Read personal stories from our founder and Jennifer's mommy, Libby, along with other Warrior Moms and news from our Unravel team.

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Mrs Barbara Bush

April 19, 2018

 

Did you know the former first lady lost her little girl?

When she passed away.. (ok the day before I was the dodo that saw the one erroneous posting and shared it!) .. I was overcome with emotion. So happy for her.

In such awe and also such fear.

Awe for the impactful life she was able to lead after losing her daughter. For being the wife of a president and then raising one. If she could do that I can do this.. And for being brave enough to share about her daughter in the days when that was taboo..

and fear..

She lived so long. So long in such heartache. Its only been 4 years .. but its tiring.. Its a grind. The always present undercurrent of missing Jennifer.. Its seems impossibly daunting to keep this up for another 60 years..

And then the immense guilt over that.. Over feeling like I should be able to completely disconnect from it by now and just absorb how lucky I am for her wonderful 4 younger siblings.

But I have read article after article about her.. And even had one of my brothers so sweetly call me yesterday to read me from Bush sr memoir so I could know more about Robin..

*** very important side note.. wanna know how to help .. make that call .. take that risk that you will be shut down. It meant the absolute world to me that my brother saw me post about Mrs Bush’s reunification with her daughter and called to read to me.. those moments are what truly help.. What make the grind survivable .. especially as time marches on***

I can’t help but draw so many similarities to us and this famous family.. She was quoted as saying the death of her daughter is something she never got over, but she felt her love around the family throughout the years. We can’t touch her, and yet we can feel her.

I do. I feel Jennifer. I have to be strong enough to allow it though.. and thats hard for me lately.

At the beginning of the excerpt my brother read to me said they were told Robin had Leukemia but didn’t know what that was.. And I was shocked.. I couldn’t imagine not knowing what Leukemia was.. And that it was so immediately terminal But by the end of the call it had hit me..

We sat in a tiny room too.. And we were told a diagnosis we had no idea the meaning.. or the terminal price tag. We were both given the option to try something that wouldn’t save our girls or take them home and love them.

We both tried. We both lost.

 

‘I truly felt her soul go out of that beautiful little body. For one last time I combed her hair, and we held our precious little girl. I never felt the presence of God more strongly than at that moment.’  Barbara Bush

I never have felt such love and warmth.. God .. the way I did as I held Jennifer in her final hours. I have struggled HERE trying to explain it to my own children.

And they also donated their daughter to help other kids that would follow..

‘It wasn’t hard. It made Gampy and me feel that something good is coming out of this precious little life. And today, almost nobody dies of leukemia.’   Barbara Bush. I do want to note here that so many parents that have lost their children to leukemia do not agree with this quote.

But here we part ways.. the day we donated Jennifers tumors was very difficult to do.. Leading up.. I knew we would. We had to. But the day of.. it was so much harder than I imagined it would be… but we did it.

Because of their generosity the terminal prognosis of leukemia has changed.. And that hope that just came out from Stanford. . Means just maybe… just maybe before join I Jennifer I can say those words about DIPG.

In an interview in 1994, she was asked if she ever got over her daughter’s passing.

‘No,’ she responded, adding ‘And that’s okay too, but its true she is a happy part of our life now.’ Robin to me is a joy. She’s like an angel to me, and she’s not a sadness or a sorrow

i will never get over your death

and

i will never quite the grind

because i will get us to the happy

 

… until there is a cure..

 

  1. Doris says:

    The parallels are amazingly painful Libby. Your sweet girl is remembered and so is your sacrifice and work. Jennifer will guide the way to a cure.

  2. Kristen says:

    Thank you for sharing, Sending love & strength your way. I will always remember Jennifer!

    xoxoxooxox

  3. cindy friederichs says:

    Love your family so much. I will always be active

  4. Dana Hart says:

    I don’t know you or Jennifer, but I do know people that do. I have followed your story, for many reasons and throughout the past few years you have been an inspiration to so many of us. I have not had to endure your pain or situation, which to me is unfathomable, But I have had to endure loss, heartbreak and helplessness – in my own life and others around me. Being able to cope with any of that,
    you need guidance, support . . understanding. You have have been that and so much more to so many.
    Thank you for doing everything possible to bring awareness, strength, comfort . . . and more importantly . . . hope, to so many battling the everyday fight. We are thankful for your strength and perseverance . Until there’s a cure . . . ?

  5. Tricia Kilian says:

    I saw the break through from Stanford and I too, was one of the many affected by your beautiful daughters story. Her cousins go to school with my boys and so, our beautiful worlds and families are connected . I also have (2) other friends who have lost children to Pediatric Cancer, and 1 family has Fluttered” us multiple times in memory of their daughter. I admire your fight; I feel your pain through your words, and please know that even though we are strangers we are deeply connected by loss and love. Thank you for all you do; it truly matters. For JLK and so many children fighting…it truly truly matters. I pray for a cure; these children deserve better…they deserve a cure.
    Love to you and your beautiful family ~
    Tricia Kilian ❤️

  6. Jennifer says:

    Sending strength to your family always?. Keep doing what your doing Libby- you and your sweet girl are on the road to a cure for this monster. LOVE4JLK always❤️

  7. Crystal says:

    I’ve been reading about the breakthrough. Keeping my eyes on all things dipg, Jennifer is at the heart of it all. I’m so proud of your family and your daughter. She’s fought a long time for a change, through you. I’m hoping, like the initial results were better than expected that during human clinical trials they will also have great results. Jennifer’s never forgotten, your families sacrifice to ensure her tumor was harvested at a time when you only wanted to hold on to her is never forgotten! This possible treatment has come at a high cost, and it took too long to get here. We love and appreciate everything tv’s Kranz family has done!

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