clap

Music moves me…music permeated today… this song is the theme song for the first half of today…

2 months come… and gone..

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This morning was really hard for me. We drove to Monterey… to be near the ocean and eat breakfast at a little place we really enjoy. Last time we were there was about a year ago on our “baby moon” right before baby Charlotte was born.

…she turned 11 months today. Next month she turns 1…

I really thought Jennifer would be here for that. I honestly never expected her to not make it to May.

At our breakfast spot they have live music. The guy today was amazing…I got his card..  The song choices blew my mind, I cried at the table.. a lot. The hardest I have ever cried in public. I think its hard for Tony to see me like that…

openly vulnerable.. to know how deep this destroys me..

..of course he knows..of course he understands…but seeing it is something different.

When we first sat down he started playing “Aint no sunshine when she’s gone” .. a little later “knocking on heavens door”

**had no idea how rough I was looking...but its a good reminder***
**had no idea how rough I was looking…but its a good reminder***

hit me pretty hard…and after we paid while Charlotte and I were standing on the sidewalk (he plays on the patio) waiting for Tony to move the car he started” fire and rain.”

—won’t you look down upon me Jesus—just gotta see me through another day—

I lost it. Right there leaning onto baby Charlottes stroller. When Tony came to me I just held onto him… and sobbed. A real and genuine release..

As always sporting my love4jlk shirt with our unravel ribbon on it.. hoping people make the connection that some sort of cancer has rocked my world… dissolving me…slowly.

We talked over our meal. About the last time we were there. We got some bad news… I was pretty upset…in typical Libby fashion I couldn’t let it go and obsessed over it. The lottery for the charter school we wanted to get her into was that weekend..

..she didn’t get in. We wanted her to go there so badly.. I just knew it would have been the right fit for her. So the end of our lovely “baby moon” I kept circling back to her not getting in… and what were we going to do.

It was important in that moment. I was worried about her education…homeschool was a very viable option at that point.. so that was weighing on me too.

..today we talked about it again. How even something seemingly so important really didn’t matter…not enough to take all my energy anyways .. . For 2 major reason.

1. The day before she was supposed to start kinder the charter called…a spot opened up…she was in..                                                 2.  She is dead. Only there for 8ish weeks.

What a realization for me.. roll with what life offers…even things that are truly important right now may turn out to be completely unimportant…

.. . alone here now.. me and my computer screen.. . I realize I am doing that now. With my “after” plans…how to best be of RIBBONservice to the pediatric cancer community. I just need to do it. Walk forward. See where my feet take me.  I spend so much energy in my head…

trying to figure it out… control my destiny. ..

see ahead. . .avoid mistakes…

guilt.

Such a horrible word guilt… such an incapacitating feeling. Its the thing that makes me freeze up.

guilt.

Could we have seen something earlier? Did she see double and I pushed her to learn to read?

Did she know she wasn’t getting better? Did she blame me?

Was she scared? Did we give her enough medication?

Did she blame me?

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… will they?

 

I am frozen now…those few lines flew out of me.. then froze me.. my fingers stopped typing..

At breakfast I said we should bring the boys here .. and then immediately wanted to pull those words back. I feel like I shouldn’t be thinking of enjoying things that she couldn’t do… .

Its so hard to visit places we went to with her… but on the other hand I really hate thinking about doing something with the boys that we didn’t do with her…. damned if I do.. damned if I don’t. But how stupid of me… I am doing the damning..

to be paralyzed like that is not fair to them.. so I feel…

drumroll please…

guilty.

Tony had a great perspective on it.. he says we do it because of her..

It’s true. We are both better parents in a lot of ways now…

I think so at least..

But I worry its only outwardly. . .I hope that’s enough for now.  I hope it changes.

…that’s a lie. To change it would mean I am starting to “move on” and that sounds pretty bad. This pain is crippling at times…but it also means I am connected to her.. That sounds so twisted… to not want to heal…to not want time to keep marching on.

Its a part of what makes these monthly anniversaries so hard for me .. to have the distance between us growing.. 6 yrs 4 months.. that will be horrific.. when she will be gone longer than I had her. ..

See what I am doing?.. that thinking ahead…obsessing…worrying.. I guess its good I realize it. But it’s pretty annoying too..  Wasted energy.

After our tear filled breakfast we walked along the ocean. Tony noticed some scantily clad young girls and said our IMG_1831daughters will never dress that way.. I didn’t react..but wonder if he realizes he used the plural… If he did he was able to let it pass.. although I hated seeing him in depths of suffering last night.. it certainly gave him space for me today.. .

We even each other out pretty well thankfully. Wednesdays are hard for me.. and the 11th and 12th of the month. But not for him.. for him its another day. ..she was gone yesterday and will be gone tomorrow..

 

As we were about to get to the car we walked past a tattoo parlor. The pictures in the front window drew our attention. We had been talking on our walk about what Tony wants to get done.. We met the artists and felt drawn to one guys work.. Tony made an appointment for the end of the month.

I think it will be good for him.

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We got in the car and I said lets go to Los Gatos…where Fairy’s original wedding was. For those that don’t know they had a wedding in January so Jennifer could fully enjoy it… we had no idea she would be gone by this time… We surprised her. Perfect timing.. a break during photos. The crying I did over the past 2 days cleared me out enough to be able to go. We took some pics… shared some laughs. Jumped on the bed…again.. It was good and right. For all of us.  A necklace with Jennifer’s picture broke off when we were together… fell right in the middle of us…We said goodbye and then we headed home to get our boys.

We got the kids something to eat and went to get “cold yogurt” we let them get 2 toppings a piece. At one point before dessert I took Nicholas to the car with me to change Charlotte. I asked him how it was at Coco and Papas (my parents).

“well I miss Sissy.”

I try to not stifle the boys need to talk about her… but I don’t want to force it either.. . I don’t want them to feel like that’s what I want them to say… so I tried to move on from that and get him to talk about the fun and happy.

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“I miss Sissy mommy”

Ok.. me too Bubbas.. me too.

That was enough. Then he went on to to tell me a happy story … Jonathan wasn’t out there to translate for me so I only understood pieces.. but the message was clear. He just needed his missing her to be acknowledged ..

 

We got home for bath and bed.. Jonathan wanted to ride his skateboard.. no into yes... meant we went for a family walk/ride. This is how they are getting the best of us like I said… empty as it may feel doing it.. I think

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.. .i hope..

it fills them up.

But like Tony said… it’s also because of her.

Oh and for the songs for the latter half of the day.. driving home from cold yogurt this song came on..again. I looked at Tony and said “This is like the 5th or 6th time we have heard this song today.”  He smiled at me and said “I know”.

…and I listened…

a sigh escaped. I took a deep breath.

oh.

..

clap away girlfriend. ..

..

I love you.

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39 Responses to “clap”

  1. I love to hear about your outings with Tony, it’s good for you both to get out. I look forward to reading your daily blogs, Thank you so much sharing Jennifer and you family we all miss her deeply. For the love of Jennifer her memories will live on forever. Big hugs and Angel kisses

  2. I know Jennifer is up there, clapping away. Happiness, to her, Is being free. As for the song- i think the message of the song was either her trying to tell you its ok to be happy- she wants you to be- or that SHE is happy and free. She knows you did all you could and the boys and Charlotte will understand that one day too.

  3. She is so happy in Heaven, with Jesus, mothering all of the other children and babies there. It is hard for you as each month passes, but she will hardly notice. I pray that you keep the faith so you can be reunited with her someday. Let her speak to you through music. I am glad you heard her today.

  4. I love that Jennifer is with you always. I love how this blog is helping you to sort things out. You are enough, Libby. You are mothering all your babies with all your heart. They feel it. I hope the guilt eases up. As always sending prayers and hugs.

  5. oh libby….tears. she IS happy. music can truly touch our souls. she is sending you messages of love.
    you are doing an amazing job. you let those kiddos express themselves, you DO things with them, day by day you pick yourself up & show them true strength & courage. the guilt is not from God. you are making a difference to your family & us out here in the net land

  6. You made me smile and I don’t feel guilty. Beautiful stories and beautiful memories. May today bring happiness and joy on this Sabbath day. You will all be in my prayers. Thank you!

  7. Few of us understand the level of grief and guilt that you are experiencing, but I think putting one foot in front of each other, and doing your best to smile once and a while, is tremendous. I hope you can slowly release the guilt, and learn to survive the grief.
    I have an analogy that has helped me survive a terrible loss…. when you lose someone so close to you, a child, it’s like a permanent knapsack gets attached to your back…. and some days that knapsack is so heavy you can’t move. Other days it is lighter and you can get up and move around…. But it is there, and you feel it’s presence …. All the time. But in that knapsack is the spirit of your Jennifer, and so she comes with you wherever you go. If you go to the park, she is right there….You can talk to her, show her things, and have her experience new things with you…. Almost like a bird perched on your shoulder.
    It helped me, this analogy, a lot. But we are all unique, and so I hope it helps you and doesn’t hurt you further. It is offered in love and support.
    ** I just reread this and want to assure people that I’m not some crazy lady talking to an imaginary bird… It helped me, but I realize it may seem kooky to others ***

    1. Katherine, you’re not a “crazy” lady! I love your analogy. It’s very symbolic of the grief journey.

  8. Libby, keep clapping. She’s clapping, too. You never fail to touch me, teach me. I love every word. Keep breathing. Love, a faraway friend

  9. Music. As I am sitting reading this Joe, who has no idea that I am reading this on my phone, is on his phone and starts playing Leonard Cohen’s ‘Hallelujah’.
    I known that feeling (in my own way of course, different but relatable) of not wanting to move on from the sadness and greif because it was moving on from her. Like the greif was our relationship now. Eventually I was able to separate the greif from the darkness and move on from that. I wasn’t moving on from her but instead I began to move on from losing her. It is a work in progress. This is just my experience of course. Sometimes you express things that resonate with me so much. Things that you have self awareness of and it took years for me to realize that is where I was. I am so blown away by the honesty you have with yourself. Sending you hugs.

  10. My love to you. Thank you for being so open with us. Wish I could ease your pain. God be with you and your beautiful family.

  11. ‘Fire and Rain’, that song came on the radio shortly after I learned my brother had been killed. It was so long ago, a lifetime ago, and for a very long time I associated that song with that time and it was so hard for me to hear that song. I don’t know when the shift occurred, but at some point the song became a comfort to me. I hardly ever hear it now, and when I do, it is like a gift for some reason. I pray that the music that triggers you now, will ultimately comfort and keep you. <3

  12. Continue to look for the signs Libby – they will be everywhere. It’s her reminding you she is always there, everywhere. Especially with music. I don’t know why, maybe because of the magical quality of the medium, but I have found that it is the way those we have lost are able best to communicate their presence.

    Every time I hear the song ‘Little Wonders’ (from the Disney Meet the Robinsons movie) I think of Jennifer and you and your family. Something about the lyrics reminds me of your story and journey to a point it brings me to tears.

    You have said before you hope people won’t forget and I want you to know that because of your writings JLK has become a part of my daily life. I look forward to your blogs every day even though most times I wind up in tears. I will be here as long as you are.

    Love and prayers always!

    1. Music is so very powerful. I had an extremely hard time dealing with my mom passing away. One night as I was leaving a counseling session, I sat in my car crying, as I often did. This particular instance, as soon as I turned the car on the song “Everything” by Bread came on. It was exactly what I wanted to say. Exactly what I needed to hear at exactly that moment. It’s taken me a very long time to get thru my grieving process, but I can honestly say that when I hear that song I sing it loud right to my mom, and it helps my heart heal. Sorry. Didn’t mean to rsmble. I just have very strong feelings about the meaning of music.

      With much love,
      Diana

  13. That’s right – you are enough! Every moment, right where you are is enough. Yes, smile and know that smiling is ok. Blessings and peace and joy and happiness be yours today and always.
    Different song – each time I’ve heard this song in the past month, I immediately think of you: https://www.youtube.com/watch?v=b_RjndG0IX8

  14. Hi Libby,
    Everyday I read your blog, at least everytime you post. Jennifer has made me want to help children. She is so beautiful. Today I come to you with a favor to ask. I know your grief is deep and dark, but there is a little girl. She has a syndrome that THERE IS A CURE FOR. But she won’t get it in time if funds are not raised. You have a platform, you could be the person to help her the most. She is four her name is Eliza she has Sanfilippo syndrome. Here is the link Libby http://www.gofundme.com/ElizaONeill I am constantly thinking about you and your family. I pray without cease for you!
    Crystal

    1. Thanks for posting this, Crystal. Donated and shared. We must reach out to help every child we can. Jennifer wants us to do it for her.

  15. This is the first time that Iam leaving a comment. I just haven’t known what to say. I have been following your blog for a little over a month only so it was after JLK passed. This blog today for some reason stuck out to me and called out to leave a comment. The song that you heard 5 times is a wonderful song and when I heard it I saw JLK during her glitter photo shoot and I think now everything I hear that song I will she her throwing glitter and laughing and even her brothers along side of her and her having the huge smile upon herupon face. I don’t want to change that because hearing that song and seeing JLK puts a huge smile upon my face and my heart pours out love to all of you….Nicholas, Jonathan, Charlotte, Tony, and you! Huge gentle hugs to you and even though I don’t know you or have ever met you I have come to love you. So much love I send to all of you!

  16. It was so nice seeing u, Tony & Charlotte yesterday prior to Stefs wedding. The song we walked out on was “happy”. You are a wonderful and caring mother and you don’t have anything to feel guilty over. You continue to do the best you can. No doubt in my mind Jennifer’s spirit touched us all yesterday. Hugs and prayers Libby.

  17. If this is a repeated message I apologize. It was great to see u, Tony and Charlotte yesterday prior to Stefs wedding. The song right after the wedding was “Happy” and I wanted to cut loose and dance. You’re doing the best u can Libby and that’s all u can do. No doubt Jennifer’s spirit was all around yesterday. Hugs to u and your family.

  18. How many more signs do you need? She’s trying to tell you, she’s happy. And she gets it, too. She knows we have absolutely no idea the real happiness she is experiencing right now. But she is praying for you, I know it.

  19. Having a hard time reading through my tears tonight. So intense, so raw. Your love for Jennifer is incredible. The words you are able to use to describe the love is just simply beautiful.

    She does not blame you, nor will your other children ever blame you for anything. You would have given anything to keep her alive.

    Your words are so powerful that my heart aches so much for you.

    Sending love from miles away, and thanks for continuing to keep sharing this journey with you.

  20. I love to hear about jennifers life she was filled with so much love u gave to her. Live on for her and ur precious children. Its OK to be sad and grieve and be happy to. U are an amazing mother so loving so true. I am reading ur words and feeling ur love for ur whole family. Jennifer lives on in all u do. She wants u to enjoy this life.

  21. Still here. Still listening. Still praying. Yesterday I had to buy something at the grocery store and as I was going down the aisle out the corner of my eye all these gluten free signs caught my eye. So I right then and there said a prayer for you. It was about 1pm. In my heart and mind always.

  22. I think hearing ‘Happy’ so many times might have been a sign to let you know that your girl is indeed ok and clapping along with all her might. Libby I know you don’t feel it but you are freaking amazing. The way you are getting though each day with such grace and truth is awe inspiring.

  23. And no she does not blame you. I commented to this effect on your previous post but I know with all in me that she thinks of you only with love and pride

  24. It does seem like songs are sent to us when we need them…I think you are hearing from your sweetie. Be happy Libby when you can. That’s all you can do. even if it’s a minute here, two minutes there. Joy in a giggle from a little one year old. Watching empathy grow in a four year old. Seeing a two year old show his sister how to switch on a light. These minutes will string together for a few minutes here and there. Hopefully it’ll add up to a day sometime…and it doesn’t mean you don’t remember her if you are happy… It is not a bad thing for you to be happy, Lib. It isn’t forgetting sweet Jennifer. It is not your fault she died. You are not to blame for this crappy cancer. You acted as soon as you could. You made the best decisions with the best information you had at the time. You gave your darling girl the best experiences and most wonderful life and amazing family! then, when the inexplicable and unimaginable horribleness happened, you let everyone in to journey with you and honestly most of us have never experienced the raw emotion and wrenching pain of losing a child as you have.

    There is so much going on right now, it is hard to see thru the fog sometimes. Hang on to Tony and your little ones. they will see you through this. and sing when you can ! love and hugs to you.

  25. I think about Jennifer everyday…alot. I thought about her tremendously onthe 12th. My daughter and I bought some pink balloons and wrote Jennifer’s name on them. We wrote a few messages for her. And we let them go all the way up to her. I will never forget her. She was, is and always will be an amazing very special little girl. Forever 6. She is at peace.She is pain free and happy. We all love you, Jennifer, Tony and the Kids. We will always be here for you all. All 6 of you. ♡

  26. I had to re-read the first half of your blog again! I couldn’t believe what I was reading! Back in August 2012 just a month after my brother Johnnie had passed, we were in Monterey on the warf at night. I saw a guy playing a guitar. He appeared to be homeless, but who really knows. He was playing for money and so I listened. I wrote on a $10 dollar bill and put it in his jar. He asked if I had any requests and I asked him to play green day “time of your life” because that’s the song we adopted as “Johnnie’s” song. He said he didn’t know any green day but he had a song for me…. He started to play. “I’ve seen fire and I’ve seen rain”
    Never has that song rung through me like it did that night! I started to sob and I had to lean on a light pole just to keep me on my feet.
    Wait! It gets better…. As we were leaving later that night, he wasn’t there anymore…. I started to panic because I didn’t see him. All of a sudden I hear a waiter say “you playing again tonight Johnny?” I turned around and it was him! His name was Johnny too!. I couldn’t even believe my ears!
    There is something special about music, and the ocean and the combination of the two.
    She can speak to you through music. Listen. Listen to every word. There are messages and comforting words hidden in there!
    Love you, Sarah

  27. It honestly seems like every song on the radio is in some way about Jennifer. Every lyric seems to hold some power. I think of her and think of you as I drive.

  28. Music can do that make us happy or make us fall apart.I remember many a time driving home from an appointment at UCSF when we wouldn’t get such great news and a song would come on and the tears would just flow, turning the rear view mirror in the hopes the kids wouldn’t see. As for the guilt I guess it just goes along with this stupid road, because it eats at me all the time.How did I not know that when my 6 year old said her head would wiggle that it wasn’t normal? I didn’t know.When her twin sister didn’t pass her eye test at school why didn’t I take both of them to the eye Dr.When her smile was off after losing her front teeth why did I think it was normal? When she fell from the swing why didn’t I go get her checked out? Is she mad cause I didn’t tell her there was a possibility she wouldn’t get better. Is she mad that I put her through so much treatment and she went to heaven anyway?I had her and myself convinced that she was going to be ok. You are not the only one with these feelings. The what ifs and howcomes can become quite overwhelming at times.We just want to protect our kids and it sucks that there is this monster that I didn’t even know existed that we can’t protect them from.
    Continued prayers.

  29. LOVE! One day, one minute at a time. You are doing it girl! Keep on fighting and loving. She is loving you from above! Sending prayer of strength and courage!
    xoxooxoxooxoxooxoxoox

  30. I have my “Run for Pediatric Cancer” playlist. It starts with “Do Something” by Matthew West, includes “Brave” and “Roar” for JLK, “Overcomer” and “Broken Hallelujah” for those who are fighting, and now “Happy” for them all, fighting or already earned their wings. Looking forward to running clumsily with you.

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