Joscelyn's Journey

A Beautiful Child's Journey Through Hemimegalencephaly


on July 29, 2012
This tiny, chubby hand, petal-soft and dimpled, may not at first glance appear to be very powerful.
But it belongs to a very special little girl who is changing hearts and lives!
Almost every day, someone writes to me to tell me that when they see a picture of Joscelyn smiling in spite of her circumstances, it makes them want to smile in spite of theirs, too.
It’s almost impossible to look at this little baby, so vulnerable and weak, yet still overcoming the enormous obstacles in her path and not become convinced that you can surmount whatever difficulties you’re facing in your life, too!
“My hands are small, I know, but they’re not yours, they are my own-and I am never broken.”   -Jewel, “Hands
I believe that we are all God’s hands.
 Joscelyn’s hands are small, yes-but they are being used in a mighty way, a way that is completely unique to her, to touch lives and to inspire the hearts and minds of those around her.
I was blessed this week by another pair of small but very powerful hands.
A beautiful 7 yr old  little girl named Karlie Earhart (and her twin brother Killian and sweet mom Amy) sent Joscelyn a fun and colorful handmade pillowcase with an amazing story behind it!
Precious little Karlie was diagnosed with epilepsy at the tender age of 3. 
 Her doctors at Le Bonheur Children’s Hospital have tried a variety of methods to stop Karlie’s epileptic seizures, including medication, brain surgery and a vagus nerve stimulator. They are now finally finding success with a special Ketogenic diet.
Every 3-6 months, Karlie, her mother and grandmother, must drive over 500 miles from their home to the hospital for treatment.
Each time they visit, Karlie must stay in the Epilepsy Monitoring Unit (EMU) for 3-10 days.
You would think that the inconvenience, frustration and failed attempts to cure her condition would have left them broken by now.
But you’d be wrong.
When Karlie checks into the hospital, she always brings a special pillowcase from home to make her stay more comfortable…
but she doesn’t just bring one for herself. 
Karlie also brings dozens of other colorfully decorated pillowcases which she personally delivers with HER small hands to fellow epilepsy patients to help cheer them up, too!
In between their visits to the hospital,  Karlie and the rest of her family use their hands to pick out the fabric, sew and iron each case.
They call this unique ministry, “Karlie’s Angels
The words, “Dream For a Miracle” are printed on a card attached to each case.
Is it possible to use your hands to help others even when you’re waiting on a miracle yourself?
Karlie does.
I think of the many different hands who are helping to give Joss her miracle.
There are the nurses’ hands who administer her medication, keep her wounds clean and diligently watch for any signs of danger.
Albert, the hospital’s “Adventure Guide”, uses his hands to comfort and entertain Joss with music.
The therapists use their hands to strengthen her muscles and teach her new skills.
Dr. Lee uses his hands to read, analyze data on the computer and direct her care.
Dr. Baumgartner uses his hands to carefully and painstakingly execute what is commonly known as the most invasive surgery in existence today, the hemispherectomy.
Many of you have used your hands to knit, crochet or sew hats for Joss, to create art pieces to sell to help us pay for her medical expenses, to make phone calls to organize fundraisers, to send us encouraging cards and gifts and to pray.
I’m using my hands to write her story; to educate those not familiar with epilepsy and to encourage other families who are facing hemispherectomy.
“My hands are small, I know but they’re not yours, they are my own.”
I may not be a trained surgeon or a skilled musician but my hands still have an important job to do. I don’t want to be made useless or idle with despair because of my present circumstances!
Thank you, Karlie for reminding me that my hands can never be too small, too young, too old or too weak to help bring someone their miracle! 
“In the end, only kindness matters.”

12 responses to “Hands

  1. Maria says:

    LOVE THIS…your words, the hands of all described and sweet babies Joss and Karlie who’ve stopped us all in our tracks! Again….Jen, just when I think your last post couldn’t be beat, you do it again! ❤

  2. So beautiful. Love and prayers through Christ Jesus:-)

  3. Judy Frederick says:

    I am a cousin of Pat’s from Indiana, and have been praying for your beautiful Joss as well as all of your family. Your words of her journey have indeed touched the lives of so many, what a gift! We will continue to lift you all in prayer.

  4. margoslaby says:

    Well this post officially made my day…

  5. Sandie says:

    Thanks for the reminder Joss, Jennifer and Katie!! Jennifer you have a real gift for words! I have really enjoyed reading your blogs!! 🙂

  6. Amy says:

    Thank you do much for the kind words. I absolutely love your blog, and today when I read that you had mentioned Karlie, wow!!! I didn’t know what to say! I read it to my family before lunch, fighting back tears the whole time! It it such a hard battle for the kids, and they fight so hard!!! I hate that they have to go through this, but I have gained so much strength from seeing so many of these kids fight this disease so hard!! Thank you for sharing part of Karlie’s story, we are continuing to pray for you, Joss, and the rest if your family!!! Love you guys!:

  7. June Silva says:

    What a beautiful post! I love the picture of the hands, your darling sweet girl and the tribute you gave to the other family. Yes, sadly, there are so many children who are ill. I recall what hat you had concerns for the future and if Joss would be happy about what you shared. I believe she will be grateful and proud to have such loving parents and so many others who were praying for her! I know tomorrow will be another tough day, but please hold in your heart, how many are praying.atThink of the future and picture your little girl reading all of these wonderful words that you wrote!! With Lots of love and prayers

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: