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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3 years… almost..

January 26, 2017

Almost 3 years. I said those words aloud to another DIPG parent last week, a Dad just starting out on their journey.. and I haven’t been able to shake it. ..

3 years.

Its been almost 3 years since I last held my daughter. Since I last smoothed the hair from her face.. And whispered in ears.. Almost 3 years since I felt her slight weight in my arms…

I wonder. So much I wonder if I helped her. If I said the right things to her.. I wonder if she felt safe.. if she was angry?

Was she scared?

were you scared baby?

I don’t know how to not let the slow onslaught of questions overtake me.  I am trying. I am really trying to stay above.. but the waters are rising. . A slow and constant pounding … a steady and growing swell of grief is swirling around me.. higher and higher..

Just like the weather we are having here.. dangerous not because of a sudden and powerful amount.. but because of the unrelenting nature of the rain..

 I am holding my breath.. because I know the water will only continue to rise.

I told her so much those last 36 hours that I held her.. that I talked to her.. Did I say the right things? Did she have question I wasn’t answering?

She hadn’t spoken for awhile.. at least a week. But we communicated. I know that. I do .. I know that. ..

Heart to heart and soul to soul. Such beauty in it. .

I am grateful for that because it paved the way to teach me how to hear my soul now

But ..

..these moments … as I succumb to my grief .. I question it all. I question everything.. And I am so scared. ..

thank you for letting me be awake when you left.. one less question to haunt me.. 

I am her mom. I was supposed to protect her. She trusted me to protect her. I failed. The purest role of motherhood. I failed.

 I know we communicated.. And I know she hurt. I know she was scared. .. And I will never ever forgive myself for that.

3 years since you felt pain


3 years into my pain.

…until there is a cure..

  1. Bridget says:

    I can’t believe it is almost 3 years. I don’t know what to say other than I am still here. And I think about you and Jennifer all the time. I value moments with my daughter more because of her. I appreciate the weight and feel of her body every time I touch her and am more present because of Jennifer. I am sending extra love this time of year, hoping to help carry you through. Lots and lots of it.

  2. Melissa says:

    I’m still shocked it has been nearly 3 years. It seems like both forever ago, and just last week. I remember those blog posts you wrote as Jennifer got weaker and weaker…I remember begging God to not take her yet, but not let her suffer. I am so sorry for these unanswered questions.

    There is no way to ease your pain, or make you believe that you didn’t fail her, even though truthfully I’m certain you did not fail her…to truly “fail” her, you must have had the opportunity to save her, but not pull through. You never once were even given the chance to save your daughter, it wasn’t an option. It was not you that failed, as her mother…it was the whole damn world that failed her. Including me. I am so sorrowful that we could not give her the cure that she deserved, and that you deserved. My heart aches so badly for the pain you, Tony and your living children are going through.

    I think of Jennifer so often, at least once a day, every single day. For over 3 years now. Even as a stranger, she has had such an impact on my life. But I wish she hadn’t. I wish I never had a reason to know her name…because then she would still be here, and DIPG would just be three random letters with no meaning, and your lives would not be shattered. I’m so eternally sorry…and active…for her, because of her.

  3. Shelly says:

    I am also still here, I am forever changed by your precious angel. I pray for peace for your family. Jennifer remains in my thoughts daily. ❤️

  4. jennifer says:

    so many prayers for your family. No parent should have to go through this and that is why we continue to flutter and spread awareness…LOVE4JLK

  5. Karen says:

    I am 20 years into my pain.

  6. Leah says:

    Sending love.

    Still reading. Still thinking about you and your family every day. Still hugging my child more because of her.

  7. Jessica says:

    Thank you for sharing your story at the San Diego Mom’s Night Out and for this great reminder today. I helps to stay focused on the fight and the gift it is to have our babies with us, even when the day is tough. Much love to you and your family.

  8. Laurie says:

    I’m still here too. <3 it's so hard to believe it's been 3years

  9. Trish says:

    Thank you for sharing such raw, soulfull words about your beautiful daughter. You did not fail her. You did everything absolutely possible to love her, protect her and guide her through the maze in this passage. While there is no handbook on how to handle life with childhood cancer, you have so eloquently modeled a way for others to follow. Pure, devoted love. Bless you and your family. Thank you for all you have done. Until there is a cure. ❤

  10. Daniel B. says:

    My son died 6 years ago. He was our youngest child. At about 4 years into our grief, our 2nd youngest told us that he knew that all we wanted was his brother and that no matter how good he was or how well he did at school or sports, we would always be wishing that it was his brother still living instead of him. Through angry tears he said he was tired of us going on and on about his brother and wishing he was here and that he and his sisters were standing in front of us needing to be loved and needing to get attention. He begged us to see him. He begged us to stop talking about his dead brother constantly. He begged us to take down the “shrine” on the bookshelf where we kept photos and things that reminded us of him. He was 10 when he said this to us and it was a slap in the face. It was also the slap in the face WE needed. We went to family counselling. We listened to our 2 daughters tell us they were tired of living in the shadows of their dead brother. They were tired of having “zombies” for parents. They were embarrassed by our crying in public and didn’t want to go to the cemetery with us anymore because they felt we were “wasted” and “useless” for a week after the visit. They were embarrassed to invite friends over because we were never present and looked miserable. They told us that while we thought we were faking happy and pulling it off, they could see through it. They couldn’t understand why they didn’t make us happy. They could not stand spending time with us and were in their early teen years and wanting to spend more and more time away from home with friends. They felt that we didn’t even notice them anyway if they were home. Our eldest daughter said she was tired of listening to us bawling at night, in the shower, in the garage and that the public breakdowns in stores, the park, the school Christmas concert, were humiliating. She asked to go and live with her Aunt & Uncle. Once she voiced that request, her brother and sister followed suit and they launched a full-scale campaign to be sent to live with my brother and his wife. We are terrified of losing her. She barely interacts with us and if we are struggling in our grief, she demands to spend weekends away with friends or family with “people who will pay attention to her for real”. She has become very close to her best friend’s family. I feel they are getting to raise and parent her instead of us but honestly I can’t blame her for seeking that out. At the moment our eldest daughter is counting down the days until she graduates high school and is choosing colleges as far away from us as she can physically get. She says she can’t stand living under the weight of our grief anymore. The anger all 3 kids have towards us is soul crushing. The therapist has validated their feelings. We have made terrible mistakes in our grief. We thought we should include them every step of the way. We were wrong. We needed (and still need to) put our grief aside and learn to be fully present for our living children. We’ve lost 6 years with them, 6 years of being half present on a good day. I wish we had known the separate our grief from our parenting as hard as it may sound. Now I feel that I lost all 4 of my children. I don’t know if we can get them back. They did everything we asked in the first few years, they held the picture of their brother when we took family photos. Drew pictures for their brother to take to his grave. They played along in every way we needed as they wanted to please us and wanted us to stop crying. I’m not saying you cannot grieve, I’m saying that there has to be balance and a way to protect children from the ugliness of a parent’s grief and pain. I worry that by the time you realize this there will be irreparable damage done to your boys in particular. Charlotte is too young to have any memories of her sister that are truly hers. Bridgette will have no memories but will likely adopt some from her siblings and insist they are her own until she is old enough to understand the timeline. I fear that you will end up hearing similar feedback from your children that we have heard. I wish someone had stopped me early in my journey and nudged me in a different direction, one that protected my children from the enormity of my pain. I would have been angry and exploded on that brave soul but I would have likely made different choices or sought better help earlier. It wasn’t fair for my wife and I to expect them to understand our need to and constantly include their dead brother in every celebration and holiday. That was our need, not theirs. We never gave them the option of just not including their brother and we should have. They knew it made us happy to talk about him so they forced themselves to bring him up but then it just started making them angry. Now I hear “He is GONE and never coming back and I AM STILL ALIVE AND YOU DON’T CARE BECAUSE HE IS MORE IMPORTANT TO YOU THAN WE ARE”. Having this shouted at me breaks my heart. The therapist says we are stuck in our bereavement and the group we attend is full of people telling us it is time to let our son rest in peace. It is time to let go and move forward. It makes me angry sometimes but I also agree sometimes then other days I am convinced they don’t get it at all. But they have all lost a child too so they do get it. We have become stuck in our grief. This is what the professionals tell us. My son died on my birthday. It hurts every year but I feel I have to stop indulging my pain for the sake of my children. I am scared for you and your family and that you will end up in a similar place. Sometimes I hear how hard you are hanging on to your pain and I cringe. I was that person. Letting go of the pain doesn’t mean you don’t love her. It means you know that in order to live you cannot hang on to something that hurts you so badly so tightly. My wife and I keep our conversations about our son private now. Our children don’t want to hear it. They get angry when we tell people we have one “angel child” and 3 living children. They think it’s too personal to say that to strangers and it embarasses them. They have clearly said that they are tired of every birthday, holiday, graduation, school concert, achievement celebration being “ruined” by bringing up the most depressing and painful thing they have ever experienced. They tell us that they are very aware he is dead and not coming back and don’t need us reminding them. I’m not trying to hurt you, my God that is the last thing I want. I am sharing so you know what can happen in some families when parents do not grieve “well”. Grieving “well” is apparently possible and it refers to grieving in a way that is healthy. We had a therapist initially for just my wife and I. We found a new one who is more directive and assertive and works together with our family therapist. To have my 16 year old daughter tell me she thinks I prefer to live in my head with the ghost of her dead brother nearly killed me. I had to surrender and take anti-depressants and accept I was severely depressed. My wife had to go away for inpatient treatment for her depression and PTSD over our son’s death. My children are being honest in family counselling but their words are painful to hear. Please don’t stay stuck in your head with Jennifer. Please get help and if you are already, get more or better help. You sound very stuck and similar to how we were and I am genuinely afraid for you. Our children only want to please us. I’ve read all your blogs and it sounds like the boys have a lot of anger. Please get them help for that anger and really listen to what they are trying to say to you. Wishing you peace on your journey and hoping you understand where I am coming from. Moving forward doesn’t mean leaving someone behind.

    • Unravel Pediatric Cancer says:

      Thank you so much for your words. I am sorry you have struggled so terribly with your family afterwards. And I appreciate so much you reaching out in total love and understanding!!

      .. but remember what I write is not the day to day reality. What I write is my deepest and my darkest.. What I write is my fears, which as I write feel all consuming and real.. but in truth .. in the light of day I know are not the truth. But its how I cope. How I deal. To dig in deep to my pain behind a keyboard. It is how I find it in my to rise above.

      We also still do all types of counseling .. including working out and tradition therapy. Just so you know.

      But I think the biggest help has been relationships with parents like you. That have been there done that and stepping in our lives to “mentor” us.

      But the biggest thing for us has been to always admit we don’t know what the hell we are doing.. just like we have never really known the correct way to parent. So we do our best most importantly to treat each child and each other differently. And just like Tony and I deal so differently our kids do as well.. especially as they grow their needs change and we try to address it as best as possible. I wrote once how a “jennifer song” came on and one boy begged me to turn it off and the other one begged me to turn it up. So i pulled over got the one theta didnt want to hear out and let the other one rock out.

      I am 100% sure we are making mistakes.. just like I always have as a parent.. But I know we are also having some incredible successes and that my kids know (at least right now) they can ask for what they need. Like my much more private guy.. the one who hates crying.. He asked to go back to the bereaved family camp we went to previously.. He has asked for more personal therepy and we are delivering..

      Have you head of EMDR therepy? it was initially discovered for soldgiers with PTSD.. but my husband has had great success with it!

      Anyway.. thank you for reaching out.. but please try to just imagine this is those thoughts that are deep deep down.. that I choose to bring to the surface and sludge my way through.. to be able to get them all the way out of me. Versus our day to day reality. And I am fully aware that as they continue to grow their needs will continue to change n regards to the loss of their sister… maybe it was lucky mine were ao young when she died?

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