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Jesse, October 15, 1987-January 3, 2005

     If you no longer live

If you, my beloved, my love,

If you

Have died,

All the leaves will fall in my breast,

It will rain on my soul night and day,

The snow will burn my heart,

I shall walk with frost and fire and death and snow,

My feet will want to walk to where you are sleeping,

But

I shall stay alive,

Because above all things you wanted me

Indomitable

–Pablo Neruda

January 3rd, 2012UncategorizedRead More >10 Comments


10 Responses to “Jesse, October 15, 1987-January 3, 2005”

  1. Andrea Fein Says:
    January 16th, 2012 at 11:42 pm

    Ms. Leone, I saw “Adaptation” for the first time last night and seeing your husband reminded me of Jesse, who I feel lucky to have gotten to know a bit, from reading your wonderful “Knowing Jessie.” I am relatively new in Newton, a transplant from NY, and I was so very moved by your writing, and your amazing story and beautiful family. I keep hoping to run into you somewhere. Anyway, I just wanted you to know I am thinking of Jesse.
    That is a beautiful and very sad poem.
    I have been sad a lot since our move here, leaving a lot of friends and family behind, but I am trying to be positive and keep strong “indomitable” people like you in mind as I adjust to this new place. With love and wishes for a happy and healthy New Year for you and Mr. Cooper

  2. marianne Says:
    January 17th, 2012 at 10:50 am

    Dear Andrea:

    Thank you so much for your encouraging letter. This is a hard time of year for me–I love that Neruda poem. The last line says it all. And I do feel that going on, carrying the message of this book to inform future teachers, to comfort parents who have also lost children, keeps Jesse alive in the world. I don’t live in Newton any more (thought my sis lives in the house I grew up in!)–I now live on the south shore but I do come home to the working class section of “the Lake” where I grew up, especially if I can make the feast of the Madonna they have every year in July. I know, it’s weird to think of Newton as working class, but believe me, where I grew up–it was! I’m writing a comedic fiction coming of age right now about Catholic school (I did twelve years) and I’m thinking about that area a lot.
    And, believe it or not, like you I miss NYC! Chris and I lived there for seventeen years and also left behind a lot of friends. I think you will grow to like Boston/Newton. Culturally, we may not have Broadway, but the number of writers living in the Boston area is truly amazing. And the North End is actually better than Little Italy in NYC!
    I wish you well in your transition, Andrea, and thanks again for writing.

  3. Anuya Says:
    January 20th, 2012 at 2:26 am

    Dear Ms. Leone,

    I very much enjoyed reading ‘Knowing Jesse’, especially as he was only a year older than me. I hope you do not mind, but I wanted to share with you the website of a project in which I am involved called ’100 Leaders’ as it embodies many of the positive things you convey in your book. The website contains the stories of people in Australia who are living with disability.

    http://100leaders.org.au/

    I wish you all the best for the future.

  4. marianne Says:
    January 20th, 2012 at 8:43 am

    Dear Anuya,
    I am so happy to meet you and to be able to see your beautiful smile. Thank you so much for forwarding the site. I am passing it on to my friend Anastasia Somoza, who reminds me of you. She is raising money for an aide so she can pursue her master’s in Human Rights next year at the London School of Economics: http://www.indiegogo.com/Help-me-pursue-a-Masters-in-Human-Rights-at-the-London-School-of-Economics
    I like to think that Jesse would have followed your lead in pursuing higher education had he lived. He wanted to be a writer.
    I read your piece and WOOOO!!! SURFING! I love it! You sound very mature and I am happy you gave props to your parents–it is so important to be raised in a family that supports you–you are the living proof!
    I’m passing your site on to Anastasia and her twin sister, Alba, who is nonverbal and also pursuing her degree. She is an artist whose works are in galleries in NYC.
    How on earth did you find my book overseas? I’m delighted that you did!
    Thank you for writing–I am very happy to meet you and hope to do so in person some day.
    best,
    Marianne

  5. Catherine Bourassa Says:
    January 27th, 2012 at 11:11 am

    Dear Marianne,
    I just finished reading “Knowing Jesse”. You and your husband and son have moved me in ways that are hard to express. My friend Wende (she works at the Lowes Hotel in Atlanta) recommended your book to me. I have two leagally blind children ages 18 and 22 and the stories of trying to navigate the system made me laugh and cry. My daughter was told by a seventh grade teacher that she would be forty years old and living at home with her mother and she would never go to college and she needed to snap out of the bubble that she was living in. Little did she know that sometimes we have to create a bubble to protect ourselves. My Mama Bear came out in full force. You are a wonderful mother and I just wanted to let you know that Jessie found me today and he is giving me strength. I laughed and cried( a nice mix). Thank you for sharing your story. With gratitude,
    Catherine
    PS
    both my kids are in college FU seventh grade teacher.

  6. marianne Says:
    January 27th, 2012 at 1:55 pm

    Dear Catherine:

    First of all, please say hello for me to lovely Wende. Her smiling face greeted me every day of the three weeks I spent at Lowe’s this past summer and meeting her and Jonathan Vendrick were highlights of my stay in Atlanta. If I ever come back, I will be sure to stay there again just because of them. I am so happy she referred my book to you. The story of your two children moved me, and I was enraged to hear the dismissive and cruel comments made by that teacher to your daughter. I so identify with the transformation into feral mother bear. “Jesse found me today and gave me strength.” I can’t tell you how much that sentence means to me. Thank you.
    best,
    marianne

  7. Joan Lamont Says:
    February 7th, 2012 at 12:53 pm

    Maryanne, It was a pleasure meeting you at Westwinds last week. I’m the lady who went to St Theresa’s In West Roxbury for 12 years. Not wanting to monopolize all your time, I wanted to tell you that I too had a son with LD who spent most of his school yrs isolated in a totally unsuitable atmosphere (a room with other kids most of which were severe behavioral problems). He was ridiculed and called horrible namesU by all of the other children. He is now 34 and still suffers from depression which started at age 10. The lack of wholesome peers and friends has left him socially handicapped. In reading the book I knew your plight as I fought it too. Thanks, Joan

  8. marianne Says:
    February 7th, 2012 at 4:32 pm

    Joan, the pleasure was also mine. People do not understand how school humiliations can stay with someone for a lifetime. When I spoke before the Federation for Children with Special Needs last year, I referenced our young plumber who was doing a (spectacular) job at our house. He noticed my book, and told me he didn’t read well. Then he recalled a sped teacher saying about him: “Class, take a good look at….in ten years, he’ll be asking you if you want fries with that.” The hurt and humiliation was still in his voice ten years later. I reminded him that he was now a terrific plumber and he brightened, saying, “Yes, I can’t read a book easily, but just hand me a schematic on anything and I can figure it out.” Thank goodness this kid was able to forge ahead in his career, but I am sure there are many who still are traumatized from these kind of put-downs. And this from a teacher!!! This is why I also support the arts in school–the arts are often a refuge for kids with learning disabilities, a way for them to express themselves, and the arts community is more accepting than most–I’ve often thought that in our community, the number of people with learning disabilities must be higher than average. I hope your son can maybe find some consolation in the arts. Grub St. in Boston is a great writing org that offers all kinds of classes.
    Thanks for writing in, Joan, and for reading my book.
    best,
    Marianne

  9. Stacy Gerlach Says:
    May 10th, 2012 at 9:42 am

    WOW, I just got done reading about Jesse! It was light I was reading about my Billy. Although he didn’t have communication skills like Jesse and he had a feeding tube, everything else seemed the same. Went through the same BS and in 2005 ended up on our school board. I am now proud to say 85% of our special ed is included.What a fight but so worth it. My baby boy was 21 when he passed, March 8, 2012. It’s been 2 months and God it’s a change! Someone on “Greivings Mothers” on facebook said I had to read your book and I did so yesterday…WOW…we are Blessed! Thank you for sharing…I’m not alone!

  10. marianne Says:
    May 10th, 2012 at 9:52 am

    Dear Stacy:

    I am so glad the book resonated for you. I remember those early months without Jess when the pain was visceral. I am giving a workshop at the Compassionate Friends convention in Costa Mesa this July on losing a disabled child. It’s titled “Maybe it’s for the best” because people actually say that to you, making you feel like not only was your child’s life not validated during their actual time on earth, but that now, after death, you are still fighting for their validation.
    Kudos to you for getting on the school board, Stacy. I recognize another Warrior MOther.
    love,
    m

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