i love you

The only time I am not crying is when I am with other people. .. With Tony and the kids though I cannot seem to stop the tears.

Everything is reminding me of her.. everything is ripping into the wound I keep waiting to start healing.

right now I don’t think it ever will. right now I feel like my sorrow is so much bigger than I am .

We went to the Chargers/49ers game this weekend with some friends. Tony is a Chargers fan so they thought we would like it. We were very excited. Charlotte stayed with my parents and the boys with one of my brothers families. I had forgotten until I started getting dressed in my jersey.. forgotten we had taken her to a game once. A pre-season game just like this one and a neighbor gifted us her tickets. That time Tony held her.. this time he wore her name on the back of the jersey.

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We had a great time. Talked about all sorts of things.. and talked about her. About the time I took her to a port-a-potty and she was so freaked out and peed all over us both. Its little memories like that I so enjoy coming back to me unexpectedly.. and having somebody that is open to hear the memory shared aloud.

game
6 years and 3 more kids later

A dragonfly followed us through the parking lot and a butterfly nearly landed on us in the stadium. .. I hope so big.. I hope so much.. much more than I want to want it.. I wished for it to really be her trying to connect.

We went to get our boys afterwards and were invited to stay for dinner. In the middle of the meal it hit me how we shouldn’t have been there. How not so long ago we could never randomly stay somewhere for a meal because we would have had to prepared for her food.

We did a lot of picnics to keep eating at home fun.
We did a lot of picnics to keep eating at home fun.

I used to feel like it was so hard to have a celiac kid. To not be able to just change plans suddenly. It was a hardship in my life that I had no idea was actually a privilege until it was too late.

Being her mom was a gift..

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What I wouldn’t give to have to turn down meal invitations again.. Because it would simply mean I got to take care of her again.

This morning in Charlottes room I went through the hair stuff bag I had stuffed full of all of their things from our time at Stanford. She died so shortly after treatment we never unpacked it .. and now I keep it in baby Charlottes room with both of my girls hair ties and clips and headbands.

Today it hit me feeling them in my hands. The matching ones we got for them to wear at the same time that they never got to. ..the ones that Jennifer wore for school so often for those few weeks I got to be mom to a kindergartner. I cried.. I bite down on knuckles with one hand and clutched her headband with the other.

 I looked up as tears fell and wailed as silently as I could.

I heard my 3 other blessings running up and down the hallway together laughing .. filling these walls with a joy I longed to feel. I am so grateful to have them.. each so unique and so perfect. They are my reason for getting up each morning and Tony is my strength to actually be able to do it.

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shirt

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I am thankful for them.. beyond words for these lives I am lucky enough to touch. Still I yearn for the one my arms ache for.. Right now the empty is louder than the full in my ears.

I am ashamed…because I know better.. but I can’t seem to change the station right now.

Then we went shopping for Tony’s birthday. I am not crafty or even very creative but I try. I try to have the kids do something fun for him each year. .. I walked into the craft store hoping something would come to me.. and what did was the hot strike of her absence. .I felt like I was burning. I called my bereaved mom friend.. should I also call her the most unwanted mentor of all times? To ask how she did stuff for her husband.

I don’t want to get so stuck on the loss of one .. our very first.. that I don’t do things with the remaining. In many ways I am a better mom now than I was before. I know it.. I hate it.. but I own it.. Not this way though. The fear of her not being included makes me freeze up. I have to take a non-creative mind and be extra creative to include her.

My friend gave me advice and understanding. .. we shared pain and struggle.. Then talked about houses. . because thats what this life is.

It is normalcy in the midst of desperate sorrow.

It is tears over the handprints I can never make again interspersed with what kind of flooring to choose.

I am thankful -so damn thankful- to have somebody who truly gets that. .. while simultaneously so resentful that I do too.

I love you Jennifer. If I could be with you again.. just for a moment .. that’s what I would say.

i

love

you.

love

…until there is a cure…

17 Responses to “i love you”

  1. just constantly thinking about you…i do believe jennifer’s with you all the time, and seeing the dragonfly is maybe her way of reminding you of that. this is all far from bearable, but you are truly an inspiration, and all 4 of your babies are fortunate to have such an amazing mom in you, just as you are to have them…warmest hugs xoxo

  2. Libby, I think that is why your Glitter Squad feels the need to spread the glitter, to flutter all that we can, to almost beg to do More for MNO…..because honestly, we (I ) am so fearful to one day, someday, truly get it…the way you do. ….hope that makes sense.

  3. My heart aches for you. I so wish there wasn’t a reason for this blog. I will continue reading and saying her name and spreading the glitter. <3 Jennifer <3

  4. “because I know better.. but I can’t seem to change the station right now.” I love that you wrote that and hate that it is your truth. I feel like this all the time, frankly because I think of JLK and you often as I parent. I know you would give anything to have JLK around to do any of the number of things my kids do that I yell at them about, I know I should be happy and not yelling & angry. I know it, I know better from what happened to JLK, but in the moment I don’t change the station. Praying for your family, praying we both can change our stations in time and thankful your words touch that touch many moms in a positive way, including myself.

  5. A few thoughts on today’s post:

    1. I think the dragonfly was her connecting, and I am glad you noticed. I also like that Tony’s jersey number is 28. What a great, personalized way to honor her.

    2. I hate that you have a reason to blog, but I am glad you still do it. I think so many of us not living this hell need a reminder of what could be, and why we need to stay in this fight.

    3. As a mom, I know part of our job description is to fix things. Boo-boos, hurt feelings, holes in clothing, and even stuff around the house. But this can’t be “fixed,” and that is what is so frustrating and heart-breaking. I know all of us doing things in her name, spreading Jennifer’s glitter, and raising money helps, but it will never fix it. I wish with all my mother’s heart that I could fix this for you, for your family. I am sorry that I can’t. I know even when there is a cure, or at least the chance of life beyond a few months for DIPG patients, it still won’t fix it. It will mean something, but it still won’t be worth it. But I will continue to be here, reading, praying, and spreading glitter. Because of her. Jennifer.

  6. I believe Jennifer was there with you that day. I believe she is always with you. Im so sorry Libby. I think about you all every single day. Especially Jennifer. You are truly an amazing mother. We love you ♡♡♡♡♡♡

  7. Libby, wow… I continue to not be able to. Fully imagine your loss….but know from my standpoint you are very much a mother of 4. Everyday you continue todo so very much for Jennifer (and your living 3) She would continue the bright cheeky smile knowing she had one awesome mom. Her dragonfly and butterfly visits are her sign. Believe it, trust it. I know that you know those are her signs…trust your gutt.

  8. I love that she is sending signs to you. As a RN, I have had many patients tell me all about the presence of their lost love ones. Continued prayers for angel visits. LOVE4JLK forever

  9. Every day brings new sadnesses, new landmarks, new thoughts and memories. Thank you for sharing them with us readers, and we will forever be the e-hugs on the other end of the worldwide web. We are with you.

  10. Jennifer,
    I think of your name often and sometimes say it out loud just hoping your Mama knows she is thought about. Spreading the glitter. Keep on keeping on, Libby. Love & Light

  11. Lots of Love to you, Libby. I’m so glad that you have a wonderful mentor to help you on this journey. I’m also so sorry that Jennifer had to leave this world way too early. Breaks my heart. Sending hugs…

    XO

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