rattling reminders

We went to do lab tours at Stanford yesterday. I wasn’t feeling so great last night so I went to bed right after the kids. I thought I would have plenty of time to write all about it tonight.. But life and memories stepped in the way. .. So tonight I write for me.

I’ve never been that mom that freaks out over things with my kids. I have a dr thats over 30 mins away because he is awesome and my plan was always to switch over to him after Charlotte was 1, done with the constant well baby check ups,  since I knew we would have so few visits. But there are things. Moments really that simply knock me over.

I’ve had two this week.

Jonathan’s newest food avoidance strategy has been to say the food makes his head hurt. And he holds the same spot at the back of his head. But it was always happening when he was eating a food he didn’t really want to eat.. so I thought nothing of it. Until Tuesday night. We sat outside our support group.. About 5 mins away from our destination he started to cry. I talked to him.. tried to soothe him from the front seat. But then realized he was sleeping.

I hurt for him. Wondered how often did he cry in the middle of the night.. just like his Daddy. When we parked he woke up and immediately said his head hurt.

A frightening chill runs through me.

I had him come to me at since I knew I couldn’t get to him calmly. I asked him where. He pointed to that same spot.

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Her last MRI.. it was supposed to be a new baseline.

freezing from the inside out. memories flashing back.

I wanted to turn the car on and drive to Stanford ER right then. I just gripped the steering wheel as he got his jacket on.. Perhaps my cold had penetrated throughout the whole car. But I knew that didn’t make sense. He wouldn’t get a MRI for a few headaches at the ER because I wanted it.

The other kids only came to the her radiation treatment with us once. She proudly showed them the magic trick to open the door.
The other kids only came to the her radiation treatment with us once. She proudly showed them the magic trick to open the door.

We each had our group session.. and then our dinner out together. And he seemed totally normal. I called my sister to see if she could talk me down from the ledge. She always has.. except once. A week before Jennifer would turn 6, when the eye doctor said we would need a MRI.. Then she said this is scary and I can’t say for sure it will be ok.

Final radiation day with Auntie.
Final radiation day with Auntie.

This time she wanted to say it. But she is also ruined by the cancer that stole away Jennifer. So she suggested I call the kids pediatrician and have him looked at tomorrow. Then I realized I would be at Stanford for a lab tour the next day, I would be with Dr.Monje. I did pull her aside and through chocked back tears talked with her about Jonathan. She took time and spoke with me.. as a physician and as a mom who also knows too much.

She alleviated most of my fears in part by reminding me of things I already now know. She also had some other suggestions that helped. Turns out my first thought was right. Jonathan said his head hurt because he didn’t want to eat the food.. and the other time. Well I am not sure what caused it, but I am also not so concerned about it.

These are the changes that have happened for me.. I doubt myself .. in so many ways.. And us.. my sister is scared … she knows bad things really do happen to good people.. to innocent children.

And then last night. Last night Jonathan woke me up crying in the middle of the night. He was convinced his nightmare was true. I couldn’t calm him down.. and he was coughing. That deep barking croupy cough. I carried him outside .. he was still scared though.. but now because he was struggling to get his breath. That feeling.. his weight in my arms clawing at me.. wanting me to fix it. Eventually the cool air did its job and he was able to breathe a little easier. I carried him to my bed and he fell right to sleep.

I did not.

He had a fever. I held him in my arms. I remembered her heat. How hot she got. Hotter until I thought she couldn’t possibly get any hotter.. but she did. As long as I live I will never forget that feeling.. one that I should have been able to do something about.. medicine the hospital .. something .. anything. Instead of just feeling it.. burning itself into my skin. Into my memory and my dreams..

rattle6

I felt his heat but also his heath. I rubbed his back and felt the fullness and was so grateful for it. He is the same height she was. He is naturally thin like she was. But he is so much fuller than she was. No bones sticking out to stop my fingers path. In that moment I yearned for her so deeply, while also having such gratitude for my son.. my sons and my living daughter. So grateful I still get to hold them.. and that I can help heal them.

Then the noise.

The rattle .. that noise.

So much like her. I felt like I was going to pass out. Like I might hold him so tightly then against me that I would wake him up. I was about to tell Tony I couldn’t do it .. I needed a moment to fall apart when I heard him choking on his pain. The shuddering escape of quiet sobs of the strongest man I know. So I let myself succumb ..

..to a chorus of noises that took me right back.

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3 days before she died.

To the time 9 months ago I held my daughter.. my barely 6 yr old.. for 1 and a half days.

It was often just her and I together most those 36 hours. I worried for a long time that Tony was resentful of me for that.. That he felt I shut him out. Turns out he always worried that I had felt abandoned. Truth is this that we gave each other another gift, a gift  in the worst of times that we have had to face thus far.

The rattle she made.. That haunting choking sound …  also so beautiful somehow to me because its the last noises I heard from her. It wasn’t I love you.. or mommy. It was that rattle. Her rattle. So similar to what I heard from my son last night, but different too hers still had a twinge of femininity to it.. a girlish quality somehow. .. And underneath it such strength and promise for that moment. . .

The way her body struggled and fought for every single breath .. until her last.

Her last. I was there for my child’s final breath.

oh jennifer

you will be the first one i see

i can’t wait for you to show me around

thank you buggers..

for gifting me all of your firsts..

and the most precious of lasts.

rattle9

…until there is a cure..

 

27 Responses to “rattling reminders”

  1. Your words are so powerful. I am left nearly speechless after reading this blog. Thank you for sharing memories of the precious time you spent with Jennifer in her final days. I hope a wave of peace comes over your household and brings you warmth and strength until you can be with your beloved JLK again.

  2. I could not help but think of a quote I encountered a few years ago that rang so true to me then, and rings true to this now: “I’m lucky to be under this same sky that held the exhale from your first breath. I’m lucky to be under this same sky that held the exhale from your last breath.”

    I’ve never met you, but thinking of you always.

  3. Oh Dear Libby. So so so much love and tears. I miss Jennifer. We all do. We love her we love you all. Until there is a cure. LOVE4JLK♡

  4. Oh Libby! When the time coms for you to see sweet Jennifer fireworks and bursting hearts will be all around! Thank you for sharing, for making me a better mama and person. Until there is a cure!!!! Love4JLK always

  5. ….thinking, praying, hoping , wanting only good thoughts , good health, good feelings for the Forever6 family. Always in my heart sweet JLK.

  6. All your posts touch me but this one was especially honest and brutal…there are no words to help you feel better, but I am still thinking of you all and praying for you and Jennifer every day. I am so so sorry.

  7. Oh, Libby. You’re words soak into my soul and touch my heart. Your Jennifer continues to touch so many people. Your shared memories of her make me feel as if I knew her, as if I know you. Thank you for sharing from your heart.

  8. Libby, I am forever changed because of your family and Jennifer’s story. I too never know what to say after reading your posts but I want you to know your words are making a difference…

  9. I sit and read… choking on your words that make me ache… I run my fingers on her pictures… your pictures…. I wish I could take away your pain.. I wish.

  10. I have to remember to breathe after your posts sometimes. So much pain- cancer is absolutely devastating. Sending prayers your way always.

  11. Libby, I just want you to know you are not alone. We lost our beautiful 5 yr old grand daughter 4 yrs ago Nov. 26 to dipg. Reading your blog today took me right back to where you are now. All your thoughts and reactions are normal and our family has experienced them too. I know we can not remove your pain but I hope we can at least lighten the feeling of loneliness. We felt it. We each built walls to protect ourselves and to keep from adding our own pain to what we knew others were also feeling. It took some time and talking to break down the walls and be able to offer some comfort to each other. It is still in process. If you want to you can join our group- Juliette2010. We also donated Juliette’s tissue and you can read there that progress is being made. Hopefully we can help stop this tragedy from happening in the near future. Your family is in our heats and prayers.

  12. Oh Libby. Your pain here is palpable. It absolutely breaks my heart. I wish I could make it better

    Praying for you every day with love xx

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