Joscelyn's Journey

A Beautiful Child's Journey Through Hemimegalencephaly


on June 10, 2012

I’ve been thinking a lot about gratitude lately.

Mother’s Day was just last month. My thoughtful husband, knowing what a difficult day this would be for me after having just lost my sweet Nicholas six months before, gifted me with a copy of Ann Voskamp‘s best-selling book, “One Thousand Gifts“, in which  readers are challenged to “Live fully right where you are” and to “find joy in the midst of deadlines, debt, drama and daily duties.”

I will admit that I cracked the book open only out of the greatest love and respect for my husband. Yes, of course, I thought to myself, you can find joy in the midst of the mundane, everyday trials of life; the broken washer, the flat tire, your child’s lost retainer- but my son died. He died! How am I supposed to “live fully” when a piece of my heart now lives forever outside of my body?

Voskamp alleges that anyone can do it through “eucharisteo” (yoo-khar-is-teh’-o): gratitude, or the giving of thanks. “1,ooo Gifts” chronicles the personal transformation she experienced when she committed herself to the task of making a list of 1,000 things she was grateful for.

A simple idea, yes- but one that she claims changed her life.

And so, with pen and paper in hand and my newly downloaded “One Thousand Gifts” app at the ready, (Yes, there’s an app for that!) and with a fair amount of skepticism, I started making a list of people and things I was grateful for.

My list started off as your list might:

1) My husband

2) My children (Ouch!)

3) My friends

But then I realized that I wasn’t really trying. WHY was I grateful for my husband? WHY was I grateful for my friends? I went back and made my list more specific:

1) A husband who drives to Dunkin Donuts to get me a Caramel Swirl Latte just because he loves me. And he doesn’t even drink coffee! (Mmmm….Now I can add “Caramel Swirl Lattes to my list!)

2) A son who, in the midst of packing for a summer trip, takes the time to put all of his baby sister’s favorite YouTube videos on a disc for her. (Which we only use for personal in-home use. Please don’t call the Feds.)

Then I realized- It’s the small things! The small things are what we take for granted. I KNOW how fortunate I am to be blessed with children, blessed with a kind and wonderful husband, blessed with good health- I KNOW that.

But I forget.

The act of making the list forces you look for things to add to it. It makes you notice the details of life- and the details are what’s important. The details are what make your life unique. Memories are made up of details: sights, smells, sounds, feelings. Think of one of your happiest memories. How many details can you remember?

I’m very glad my gratitude list was already in progress when we received Joscelyn’s diagnosis of hemimegalencephaly on May 25th, just weeks after Mother’s Day. As I stood sobbing in the parking lot of the medical center after hearing the news, a voice inside my head automatically began to recite:

“87: Modern Medicine

“88: Access to research and case studies on the Internet”

“89: “The diagnosis isn’t terminal”

Gratitude had become a habit.

1 Thessalonians 5:8 tells us to” Give thanks in all circumstances, for this is God’s will for you in Christ Jesus.”

Even this, Lord?

Yes, even this.

The key to understanding how we can continue to give thanks in the midst of great suffering is to understand that we’re not commanded to give thanks FOR all things. I can never be thankful FOR losing my son or FOR having to watch my daughter suffer with intractable seizures. No, we’re commanded to give thanks IN all things; in the midst of the diagnosis, in the midst of the wait, in the midst of the surgery, in the midst of the recovery, in the midst of the therapy (whether there are hopeful strides forward or heartbreaking setbacks)…in the midst of it all.

And we do that by recognizing that there are gifts being given to us all the time. We just have to learn to recognize and appreciate them.

Some of the gifts I’ve added to my list in the last couple of weeks have included:

1) An excellent, inspiring video by neurosurgeon Gary Mathern called “What Can You Do With Half a Brain?” which explains the hemispherectomy process and the amazing ability of the brain to recover lost functionality.

2) The Hemispherectomy Foundation website and Facebook Page where I’ve been able to meet other hemi-parents, ask questions, and watch inspiring videos of other hemi-kids accomplishing great things post-surgery.

3) An e-mail exchange with Dr. Ben Carson, pioneer of the modern day hemispherectomy procedure and inspiring neurosurgeon featured in the film, “Gifted Hands“. Dr. Carson will be retiring soon but before he does, I was able to thank him for making a normal life possible for Joscelyn.

4) Friends and family have come together to plan a Hat Party for Joss! They will be showering her with adorable and stylish hats that she can wear post-surgery to protect her scar while it heals. (Does anyone remember the old SNL skits starring Billy Crystal as “Fernando”? Fernando says, “It’s better to look good than to feel good! And you look Mahvelous!”)

5) This blog! As of this writing, there have been over 4,000 views of Joss’ story! Your loving and supportive comments cause me to weep tears of gratitude every time! It’s such a comfort to know that so many people are rooting for her! Prayers are going up all over the world in the U.S., Canada, Japan, New Zealand, Australia, Africa and more. The outpouring of love that we have received has been amazing!

One day, I will share my gratitude list with Joscelyn. As soon as she is able to write comfortably, I will encourage her to start a list of her own.

I WILL help her find the good,

even in this.







12 responses to “Eucharisteo

  1. Andrea says:

    Your writing is so beautiful and inspiring, Jennifer. I can see God shining through in every word! Continuing to pray daily for Joscelyn and your family.

  2. Pam says:

    What a wonderful way to find peace in the midst of all the chaos of your life right now…and what a lesson for each of us. We may not being going through the pain and anxiety that you are experiencing, but each of us has our own crosses to bear in this life sooner or later. If we can just learn to count our blessings during the good times, it will come more naturally to us in the difficult times…as you have already testified. God is already using your experiences to bless us and countless others who will follow after. When we are tempted to ask “Why me, Lord?”, we are reminded that God also endured great sorrow and loss when He watched His only Son suffer and die on the cross for a fallen world….it was for us that He died. If my pain and heartache can actually help someone else to learn to cope and find comfort when it’s their turn, then so be it, Lord. We are all in this together. Thank you for being willing to share your journey with us. You are paving the way for others to follow and find that same peace. Continued prayers are with you all.

  3. Debbie says:

    Jennifer, you are such an inspiration to me. My prayers and thoughts will continue to be with you and Joss and your entire family. God is using your words to help us all! Thank you!

  4. Steph says:

    My new favorite place to find loving inspiration: Your Blog.

  5. debbie says:

    I am getting the book…you inspire me..every single moment or every single day! I love you my sweet friend!

  6. Jen says:

    Love you too, Debbie! Thank you for your faithful friendship!

  7. Erica says:

    Goodness, you are a great writer! I love coming here to this blog. I may be a little biased (because we share something special with our little girls), but I just ‘get’ you! 🙂

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