rear view mirror

I don’t want to write tonight.. I don’t want to go there..

here.12598940143_2eaec63cd4_b

To remember where I was 4 months ago tonight. Steeling myself for the something so strong ..

it dissolves steel.

It started to hit this morning.. driving to a friends house I cried silent.. tears… but since then I have run from the truth that haunts me ..

I cried angry tears and sad tears.. Relay for life is soon to happen in my town. Driving I saw the purple ribbons everywhere.. I wish I had no connection to it…I wish it didn’t impact me like it does. It made me feel stupid looking at them. . How I had been tricked into thinking that the money raised was for all cancers.. pediatric and adult when in reality it is unproprtionaly split towards adult cancer. 1 cent of every dollar goes towards pediatrics (PAC2)

A worthy organization in that regard.. they have done amazing things.. saved countless  ADULT lives.. for that we should all be grateful .. my issue is with their advertisisng and how they dont market themselves honestly.

You know what. This is my blog.. my journal .. my outlet so I am not going to be “pc” about it.

I was so angry. Teeth gritting and hands gripping the steering wheel… driving to one of my daughters best friends house.. looking back and seeing a empty seat.. where my 6 yr old should have been.

Angry at first about being tricked.. fooled into complacency… Then my anger hit a new high when I realized maybe it didnt have to be this way. Maybe if Relay and American Cancer Society gave kids a bigger cut..

maybe she would still be here. .

Maybe if our government gave them a little bit more money .. I would have a survivor on my hands..

instead I am looking in the rear view mirror at a blank space.

fuckers.IMG_1366

Then the guilt hit.. And I ran from that hard and fast all day long..

I know I won’t be the one to make the change happen.. but perhaps I can be a instrument in the changes that need to happen. What if I had done it sooner? What if I read and truly took note of the articles that I am sure were floating around. What if I had learned the facts before it was my daughter going before the tumor board? Would it have made a difference?

I will never know.. but I will forever wonder..

We are supposed to protect our kids..To struggle letting them grow up and move on..  to keep them safe and healthy. ..

really

…just alive. That’s it. Just keep them alive….

Why couldn’t I do it?

Instead I find myself looking at a l.e.d dragonfly in our backyard.. longing and apologizing to the wind.. hoping my message gets carried to her..

I hope my cries were muffled enough so the boys couldn’t hear me as I could run no longer looking at her dragonfly lite up in our yard.. I think Jonathan knows.. on a cellular level I think he knows that a milestone is coming..The boys fought sleep tonight. Something they rarely do but it was a nightly occurrence with Jennifer and Jonathan. It drove Tony batty tonight.. but not me. I just figured out why ..because it means tonight they are relating as friends to each other. Not just room mates.. but real friends.

I think about how she asked for her own room when we came home from Stanford.. we thought it was just that she wanted IMG_1992her own space.. that on some level she knew she was dying and wanted to freedom to do that. We have also thought that this was a way she was distancing herself from Jonathan..

IMG_2885maybe the friendship between her two little brothers was also something she wanted. The way she loved these boys.. and taught them how to be loving to each other… It really wouldn’t surprise me if that was a piece of it for her.

I think that awareness Jonathan has, might have also played a part in not wanting to sleep tonight. He has not slept with me since he was a baby.. but last night he came to us in the middle of the night.. just needing us.. nothing overt really.. So I grabbed him and he slept in my arms.

There was piece of me, one that I am not proud of..  that wanted to pretend it was her.. to whisper her name.. to try to force my arms to remember her weight.

IMG_4650Today he just seemed to be taking note.. looking for her everywhere and in everything. We played outside and he found a wisher (dandelion) and proudly brought it to me. I made my wish. Later on he found a flower (weed) and genuinely excitedly brought it to me pointing out that it had one tiny part of a wisher stuck to it. He is truly absorbing everything we do and say in regards to Jennifer. It is so much pressure to be sure I am doing it right.

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**not today, but his positioning was much the same**

We ended up playing tag and a few butterflies flew around us.. one in particular cut right through us and Nicholas, Charlotte and I all just paused and watched it. Jonathan froze in place.. finger out. Hoping so intently that it would land on his finger. I knew that look from having felt it on my own body just a few days ago.. that afternoon looking at her picture hoping if I did it just right I could make her come back out of it.. He had that same desperate intensity trying to will that butterfly to land on his finger. When it didn’t I noticed the wave of disappointment wash over him. I wonder what it translates to in his little mind?

Couldn’t help him through it then though.. I was too busy running from my own sorrow.

Inside not much later he came skipping to me. .simply bursting at the seams with joy when he noticed the glitter all over his hands. Pure joy as he held them up.IMG_4684

At prayer during dinner Nicholas thanked Jesus for taking Jennifer home. We don’t actually use those words in regards to heaven or Jennifer now, so it stunned Tony and I for a moment. .. however since he is the one I think sees/connects with her hearing him say that slowed me down again. Then Jonathan sharing about how he missed sissy today paved the way for the pain to start to penetrate tonight.

I remember holding her. Breathing with her. Paying attention to the spacing between each rattling breath she took. Always waiting for it to be her last. I remember by this time being so content with her.. happy that it was just her and I again. Tony wrote about the huge seizure she had.. and how much he especially, struggles with the worry that he was the one that caused it. I wanted to move her just one more big time. I had wanted to do it all day, but since I had to get up to pee and nurse the baby we didn’t dare until we knew I wouldn’t move again while she was still with us.  I had a need to get her perfectly positioned in my arms.. so we could be completely wrapped up in each other. We took our time mapping it out before doing it. It was truly terrifying.

OLYMPUS DIGITAL CAMERAAnd then freeing. To hold her way I had for so many nights as a baby. As a

** the morning she went on hospice, our last night in our bed**
** the morning she went on hospice, our last night in our bed**

baby she slept in our bed in my arms.. absolutely perfectly for months. We both slept well.. still could. The only one of my 4 I could sleep well with past a few weeks old.  I needed to cradle her like that again. ..maybe she held on for that time too.. to get some hours, back together again, the way we were both most comfortable.

 

 

I heard her body make noises I won’t describe, that I will never forget. I felt her body change in ways that I can only assume give me the nightmares I cannot remember.. And I witnessed her last breath.

I just want to hold her. To kiss her again. I hated seeing her suffering the way she did.

But at least she was still here.

Tonight I don’t care how perfect that other home is..

I want her here in mine..

I want her back in my rear view mirror.

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42 Responses to “rear view mirror”

  1. I am sorry Libby.. 🙁

    My heart is breaking for you. I wish she was here for you still too.
    Love-hugs&prayers.

    1. I feel you…and it all is as you write…she should be here and we must never stop to find the cures…prevention’s and everything in between to make this stop. My heart is on fire for you and your family.

  2. Man, I can’t even fathom the sorrow you are in. I have experienced my own sorrow, but losing a sibling is a much, much different kind. The part about the led dragonfly… I have one too! The part about the butterfly cutting through the group…. It’s happened to me countless times! There is something to that! I know there is, I feel it! My daughter is 3, I swear she gets visits! She knows things and says things and its things a 3 year old just doesn’t normally say. I’m pretty sure Nicholas is probably the lucky one, and Charlotte too I imagine. I feel like Jonathan coming to you in the middle of the night was probably more for you than for him. It’s ok to let yourself get lost in dream land. Hug him! Hug him tight enough that she can feel it in heaven. I remember one evening about 6 months after my brother passed, my daughter, age 2 at that time, said “I give you an Uncle Johnnie hug” she proceeded to hug me so big and so tight, that it felt like he was hugging me! It brought years to my eyes and I really felt like he had come to me thru her. When I share those things I feel kinda like a crazy person, but I really did feel like that was him that night, I still do!
    I’d be lying to you if I told you your guilt wasn’t normal. My mom still feels like in some way she caused Johnnie’s death! It ridiculous to hear that as outsiders, to think that she had some abstract way of controlling life, but nevertheless she feels that way. I could tell you the same things, that life happens the way it wants, that moving her was harmless, that you should let go of those guilty feelings, but I get it. You can’t, and Tony can’t, and I get it. You will have those thoughts and memories and visions and there isn’t any magic spell to make that go away. It’s human nature and that’s just the way we humans work.
    I want so badly for you to have your life back! For this to all be a huge nightmare and tomorrow you will wake up and your world will be right again…. Frick man, that’s what I want for my life too! It sucks! It’s not fair! I don’t get it! I don’t understand it! But it is…. And now we are left in the aftermath.
    We are about a month away from Johnnie’s 2 year mark. 2 years! It feels like a lifetime and a blink of an eye all at the same time. 2 years has given me strength and hope. I cry less and I pray more.
    Tonight I pray for your peace of mind. I pray for your strength. I pray for heaven to show you signs so that you may stay forever faithful. With all my love and understanding, your friend, Sarah

  3. My heart breaks for you. I’m praying. This is all so unfair. I’m just mad. I wanna DO something. Anything to ease your pain, but I know I can’t. I’m so sorry. This all is so unfair and heartbreaking.

  4. Every damnedest day I wish things were different. Different for your family and for the others I follow. All I can do is pray, spread glitter, and do what I can financially. I am sorry for your loss.

  5. I wish things could be different for you and your pain washed away. I cry with you and feel your pain, we all love and miss Jennifer. I donate and go to her fundraisers but then you wonder is that enough, I want to make it better. Im so proud to wear her t shirts and wrist band but then again is that enough, will we ever know…we need to just keep trying…much love for you Libby big hugs and Angel kisses and glitter All around us.thank you for sharing your feelings and most important Jennifer..

  6. We are thinking of you, Libby. Thank you for continuing to share. It sucks you are going through this but you are making a huge difference in so many lives, if that is any small comfort.

  7. I’m glad you decided to write and I’m really sorry that today was another hard day for you Libby. I’m sorry that you are going through this. I think of you daily, I pray for you daily. All 6 of you. xoxoxo

  8. Libby I love u and Jennifer is right beside u. My heart breaks for ur pain . U are such a loving mother . I wish this did not happen to ur family or anyone’s family.

  9. Thinking of and praying for you and Jennifer. I can’t believe it’s been 4 months. My heart breaks every day for you, Tony, Jonathan, Nicholas and Charlotte. I wish there was something I could do…with all my might.

  10. I am so sorry Libby. I wish with all my heart and soul she was still here with you. Even though I have never met your beautiful amazing Jennifer, I miss her very much. I think about her every single day. Jennifer is and always will be apart of my heart and so will all of you. Today, myself, my daughter Eva and my husband Jason will release some pibk balloons in memory of Jennifer. I promise you I will never forget her and I will do all I xan to help fight this war against pediatric cancer. Together we can all make a difference. You all are in my heart my thoughts and my prayers, today and always. LOVE4JLK♡ We love you all. ♡♡♡♡♡♡

  11. Sending you all hugs. My heart aches and I am using the anger and pain to drive me. We need to know the sad and shocking facts about Pediatric Cancer funding- or lack there of!
    I visited The Barn yesterday and I think we are going to book it!!

  12. Libby it is normal for you to feel what you do. Its has not been that long since Jennifer passed away. You can not go back to normal in such a short time. Some people do it but I know when I lost my mother I was with her. I was 13 at the time and every February 19th I relive that day. I am 61 now so you see its normal to relive each moment of that day. It was the last time you held her and felt her close to you. You are doing what you have to for your family right now and I give you a lot of credit for doing all you do with your kids. I am amazed on how you function but with three little children you don’t have much choice. The time will come when you will be able to get back some normality in your life again but until then take one day at a time. Loosing a child has to be the most devastating thing in the world. My heart hurts for you and Tony. I feel the pain you guys are going through in just reading your posts. It makes me so sad to know how much suffering you two are going through each and every day. Its not fair at all. I often question God my self when I pray at night. I ask God why is it that some people have what seems a wonderful happy life and I can’t have just a little bit of that. It seems all my life I have had shit luck no matter what I do and I feel I passed it on to my daughter. Is that stupid of what? It might be but thats how I feel. My daughter married a jerk, is in process of divorce after he cheated on her and not to mention she lost a baby in her fourth month of pregnancy and has had female problems ever since only to find out last week that the doctor that did her D & C left a piece of white plastic (could be tape from an instrument) which acted like a IUD and made it impossible to get pregnant again. I know this is nothing near what your going through but do you understand how sometimes I feel like some people are so happy and everything is great and all I have is shit luck and there are times I dislike happy people. Im sorry didnt mean to throw in my life story but when you post and you pour your heart and soul out there and your anger I can totally understand at a different level. I pray for you and Tony and your family every night. I pray for strength, comfort blessings for you guys. I read your posts and cry sometimes because what a beautiful little girl you had and I am sure she would of been a blessing to everyone she met because just reading about her and seeing her pictures I can tell how beautiful she was inside and out. Libby take your time and mourn your beautiful daughter and when the time comes and you can accept it all is when your normal will come. She will always be in your heart and yes someday that butterfly will land on someones finger and I am sure it will beautiful and it will be a sign from Jennifer. Love you Libby and your family. I feel like you are a part of my life each and every day.

  13. I’m so sorry Libby for all your hurt! It’s so not fair! You shouldn’t have to hurt like this!! I’m hoping for you and your amazing family a thousand butterfly kisses today! She is there wrapping her wings around you all!

  14. Libby,

    My heart of broken for you and your surviving family. Sometimes life is just so hard and deeply unfair. I really love you and am sending you love and peace and hope and strength. Still here reading….

  15. Tears and more tears for you..You and your family are in my thoughts everyday and I wish so much that she was in your rear view mirror…

  16. Sending all 6 of you lots of love and hugs. Praying for comfort. Keep fighting, Libby!! You’re amazing!!!
    XO

  17. The beautiful white butterfly we named Jennifer just flew through our yard in Sunol. She lingered long enough to bring smiles and giggles to the children’s faces. Thank you!

  18. Tears again…. You have opened my eyes to pediatric cancer and the need for funding, research and more support in every way. I believe you will be the change. Your story – as much as it pains me and I beg it to not be real – has been the strongest message to me and I believe for others too. Hugs and continued prayers for our entire family.

  19. Today it has been 10 years since my mother died. I can’t really believe it. But today, even though I cry, I also have decided my daughter will not ride anywhere in a stroller. I carry her all day today and feel her weight in my arms and feel grateful. That is my pledge for the 12th of every month. I like to believe she and Jennifer have found each other and are sending warmth and strength and love. From one broken heart today to another, I certainly am. Xoxo

  20. The best thing to do is to put the money where you KNOW it will be used. St. Baldrick’s is the best place by far to put your money towards pediatric cancer research. American Cancer Society did NOTHING for us while my son fought for a year and a half. They had all kinds of stupid stipulations and requirements and limits, making it nearly impossible to qualify for their “charity”. Just like you said….Fuckers.

  21. My heart aches for you and Tony so much I think about you everyday… Everyday I think about Jennifer… I can’t imagine your pain and I am so sorry I can’t help… Sending lots of love to you all xx

  22. Continued love and prayers. Relay for Life is in my town too. Thank you for opening my eyes to where their money goes. Pediatric cancer research is where I want mine to go and I can now make sure that truly happens.

  23. Two nights ago I was fortunate to be in the company of an amazing woman… An amazing woman whose story (just like yours) touched so many and whose child (just like yours) has touched so many… He passed 7 years ago and the story I heard was one of tremendous courage,passion and strength. This mom works in Gilroy and would be happy to connect with you…. Let me know.

  24. I am sure I only feel a shadow of the heartbreak you feel when I read your posts. I could not imagine not having any of my babies in my rearview mirror. I am so sorry, Libby.

  25. I haven’t posted for a while but still praying and reading. I feel like I can touch your emotions you’ve written about. I wish I could reach through the computer and just give you a big hug. But since I can’t I will pray.

  26. And read every single blog that you post. I cried for you and pray for you guys. Just know that you have support from all over the world.

  27. Still reading, still sending love and prayers for your minute by minute, day by day strength and healing. While I don’t say much here, you are all on my heart constantly. Some day soon I know we will be working side by side to accomplish something BIG in Jennifer’s honor. I have come to love JLK like my own daughter, and you like a dear friend, because of your humble willingness to be so open and transperant. And also because this is God’s plan, that we come together in love and concern for one another. Bless you, Libby, this day and every day.

  28. It breaks my heart that you hurt this way, I don’t know how you do it. I thank you for giving me the awareness of how short changed pediatric cancer is. don’t they realize our kids are the future. I prayer for you and your family every day.

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