From His Heart to Ours

When my father passed unexpectedly on Tuesday, I was dancing.

I was swirling, whirling and laughing with joy. My dad was at work at the Portsmouth City Hall, doing what he loved.

Driving home from dance class, my phone buzzed. Kathy’s cell. “Call me right away.”  I knew in her voice.

“Daddy,” I whispered softly, wondering if he could hear me now.

I sat at a red light. I looked to my left, the National Cathedral standing dignified and tall nearby. The light turned green. My foot floated slowly off the breaks. I drove the speed limit all the way home.

Once parked, I re-dialed Kathy.  I can’t describe this moment, other than to say that I always knew his heart would stop and mine would feel torn out simultaneously,  I just didn’t know when. When became now.


I made calls, packed quickly, flew to Boston, drove to NH. Tears. Pounding headache. More tears. Cataplexy worse than ever. I lay paralyzed on the floor, my head in my sister’s lap.

When I awoke the next morning, it was still true. Among other duties, an obituary needed to be written for the papers by 4pm.

I’m “the writer” of the family… No one forced me, but it was my place.  I gathered the information.  I looked up examples. My Dad would have advised me to break it into small tasks, so that’s what I did.

A strange thing happens when writing an obituary. Tom Flygare IS… became Tom Flygare WAS… All my sources were written in present tense. I was tasked with putting him in the past. A duty I never wanted.

The obituary wasn’t a masterpiece, but it was accurate and on time. I knew he’d be proud.

He gave pieces of his heart to everyone he loved. Integrity, respect, kindness, patience, unconditional love. It’s no wonder his heart became weak. He’d given so much of himself to others. 
For now, my enitre being aches for him. I know he’d advise me that: “It hurts unbelievably now, Julie, but the pointed pain will dull. It’ll never go away, but each day will get better.” And I’d believe him.
Ultimately, I hope to celebrate him through my present life.  I’ll hear his voice echoing in the cheers of Fenway Park. I’ll feel his heart beating in mine.  I’ll continue to dance and work towards my dreams – knowing he’s somewhere out there cheering for me, his Fabulous Jules. 
I’ve got to ride;
Ride like the wind;
To be free again.
Please read: 


  1. moi on January 20, 2012 at 8:09 am

    Julie, I am so sorry to learn of your shockingly sad news. I'm sure you made your father proud.

  2. Jess on January 20, 2012 at 10:22 am

    Julie, I am so sorry to hear of your loss. I am also from MA and have been following your blog for 2 years now, since I'v been diagnosed with N. My father also passed away unexpectedly, 2 months ago. Your writing and tributes to your father will make him proud!

  3. Sasha on January 20, 2012 at 10:24 am

    Thank you for your beautiful words.
    I will be praying for your family as you grieve this tremendous loss.

  4. Ramez ElMofty on January 20, 2012 at 10:27 am

    Sorry for your loss, may he rest in peace.

  5. Carlyn on January 20, 2012 at 10:35 am

    So beautifully written. Love you Julie.

  6. Miss Diagnosis on January 20, 2012 at 10:39 am

    Much love and comfort to you in the death of your father. Praying for you and your family. <3

  7. Saraiah on January 20, 2012 at 10:56 am

    Julie sweetheart, your dad was handing you the seeds of wisdom, kindness, courage, and many more things throughout your life. I know this in spite of the fact that I never met him.

    I know because in your writing, I see the seeds he handed you are no longer seeds – they are great blooming rose bushes, daffodils, lilacs, dogwoods, cherry trees… I read your post, and realize that in the midst of tremendous pain, you continue to flower.

    Not everyone has the wisdom to plant the best seeds they've been handed, and to tend them so well. You cannot see your dad anymore, but I do not believe that he is gone. And right here, right now, your father lives in you in an absolutely real way through this garden you're growing.

  8. Tricia on January 20, 2012 at 1:52 pm


    Try to remember when things get incredibly tough that I am here ready to dance and twirl for you until you have the strength to do it again yourself. With or without cataplexy, I am your girl.

  9. Melissa on January 20, 2012 at 2:38 pm


    I just would like to let you know that you and your family is in my thoughts and prayers during this time. You're an inspiration, no doubt that you have your father's remarkable traits.

    Lots of love!

  10. Melissa on January 20, 2012 at 2:45 pm

    This comment has been removed by the author.

  11. Anonymous on January 20, 2012 at 2:51 pm

    Julie I am so sorry that your father has passed. I am sure he is looking down at you with the greatest pride and support! I only wish I had your gift for words so that I could properly express my grief over your loss. Chris

  12. Unknown on January 20, 2012 at 3:16 pm


    I think my dad already told you, but I'll say it again. The obituary was lovely, as was this. You did a great job. Our whole family will miss your dad very much, and you are in my thoughts.

  13. Strength + Rebirth = Immortality on January 20, 2012 at 3:53 pm

    You made me cry, dammit. You are so beautiful, Julie, and it is clear to me your dad has a lot to do with that. I wish there was something I could say to ease some of the hurt, but all I have is – thank you. Thank you for always being an inspiration to all of us, thank you for being strong enough to share these most intimate moments, thank you for sharing your dad with us.

    As a Daddy's girl in the same age bracket, even trying to comprehend what you must be feeling makes my hands shake and my heart break. I pray you and your family are able to quickly move through the worst together and get to thecelebrating of life.

    He is always with you, he is always holding you.xoxo

  14. livingwithn24 on January 20, 2012 at 4:09 pm

    What a beautiful tribute to your father. He must have been a wonderful man. I am so sorry for your loss.

  15. Made by Michelle on January 20, 2012 at 4:49 pm

    I'm so sorry for your loss. I'm sure he's very proud of all you've accomplished, and no doubt what you'll continue to accomplish.

  16. LRopiak on January 20, 2012 at 5:36 pm

    I don't know you very well, but you have been a wonderful advocate for people with Narcolepsy… thank you. It pains me to hear of your loss. Your father raised an strong and amazing woman. My thoughts are with you and your family.

  17. NarcoGirl on January 20, 2012 at 8:20 pm

    Oh Julie, I'm so sorry for your loss. I'll be praying for comfort for you and your family.

  18. manicramblings on January 20, 2012 at 10:27 pm

    "When I awoke the next morning, it was still true."

    I absolutely hate this. Its exactly what goes through a persons head, and I appreciate you voicing that. You always know just how to write your feelings. Thank you.

  19. Unell Hussey on January 20, 2012 at 11:10 pm

    Sorry to hear this news. He will always be with you.

  20. Anonymous on January 22, 2012 at 11:19 am

    So sorry Julie. We all know it will happen one day but we are still never prepared. My thoughts and prayers are with you and your family. Big hugs, Nancy Ackerman

  21. Susan on January 23, 2012 at 3:48 pm

    It is so hard to lose a parent, especially one who is as special as your dad seems to have been. Though he will not be with you physically, he will be with you in so many other ways.

  22. Kristen on January 25, 2012 at 7:25 pm

    I am so, so, so sorry about the loss of your father. I can't imagine. You write about him so beautifully.
    Hugs and prayers to you and your family…

  23. Rachel Everett on February 14, 2012 at 2:18 pm

    Just wanted you to know . . . I'm thinking of you during this difficult time. From the online articles and your writings, I can tell that your dad was an amazing man who will be missed dearly. I'm so sorry for your loss.

  24. Rachel Everett on February 14, 2012 at 2:23 pm

    Somewhere a journey begins at the end of the worldly existence we know, Somewhere a path stretches over the stars, and rivers of memories flow… Somewhere a silence is heard far away and the brightness of day fills the night, Where the trials of life are resolved into peace. May it comfort you to know that your father is at peace in the universe and will live on in the hearts of everyone who loved him.

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  27. Julie Brown on April 13, 2013 at 1:42 am


    Your dad was my cousin. This is such sad and stunning news. I was Googling info on his brother, Billy, and saw that Tom had died. I’m so sorry.

    You look a lot like his mother. Did anyone ever tell you that? I have old photos somewhere of Doris and Bill, Tom, Nancy, and Billy. Please feel free to email me if you want to.

    Julie Brown

    • julie on April 14, 2013 at 5:05 pm

      Hi Julie,
      Thanks for reaching out. So excited to meet you.
      Big hugs,
      Julie F.

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