twisted

I spend a lot of time, a few hours a week going to counseling or taking Jonathan to a session.. But if it helps its all worth it. I think for us we are doing this the best way we can.. and we happen to need the help to do it.

My goal is that Jennifer’s death won’t be what defines us but was the catalyst to recreate us.. all of us. Something we didn’t need.. or want.. But something that did in fact happen to us. I have blue eyes.. I am 5ft tall. . and my daughter died. I want it to always be part of me.. part of us.. But not all of me, like it feels right now.

It’s scary for me to realize that truly we are still just in the very beginning stages of that recreation.

Last night Tony and I were talking about how much everything has changed for us.  How different it all is not just from when we had a healthy 5 yr old daughter.. but from when we had a terminally ill 6 year old daughter. How different the landscape of our relationships are from that point to now.

7 days before we learned about the time bomb growing in her head.
7 days before we learned about the time bomb growing in her head. So full of hope for our future.

Tony said ” There is no glory in this shit. This is where it is ugly”.

I’m selfish. I hate that he hurts in the same way I do but I appreciate so much not being alone in my outlook on this. That it is in fact harder for him right now too.. certainly harder than it was when she sick.. and so much harder than right after she died.

And how painful it is to look around and realize you lost so much more than just your child.

I say “ A sick child is easier than a dying one and a dying child is easier than a dead one.

Her last doctors appointment. 3 months after the last healthy picture was taken. ..we still hoped..
Her last doctors appointment. 3 months after the last healthy picture was taken. ..we still hoped..

Not just for us though.. for the people surrounding us too. I can’t say I understand why. I try to.. I want to. But I can’t. Because I haven’t been the bystander to such a wreckage of a little girl and her family.

I don't know if I believe in hope anymore.
I don’t know if I believe in hope anymore.

But it also makes us both so incredibly and deeply grateful for those that are here.. Standing by us.. with us in this time. .. The truly difficult time.

I still can’t help but wonder if it will ever get any easier.. any better. Because I look at more recently bereaved parents with a jealousy.

… how twisted my mind has become..

How hard it must be for others not in my shoes to understand.. Actually many in my shoes may not understand.. But I share.. just in case I am not alone..Just in case it helps for somebody else to know they are not alone.. Or to give permission that I understand those that look at me and are jealous that at least I knew it was coming. That I had the chance to say goodbye.

Once jealous of parents of bald children because at least they had a chance to fight.. now jealous of parents who recently buried their babies because I know they are still numb. I know how much worse its going to get.

Are other parents.. further out then me looking at me the same way??

…i don’t know how to be ok with this.

i don’t have to go on without you

for all the years

that I know i have to.

twisted4

..until there is a cure..

16 Responses to “twisted”

  1. Always in our thoughts…always in our prayers…always hoping for you to have the strength to have faith…always loving Jennifer and never forgetting her…always…until there is a cure…

  2. I think about what you wrote tonight, how a family could been destroy in a matter if 3 months, I pray so hard each night for not only you and Tony but for little Jonathan, even through I work in peds, and have seen sick children, this nightmare takes my breath away, I feel guilty sometimes because I’m so scared to think this can happen to one of my grandchildren, my granddaughter still remembers Jennifer everytime we go to Nob Hill, looks to see if she’s there, I’m truly care about you so much….I’m with you always Libby,I promise

  3. One more thing thank you so much for sharing Jennifer with us , all those beautiful picture are so heartwarming and bittersweet and oh so sad at the same time ….

  4. Such a great pic of the two of you- the bond that you share glows in each and every picture. I pray she sends you signs and gives you strength through this heartbreaking journey. LOVE4JLK

  5. I dont know how you do it. I dont know how any parent does it. But you do it with grace, compassion, and honesty. I admire you and your family. The Kranz family is never far from my thoughts, all seven of you. <3

  6. Libby, There is so much I want to write, but I don’t know how to put it in words. You are an amazing person! Someday, I hope you publish your journey and share it with the world. God Bless.

  7. wow, the awareness you have provided on your journey- that you never hoped to take- is incredible. love your insight. wish you didn’t have it. glad you are taking us with you, Libby…. we have your back.

  8. I can actually feel myself holding my breath as I read your journals. Like if I don’t breath it didn’t happen…..Do you do the same Libby?

    Love the last picture…my eyes were quickly drawn to Jennifer’s face and your/her ring.

    Love and prayers to you from Maine! xoxoxxoxo

  9. Hugs, Libby.

    So many of us think of you, remember Jennifer… tell her story. Just today I told someone about DIPG and Jennifer.

  10. I just wanted to tell you I think of you and your family and precious Jennifer often…I pray for you and read every. single. blog. Still here, still reading. You are amazingly strong.

  11. Just tears. and the same holding my breath as I read the depths of your soul. Wishing it never happened. Wishing you didn’t have to write about all these things. Love you all, love you baby girl Jennifer.

  12. I miss her still, even though I never met her. Hope is real, even though it didn’t pan out. The 22 yr old son of my college friends died tragically on the anniversary of Jennifer’s death (during a heart surgery – an accident at the hands of his surgeons). Hope remained for him too. God’s plan is beyond us. His parents surmised that he was so special that God wanted him now. I picture Jonathan Aldy playing with your Jennifer in heaven. Lucky’s….

  13. I will never stop grieving and remembering the loss of such a bright spirit.

    Thank you for this blog so we can share your journey from afar. And I know many grieving parents will find solace in seeing your journey. Love for JENNIFER.

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