the power of a memory

My mind often struggles to catch up with my reality. Most of the time Im not even aware of it.

My daughter was here. Jennifer lived. And Jennifer died. Forever 6.

The other day the kids played a joke on me. They all got in the car to go somewhere like they do everyday but when I walked over to buckle Bridgette in Jonathan was in her seat … the car erupted in giggles as I jumped back in confusion and surprise.

Looking back at this picture I see so much more.. I wonder if maybe more slipped out than I had thought..

I was laughing as I started to say Jennifer did that when she was your age..

It was like somebody ran across my stomach with a blade.

The pain. Sharp. Immediate and shocking.

He is 7. She is 6. Little brother older than big sister.

Luckily I didn’t get the sentence out of my mouth and they were all too busy being proud of themselves to hear me.

I stumbled up the step out of the garage and walked into the kitchen clutching my invisible injury. Trying to stop the bleed. I grabbed the counter. I swore. A lot.  And then I rallied.

I never want to forget her. I never want her not to be part of my daily life and thoughts. She is my daughter. Parents simply aren’t made to be able to push their children aside.

but I wish I had some semblance of control over the security of my day to day. Of having any idea where the landmines are hidden. I don’t though. This simple story is just an example of a time I step confidently forward only to fall into a hole.

Luckily there wasn’t any collateral damage.

They have their own battles. Their own wars waging unseen.

I was typing up a post in a private FB group of bereaved parents. .. Feeling terribly sorry for myself. My jealousy over friends with siblings intact, seeing those relationships and longing for it back. Thinking how hard it was for me to have lost that..

I was interrupted. By Jonathan crying coming towards me. He barreled into me on the couch.. he was calling my name.

You know how you can learn a baby’s cries.. the hungry ones versus the tired cries.. I realized then that I have learned his Jennifer cry. There is a depth to it.. a echo of confused heartache.. I first heard it when I told him Sissys body stopped working. ..

So I just held him at first..

ok buddy ok .. I’m here.

He was looking at book about the movie Tangled in his room .. made him think of Ariel… and then her Ariel piggy bank. ..

It took awhile to settle him enough to get to past that chorus of words. .. To talk about why that was upsetting.

He thought we all forgot. He forgot and it scared the hell out of him. And thats a mighty scary load for a 7 year old boy to carry. We stayed up .. for quite awhile watching videos of her.

I showed him how I take notes on my phone. Of things I want to blog about later.. and now of memories I have of her when they pop up..

Because forgetting is normal. But when memories are all you have its terrifying. 

This perpetually grieving family thing is so hard to navigate. Much of my own pain I have been letting out privately. .. His interpuratuion of that is that I have forgotten his sister. He wants to talk about her more.  Watch more videos … tell stories and look at her things like we used to.

I thought I was doing it right. I told him that. Big boy talk time. How I never wanted them to see my tears for them and think it meant I loved her more. I told him that if I was given a choice between staying here with them or being with her I would choose them every single time. ..  I knew that even the moment she died..

I would choose them.

I acknowledged that I went too far in my quest to protect them and ended up doing the opposite. We talked about how to handle the kids differing needs and how he would help with that. And I made the promise to him that I would try harder to talk about her.. And he promised if I did it too much or at the wrong times he would tell me. That we would teach each other.. me about their sister .. and them about how to parent through our shared grief.

My kids lost their big sister. They lost their leader.

Losing the limited memories they have must feel like a whole new loss. A lifetime of new memories to take their place stolen..

Easter it came up again.. he didn’t want to go. He couldn’t remember any Easter stories of her.. but he just knew she was fun on Easter.. So we laid together.. And I said we could stay home.. but first I wanted to tell him stories of her.. Of course on the spot I struggled to come up with any.. But then I did..

We hosted Easter and wanted to make some gluten free treats. So we three attempted to make nests with peeps in them. I couldn’t recall the name of the cereal.. so I tried to explain what they looked like.. He had no idea. Then I remembered Fruity Pebbles! He had never had them. I sat up and shook him.. They were so good he had to try them.. Jennifer loved them. We settled back in .. talked a few minutes and he was ready to go.

I love this picture.. Her joy.. her youth and her style.. Easter in a tutu.

 

On the way to the Easter celebration we stopped at the store to grab a few things. I ran in alone.. and right in front of me .

The only thing this guy was buying.

 

message received.

oh my jennifer lynn

you will find a way won’t you..

to give us new memories

to cherish.

…until there is a cure..

8 Responses to “the power of a memory”

  1. That JLK is not so subtle is she? Guy buying fruity pebbles! 🙂

    Another confirmation for you, that your blog and notes are really important to you, your family & us (friends by reading). Much love and hugs as you navigate the way, you are doing a great job. Sorry there are no guidelines.

    Janeel

  2. That is astonishing. A way to create new memories. “That one time the guy was buying Fruity Pebbles.” I love it so much, and I love how you are working through this journey by being so candid with your son about your own mystification about what’s right.

  3. Oh, Libby! My heart hurts for you (plural) and thinks of Jennifer every day! But in the sorrow of the worst nightmare any parent could have, you not only manage to create positive memories, but build a relationship with your children than most parents won’t have. Your openness and your love for them is really impressive, and the way you let them be is amazing! You’ve always been a fierce mama, and continue to inspire me. I love you, ALL. Thank you!

  4. Hi Mom of Jenny,
    Your story is beautiful.

    I lost my 11 year old son, Hassan, to a brain tumor in 2002.
    As a tribute to his memory, my dissertation research is focused on
    improving communication between pediatric oncologists and parents of children with cancer.
    Would you consider participating in a series of surveys?
    The information below describes the process in greater detail….

    Dear Future Participant:

    You are invited to participate in a study that seeks to better understand how parents of children with cancer make treatment decisions on behalf of their child. Part of this study includes an interest in communication factors between healthcare providers and parents. An additional interest includes how parents manage the grief process after the loss of their child to cancer.

    The principal investigator in this study has invited you to participate because you have direct experience with making cancer treatment decisions and you have experienced the death of a child in relation to cancer complications or disease progression. Your participation is voluntary and you may discontinue at any time.

    The purpose of this letter is to fully explain the nature of this study, the time commitment involved in your participation, and the type of activities you will engage in. You will not receive monetary compensation for your participation. However, as a gesture of appreciation for your assistance, you will receive a $35.00 Amazon gift card, mailed directly to your email account.
    This will be sent to you upon completion of all questionnaires, described in detail below.
    If you can recommend someone for the study who is qualified and accepted, you will receive an additional $20.00 Amazon gift card, sent directly to your email account, once the referred person is deemed eligible. More information is included on the consent form for this study.

    If you agree to participate, you will receive an electronic link to a four surveys and one open ended question. You will be presented with a series of statements about your satisfaction with physician communication, and the decisions that you made on behalf of your child. There will be eight additional questions about how you experience your own life today. In each case, you will be presented with five response choices. Each survey should take approximately 5-10 minutes to complete. The final open ended question should take approximately 15-20 minutes to answer.

    There are no anticipated dangers to you for participating in this research. However, possible discomfort may include feelings of sadness or anger when recalling past events about your experiences in a health care setting. The investigator will take all precautions to make sure that you feel as comfortable as possible in all activities.

    If you should feel the need to receive individualized counseling during or after your participation in the study, you should contact your primary doctor for a list of mental health providers covered by your medical insurance company. If you would like to connect with a grief support group online, please refer to the following list of resources as listed on the American Association of Marriage and Family Therapists website: http://www.aamft.org/iMIS15/AAMFT/Content/Consumer_Updates/Grieving_the_Loss_of_A_Child.aspx

    Resources
    • Bereaved Parents of the U.S.A. A self-help group that offers support, understanding, compassion and hope to bereaved parents, grandparents and siblings.
    • Candlelighters Childhood Cancer Foundation: Founded by parents of children with cancer, this group offers support to parents who have a child diagnosed with cancer and those whose child has died of cancer.
    • Compassionate Friends: An organization for bereaved parents, assisting families following the death of a child.

    Sincerely,

    Danielle D. Sperandeo
    Principal Investigator
    909-286-0002

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