simple acts

I just want to write something about my post from last night I have gotten quite a few comments about it. .. All opinions expressed here are my own.. They may not fit for every bereaved parent.. but I share so that people reading can know what its like.. 2.5 months out in one mama’s head..

I know..I truly appreciate how much people want to help and comfort me… .I know that what is said is only coming from a place of goodness and wanting to help.. I write to sort it out in my own head.. and because it might help others to read my thoughts, to sort their own.. and especially because I know how scary it can be to speak with somebody in my shoes.. hopefully sharing what does and does not work for me will help ease some of those fears.. provide a little bit of a blueprint for what helps Libby and what doesn’t..

A comment on the blog put it really well..how my relationship with God has changed.. .

” Prayer doesn’t change things, it changes me”

yup..

Today was a mini trial run for Tony’s return to work.. He went golfing and out to dinner with some of his buddies. My mom came for a bit to help distract the kids so I could have a phone call with the head of the Stanford research lab. I just had a few questions and she carved out some time to speak with me.. she didn’t have to.. she is just that caring and appreciative for Jennifer’s donation and for our desire to make a difference.

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I had a lot to try to get done.. but Nicholas asked for me to sit with them and watch a show… my no into yes for the day. Nicholas seems to sense my emotions and does his best to stop them before they start…yesterday it was during his sink bath…turning the faucet into a phone…hellooo mommy. Today..it was watching some Tom and Jerry with my boys. Then we went outside and played bubbles and watered the trees. We took down the hummingbird feeder and filled it up..

Jennifer loved watching them feed. I think she really loved spring time. We would start going outside every afternoon (our mornings were usually filled with errands and friends). I see the blooms starting on the trees and I remember being outside ..always sharing a blanket…sharing a giant bowl of pirates bootie…sharing a selfie.  It feels like a lifetime ago..

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.. . well isn’t that ironic..

Night time I sink. Hard like a rock. It feels like the dark of the night swallows me up…enveloping me..

… its a swift and sometimes frightening  drop .. I wonder..

have a hit the bottom?

No idea.. since morning comes.. the culmination of my nightmares… To wake up to a new day blank.. those first moments that I wake… breathing in a new day taunt me.. as reality plows into me..

Jennifer is gone.

I get up though.. and do the day. I talk about her. I walk past her room. But it almost feels like I am floating above the truth..

We played with Jennifer’s bubbles again today. We watched some float and dance on the wind…we sent some up to her. Jonathan thought she was getting too many .. so we asked her to send some back. .

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Simple acts.

Lead to simple conversations about her.. with her.

They bring me back. I cry. Just for a moment. Missing her. Wanting her.

…watching my sons sorting through there need for their big sister in the midst of confusion about where she has gone.

Yet also being kids having fun chasing bubbles.

Simple acts.

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I am trying to connect a little more during the day. Maybe the nights won’t be so hard. I have difficulty with it most times. My boys though.. Tony, Jonathan and Nicholas.. they bring a safety that allows me those moments.

I just don’t understand how I can talk about her.. about her illness… about her life and not break down. But I don’t. I hardly even feel it. The other day I got a book from a woman who lost her child and reading the note my first thought was literally

“oh how sad..I don’t think I could…”

then I remembered..

I am.

How is that possible? How does my mind protect me so valiantly.. so much so that I can forget for 8 words .. like completely. Totally forget.

I went to crossfit tonight. During warm up they played a version of the song we played as we walked her down the aisle. I’m a bit of a traditionalist.. I never wanted to walk her down the aisle.. That should have been reserved for just her daddy. He got a chance at Fairy’s wedding..K-2014-01-04-152

Watching him that day I already knew.. I knew that would be his only time to do it without me. I decided that day we would carry her down the aisle that final day together.. though I thought we had a lot more time..  .

a lot. Wow.

I meant that. I really meant “a lot” .. how is my world so turned upside down that 6 months would have been a lot of time with my 6yr old??

I hoped for the miracle to happen.. I was preparing to find the right clinical trial .. I was trying so hard to convince myself that any of it was real..

.. . I think I still am.

Finally now just coming to terms with saying my daughter has cancer. I think that fact. A fact.. shoot. .. has penetrated. Become real.

Devastating.

Though the day we were told still feels like a movie.. I know what happens…but not because I lived it.. It’s like I remember IMG_6515watching it. I remember most of that day through pictures.. Only a few moments I remember from inside my own body.       “there is no cure” and hiding on the side of the house at her birthday party .. to heave out my tears. I hide them that day.. Thought I had to protect my kids.. .

life is so different now. As we cry together and blow her bubbles.

There is still a balloon from that day… her 6th birthday… Oct 28th. .. floating at the top of my brothers ceiling. What a sad day for my nephews when that balloon falls.

We leave tomorrow for bereavement camp. Its for our whole family. A place to meet other families that have lost children to cancer. I’m trying not to have too many expectations.. since that never seems to go well for me.. .I am hoping to learn some.. and share some.. Mostly hoping its good for my biggest men. Tony to meet some husbands and Jonathan to meet more bereaved kids. ..

What a awful club for him to be in. For all of my kids to be in. I want to do right by them. Help them grieve.. through out their lives since I know they will.. but i don’t want this to be their identity either. Just a piece of them..

blue eyes. blonde hair. dead sister. ..DSC_0604DSC_0641

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I am doing my best. It feels like almost everything in me wants to throw all that out the window though.. .It is so hard to parent properly when I know what I know now.. They could be taken tomorrow. I am so scared of that. Of losing Tony or another one of our children. Even typing that terrifies me. . . like somehow I can bring my deepest fears to life..

again.

I worked really hard at that with Jennifer and her celiac disease. I worried a lot behind the scenes but did my best to not let it identify her. Its was a constant balancing act. . advocating for her needs and feelings without making excuses for her..  I guess its the same for me now with the 3 remaining.

 

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Jennifer I hope there are bubbles in heaven.

I hope you are blowing big ones.

I hope you are running around with your head tilted back laughing..

 

… i whisper…

-i hope I get to see it sooner than I am supposed to want to-

In this moment.. in the depths of my pain.. I look at your pictures and I am again struck with the thought from earlier..

…. oh how sad..I don’t think I could…

survive.

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57 Responses to “simple acts”

  1. Libby your thoughts and feeling are yours and your going to get everyone’s options, it’s ok remember there not in your shoes. . These blogs are for you to vent and share your beautiful Jennifers life and memories with us. I thank you for letting me be a part of your journey. I will Never judge you Libby just be here to listen. Thank you again for letting me be apart of your journey and sharing your beautiful pictures of your family of 6.. Big hugs and Angel kisses

  2. I am glad you wrote what you did. Gave me realization. I criedon’t (as usual)….then said a silent prayer to Jennifer. Libby, I hope you never ever feel the need to apologize on here. You dont. Not ever. This is your place. Your reality. You invited us here….and i can never find the words to thank you enough!

  3. Once again your words have taken my breath away. Hoping for more of those small moments. All my love. All of it.

  4. Please don’t ever feel like you need to explain. Just feel. Just be. It is okay.

    Still reading, still sending love.

  5. Prayer doesn’t change things. It changes me. Beautiful. Thank you for sharing your journey with us. Thank you for being raw and real. So many times we don’t know what to say, so now we at least know what not to say. Thank you for opening so many of our eyes to childhood cancer and DIPG, though I wish it didn’t happen to your family. Thank you for making so many of us moms realize we need to appreciate every moment, turn nos into yeses, and take too many pictures. Tomorrow is not promised. We too often forget that.

    I continue to pray for the 6 of you, for your time at camp, and for Tony’s return to work to be as smooth of a transition as possible.

  6. The need to explain..it’s hard sometimes …the need. But don’t feel like you have to. Your strength in the words you write are beautifully devastating, a beautiful disaster if you will. It’s yours and only yours, and I to thank you for sharing and allowing me to be here. JLK is always in my heart and thoughts, everyday! So is your awesome family. Libby, your doing it right for you. Always remember that. <3

  7. Libby,

    God Bless you, Angel Jennifer, and your beautiful family. The pictures you share of Jennifer are priceless. Jennifer looks like a little princess walking down the street with her Father. No amount of words, at this time, can heal the pain, anger, resentment, shock, and loss you are feeling. I am so sorry this nightmare has become your reality. Life is not fair. I see Angel Jennifer “Blowing Bubbles in Heaven”.
    You are an amazing women, wife, and mother. Every day your posts touch my heart. With love, Jan Rien

  8. I lost my son to cancer less than three years ago, and I am amazed at your insight so early in the game. Your words have helped me process things that I cannot put into words.That’s why you have to continue to be honest, you must continue to write what you feel. Anyone who writes concerned that you’re not “over it” yet, or concerned that you may be slipping and need to see a counselor…..ignore them. They have no clue. What they should be saying is “Can I sit and listen? Can I buy you a coffee? Can I give you a hug?” But most people do not want to expend themselves that way. They want to help as long as it doesn’t “cost” them anything or any effort.
    The emotions of a grieving parent are ugly, and beautiful at the same time. It’s hard, and will last until you meet her in heaven. Your grief may change, you may learn to cope better, but you never get over it.

    This FB group has been a great place to be honest among other parents who have been there.
    https://www.facebook.com/groups/264529873599659/

    I sent you a PM on FB, it may be in your “other” folder. I wanted to tell you about Okizu. They have a bereavement camp for families in September. It’s been a huge blessing.

    ((hugs)) and prayers, I know only too well how hard this journey is, and I appreciate that you are brave enough to bare your soul in such an intimate way, I know it’s so very hard……..

      1. Okizu is great. When I was 10, my friend was diagnosed with Leukemia. Her 4 siblings went to Okizu every year, and now at ages 19-25 they still talk about that camp and how amazing it was and how only the kids there *know* how they feel.
        Even tho I’ve not met you just know that I am sending you love, hugs and hope Okizu is a beneficial time for you all.

        Kendra

  9. Still here, still reading, still amazed and thankful for your willingness to let us all in to your grieving heart and mind.

  10. sending love and hugs as always. I read and I cry, yet i feel useless because I have no words to offer you. Other than telling you I am praying and thinking of all of you each and every day

  11. Prayers and hugs everyday. You are truly an amazing family. How wonderful for you to open up your most personal thoughts and share them. Your Jennifer must be smiling down and thinking how wonderful you all are. God Bless.

  12. I have never felt anyone’s words as I feel yours, not in any award winning book. You write what you feel and not what you think people want you to write. I admire you for that. Thank you for everyday dusting our lives with a little more glitter from JLK! I hope heaven is for real and all of us who fell in love with Jennifer get to meet her when it is our time.

  13. You have the right to your feelings…sweet Libby! Your words never fail, it’s the words of strangers that might though, struggling to comfort, to understand, to remember, embrace…celebrate Jennifer…it is hard. I want to skirt around the loss, focus on the good…seems impossible. That is why you are amazing! You are wading through this, you inspire, your raw emotions, sharing, your willingness to reach out, put it out there…I would have loved to see the tough, smart little princess JLK would have grown up to be. I am sorry you were robbed of that opportunity…not fair. She should be here impressing us all, like you are…like mother, like daughter.

    I hope you find ways…learn slowly…to incorporate her in your everyday life, close the gaping wound, maybe a little. I knew a person who dedicated the guest room in her home to the memory of her mother…decorated in her moms favorite colors, items, she made a quilt out of some of her clothing, hung pictures of her…and she would sit in that room, talk to her mom, cry, when she needed to. Some people might think it unfit or weird, but we all grieve differently…I personally would do something similar…and maybe never want to leave, but it would keep me close…an extension, a life line…memories, a space that belongs to the person who should be here.

  14. For what it is worth, and I probably wont articulate this well… For me, my brother’s death is for sure part of my identity, its a big part, but I consider it to be a good part of my identity. I know that sounds wrong, but the ways in which it shaped me are mostly good ways. I am different than if he would lived, but it is not a bad different, it is just a difference shaped through the pain of grief & loss. Of course I wish he was not dead, but I do not lament the person his death made me. I just pass this on to you in case it helps you to project what your kids might possibly feel some day about losing their sister.

  15. I love your honesty. I totally agree that you are helping so many to be able to sort their own thoughts out. As weird as it may sound thank goodness for a place where real words and feelings are expressed. I also love how we are all on our own journey with The Lord. NO ONE gets to judge or dictate that or even try to “fix it”. Keep writing and expressing because this is your healing!! This is your process and special place thank you for including us. May we stand and support you in whatever way you need at any given moment. Through prayer, silence, anger, despair, confusion, happy tears whatever it is.

  16. Like many other people I do not know you Libby but I have been following your blog for a long and I just want to share with you how much I enjoy reading about your Jennifer, seeing all the pictures of the children and reading about all the small and simple joys you find in each day. Without a doubt Libby, you are an amazing mother, admirable for so so many reasons. Hoping for Peace and patience for you and your beautiful family.

  17. The pictures of Jennifer are amazing! I am amazed that you have so many pictures…you inspire me every day! To take more pictures, to turn no’s into yes’s, to live, to love, to hug…the list goes on and on…Thank you for caring enough to share! And if I ever say the wrong thing, just ignore me…loving you all from the East Coast…

  18. Always remember there’s no right or wrong way to grieve. It’s individual and personal. You’re living it and getting through the only way you can. You all remain in my thoughts and prayers.

  19. You feel what you feel, and you need what you need. There’s no need to ever explain how you handle this. Still here, still reading and praying every day for you and Jennifer. Sending love to you as well…xo

  20. I’m glad you touched on your feeling of God and Prayer. My niece told me recently that she doesn’t believe prayer works. She lost her little sister to SIDS and little brother is battling cancer now. I didn’t know how to respond. I’ve felt the same way. Complex subject. Feels taboo with most people. Thank you for sharing your feelings – comforting in a way, someone else feels similarly.

  21. I hope you feel all the hugs I am sending. I am very proud of you and so grateful you continue to share you story. I think about you and your sweet Jennifer all the time. xxoo

  22. Just a stranger letting you know I have been here since your first post and will continue to be here.

    Thank you for being brave…….

  23. YOU are the answer to your prayers for peace and strength for your husband and kids as they move through this unbearable pain. Your deep, abiding love for all of them as well as your honesty and candor as you deal with your own unimaginable hurt is the greatest love you can convey. Don’t change a thing, you and your amazing, adorable, sensitive, remarkable Jennifer are changing many people’s hearts.

  24. Every morning I wake up, read your words and hope that I have something profound or prophetic to say and I always come up with nothing but THIS JUST SUCKS ASS and IT’S NOT FAIR! I turn more no’s into yes’s everyday with my 7 year old for because of you. Thank you for sharing your most intimate thoughts and feelings with complete strangers. It’s amazing how much you and Jennifer cross all of our minds every single day! Sending you lots of love, prayer, support and peace from Oregon!

  25. I hope her “hellooo mommy” picture brought you a smile, as it did to me.

    Take care of YOU, take care of YOURS.

  26. Your blog, your writing, your voice. Simply amazing. Reading your words, knowing you, I can hear the “old Libby”. You are funny, you are sarcastic, you are insightful, you are strong, you are brave. You are grieving. You are changed. And I still Iike the “changed Libby”.

    Ok,that sounds stupid and corny coming from me, I hope you get the gist of it.

    You are doing amazing things.

  27. I second checking out Okizu. My husband and family have gone for many years….amazing people there. Hugs always. N

  28. I hope camp is a good place for you. We have something similar and I went to my sibling retreat and it was a good feeling being around others who completely understood our specific situation. I hope you find the same.

  29. As always I’m so amazed by how much you have done. In the end of Jennifer’s life(Fairy ‘s wedding, glitter shoot, Disney, etc) and in your grief (counseling,art therapy, now camp). You are doing it all right. When I lost my baby, I did nothing for a full year. I was absent everyday. I lost a year with my surviving child. Finally I sought help and clawed my way out of the hole. I know you don’t feel like it, but you are doing every single thing right for you and your family in your grieving. You are doing everything right. I hope camp is a great experience for you all. Much love.

  30. I wanted to add that the last picture of Jennifer at the beach is incredible. Magical the way her dress and hair are blowing in the wind. I think its my favorite one of her. Breathtaking.

  31. I don’t think you should have to apologize to anyone for anything you say. This is your blog and its for you and others that you might be able to help. Everyone deals with things different. What works for them might not work for you. I am here and I will be here as long as you keep writing. I love to read about your angel along with her siblings. You took so many beautiful pictures of her and your family and its great you have all those beautiful memories. I admire your honesty and being so raw about your feelings and sharing them. I can see how you miss that sweet Jennifer because you can tell in each picture that she loved life, her siblings and her parents. She has touched my life and so many others and you have touched my life too. You and your family are always in my prayers. Praying for Tony as he returns to work and praying you have a good outcome at camp. I think when you talk to someone that is going through what you are they will be so much more understanding. Only those that have had a horrific loss like you can explain their feelings and how it makes them feel. Continue to share what’s in your heart there are a lot of us that are here listening!!!

  32. God, Libby, you are so incredibly brave. I read your words every day and I ache for you and then I think about how brave you are. It blows me away. When I read yesterday’s post I was blown away all over again with the strength and bravery in your honesty. It is unreal. Just like all of this must be. Honestly for me there are days, 10 years later, that I still can’t believe I am a person who’s mom died. And to lose a child?? I can’t even begin to imagine how that would feel, how surreal that would be. I try not to, I try to feel for your loss without thinking too much about what it would be like to lose my daughter. Because I have that loss of security a person suffers from when you lose someone you love- that fear that you will lose someone else. And that can take over sometimes. That fear that you know all too well. You articulate your fears with such clarity. And then I am blown away all over again. You say that you write to help yourself and you hope that you help others. You more than help me. You change me. Because you are brave enough to.

  33. Astonishing that your mind could protect you, and trick you, to the degree that you read that other mom’s note for a moment thinking you couldn’t imagine that fate. I wish I could understand that. Camp sounds like an amazing place to come together as a family and grieve with other families. I wish this wasn’t your camp….but I thank God it exists as a support system. Love to you and family.

  34. Never apologize for your feeings. Its ok to feel what you feel. We love you all. I think about Jennifer every single day. ♡

  35. Here are a few blogs that I read. They are written by two Mommies whose children died. One from the Sandy Hook elementary shooting and one from a rare genetic disease. These moms may be a point of encouragement for you. May God give you strength through this time.

    Melissa

  36. Don’t apologize Libby! If people can’t deal with what you write or find it “offensive” then they shouldn’t read it, no one is making them.
    I think anyone that writes that ir tells you what they think you should be doing with your family is totally missing the point to your writing anyway.
    You’ve been very honest and raw – yet it was another person’s “beliefs” that were offended….
    God doesn’t answer every prayer – clearly.
    You should be able to pray, grieve, believe, cry, scream or laugh however you damn well please.
    Keep going. You’re doing an amazing job.

  37. Thanks for allowing me to read this blog. I was raised Catholic but still agree with what you said. IDK, if people get rubbed then they should pray for more understanding. Sending good vibrations and hope the camp is a good experience.

  38. Libby, your words cut me to my heart tonight. I pray for you. I wish I could come through this comment and hug you. I pray now for so many people…so many…suffering. I appreciate the no to a yes so much. I’ve said it before but it’s made a difference in my life. I’ve shared it with other moms too when I share about your blog. I just wish so much…that…you didn’t have this pain…

  39. Survivors guilt! I’m sure you’ve heard that term already. Its just one more step In The healing process. This journey ain’t easy sista! But it’s YOUR journey! And all we can do is support and pray and send words of encouragement, and in some way give you a glimps of hope.
    Hope you get all you stand in need of at camp. Sending love!

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