my daughter

I am reaching for her. Always so desperate to try to connect to her. Its been a slow build over the past few days to the point of all consuming…

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My boys really wanted a party for Charlotte. So we threw something together last minute for her on Friday, a few days after her birthday. We still had our gluten free cupcakes for her actual birthday so we went outside to sing and eat them…

**I just noticed she is holding a Love4Jlk bracelet**
**I just noticed she is holding a Love4Jlk bracelet**

since they crumble more than glutenful cupcakes.. We lit her candle, it blew out and as we sang it blew out again.. then it hit me. Out loud I said good job Jennifer.. and it stayed lit. ..

13361356445_af0e88f205_bwas it really her?

I choke on that hope..

That she was there. Present enough to be experiencing it with us. close enough to blow out her baby sisters candles..

right now I look out onto the darkened patio and I hope, I wonder.. I’m not sure even why I am so scared to believe it. ..

..til now. Til I write it then I get it. This is why I blog.. this revealing of myself to myself.

Im scared to believe it because if its true.. then its also true that she is dead. I know her body is burnt to ash.. I know I haven’t heard her say my name in over 3 months.. but somehow its not real to me..

my whole body is on fire right now.. crying and sweating, Its like I cannot physically handle it..

Last night we had our child loss group. Afterwards we went out and the young girl with cancer was there. In a fairly empty restaurant they sat at the table right next to us. Again I wanted to say something. . but this time I knew what it was. I felt like I wanted to reach out to this girl. . to offer her an outlet to make her voice heard on my albeit small platform. To write here.. or speak with me somewhere.. .Not to her directly though.. approach only her Dad. .. wait for him to get more food (gotta love a buffet)

So I fretted about it.. over and over with Tony. He is struggling.. it is so hard to see your husband hurt the way he is right now. .. so he said he couldn’t stay for it. . I didn’t do it. I left with him. In the car I kept mulling it over. we drove away.. but the desire kept gnawing at me.. I kept talking about it. Finally telling him to turn around. I wished I had a business card to give them.. So I opened my glovebox to find something to write on. I pulled out a envelope and looked inside. A gift certificate to the Lucile Packard gift shop.. and when I showed Tony we both looked inside and could see the Dad standing up to go get food..

..even my Tony was on board then.. I walked in and spoke to him. So nervous. He was very receptive. Sorry for my loss (which I avoided saying as long as possible) and seemingly accepting of me.. as another cancer parent. Walking out and getting back into the car, I realized, I felt so much better.

I hadn’t really been cognizant of it at the time.. but since the moment I saw the family come in last night a different kind of anxiety had been building.. and leaving the restaurant.. it didn’t dissipate it intensified.. until we drove back and I made contact. Somehow I don’t think the anxiety was internal.. it was an external force.. I told Tony.. maybe he sensed it on me too.. because we drove together in silence.. a sorrow/broken/pleading quiet.. where so much was communicated in holding each others hands.13338277925_06a7f738b8_b

And then I am constantly second guess if its happening.. or if I am just looking for it. I wish I could know for sure. Erase all my doubts. Another family recently lost a their beautiful son to DIPG. The moms belief in heaven seems unshakable.

I believe. I do. But I am also so terrified that I might be wrong. That’s why its called faith.. yup I know that.. I am more scared now than I have ever been in my entire life.. I tell myself even if I am wrong…if my faith is misguided. .. its ok if it gives me some sense of peace today. When I find out for sure it won’t matter anymore.

then I have a moment. Like literally right now as I am writing. Our mantel still full of cards for us about the loss of our Jennifer. And I see her little face and white headband peeking out.. the picture from the front of the program from her services that I stuck up there.. and I remember. ..

**I just found this photo..it was in a lost album..I am wearing a dragonfly shirt**
**I just found this photo..it was in a lost album..I am wearing a dragonfly shirt**

 

 

A friend stopped over today with a gift for Jonathan. . I talked with her. Actually I cried with her.. over my inability to really remember my daughter. That my memory is still so two dimensional. That my recollections of her are only through pictures. I cannot remember what it felt like to really hold her. .. what her hair felt like to brush.. what her kisses felt like. .. How scared I am it will never ever return to me. That when I try to go there.. to remember her all that remains. . .. is the end.

 

 

 

 

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**10 days before she died**

I go back to her dying.. not the days of her slow suffering death.

But the final hours with her. Locked inside a mostly healthy brain being overtaken by a horrific tumor. She said maybe that’s what I need to feel her.. to go back to that place. Work through, with, past that day … over and over again

…until I can somewhat accept the unacceptable.

And so now.. giving voice to my fears about heaven just maybe not being real.. how terrified I am that I wouldn’t ever see her again. . I look up see her face just barely peeking out.. and remember. My friends words about going back to that time and my other answer about why there has to be something more than this life..

her death.

Those hours in that room. laying with my baby girl her eyes so full.. .

of life

and fear

and love..

being choked out by pain and death..

.. .but not alone. I felt the other side. Something so real and so very very big.

My baby girl is part of that now.

Jennifer Lynn. ..my daughter.

I wish I could understand.. make sense out of the senseless ..

Jennifer Lynn … my daughter.

Jennifer Lynn …my daughter.

Jennifer Lynn …my daughter.

Jennifer Lynn …my daughter.

Jennifer Lynn… my daughter.

Jennifer Lynn…my daughter.

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45 Responses to “my daughter”

  1. Just finished reading this and I saw your latest blog pop up…feel I need to share this with you! Peace be with you…I have felt he other side….it is real…more real than anything on this earth.

    Hallelujah! Christ is risen! Sin is defeated, and we have been redeemed!

    These are the thoughts that often come to mind when we think about Easter. The tomb is empty, and Jesus is alive once more.

    But look more closely at the Gospel stories we hear at Mass during this Easter season. You’ll find something else there: stories of encounter. You’ll read about how the first disciples came face-to-face with the risen Lord and what happened to them afterward.

    Clearly, these stories are important. For one thing, they confirm that Jesus truly did rise from the dead. But even more important, because there are so many of them, they tell us about the different ways that people have experienced the Lord. He didn’t appear only to Peter, the chief of the apostles, or to Mary Magdalene, the faithful disciple who came to the tomb. He also appeared to Thomas the doubter. He appeared to two forlorn disciples on the road to Emmaus. He even appeared to a Pharisee named Saul, who was bent on destroying the Church!

    In this Easter edition of The Word Among Us, we want to look at some of these personal encounters with Jesus so that we can get a sense of how we can meet him in our own lives. And because we will be celebrating the canonizations of Pope John XXIII and Pope John Paul II this month, we will also take a look at what these two great saints can teach us about finding the Lord.

    Seeking the Wounded. Let’s begin by looking at the stories of Mary Magdalene and the two disciples on the road to Emmaus (John 20:1-18; Luke 24:13-35). Both of these stories give us a dramatic illustration of the psalmist’s words: “The Lord is close to the brokenhearted and saves those whose spirit is crushed” (Psalm 34:19).

    Mary Magdalene was one of Jesus’ most devoted disciples, but now she was faced with an empty tomb. Jesus, the rabbi who had delivered her from seven demons and who had given her life such meaning and joy, had just died a painful and humiliating death. It’s no wonder that she stayed behind and wept while Peter and John returned to the other disciples. Her grief was still too strong to be with everyone else. Her heart was too broken.

    The two disciples on the road to Emmaus were brokenhearted as well. While the other disciples stayed together in Jerusalem, these two headed out on their own. Jesus had given them such high hopes, both for their own lives and for the future of their people, but now everything seemed lost. So they left Peter and the others behind. Jesus’ mission looked like it had failed, so what was the point of staying together anymore?

    And so it was into these situations—a grief-stricken woman and two perplexed, dispirited travelers—that Jesus first chose to appear. Rather than go to Peter or John or even the chief priests, he chose to seek out the ones whose sadness and confusion caused them to isolate themselves.

    He Can’t Stay Away. We can see here that Jesus is especially drawn to the lonely and the hurting, those who are hungry for his presence. Mary Magdalene’s grief, combined with her faithfulness, acted like a magnet to Jesus. He couldn’t stay away from her. He rushed to her side and showed her that his love is stronger than death. He went out of his way to dispel Mary’s sorrow and fill her with joy.

    We could say the same thing about the disciples on the road to Emmaus. As Mary was consumed with grief, they were consumed with questions. Luke tells us that they were “conversing and debating” as they walked (Luke 24:15). Then, when they met Jesus, disguised, their tale of woe came tumbling out of them (24:19-24). They just couldn’t hold it in—not even as they spoke with a complete stranger. Because they were honest about their grief, because they were seeking answers, Jesus was able to bring them back to faith.

    If they were with us today, both Mary Magdalene and the Emmaus disciples would tell us to linger beside the “tombs” in our lives—the memories or thoughts that make us feel sad or isolated. They would tell us, of course, not to drown ourselves in sorrow. But they would also tell us to let Jesus can meet us in our sadness. In a world that urges us to “move on” with our lives and put a brave face on every situation, Jesus asks us to give voice to our worries, our wounds, and most important, our hunger for him. We shouldn’t be afraid of pouring out our hearts to him or asking him challenging questions. Why? Because he wants to heal our sadness and satisfy our hunger. He wants to find us in that place where we are most vulnerable and most open to his presence. That’s when we are able to experience our own resurrection with him.

    Imagine Mary Magdalene telling herself, “This is no way for a disciple of Jesus to act. I’ve got to pull myself together! The other women are depending on me.” She might have been able to offer some comfort to the others, but she also might have missed seeing Jesus altogether. Or imagine the Emmaus disciples telling the stranger that everything was okay, when they were filled with questions and doubts. They might have had a superficial, casual conversation, but they would have missed seeing Jesus in the breaking of the bread.

    Brothers and sisters, the Lord truly is close to the brokenhearted. Like a doctor running to tend to a sick patient, like a lover rushing to his beloved’s side, Jesus comes to us when we need him. He calls everyone who is poor in spirit “blessed” (Matthew 5:3). And that’s what we are: needy, poor, and hungry for God. So don’t be afraid to ask Jesus to come and save you!

    Running Home to Witness. These stories don’t end with Jesus’ appearance. They end with happy reunions. Jesus sent Mary Magdalene to tell the disciples what she had seen. But he didn’t do it just so that she could deliver a message for him. He could just as easily have appeared to them himself. No, he sent her back so that she could be surrounded once more by fellow believers.

    Likewise, after Jesus had broken the bread and disappeared, the Emmaus disciples hurried back to Jerusalem to tell the other disciples everything that had happened (Luke 24:33). Having met the risen Lord, they changed course and returned to the place where they knew they belonged: with their brothers and sisters.

    This is how Jesus wants to help us. He doesn’t want to just take away our pain and answer our questions. He wants us to share the good news with our brothers and sisters. He wants us to surround ourselves with fellow believers so that we can build each other’s faith by sharing our stories.

    Mary Magdalene and the Emmaus disciples returned to the disciples because that’s where they belonged. They needed to be in an environment of worship, trust, and surrender to the Lord. They needed the Church.

    And so do we. We are all part of one family. This is why the Letter to the Hebrews urges us not to “stay away from our assembly, as is the custom of some, but encourage one another” (Hebrews 10:25).

    If you want to find Jesus this Easter, don’t isolate yourself. Spend time with your brothers and sisters in Christ. Of course, there are Bible studies, service projects, and parish committees to join. But your options aren’t limited to these “official” activities. You don’t always have to be talking about Jesus or doing works of charity. You can find the Lord in simple events like parish social gatherings and impromptu conversations after Mass. We can meet Jesus in each other even as we are simply being ourselves—children of a loving Father!

    He Will Show Up. Mary’s grief drew Jesus to her side. The Emmaus disciples’ questions moved him to join their conversation. In both situations, Jesus came disguised at first—but he did come. Just so, you may be surprised by the way Jesus comes to you. It may be through an unexpected encounter. You may get a powerful sense of his presence at Mass. Or he may simply set your heart on fire as you ponder his word in the Scriptures.

  2. I cry and I cry and I cry with you Libby. I have recently become aware of Bens story as well. I have read his mother’s blog the last 2 weeks and I need to say this to you. ..while it is awe inspiring what she writes and somewhat admirable her faith and calmness and what seems to be complete acceptance I just personally do not think I would be the same. I think that is why I have SO connected to your writings. To your love for Jennifer. To your loss of her…because all of your emotions are exactly how I would be feeling. One day Libby, I will private message you and tell you the story of Jennifer’s service program and my daughter. One day when I know how to put it into words. …

  3. You are not alone and neither is she. I know that doesnt take away the deep ocean of grief inside your heart, but maybe knowing how much love surrounds all of your will give you strength. You’re amazing.

  4. You are so strong. You have always been so strong. I’m praying that you and your family are able to heal quickly.

    Much love from an old high school friend.

    <3 <3 <3

  5. Oh how I wish I could bring Jennifer back to you, I ask why why why does this have to happen to children, not fair,I fear losing one of my children, now I fear for my grandchildren,at my job I have seen children with cancer, the look in the parents eyes, your sweet Jennifer has taken hold of my heart, I talk about her and share your pain with who ever listens, and I will continue sharing on my Facebook and I will continue to cry with you and smile at Jennifer’s beyond beautiful face and I will continue to comb out my granddaughters hair every single time she ask me to so she can have straight hair like the nice girl at Nob Hill your Jennifer

  6. I’m still here reading and crying for you…I think we all have questions…even though we Believe…Don’t feel any guilt for your thoughts and emotions. Have you read the book or seen the movie “Heaven is For Real”? I don’t know if seeing something like that would help or hurt? Praying for you all…

  7. After Jennifer’s passing I sat on church and I cried. The worship team was singing about how God is a healer and has awesome power. I have rarely doubted my faith, but that morning I was angry and bitter about the loss of a child I didn’t even know. I thought, “Sure He is. If this were true, why do kids die of cancer?” And then our worship leader read “For I know the plans I have for you, declares the Lord.” Jeremiah 29:11. And then our pastor gave a sermon about how time in Heaven is so much slower than time on earth, and to those we have lost it will be a blink of an eye until we are reunited, even if to us it is 60 years. He spoke about us all having a reason for our existence, and some have a purpose to be on this earth much shorter than others. Finally, he spoke of there being no negative emotions in Heaven. Just love and joy and awe. I left that day no longer biter. I remember looking up and thanking Him, and Jennifer, for the reminders of the loving God and the ability to know that one day we Wil be reunited with our loved ones. Hold on to your faith, don’t be afraid to think her presence is near. It will be in the times you need it most. I, and so many others, pray for you guys daily.

  8. You are being heard and remembered daily by so many. We can’t all be wrong about feeling her spirit and those that we’ve lost. I’ll hold on to Faith while you figure it all out. I pray for peace and love for you and yours. There is no easy answer to this crazy life and the “why’s” of it. We feel your days and nights through your blog. Wishing you one peaceful day at a time. You are amazing. Thank you, Libby and Jennifer!

  9. So emotional reading today. I just want you to know that im still here, reading, crying, thinking and praying for you daily. Forever 6 ❤️❤️❤️❤️❤️❤️

  10. You are so strong and inspiring! You are not alone
    We are all here hurting with you! Moms like
    You are rare and just hold on to the fact that
    You loved your daughter and she loved you
    Right back.
    She is always with you!
    Love

  11. Still reading and praying. Praying for you to feel Jennifer and the one whom she is with. Hold on Libby

  12. Libby, I haveno words for you. Other than to let you know that I am here, reading every single blog post and crying through it all with you. My prayers are always always with you <3

  13. Here, reading, always thinking of you all. When I lost my grandmother a few years ago, I rememeber, for the first time in my life (and I had lost several family members, friends and patients by then), what if it’s not true? What if she’s not dancing with my grandfather and all those beautiful things I was telling myself aren’t true? And it took my breath away. Literally. It was overwhelming and terrifying. And I quickly rejected it. But for that one moment…. It invaded me. I will send extra love to you today, Libby. You are beautiful. ❤️ Love from a faraway friend.

  14. I am still here reading, crying for you. Sharing and sharing your story, Jennifer’s story. We love you all so very much. All 6 of you. I will continue to do my part to help in this fight against pediatric cancer. Change is coming.. My love to you all ♡♡♡♡♡♡

  15. Libby I always believe that little things happen for a reason like the candles, I believe that’s Jennifers way of showing you she’s there and shes Ok. I always play along with them and talk to them as if they were there. If you feel her presents then acknowledge her because she is trying to connect with you and it might be in silly ways that’s what little Angels do. Much love for you and the family. Big hugs and Angel kisses.

  16. Hope- it is the only thing stronger than fear.

    I read that earlier today. Please keep the hope and faith. I am still reading, supporting and spreading the glitter.

  17. My 4 year old and I still pray for you ever night. I cry for you as I know the pain must be never ending. You are an amazing writer and putting your feelings down on paper is your path to healing. I beleive she is there with you and looking after your beautiful family. My thoughts are with you.

  18. Sometimes we just don’t understand. But always lean on your faith. We have many questions about things that we feel God could fix but we know that God has a plan for out lives. Sometimes we wonder is the plan to make us suffer?? We feel that way but its not. I have so many questions I would love answered like why did my mother not have children for 5 years and when she did she only got to enjoy me and my brother for a short while. Why would God take away my mother when I needed her most. Answers some day we may get an answer for but not now. God had a plan for Jennifer and those plans were fulfilled and God took her home and you wonder why? I do to but right now we can not get an answer. She will always be with you and you will never stop feeling her presence and yes once day you will be reunited. Not fair I agree but its God’s will. I can understand how we question our faith at times its normal. We see other people so happy and so complete and we ask ourselves why can’t that be me or my life? Because God has other plans for us. Your a wonderful loving mother and wife and your children are so lucky to have a mother that loves so deep for her family. You have been a blessing to alot of us through your blog and continue to write and express your feelings you may be helping someone else along the way. Love you and your family Libby. I feel you are part of my family at times as sad as I feel when I read your blogs. God has a plan and a purpose for you and I feel he is putting that plan to work and the results are going to give you a lot of answers. Sending ~~HUGS~~ to your family!!

  19. Good days, bad days….Minutes, hours…. Take each minute, hour, day one at a time. You are strong, keep believing, keep your faith. Always do what feels right in your heart.
    I know my small words don’t mean anything, but please know I am part of your silent support system. Always reading, high fiving you on the 5k trail on Sunday, always praying and send my love and support. Godspeed! xoxooxoxoxoxoxoxoxoxoxo

  20. I always cry when I read your posts. Sometimes I sob. And then my eyes shift over six inches to the right of my computer screen where Jennifer’s program is, and I swear to God she always makes me smile. Even in the midst of the pain, she has that power. What a fucking cool kid. You will be reunited.

  21. Hi Libby, After my nephew, Christopher Robin Wibeto died (medical error), I had business cards made with his memorial website on it. My sister got a tattoo of Christopher on her arm and everytime someone asks about it I tell her to give them a card. That way we are keeping Christopher’s memory alive. I love sharing my nephew with people.
    You hang in there, believe it or not….one day you will be better. Never, EVER the same, but somewhat ok.

    Big hugs – Auntie Janice

  22. Still here with you. Still wearing my JLK bracelet. She traveled to Disneyland and Monterey with us in the past few weeks. She is never forgotten and I share her story via you whenever I can. I am listening.

  23. Heaven is for real, Libby. http://heavenisforreal.net/
    I read this (as well) right after Jennifer passed away.I had my doubts but after this and other books I’ve got back faith again.
    Please believe it doesn’t end here and that our years are just seconds up there.
    You are going to meet her again. We all long to go back there where we came from. She will welcome you there one day. Until then we just have to believe and see the signs.

  24. Jennifer was there to help Charlotte blow out her candle. Jennifer was there holding your hand when you talked to the dad of the little girl with cancer. Jennifer would not miss these moments… You know your daughter… You know how she is :-).I hate to say this here but I don’t believe in God the way most people do but I 100% believe that Jennifer will be with you forever. Most of the time you will feel her in spirit, and there will be those beautifully strange times that you can feel her “physically”. You guided her through the first 6 years of your relationship, and she will guide you through the rest of your lives. You know how she is :-). And she wouldn’t want it any other way…

  25. Libby, thank you for putting into words the feelings, questions, fears and doubts that come with death.

    It all seems too big to understand as individuals, but in grief, we seem bound together in the unknowing.

    Peace and love to you and your family.

  26. I believe she was there, blowing out the candles. Of course she was. Always thinking of you Libby, and so deeply sorry …

  27. I know you are searching of ways to honor Jennifer in the future through you work, etc. In addition to your speaking, have you thought about writing a book? Maybe a compilation of this blog…or even a novel. Your writing resonates…and you could use the profits to donate to something related to pediatric cancer that is meaningful to you.

  28. Still here. Still reading. Still so easily brought to tears. Like I’ve said so many times. We don’t know you. But we are here. She remembered and thought of by strangers all over the worlds. Your words, your solid love for her did that. I see her in every beautiful butterfly i see. And as I’m typing this… A monarch landed in front of me. It’s still sitting here…

  29. Libby,

    I have absolutely no idea what to say. There are no perfect words that will make all your pain go away. Your thoughts of joining Jennifer are normal even though they are scary. Your rational mind knows how much she loved her siblings and would never choose for you to leave them behind for her sake. I will continue praying for healing of your heart and mind in a way that allows you to keep Jennifer close to your heart always. You do not have to leave her behind in order to move forward. It was great to meet you at the 5K. My daughter, Cameron, is still very excited about the Disneyland tix and she really took the run for JLK to heart 😉

  30. The candles were definitely Jennifer.
    She is telling you she is around and loves you.
    Look for other signs..

    Keep fighting through Libby, you are doing so magnificently.

    From a wintery New Zealand.

    Kerry 🙂 xx

  31. She was there blowing out the candle. Gives me chills. She is with you, Libby. Leading you down this new path. Helping you spread the glitter. Helping you educate all of us out there. Your army of supporters who want to find a way to make things change in the pediatric cancer world. A change has to be made. Period. Sending prayers of comfort to all 6 of you.
    XO

  32. I’m not exactly sure who the “son that lost his life to DIPG recently” is, but there was a boy in my town who recently passed from DIPG and his mother was a strong believer in heaven. When I saw this boys page on Facebook, it instantly reminded me of Jennifer. He was 5, she was 6. From reading all these blogs, I have a good feeling that Jennifer is heaven friends with this boy, his name is Ben. He was adventurous according to his mother, and Jennifer was as well. I have never met either if these sweet precious kids, and though they never met in person, I find comfort in believing that this two kiddos are friends.

  33. Always & forever your daughter.
    I truly believe in our loved ones coming to us when we need it most. I also feel we only see them when we’re looking. You keep looking, she is all around you & your family. She’d def be there for a fun birthday party!

  34. You knew, instinctively you knew it was Jennifer blowing out those candles, or it wouldn’t have been your first reaction to tease her aloud when they just wouldn’t light. I believe it, too. Your mom-instincts still work just as well as they always have, even between birthday parties and Heaven .. and, really, for a forever-six-year-old, is not a birthday party Heaven? Sending my love to you.

  35. I saw a recent DPIG story about a twin boy who died, and her update said something like “my son has taken his first breath in Heaven”. It struck me, it stopped me when I read it actually, made me think of you, but also really made me challenge my concept and belief in Heaven. I pray for both of you, truly and deeply, pray for both of you to have peace in your own ways, as it comes to you on your terms.

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