more than that

We are so broken. There really is no other word for it. We all just hurt incredibly .. each in our own way. We went to see Jennifer’s spot yesterday. The boys just wanted their alone moment there to give her the rock they painted. They got out.. one by one and spent a few minutes talking and looking at all the things there.. And then came to the car.

I always go last. It makes Jonathan mad.. He wants to go last. But I have told him too bad. I am the Mom and that’s a mom right.. and I secretly hope with all of my heart that the work we are doing ensures its a parental right my son never receives.

I came back to the car and got inside the drivers seat and Charlotte let loose. Screaming no and kicking her legs. I got back out to check on her. She just kept pointing. I asked if she wanted to say goodbye to sissy and she shook her head yes.. over and over again.I got her out and carried her over, then she touched the headstone.. wiped away a little dirt and we headed back to the car.. she whispered looking back over my shoulder.. sissy.

Jennifer always comforted Charlotte.
Jennifer always comforted Charlotte.

No no no no .. everything in me wanted to shout at her. That IS NOT your sissy. But that is what she knows. Her big sister.. an incredible teacher and leader.. To her she is a granite slab and flat pictures… its the face around my neck that she grabs and kisses and then brings to my lips to make me do the same.

Even in her final days...
Even in her final days…

She is the best friend she will never know.

But somehow she does. Somehow in her little one year old mind she needed to get out.. to have their moment too. I really can’t even imagine how all of this sorts itself out in her head. But I do know this is a lifelong thing with our kids.  I know that at each ages milestones they will have new realizations and new questions.. and new understanding and new grief.

It must be so hard to be a child of loss.

I will forever hate that I couldn’t protect Jennifer.. but at least now I can know she is out of pain. But my other 3. My surviving 3 are destined to a life of pain and hurt I don’t quite understand but I see and I know is there.

I cheated Jennifer out of a lifetime but these still living children of mine.. them I have failed for a lifetime.

It’s a heavy burden. It’s a honest burden. I didn’t do anything to fight against childhood cancer until I had no other choice. Until I was told my baby was going to die.

I wonder if they will know. I wonder if one day .. they will forgive me. Maybe right before I go to Jennifer they will grab my hand and say its ok Mom we forgive you.  Then I can go to her lightened and get to hear her say simply. “its ok mama.. its ok.” Then I will finally be free.

..oh what I wouldn’t give to be absolved from these unforgivable sins.

This picture is backwards .. she should have been holding my hand .. I should be waiting for her in heaven
This picture is backwards .. she should have been holding my hand .. I should be waiting for her in heaven

I just hurt so much. So deep. I cannot believe any of this is real. But it is. I am about to experience Feb 13th.. again. without her. And once thats happens there is nothing more left..

I am scared for that. I am scared for time to keep marching on and for our story not to matter anymore. Because this first year was the unknown.. Next year is just doing it all again. Just every other day we have lived without her.. over and over again.

And I miss her. All of her. Because I am so similar to Charlotte.. I cannot remember the real her anymore. The healthy her is just flat. It’s pictures and granite slab, it’s her face hung around my neck.

im so sorry baby

because you were more than your cancer

more than your dying

more than your death.

i am trying to get back

to you.

more than

…until there is a cure..

25 Responses to “more than that”

  1. I pray for your family all the time, but I mostly pray for Jonathan who lost his best friend and Charlotte who lost her big sister before she really got to know her.

    But, know this…for so many of us strangers who have become invested through your words and stories and pictures, Jennifer will not be forgotten. She does and will still matter, as will this fight against cancer. It is not a fire that will suddenly go out. How can anyone forget her?

  2. I’m sorry but I just want to shake you…I want to make it ok and make the pain go away. Feeling helpless and hate that. I will continue to do what I can to unravel the beast. Wishing for you and your family to find some peace…until there is a cure

  3. Dear Libby,

    No words can heal your pain of losing Jennifer. She has the most amazing eyelashes and is so precious. God Bless you and your family.

    Jan

  4. Jennifer will NEVER EVER be forgotten. You, Tony, Jonathan, Nicholas and Charlotte will NEVER be forgotten. Jennifer will live on in all of our hearts. I think of her every day. I think about you all everyday. Jennifer has imprinted on my heart. I love you all ♡♡♡♡♡♡.

  5. Libby,

    I’m praying so much for you. You have weighted yourself with such a tremendous load of guit that you don’t deserve. You can’t be upset that you didn’t watch a st. Jude’s commercial. You are a loving mom of 4 & doing a great job taking care of your family. You were given an unfair fight. None of what happened is your fault. You just have a lifetime to think about all the “what ifs” & “why didn’ts.” I’m confident that Jennifer blames you for nothing & only knows a “Best Mommy Ever!” I truly believe with all my heart & without a doubt that she will play a role in curing cancer. I also believe that from the few video clips posted you can tell she was light hearted and truly enjoyed wherever she was and whatever she was doing. I have a feeling that she wouldn’t want your heart to be so heavy with guilt, but light hearted like hers. I know easier said than done & I have no business even writing this. It just breaks my heart that you carry so much blame and guilt for yourself…you are simply your kids Best Mommy!

  6. Oh Libby…..I wish I could tell you that it is NOT your fault, you did NOT fail Jennifer, that sometimes bad things happen to good people or children. You are NOT the person deciding how funding is spent. You had NO way to know until it was too late. I also know that you wouldn’t hear any of it. Survivors grief is the worst!! Unbearable sometimes!! I can’t begin to fathom the survivors guilt that comes with the death of your own child.

    Jennifer and you have made a mark on my life and I just pray for your comfort, relief and for you to feel absolved of your guilt. You advocated for Jennifer in the best way a mother knows how. I know she and her siblings don’t blame you, but you won’t hear anyone tell you that. Please try and hear that. Hugs from Maryland!

  7. Libby, I am so sorry for your guilt and sadness. It breaks my heart. It drives me. Jennifer inspires me to do more…spread the glitter…until there is a cure.

  8. Praying for you all. I can not speak for others but I can say, in this home… my home… Jennifer will never be forgotten!

  9. As a child of loss, grown into adulthood… Please hear me when I say that you are the best mamma your children can have. Misguided anger that young minds struggle to process sometimes appears, or even sounds like blame. But it’s not. You are the safest person for them to express, and sometimes take, that anger to. You are Mom. You are constant. And you are forgiving. Stay strong. Continue to fight the battle that comes harder at night. It is the hardest, and most unfair of battles. Though it may not seem like it, you are surviving with each kiss, each tear, and each expression of love. I think of your family often, and pray that you will forgive yourself. You have done nothing wrong. To us that are following your battle…to your children…and most asuridly to your husband, you are beautiful. You are Mom.

  10. Libby, my heart breaks for you! Jennifer will never be forgotten, she is the reason I will help spread the awareness, spread the glitter. You may never hear the words “Mom we forgive you” because you have nothing to be forgiven for. They knew you loved and took care of your precious baby and this was something out of your control…then, but now you have motivated all of us to fight, in Jennifer’s honor and for the children who fight today and the ones that will need to fight in the future. Bless you and your family..always in my prayers!!

  11. As a child of loss myself one thing I know deep in my heart is that when it’s someone’s time to go there is no stopping it. If it wasn’t cancer it would have been something else. I have a questionable belief in God but I know that fate is unstoppable. I hope one day that your guilt fades and that you truly hear that you have been and continue to be an amazing mother and an inspiration to many! You couldn’t stop Jennifer from dying because her fate was such and that is so incredibly wrong and sad and unfair!

  12. Libby, I have been thinking for a while about how to frame this coming year so that it can still be a first – the first year after the first year. Not knowing you personally, I hope this thought only brings you comfort. Peace to your heart today. xo

  13. Libby, no words. Just love and prayers. I think the reaction of your youngest is a testament to your parenting. You are so brave to share your deepest thoughts and you inspire us all to keep fighting. I wish I could be half the person you are.

  14. Libby, I know you don’t believe it when people tell you it’s not “your fault”, but it truly is not. It is EVERYONE’S fault, equally. Yours, mine, the cashier at the grocery store, the man riding his bike at the park…EVERYONE. You are no more at fault than anyone else. Nobody takes it “seriously” until it is their own child, or at least a child that they love. Your children will “forgive” you because they know it is not your fault alone. That is too much burden to place on only one set of shoulders. You are out here in the world trying to fix the problem, so that your own children will not have this horrible cancer take away one of their own children. You are making SUCH a huge difference in the world. I will tell you this: I have followed many blogs through the years…even a few who lost children to cancer or other brutal illnesses. I have never had one story impact my life like that of your Jennifer. I am drawn to the cause of pediatric cancer because of you. You are sharing your beautiful JLK with the world, making people who have never met your family fall in love with her. I care now. I have had my “bubble busted” and pediatric cancer is beating me upside my head in such a vicious manner that I could never ignore it. It could be my own daughter next. Or my future grandchild. You are making such a huge impact now that nobody could ever say you didn’t do EVERYTHING in your power to erase pediatric cancer from this earth. Jennifer will absolutely never, ever be forgotten. I think of her every day, many times a day. Your family is always in my thoughts. On another note, about remembering: I have the same problem, only it is about my mother. I can’t seem to remember her “healthy”, only on life support in the hospital or, worse, in her coffin. To me, her memory seems limited to flat pictures. The only thing that helps me is watching videos of her. As hard as it is, try to watch as many videos of Jennifer (healthy) as you can and you might have a mental breakthrough. God bless you, Libby.

  15. It makes me shake my fist at the sky that you ever think this is in any way your fault. You are a victim, the blameless victim who did everything possible to make her daughter’s life and death the most love-filled experience any child could wish for.

    1. EMailman is right, Libby. I know you don’t see it because you are living it and walking through the fog of loss; but you and Tony and the kids are all victims of the devastation of cancer, just as Jennifer is. Totally different but totally the same. I know these words of black and white wont (cant) change the way you feel so I am sending you as many uplifting, reassuring, FORGIVING thoughts as I can. There is nothing to forgive however, as you are an amazing mother, an amazing wife, and an amazing woman.

      Jennifer will never be forgotten and her story will always matter to me. Your story will always matter to me.

  16. Jennifer’s story will always, ALWAYS matter. We won’t forget, Libby. You don’t know me. I ran the race last year, and left a note on your windshield when we were in the same parking lot in Almaden. I wish the pain you are enduring would ease. This is tremendously unfair.

  17. If any of us mere mortals could solve the worlds problems or cure any of the many awful diseases, we surely would do it. But it is not possible because we are just one person individually. When a cause catches our attention or touches our lives we then choose to get involved if that’s what we feel we should do. We tap into the resources of others that are already involved and we do what we can to help. Those causes are different for everyone. Before DIPG took your child, you did not know about it. Not one person could say you should have known. Not even yourself. What your doing in Jennifer’s honor matters and although your precious baby will not benefit, others will. That does not restore Jennifer to your arms and that is unfathomably sad. But imagine many years in the future when you are reunited and Jennifer will know you helped. And your precious 3 living kids will know. And that will be a small measure of comfort. You are sad for all the lost years of Jennifer’s life, but if we are to believe in eternal life, Jennifer is not sad where she is. And I think if she could tell you a wish of hers, she would not want the best momma ever to be sad. I know that can’t be helped, but maybe, just maybe when time passes, her momma and daddy and brothers and sister will smile and remember the six years you shared with her with a sense of peace.

  18. Libby,

    I have been following your story since early on in Jennifer’s diagnosis. Your whole family has been on my mind, knowing that this date is looming and as you said, time keeps marching on even though everything in your body is screaming for it to stop, rewind and get your daughter back in your arms. I wish it were different. We have not forgotten Jennifer…she will not be forgotten.

    I got this blog post from another mother that lost her 5 yr old daughter to DIPG that had posted it on her page. She echos many of the same sentiments you have shared on your page.

    From Smashingwalnuts.org
    Whoever says that the “second” is better has never had a child that has died.
    As we enter into our second year without Gabriella I am finding it so much worse than the first year. We knew that Gabriella was going to die from the day of diagnosis but there is NOTHING that prepares you for when those words actually becomes a reality.
    Everyone told us how difficult all of the “firsts” would be. The first birthdays, the first holidays, the first anniversaries…. And they really were so much more difficult then we ever could have imagined. We struggled with our emotions, our emptiness, our loss.
    We expected to flounder through our year of firsts. After all, everyone told us this would happen. They told us that we just needed to get through the first year. They told us that “it” would get easier. What I’d like to know is what “it” is. Is “it” the fact that our ten-year old daughter is dead? Because I can tell you THAT reality does not easier. Is “it” our missing Gabriella? I can tell you THAT doesn’t get easier either. In fact, that gets worse.
    People tell us that “life goes on” (incidentally, this is NOT the thing anyone should EVER say to a parent whose child has died). Every parent that has had a child die knows this. We live with this fact every second of every day. But, do you realize that as “life goes on” we live in a time warp. We (attempt) to live in the present while we also live in that precious place in time when our child was still alive.
    Want to know our reality? As “life goes on”, as we watch our other children and our deceased child’s friends go through the natural progression of childhood we are tortured as we imagine what could have been, what SHOULD have been. Gabriella SHOULD be in middle school. Gabriella SHOULD have her own cell phone (she was going to get one for middle school). She SHOULD have gotten her Bat Mitzvah date. She SHOULD still be writing her poems and stories. Gabriella SHOULD still be a voice for childhood cancer awareness. Instead we watch as “life goes on” and we think about what SHOULD BE. But our should be’s can’t be because our child is dead.
    And now our family enters our “seconds”. Our “firsts”, our “most difficult year of firsts” is over. Our lives are now supposed to, miraculously, be easier? Why do people think this? Did I think that way? Are we just supposed to forget about our child that died? Are we never supposed to think about our child after that first year? Never talk about them? Never wonder what amazing people that would have become if only they were given the opportunity to live? Never wonder what if…? It’s impossible, simply impossible. So now we enter our second year without Gabriella. The numbness of the surreal first year has begun to fade as the cold, hard reality that our Sweet GG really, truly isn’t going to be with us for another birthday, another holiday, another school year. So, how is it that our lives are now supposed to be easier after the first year as we have to painfully watch “life go on” knowing that the life of our child was cruelly and painfully ripped away? Knowing that Gabriella will never be Bat Mitzvahed, never graduate, never go to a school dance, never go to college, never have a boyfriend, never write a book, never get married, never have kids… Never, never, never. Way too many nevers.
    So, yes, our first year without Gabriella was beyond terrible. But, I don’t see any time in the future getting any easier. Time does NOT heal all wounds. Time keeps our wounds open and raw as we see “life go on” without our child.
    Reach out to your friends that have a child that has died – always. Be kind. But most of all, be sensitive that they are, and always will be, hurting. Be aware that events – birthdays, graduations, weddings – are a painful reminder of what they can never have. And remember that the death of a child tears the basic security foundation for the entire family – especially the surviving siblings as they struggle with their new reality.

  19. Libby — you don’t know me but I have followed your family and my heart hurts for all of you. I know I’d feel the same way you do if it was my kids…and I really admire your strength of continuing to move forward daily despite the pain and hurt that is always there.
    The wound doesn’t heal with time it just gets perhaps a little less evident.
    You are such a good Mom…I pray someday for answers to questions that none of know.
    With Love – Laura

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