our orchestra


This presence.. this person my girls don’t really know. She is everywhere. She is nowhere.

What I wouldn't give for a picture of all my girls together..
What I wouldn’t give for a picture of all my girls together..

Driving down the road Nicholas got excited and pointed exclaiming  “look its SISSY”. with such conviction I had to turn and look. We were driving past the cemetery. I looked in the rear view mirror as Charlottes head turned back forward. She did not have the same look of disappointment I felt.. just acknowledgment.. Because that is the sissy she knows.

Its hard to balance it.

For Nicholas' birthday I took all the kids out to eat at his request. When they brought out dessert and sang to him I played Jennifer singing her happy birthday song to him. He asked to hear it again and again..
For Nicholas’ birthday I took all the kids out to eat at his request. When they brought out dessert and sang to him I played Jennifer singing her happy birthday song to him. He asked to hear it again and again..

For Charlotte she wants to know her. To have a connection to be able to share stories. .. So she reaches for them. She listens intently to her brothers when they talk about her. . She takes a lot of ownership in Unravel. When she sees a brochure floating around in the diaper bag she snags it to be able to hand out to whomever she deems fit. She will march up and proudly show the picture of her sister Jennifer.. and if she doesn’t get the reaction she is hoping for she will say she is heaven. Then smile and walk away. Proudly. As the adult looks at me in total bewilderment. ..

She visits sissy’s place and runs to the headstone and gives it a pat to greet “her” and again when we leave.


I assume she doesn’t remember.. she can’t possibly. But when she hears Jennifer’s voice .. there is something.. some deep seated recollection of the girl.. the big sister that adored her. .. that wanted her. . And in the end that needed her. We always left it up to Jennifer during her time on hospice if the other kids were home. She almost always wanted the boys gone but Charlotte to be here. .

Looking back I am so grateful she did that. It helped all of the adults to have Charlotte here..

is that why? i always thought it was for you.. but was it for me too??

i wish i had known to thank you


And now Bridgette. She sees pictures of her sister all around the house. She will grow up knowing her sister died, that cancer stole her from us… Our work with Unravel insures that. .


The other day I was holding Bridgette and a picture of Jennifer. I held it first to me as I was walking .. Eye level. I stupidly looked so deeply into her unblinking eyes.. searching fruitlessly for her.. for some acknowledgment as I told her I loved her. ..

I think I even held my breath.. Maybe if I was still enough… maybe…??

I looked over at Brigette in my arms. Watching me. Absorbing me intently. I turned the picture to her.. and simply said sissy. She smiled and giggled..

And so it hit me, (well more like punched me in the throat) that I am failing her. My job is that Bridgette knows that her sister also lived. Not just that she died. She needs to know how Jennifer liked to have her crib overflowing with stuffed animals.. that she couldn’t carry a tune but tried anyways, (just like Bridgette already does)..


That she would bite the feet of her Barbies until they were so stretched out you could see through them.. That she had a huge sweet tooth . .


Bridgette needs to know that her biggest sister was nowhere near perfect. She needs to know that we fought over how many tuck-ins she could have in the middle of the night. .. That she was my hardest child to get to sit in a consequence.. That she refused to clean up her room and lost every single non-nessasry item in it.. And how long it took to earn it all back. .

snack time?
snack time?
birthday party tantrum
birthday party tantrum

She needs to know, both of my surviving daughters need to know.. Hell all 4 of them need to know,  that despite all that .. or maybe actually because of it..

That Jennifer was loved.. is loved..

And that Jennifer loved them. She took care of them.. she bossed them around. She made them laugh and she made them cry. And that’s exactly how it would be had we been lucky enough to have both Bridgette and Jennifer with us at the same time..

She dictated what they ate, where they ate and when they ate.
She dictated what they ate, where they ate and when they ate.

They need to know that if she was still here our days would be accompanied with the sounds of her. But not filled with them.

Jennifer is just one instrument in our orchestra, and she is so much more than just one note.

But that’s all I teach them.. I need to allow them to hear more than just that one dark and final note..

They need to be taught the complicated beat that she was. The need to know the sounds of her joy and her anger. . Of her give and her take. Of her kind and her mean. And of her love.

i will try harder sissy miss

of sharing your life

not just your death.

…until there is a cure..

10 Responses to “our orchestra”

  1. Such beautiful pictures – and such a beautiful message! She lived and loved – and you show them Jennifer’s light. You’re amazing. And you have 5 of the most beautiful children I have ever seen.
    Continuing to say Jennifer’s name here in IL.

  2. I will always remember the impact Jennifer had on my life. I never knew her but what a special girl. My nephew recently passed away from cancer and as I sat there with him, I asked Jennifer to greet him with open arms. 🎗💛

  3. Love all the sweet pictures of your Jennifer💗💗. So very heartbreaking as she should be here with her siblings today💔
    Continuing to flutter and spread the glitter #love4jlkalways

  4. All the children are part of an orchestra. Jennifer’s sound was so special, I’m certain the Angels wanted her for all the heavens to hear. I am fluttering this year, for her, for you, for all the children, so one day we never lose another “instrument”, to this terrible disease. She still has a sound, and I am certain she is so proud you play it loudly for everyone to hear!

  5. That is the hardest part of sharing our passed on loved ones with others. I know I struggle with sharing my brother’s life with my girls, too. Jennifer lived…. her life mattered as much, if not more so than, her death. 💖💖💖💖💖💖💖

  6. Jennifer’s sound is still here; in everyone’s heart. You do a beautiful job of sharing her with your family and the world.

    Alli, I am so sorry for the loss of your nephew. I love the thought of Jennifer being there to greet him.

  7. Sending love.

    I was thinking about you and your family today as I carried my sleeping four year old in from the car. I was remembering how you let Jennifer take the lead on who would be home with her when she was on hospice. It fills my heart that you trusted her to know herself even in that immensely difficult time for you. You really inspire me as a parent. So much love.

  8. Look back at the picture of your girls…all 3 of them ARE in that picture! See the bright spirit, Jennifer is watching over her sisters!

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