dark valley. See Him taking you by the hand and leading you through it. Praying for you, your beautiful daughter and the whole family.

  18. Art and I continue to pray for Jennifer. I know children don’t understand death and believe they will get better and honestly I wouldn’t know what to say to a four year old or dying seven year old so we pray God will help u with the right words. I don’t believe God chose Jennifer to get sick but he knows sorrow and pain from loosing his own son to this cruel world. The bible describes Jesus bleeding from his pours. God knows Jennifer’s pain and yours Libby and I know you are angry and I don’t blame you. I do believe that God gave Jennifer to your family because you are strong enough to do the right things for Jennifer and your other children. Know that he loves you and Jennifer so much and she will be going into his loving arms from yours. I pray that knowledge brings some comfort. We continue our prayers for Jennifer and your family.

  19. I am praying for you all! I am so sorry for this pain you are going through! I just started listening to the book called “You’ll Get Through This” by Max Lucado! And what you said at the end made me laugh out loud! I LOVE that you called God a few choice names! Max says do that! Cry out to Him! Let God know how you are feeling! So healthy! I hope you find comfort and strength in His love for you! My favorite part of the book so far (first thing Max says on page 1) “You’ll get through this. It won’t be painless. It won’t be quick. God will use this mess for good. Don’t be foolish or naive. Don’t despair. With God’s help, you’ll get through this.” Remember the footprints poem. He IS carrying you!

  20. Anger is good right now. Feel it, embrace it, and let it flow. It will help give you the strength you’ll need later. My heart hurts for you.

  21. I cry for you, for her, for your other children. I can’t imagine what you are going through but I will think of you and hold hope for you all. Hope that one day you can forgive, I don’t know if I could but I hope for you. I hope sweet baby is peaceful and knows she is loved and not scared. I couldn’t do it and you are so strong. God bless you all and be present as much as you can.

  22. Libby, this is horrific. My heart is breaking for you. Because of God you will be forever connected to beautiful Jennifer. I think you will feel this. The bond between you will remain. The soul goes on forever. It’s hard to understand why God takes some angels way too soon. Love to you.
    Corrie

  23. Only the Libby I have always adored could make me laugh out loud through my tears…by calling God a huge dick. Love you, girlie.

  24. I keep thinking about this blog post…. … I imagine God about 7 years ago talking to the Angels… and saying, “well, here is a very important baby… she needs parents who have gone through a lot and who ReallyReallyReally want a baby, and will go through Hell to do what’s best for her because they will Love her more than even I think is possible, and then they will be tested. I need someone who won’t give up and won’t give in and will feel like they are breaking …. and will still work to keep her comfortable and ease her coming back to me because even though they don’t want to, they will know that I will keep her in the palm of my hands.” i can’t imagine this pain and how you will explain it to the other kids. I think it is healthy to be angry. hang in there.

  25. I am very angry too, but I also continue and will continue to love and trust in our God. I read a book called “When bad things happen to good people”. It helped me through a very difficult period. When the time is right it might be helpful to you. Sending thoughts and Prayers to all of you.

  26. God is a dick, and JLK blows a raspberry at him. I agree with the post above from Katie: only YOU, Libby. xxxoo. And also? The metaphor about God/us is like parent/child in understanding the why of a no? Brilliant. Stephanie is doubtless right that the sorrys feel empty–but they are so, so, so, so heartfelt. I’m *sorry* beyond any ability to express it.

  27. I had the priveledge of meeting Jennifer (and your two boys) almost two years ago through a mutual friend. I feel blessed to have met such wonderful people. I’ve been praying for your family ever since I found out…for peace and love to surround you all. You’re candor and courage are an inspiration to all parents.

  28. I have followed your posts from the beginning wondering how or when to comment. I have no wisdom in this. Only tears that fall silently on the other end of a computer. For you, for her. There is nothing more beautiful or powerful than a mother’s love. You remind the world of that each day.

  29. My heart aches for your sweet, amazing daughter and for your incredibly inspiring family. Words and prayers aren’t enough to take away any of your pain, but we provide them anyway. Your mission in life as a mother is much more difficult than many of us will ever have to go through, but we hold your family in our minds and hearts and can only hope to show our children as much love as you have shown for yours. Sending love, hugs, and prayers. (Fellow SFHS ’97 alum)

  30. Anger turns to tears turns to fear turns to outrage….turns to disbelief
    Miracles please for this beautiful angel who teaches us how to live…..
    Whatever I can do to provide a hand..all love, prayers and thoughts your way today, tomorrow…..each day moving forward xo

  31. This is both heartbreaking and a wonderful testament to your love, your faith, and your family. JLK is so lucky to have a mom like you. I know you are suffering, and questioning yourself, but speaking from the view of an “outsider” who is sharing your journey and praying for you all every day, you are a wonderful mother and you have done all you can. Don’t ever question that. It is normal to, but I hope God helps you have the strength you need in your heart to get through this and continue as a pillar for your family and for JLK. Also, know that there are people out here, people you don’t know personally, but who love and cry with you and your family.

    I wish I could give you words that would truly help the pain, or some answer that would stop this from happening. But thank you for having the courage to share your faith and your family with us.

  32. My cousin keeps sharing your blog and I just couldn’t read it. I have three kids, one of them a sunshiny girl just like Jennifer. It was too hard. But that’s bullshit. You are standing in this awful space and the least I can do is stand there with you. Be a witness. Pray.

    So here I am. Another Jennifer, praying for your girl and your family. Wishing you peace and love.

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