Joscelyn's Journey

A Beautiful Child's Journey Through Hemimegalencephaly

The Calling Card

on June 5, 2012

Joscelyn’s middle name is Grace.

I chose this name specifically in the hopes that as she grew, she would learn to conduct herself in a graceful (and grace-filled) manner with everyone she encountered.

I will admit that showing grace to people has sometimes been a struggle for me in my life. I am better about it than I used to be but not so skilled as to not still have a fair amount of trepidation about dealing with the inevitable questions, comments, stares and whispering that we will be confronted with after Joss has her hemispherectomy. 

 After her procedure, my daughter will be sporting a significantly large scar on her head. While we will do our best to artfully conceal our warrior princess’ battle scar under a wide variety of hats, it may still be somewhat visible and will definitely generate attention. The surgery will also leave her paralyzed on her right side and likely needing to wear a variety of rehabilitative devices such as braces, orthopedic shoes and constraint induced therapy vests, at least for a time.

People WILL stare.

They WILL whisper.

They WILL ask questions.

They WILL make comments.

 I like to think that I will welcome these conversations as opportunities to educate others about hemimegalencephaly and the hemispherectomy procedure.

But I also envision that on my “not-so-good” days, when the 10th curious onlooker in a matter of hours asks me yet again, “What’s wrong with her?”, I might just snap. Instead of a patient, grace-filled answer, I might give them a curt reply or even toss out a sarcastic barb.

As Joscelyn grows and her speech improves, she will be confronting these same questions more and more on her own from other children and their curious parents. On those occasions, she will undoubtedly repeat whatever answers she has heard me say over the years in response to those same inquiries, whether they be patient explanations or clipped responses.

So for our mutual benefit, and as a nod to arguably the most graceful women in all of history,  I have decided to resurrect the Victorian tradition of the “calling card”.

Calling cards were all the rage in the 1800s and were carried by the most well-mannered of women as a way to formally introduce themselves. Once a week or so, Victorian women would dress up and go “calling” on their friends and new acquaintances. If a friend was not found to be at home, one of these beautiful calling cards would be left as a token of their friendship and good will.

Earlier today, I went to Vistaprint and created a cute calling card for Joss. The card reads simply, “Thanks for your interest! My name is Joscelyn. 1/2 of my brain didn’t grow properly, so my doctors decided to take the bad part out! I have a LOT of healing left to do but I’m a fighter! You can follow my story at http://www.joscelynsjourney.wordpress.com or http://www.facebook.com/joscelynsjourney Want to help? http://www.hemifoundation.org

I know that most of the questions that will come will be from good-hearted people who are simply curious and really, who can blame them? How can you help but notice a child wearing supportive braces, walking with a limp or with an arm hanging limply at her side? Her condition is rare and fascinating. The cure is radical and barely believable.

But I also know that discrimination, cruelty and plain old bad manners are a part of life. People can be petty, mean and willfully ignorant. There WILL be times when the seemingly endless questions and comments will try our patience, and sometimes even wound us.

In those times, I pray that Joscelyn and I will have the GRACE and the ability to hold our heads high and instead of retaliating, bite our tongues and wordlessly hand those individuals a beautiful little card that encourages them to see our precious little girl as more than just a statistic, more than merely a “disabled” child- but as an individual.

“My name is Joscelyn. I have a story. I have an illness, yes- but my illness does not define me. Dare to expand your pre-conceived notions about what you consider to be possible; not just in my life…but in your life as well! It’s no accident that we met today. God is using me to encourage you!”

This is the message we want her to carry throughout her life.

This is her calling card.

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20 responses to “The Calling Card

  1. Steph says:

    Love, love, love!!! Gorgeous card! I like the last paragraph, too: “My name is Joscelyn. I have a story. I have an illness, yes- but my illness does not define me. Dare to expand your pre-conceived notions about what you consider to be possible; not just in my life…but in your life as well! It’s no accident that we met today. God is using me to encourage you!”
    Powerful! Would go great on the back, too! You continue to be absolutely awe inspiring…much love to you!

  2. Wendy says:

    What a great idea Jennifer!! I think you’re right, the majority of people will stare and ask questions out of curiosity and ignorance and will have a heart full of compassion for both Joss and her family. Education is the best way to combat ignorance, and with such a rare condition, many of us are very ignorant of even it’s existence! She has become a part of our daily prayers, as well as other children facing this same challenge. Joscelyn is so blessed to have such wonderful parents!

  3. kimnixon says:

    Wonderful way to support your daughter thru this journey!

  4. Andrea Monaco says:

    I love the calling card idea! Another beautiful post from a courageous Christian lady. God bless you, my friend.

  5. Linda S. says:

    andrea, i so appreciate YOUR grace and compassion for your family as well as people unaware of joscelyn’s situation. the willinness of people to help others understand helps grow acceptance of “out of the ordinary” situations of all kinds. this is just one aspect of the gold/gifts uncovered and offered to us all because of joscelyn’s hero’s journey (see joseph campbell’s work). love and light to you all!

  6. DEBBIE says:

    As always you inspire me!! I am grateful to watch this journey in color…thankful to have the chance to walk beside you in moments..and always , always, always…humbled by the GRACE you show in all you do!

    • 5thmonkey says:

      Thank you, my sweet friend! You are such an encourager and I am so privileged to have you walking beside me on this journey!

  7. Marla Appel says:

    Beautifully thought out and said.

  8. LOVE it! Awesome job, Mama.

  9. Kelsey Ploss says:

    You madam are an inspiration and the vision of strength and grace.

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