For a Friend Who Died of Marfan Syndrome

Cleaning out an old filing cabinet, I came upon a poem I had written 24 years ago, just after I had given birth to my first child, Benjamin. This spring, he will be married. His younger sister, Elizabeth, will be the maid of honor.

For a Friend Who Died of Marfan Syndrome

Let my baby be hers, too

Let him have grown in her virgin womb

suckled at her empty breast

Let me love him for her

who yearned to create

Let me rejoice in his beauty, the small exploring hands

the fervent mouth

the wetness of which

she will never feel

Let me tingle with the

joy, the freshness, the pain

of living with the same disease that killed her

Let me do this in her honor, in her memory

Her time is over


Filed under Marfan Syndrome

8 responses to “For a Friend Who Died of Marfan Syndrome

  1. Thanks, most people don’t even know what Marfan’s is. My cousin has it, and I. I had a friend, who died during a jog at 33. People did not know how to grieve becuase there seemed to be no meaning, no traffic accident, no cancer just…….fell down, not a stroke or a brain clot just some thing no one else had heard of.


  2. You are right that most people know nothing about Marfan, but thanks to the NMF, that is changing. Fifty years ago, my father died at 36 of a ruptured aorta caused by Marfan. ( I was 5.) The preventive treatments that are available now were not available to him then. My 24-year-old son also has Marfan and his care is far more advanced than mine was at his age. Progress!


  3. This is lovely. You touched my heart.


  4. Chloe M.

    Hi, I do not know anyone with Marfan syndrome but i am actually learning about it in class. This poem is heart felt and im glad i came upon it. I did not think that this disease was fatal or harming when i first heard of it. I suffer from a syndrome myself ( Beckwith-weidemann syndrome) and it has caused many problems in my life. Problems that were fixed and just left me with low blood sugar. i feel lucky after reading this poem, even though i know that my child will carry the same syndrome i know that it would not harm he or she in death. and hopefuly i will go on and teach he or she how to deal with it as i have. thank you for this poem and i will share my prayers with you.
    Congradulation for your Son’s wedding.


  5. Dear Chloe,
    Thank you for writing, and I wish you and those you love good health always.


  6. Roanne,
    What a lovely poem! It brought tears to my eyes. I’ve always known that in order to write a truly special poem to someone, we have to love them deeply and unselfishly. How lucky your friend was to have you in her life.



  7. You captured the essence of love, loss, and the tenacity of life. It was beautiful. Thank you.


  8. Debi

    Beautiful poem. It took my breath away and then – the biggest sigh. It gives us all pause to appreciate what we have and to mourn for those less fortunate.


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