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

Welcome to the Unravel Blog

questions?

March 22, 2014

Just watched her services for the first time.

Just me and her pinkie and nigh nigh. .. . kinda feel like I was in a boxing match.

.. .i lost. Badly.

I feel a weight on my shoulders.. pushing my down. So heavy.

I thought it would start to get lighter?

. .. its not.

Its getting heavier.

IMG_3745

I smile. I laugh. I talk. It all seems fine. Its not. I am so broken. How is it that I hurt so much more now than I did a month ago? I watched her in that video and so violently wanted to touch her again . Even the sick her. Even as she struggled to hold on. I would take that her back in a heartbeat…even just for a heartbeat

I would choose to end my suffering over hers. Oh my god..how horrible am I? I am supposed to be happy she is healed and whole. I am supposed to be glad she isn’t in pain. No more of the suffering or fear she had to endure.

I don’t.

I want her here.

Gilroy Family Photographer | JLK Glitter Shoot-76

 

Maybe thats my glitter for the day. That this ache in me is so deep and wide.. that I find no solace in her being in heaven. Right or wrong its my truth. I know God. I talked to him a lot watching the video tonight. I trust that he gets it…That Mary gets it.

I just don’t know how I am supposed to go on.. and on… and on…

This is my truth. Maybe that truth of other bereaved parents also. The pain never gets better we just get more adept at tucking it away. I worry though.. if we pack it away too tightly..how deep and dark will it be when it pulls us in. Will I ever really see the sunshine again?

I did cross fit tonight. I want it as a escape. As something I can actually control in my life. Since nothing else is the way it should be. Our house is messy…never on top of the dishes or putting things away where they belong. No motivation to feed our kids the way I should.

..but really its just that she is gone. That she died. She had cancer. You know I say it. But it doesn’t sink in.. like at all. That my daughter even has cancer hasn’t penetrated. Let alone the fact that it killed her. And look at me. A wreck. Look out when the real stuff starts sinking in… it is not going to be pretty.

At the gym the more I cleared my mind to concentrate on my body and its movements the more thoughts of her came through. All kinds of thoughts. I cannot honestly recall what they were… that’s strange. I remember thinking  I would write about it…but I can’t pull it up. When I struggled. When I couldn’t get my body to do what it was supposed to be doing I fought back the rage. Intense and burning. . at myself. I damn well better be able to do this..control this. Do something right when everything else is so wrong.

Jonathan is acting out. That regression thing we have been warned about seems to be happening. He has gotten in trouble at preschool. Then with the friend that watched him while we were at counseling…he has some issues again.  I am trying. We are trying so hard to do right by our living kids. To give them outlets and understanding and just love them through this. Not too much though.. not making excuses for them either…No idea which way to go on these things though..

. ..please don’t let me fail them. please.

Or is he just being 4? Will it always be this way? Me wondering if its normal or related to his sister dying a month ago…or a year ago…or 7 years ago? I know it will forever impact them…color their lives…But how will I know? Parenting them through this…I don’t know how.

Luckily he starts his therapy next week. Hope it helps him…helps us to help him. And his brother and baby sister.

..I feel so alone. I know I’m not. I do. . i really know it. But I don’t feel it. I can’t even explain it.

We had marriage counseling today. Why don’t I cry? Why is the night my only safe time? I think its why I still don’t really like to leave the house. Because here I don’t “fake” it the same way. I put it in quotes because its honestly not on purpose. I want to show people everywhere what this really looks like. What my pain vocalized sounds like.

. . . I don’t. I can’t.

DSC_0529I want to share what its like to lose your child..in particular.. in this manner. One that we all have the capability to impact, to change.. and because it could happen to anybody’s child. Cells gone haywire. It could happen to my other 3. It is not biological. It is not genetic. Majority of pediatric cancer has no familial connection. Just really really bad luck.

well

. .. and lack of scientific discovery.

My eyes hurt. But they finally feel heavy. Released and drained. Accomplished only one of my goals…watching her service. Another thing done…to check off the list. Until there is really truly nothing left that connects me like this to her. Nothing but a lifetime of firsts…and seconds and thirds….

without her.

IMG_0325

 

 

 

 

  1. Melissa says:

    Just need you to know I am reading….crying….and reading….

  2. amy says:

    No words.. but so much love.

  3. I am still reading…still praying…still thinking about you and Jennifer and your family…still wondering how I can help make a difference in this fight against pediatric cancer…Thanks again for sharing your thoughts!

  4. Rachel bissell says:

    HUGS!!!!!!! And prayers! Xoxo

  5. silvia says:

    still here reading, sending love. I am so, so sorry.

  6. Sharon says:

    We have good days with you and we have bad days with you, but we are ALWAYS with you. I hope you find comfort in the fact that so many people are grieving with you for your precious glitter girl that we never had the pleasure of knowing……except through your blogs.

    Hugs and prayers to you Libby. You are an inspiration to us all!!!!

  7. Sharon says:

    We have good days with you and we have bad days with you, but we are ALWAYS with you. I hope you find comfort in the fact that so many people are grieving with you for your precious glitter girl. Many of us never had the pleasure of knowing Jennifer……except through your blogs.

    Hugs and prayers to you Libby. You are an inspiration to us all!!!!

  8. Krista says:

    Let go and let God. He is in control. His way is the best way. His plan is the best plan. We can’t always see why because we are not Him. He is omnipotent, omniscient and omnipresent that is why we should not lean on our own understanding. We are not these things so we can not fully understand His way but because of these things we should have faith and hope. I pray for each day for you to come closer to this and for all of us tolet go and let God became none of us will ever understand.

  9. Andrea says:

    Libby

    You, Jennifer and family have become sunken into my daily thoughts and prayers. We live here in the same town which creates such a stir in me. I pray for you and your family. I pray for your strength and for you to not feel so much pain. Libby the sunshine will shine for you.

  10. Emily says:

    Still here, reading, and praying. I hurt for you. ♥ It DOES get better. It just takes a very very long time, and it never goes away completely. You don’t want it to, either. But know that even though you don’t know me, I pray for your family daily. I am spreading the glitter. I am in this fight. And I am not going anywhere.

  11. Belinda H says:

    I’m so sorry once again you are going through this. It does get better I promise. Not because the hurt goes away but because you learn to live with it. And someday when you are ready you will see the beauty again. I wish I could take some of the pain away for you. I’m always thinking of you and your family and hoping you all find some peace and comfort through this all

  12. Tami says:

    Morning Libby, I was watching our local news today and a band wrote a song for kids lost to Cancer to raise money for Children’s Cancer. I immediately stopped what I was doing and listened. Then I went to You Tube and listened again. It is beautiful so thought I’d share it with you. Hugs to you.

    http://www.youtube.com/watch?v=yHUCNLp3ccc

    If the link doesn’t work, the song is by Quiet Drive and is called When I’m Gone.

    • Lori B says:

      Thanks for posting this, Tami. I’m sure it was no coincidence that you saw it. I hope that it is a blessing and an encouragement for Libby. So many hurting parents binding together and fighting pediatric cancer!

  13. Tami says:

    Opps, song is called Even When I’m Gone

  14. Castlemom says:

    How you feel is temporary. It won’t be like this for the rest of your life…… I promise.

    This is your now. You aren’t avoiding it, You aren’t using it as an excuse and you can’t see it but you are right on course to healing. A part of your heart has been ripped out, there will always be a scar but scars stop hurting with time.

    Your wound is still open and seeping.
    Take care to protect it, keep it clean, don’t pick at it…your wound will heal. It won’t go away until you are with her again, but it will heal.
    You won’t get your part back and there will be a scar.
    But like most scars, it will lighten and be free of pain besides the occasional bump making it soar (18th birthday, ect.)

    Our bodies and our souls are resilient. There are millions of MONAs (mom’s of new angels.
    You are not alone, and compared to some…. you are doing a really good job…Rest.

  15. Castlemom says:

    Sore not soar…. auto text grrr

  16. Jenn S. says:

    I have looked to Mary a lot in the years since my son died. She watched her son suffer more than anyone should endure and still had faith in God. I like to think she watches over all the children who reach heaven before their parents do.

  17. Jenn says:

    Do not try to understand why you want her here- why you feel it’s selfish. It’s normal. In fact, I think you are doing so well that I just admire you. I think I would be inconsolable and would probably stay in bed all day. The last picture of her on this post she is so… Alive. Then, the first picture she is so frail… It hurts my heart. This could be anyone’s child and unfortunately it is yours. But you have chosen to move forward and start the non profit- reaching out to all of us- showing us your raw emotion and thoughts… Fighting for more attention on pediatric cancer…You are simply amazing. And isn’t it what you think Jennifer would want anyway? I doubt she would ever want to see you sad! She wants you to be happy one day, and I think you will be. I know never whole, but that is expected. So much love for you Libby and your family of 6 <3

  18. Jess says:

    I dont ever know what to say except that I am still here reading. Praying, thinking of you (and Jennifer!) daily. And crying for you. I hope you can have a better day soon. Its so much to carry with you. I wish I could lessen the weight a little bit.

  19. Amy says:

    Libs
    There is no “right way” to grieve. Just your way my dear. There will come a time when you will feel lighter and see the sunshine. Give it time and let yourself grieve the way you need to for as long as you need to and it’ll come. XOXO!!!

  20. Linda says:

    Here for you, always thinking of you, JLK, and your family.

  21. Nancy says:

    I get your “alone.”

    With tears and sadness, I am thinking of you.

  22. Michelle says:

    Love and prayers <3

  23. No amount of people can take away your loneliness but we are here as witnesses. So glad you are atill writing. So inexpressibly sorry for your depths and hurt.

    Sending you dreams full of rest and relief and a little more ease every day.

  24. Rachel says:

    Hugs hugs hugs my friend. I am sitting here crying, I can’t imagine what you are going through but know we are here for you.

  25. Victoria Hogue says:

    Praying for you and your family to someway somehow find comfort. XOXOXOXO

  26. Cindy P says:

    I read this blog everyday. I miss her too and never really knew her. I try to think about my 7yo and 4yo and how it would wreck me too and I believe that you have a lot more grace than I would have.
    Maybe someday we will cross paths at Happy Hollow, you won’t know me but I’ll know you because you have shared so much. So, if you see a crazy red headed lady blowing a kiss to you in public, it’s just love for your jennifer.

  27. Eileen says:

    So much love to you… I pray for you, I ache for you, I have nothing to offer you but love from a faraway stranger

  28. Jill says:

    I so wish you could see yourself from the outside….
    You are expecting so much from your body and mind and soul. This is fresh. And it is real. And you are just learning to wake up to your new reality.

    You will get to the place you want to be— one where you can enjoy and parent your three living children yet still feel connected to Jennifer.

    I pray that you allow yourself grace to heal. I pray that you can release yourself of unrealistic expectations. I pray you can see how strong and how vulnerable you can be in the same moment.

  29. S says:

    Sounds like your are doing everything to be a responsible & loving parent and you are being true to yourself And all of us on your journey, the one you don’t want – the journey no one wants. Good for you for going out there and doing crossfit!!! If you want another activity that will prevent you from doing any thinking, try Bikhram yoga. All you can do is try to survive in the now…I found I couldn’t think about anything, any problems, any realities, anything. Perfect. There’s a groupon for the MH one right now. Thinking of you.

  30. Shari says:

    Praying for you everyday!! xx

  31. Sarah says:

    My heart just breaks, and breaks, and breaks for you! Tears are streaming down my face. I also pray for you all daily <3

  32. Amanda says:

    Praying and thinking of you. Love love love

  33. Alisa says:

    Still here with you everyday. Praying, crying, caring for you and your family, my new friends I have never met. I so appreciate your willingness to share your grief and knowledge. You have touched so many. Through it all you are doing such great things… I wonder if you really know. Hugs!

  34. Ella says:

    You know… I have been meaning to get back into yoga. Do you want to do this together?

  35. Farrah says:

    Still here, reading, with Jennifer always on my mind and in my heart.

  36. Angela says:

    I am always thinking about you and your family I pray for you and cry everytime I read and think about your precious Jennifer you are a big inspiration my heart breaks for you and your family prayers and hugs to you

  37. Leslie M says:

    Those feelings, like the ones you had at the gym, rage, anger, sadness, fear…my therapist friend says when that stuff comes, instead of trying to push it away, she says I should “lean in” to it. Let it come. I worry if I do it will take over. But she says it’s the only real way to be done with it.
    I know it sounds corny, but maybe once the rage is over, the sadness relaxes and just the love is left. Her love for you. Your love for her.

  38. Denise Brown says:

    I want to give you some hope..I lost my son 10 days before his 26th birthday from diabetes. One day he was here the next day he wasn’t . He went to be with The Lord In his sleep 4 yrs ago..I still have trouble saying that..I want to tell you to hang on during these dark days you will get through..there will always be a piece of your heart missing that will not change..but you will be able to function again & smile again. I also want to remind you that you have other children & a husband that need you..I too have other children & a husband that needed me. We seem to forget while we are engulfed in our pain that they also lost a brother/ sister & your husband also lost a son. Something we did that helped us all understand each others pain was we got together to talk about or loss no holds bared. We cryed we yelled we laughed we hugged & we loved..it was tough really tough since my kids are older than yours & they really know how to express them selves but we said no holds bared. Someday you will be able to get out & seem to have your normal back & no one will know that you have a piece of your heart missing unless you choose to tell them. I found when I got there that there are a lot more broke hearted moms out there than I ever thought. One of those moms told me this at my sons funeral & it has helped me so much.This is what she told me: You will never get over it, you will learn how to go around it..it won’t get eaiser it will just get different. So if you only get one thing out of this long post let it be what this other broken hearted mom told me. May the sun come outfit you soon love & hugs from one broken hearted mom to another.. Denise

  39. Lorraine says:

    I read this without crying…first time. Something in your blog showed strength and conviction. Talking about Mary and knowing that her son, Jesus Christ, died right before her eyes suffering for OUR sins. How sorrowful and amazing is THAT? You are brave and share your story so that we can be better. Why Jennifer died is an answer only Heavenly Father knows. Tough to do, but keep the Faith. You are in His thoughts and plans. Your life is important! Be brave…we love you and pray for your peace and understanding, Libby. Jennifer memory lives on!

  40. Brittany says:

    Hugs to you…I don’t think there could be any right or wrong way to deal. I know I’ve told you before, but I honesty couldn’t imagine even pulling myself out of bed, let alone take care of 3 other little ones. You will ALWAYS be a mother of 4, you will always have the memories, but I don’t know how the pain will ever subside. You are so brave, even though you probably don’t feel it. Her being in heaven is great, but it’s not here with you. I totally get that. Just feel what you feel, meet yourself where you are today, in each moment. ❤️❤️❤️

  41. Kim S says:

    Libby,
    You don’t know me, but I watch for your posts every day.
    I feel so much pain for you when I read them, but I know it is minuscule compared to what you are going through. I hope that by sharing, you are feeling a little less as each of us who reads takes on some of your grief, no matter how small. Your words are so real and so powerful. We hear you. XO

  42. Brenda says:

    In my culture we are not even allowed to forget our deceased loved ones because we celebrate the Day of the Dead…we honor our loved ones with altars that have lots of their photographs, foods they loved, candles and incense, religious imagery. In the case of deceased children, we place their altars before Day of the Dead on All Saints Day, because we believe children who pass away are SAINTS, they are pure and they instantly become angels when they automatically enter heaven. At the altars of children we put lots of their favorite toys, books, movies…we decorate them with balloons, stickers, colorful flowers, glitter, and anything we know the child loves. On that day the family gathers around the altar (usually at home but some families place the altars at the persons gravesite) to talk about the deceased loved one, share memories, eat the food on the altar, and celebrate their life.

    Some people find this morbid or uncomfortable, but anyone who has lost a loved one knows the need to share and to remember. When my husbands grandmother passed away in Mexico they had her viewing and rosary in her home, she was laid out in her living room surrounded by candles and flowers. As an American this was shocking to me, but it made sense and felt like the most natural way for the family to mourn…everyone came to them, they didn’t have to go out “there” except for when we buried her.

    I share this with you, in case you want to ever remember JLK in this way…it is quite beautiful, a time of tears but also laughter. I felt compelled to share because you mentioned our Heavenly Mother…Mary, and she is often the image placed on the altars of children because we consider her the guardian of babies and keeper of their sacred souls.

    Prayers for you, lots of hugs. You are a great mother of four, always.

    <3

  43. Ercilia says:

    With you Libby.

  44. Linda Blundo says:

    Love and prayers for you Libby. I will always be here for you Libby and your family. I will never forget your beautiful Jennifer. You and Jennifer have made such an impact on my life. Im sticking with you all the way. ♡

  45. Kat says:

    Sending you love and strength to make it through today.

  46. deedee says:

    The picture of you administering her meds is a very powerful image. It shows courage, sadness and even a sense of peacefulness,too. It’s almost like a quiet acceptance is also being displayed. I dunno- it takes me in so many directions. The rawness of this photo needs to be shared…you will do good works, Libby.

  47. Erika says:

    You are amazing in everything you are able to do…you are extraordinary.

  48. Maria says:

    My heart aches for you so much… I look at the photos and I see how loved she was… Once again I am sorry for your pain I am sorry we can’t take it away only God has the power to heal your heart.. And it will heal in time… That is the magic word.. TIME.. Give yourself time to heal Libby all your emotions are as they should be but you will heal. I cry for you so much.. For how much you have suffered and for what you have lost.. Life just isn’t fair and it throws you moments that just consume you I am sorry that this happened to your family.. I am sorry that this has happened to so many families.. I HATE CANCER!! Love and prayers to you always cx

  49. Krista Lund says:

    I read everyday. I read the pain, the hurt, the heart break. But I also read the love, the courage, the attempt, the accomplishments. Sending love and support.

  50. Kayla Atwell says:

    So much love and so many prayers! I know there aren’t any right words to say but know my family is reading everyday and praying our hearts out for all 6 of you

  51. Michelle R says:

    The house, the dishes, they can wait. Now, if there’s fuzzy mold emerging from your sink, that’s a different story – and I’m certain we’d all be honored to clean your house for you. And, I would choose to end my suffering too and have her back – I think most mom’s would say that in the midst of grief. I would choose to take her back from heaven even though I know she probably wouldn’t want that. You are strong, Libby, and inspiring. We can’t wait to see what you’ll do next!

  52. tara says:

    I’m throwing glitter in the air today for u Libby and for jennifer. May u feel peace and love from her to energize u thrilled ur day and know that it is OK for u to live and love and miss her at the same time. I love u.

  53. Inna says:

    So much heartbreak and so many tears for you.

  54. Vanessa says:

    You are amazingly brave and I think crossfit is a great outlet for you to have right now. I don’t think there are adequate words to say how much we all wish none of this was your world now. I hope you know how much we all send you love and support every minute of every day.

    Hugs and love,

    Vanessa

  55. Kristen Tredrea says:

    I hurt so much for you Libby. So very much. I am glad you were able to have those conversations with God. I know what it is like to struggle with Him and be on the floor pleading and begging. But I have to believe that He is there even when we can’t feel Him. And I think you’re right, He does get your pain. I am praying for Him to lead you through this.

  56. Amy Ramos says:

    My heart just hurts for you Libby. xoxoxo

  57. Gina parker says:

    Hi. I follow your blog now. Sometimes (more than I care to admit) I zone out on my kids. I do housework. I surf the web, I just need a second to myself. To breathe. Then, JLK pops into my mind. I look at my six year old and realize we are the lucky ones. That you would do anything to have my problems instead of your precious Jennifer gone. I want you to know your story has changed me as a mother. Again and as always, hugs from a stranger all the way from SLC,UT.

  58. Kari says:

    So much love Libby. I am hear, reading, and crying, and praying for your family.

  59. Kathy says:

    I really have no words either…I just want you to know I read everyone of your blogs. My heart hurst for you, all of you, but you Mama have a lot of courage, even though you don’t see it or feel it. It takes a whole lot of courage to share your heartache with us. I have learned so much from you, and to be brutally honest….I wish I hadn’t, because then this wouldn’t be happening to you. I am so very sorry, and those words just seem pathetic….

  60. Sarah smith says:

    When Johnnie died, my mom was in shock. True, scary shock!! People would tell her “he’s in a better place”, but she didn’t want to hear that! She knew that in her arms was the better place. She just wanted to hold him one more time. To be able to say goodbye.
    She didnt leave the house for months. Except to go to the cemetery. She cried everyday. All day. She carried a picture of him in her bra. She wore one of his shirts everyday. She didn’t clean up his room, she didn’t make his bed. Everything was untouched and frozen in time.

    When I read about all the things your DOING, hard, emotionally draining things, I can see why they say no parent grieves the same. I am impressed by your determination!!
    They say that grief has many faces and many agendas.
    There is no right or wrong in this situation. Every emotion, every defense mechanism, everything, is totally acceptable. The body is a crazy thing, it can make you do and feel in ways you never thought possible.
    My mom was a casual walker/exerciser type. After we lost Johnnie, all she wanted to do was run! She’d run and cry and keep on running. The more she thought of him, the faster and harder she’d run. It was a scary thing to see her change so much. But I knew she was doing what she needed in that moment.
    Death changes you weather you want it to it not. But here I am almost 2 years post accident, and I can honestly say that I think we are finally settling into our “new normal”. We can laugh and cry in the same span of time. We can say his name without falling apart. We can tell stories and make jokes and feel ok about it.
    Time does help. Give yourself time. Give Jonathan time. Hes probably a bit weirded out that everything is about sissy, and mom cries alot and people come over and there is mire crying….Things will eventually fall into their new place. Life will hurt less, I promise.
    Until then, don’t force anything unnatural on yourself. If it feels wrong, or too soon or whatever, then give yourself more time.
    Sending you love, Sarah

  61. Kelli says:

    So much <3 to you. She is such a part of your mind, body and soul. I can tell you are doing all you can to take care of those parts (cross-fit, counseling, getting away to name a few ways). I cannot fathom how hard that is- but your amazing strength, love, faith guides you.

    Thank you for sharing your thoughts and heart with us here. You and Jennifer have and will continue to make such an impact on this world. <3

  62. Kirstin says:

    Just as you need to know that its okay for you to feel or NOT feel, do or NOT do, anything you need in order to get through your days, Jonathan needs that same understanding. He has to be allowed to act in whatever way it helps him get through this, as long as he is not hurting himself, and have his words and actions be allowed to happen and accepted as part of his own grief process. The therapist will be able to help guide him towards some activities that will help him cope, but until he gets those kid grief tools in his corner, he is going to do whatever his unfiltered little boy mind and soul drives him to.

    And thats a GOOD thing. Think of it this way – you know he is processing. He isn’t tucking it all away, he is striving to find ways to cope – not unlike your running, or cross fit, or this blog.

    He is going to be okay, Libby. He really is. Please have peace that you ARE providing him what he needs right now in whatever way you can. His heart and soul will take this piece of time and incorporate it into who he is as a person: he isn’t shattered and broken like you are feeling right now. I can only imagine how hard it is to be worrying that he is feeling even a little like you are.

    As always, love and strength.

  63. Ashley Cheechoo says:

    I just want you to know that I’m still here- reading and sending you love.

  64. jennifer says:

    My heart aches for you everyday I read your blog…I have never met you yet I think you are amazing. I pray that Jennifer will hug you and give you signs that she is by your side. Prayers, prayers and more prayers.

  65. Karin says:

    Libby,
    I know I,we,us,this loyal group of readers can’t change how lonely or how isolated you feel, but please know that whatever you are feeling we are here. Thinking of you and praying that you make it through just *this* day the best you possibly can. And we’ll re-pray that tomorrow. And again the day after.

  66. Peg says:

    Libby, I want you to know that I come back every day to make sure you made it through another one. You don’t know me – I am a friend of a friend. Just know that you and your family are in my thoughts and prayers.

    If I am honest, I get anxious when you don’t post. Though if I am really honest, I don’t know how you are able to do it. Get out of bed, that is. I get that the blogging thing is therapeutic and helps sort your thoughts. But you are a hero for just getting out of bed. Just saying. Let all other guilt go away and be proud of yourself for not hiding. And when you have to hide, that’s OK too.

    Don’t worry about your other babies so much. They are resilient little buggers. Glad you are taking lots of pictures and videos of them. You are living in a haze right now and you will want them.

    Much love.

  67. Erin says:

    I am still here.

  68. lisa jack says:

    there are so many of us out here praying for you. I hope you feel & sense that. I pray you feel His presence & peace, even if only for a moment.

    oh Libby, allow yourself grace. there is no right or wrong with this, this isn’t a straight path…its a jumbled mess of a puzzle & piece by piece you will make your way.
    blessings, prayers, & love sent your way.

  69. Suzi sellers says:

    I’m glad you went to cross fit, I know without exercise I definitely would have lost my mind at this point after 2 life threatening experiences with my son. Much love to you Libby.

  70. Anna DePalma says:

    Libby I have no clue if you know Patrick Higgins. He lost his daughter Maddie to cancer just like Jennifer and he has a blog and he posted on it tonight he doesnt do it often and so I thought I would share this with you so you can see that all your emotions are normal. They are going through same thing as you. Hope this helps

    Phantom Limb

    Posted on March 24, 2014

    Today marks six whole months since we were forced to say goodbye. Half a year has passed since we held you in our arms, our mouths gaping, as dumb and helpless as fish, watching as life slowly left you. It must have happened in a different life. A different man felt the pain of that loss. Even as this new stranger I’ve become feels it now. It could not have happened. Although six long months have passed, my mind still refuses to accept it. How could it be true? How could the world last without you in it? How has time continued to extend its slow loitering pace without the clockwork beating of your heart to drive it? How is it possible that when the flame that flickered so brightly within you hissed into darkness, that the whole of existence didn’t fade as well? All becoming blackness… The entirety of all matter collapsing in on itself into a single point, then blinking out… A big bang in reverse.

    It’s not real. You are still here. You must be. Any night, in the darkness of our room, I can hear the door creek in its hinges as the cat nudges it open, and for a brief moment I expect to see you standing there in the doorway, your small silhouette outlined by the dim light in the hall, your favorite dolls clutched to your chest, your hair its usual wild bird’s nest. And in that moment, in those slight seconds, I am myself again. I am whole. The missing piece of my soul fitted back in place. My compass stops its random spin and points in a direction I can follow… And then reality cuts through the fog of sleep and I must be this stranger again. This tin man with no heart in his chest.

    There is a strange phenomena often described by survivors of warfare or violent car crashes, when the price of that survival is the loss of a limb. Usually beginning within a few months after the limb’s separation, the victims claim they can still feel the limb as if it’s still attached to the body. Phantom Limb they call it. Some report the feeling of the limb in its normal use, such as standing on a missing foot, or grasping with an absent hand. Some describe tingling or numbness as if the limb is “asleep”. Others express feeling like the limb is there but somehow shorter than it was, fully functioning, but inexplicably truncated. But mostly, the sensation is described as pain, some quite intense. Imagine a pain that’s source is nothingness. A void not satisfied in simple nihility, but one that must make you constantly aware of its lacking. A nagging cipher determined to fill a space left by its own vacancy.

    I welcome this apparitional agony. I long to fall endlessly into the vacuum that exists in place of you. To be lacerated and burned by the pain of your absence. To be crushed under the massive weight of the thin air you disappeared into… So I can never forget… As long as each breath is searing inside my lungs, the air I exhale will carry a wisp of you in it.

    But already, I feel you slipping away.

    Like an amnesiac, I’ve lost wide, unknown rifts of time. There was a bizarre flash-forward, and without warning, you were gone… Simply vanished. Your presence, once touching and influencing every minute aspect of our lives, suddenly arrested. A still-life captured in the instant of a brilliant incandescent flare. Its brightness so vivid, it has burned out the image, and a blank canvas is all that remains. The echoes of you, I thought would repeat infinitely. Now with every pass, each call seems quieter than the one before, their reflections casually receding into the distance. Already I find myself struggling to recall your voice. A sound I thought hardwired into my brain, as recognizable as my own, reduced to mere hints of whispers, indistinct, like wind through leaves. Your face… Your sweet angel’s face… An image burned into my eyes, like a camera flash that lingers long after the strobe. The starburst shape, kaleidoscoping into slowly changing colors, superimposed over all you see. Obstructing your view of the present, it demands you remain locked in that instant of the past, forever aware of that short bright burst of light. With eyes open or closed the soft glow of you, is always floating in my view. How long before it too fades?

    We are now staring down the coming of spring, the capping of the autumn that your passing began, and a winter, more cruel and cold than any I can recall. Our lives so different than what they were, now locked into a new monotonous routine, a regimen that seems to vary so little. Each day a facsimile of the last. Carbon-copy weeks turn into replica months and peel away beneath us. We repeat these same practiced movements again and again, without thought or emotion. A mundane time-lapse loop. A treadmill existence. An autopilot life.

    But as we passively exist, we cling to the pain of your loss. We cherish it. Without the unbroken perpetual thrum of longing for you, we have no direction. Our lives have no detail, we are reduced to rough sketches of ourselves.

    For the whole of your life, you were the center of our world. You still are. Just as you were in life, you are the subject of every conversation, the origin of every thought, you occupy every dream. When the light that was you went dark, all the energy that powered every particle of your being collected itself in the air above us, and hovered, before being scattered into the rest of the world, returning to where it originated, to power the particles of other things. The largest portion, however, we stole for ourselves, the majority of that energy… that light… that soul… lingers with us. And we greedily survive on it.

    My eyes can no longer see you, my arms can no longer hold you. But my soul still feels you. And I know you are still here.

    Share this:

  71. Susan says:

    I am still here reading and praying for you! I have no other words, I am at a loss because I know that words don’t really help. I do care though, we don’t know each other but I do care, for you and your children and husband. Be kind to yourself!

  72. Heidi says:

    I am still hear reading,listening, sobbing, and praying for you and your family. All my Love

  73. jamie says:

    We’ve never met Libby, I started following your story from my friend Heathers page and I just want you to know I read your blog everyday with my mom and I will never ever forget sweet Jennifer or your family ♥ I wish there was something I could do to take your pain away : ( I know something will change for pediatric cancer because you’re an amazing person and people will follow you for a long time to come : ) keep your head up and keep fighting and people will follow you ♥ I know I will #LOVE4JLK

  74. Denise Pandya says:

    sending love, prayers and hugs… big huge hugs <3

  75. lizi says:

    No words, just wished I could give you a hug. My little family and I have so much love for you!

Leave a Reply

Your email address will not be published. Required fields are marked *

Join our Newsletter

submit

Contact

Fluttering

Unravel Team

Get Involved

Upcoming Events

links

Stay Connected

follow on instagram @unravelcancer

follow us on facebook 

© 2024 Unravel Pediatric Cancer, a 501(c)(3) non-profit organization. EIN: 46-5720960

Join our Newsletter

Contact

Fluttering

Unravel Team

Get Involved

Upcoming Events

links

Stay Connected

follow on instagram @unravelcancer

follow us on facebook 

Thanks for joining the unravel newsletter!