Joscelyn's Journey

A Beautiful Child's Journey Through Hemimegalencephaly

A Wonder and a Healer

on March 1, 2013

Our precious baby girl had her 5th and what we pray will be her last surgery on Wednesday, February 27th.

Here’s our brave Warrior Princess, less than a day after undergoing a grueling 11 hour procedure:

josspt

Though a little swollen and still a little sleepy from the pain medication, she is already smiling and ready to play!

“She is a healer.”, her neurosurgeon says, and while I know he means it in the sense that her physical body heals quickly from surgery, I believe that she’s a healer in the spiritual sense, as well.

Throughout this journey, we have been blessed to hear from dozens of people who have shared with us inspiring stories of how our amazing little girl has made an impact on their lives.

For some, her struggles and triumphs have given them the courage to continue fighting their own battles. “If Joss can face the day with a smile after everything she’s been through, then so can I.”, is a message we hear time and time again.

Her journey has even inspired some people to quit their jobs and work with children in some capacity; to become therapists and help children like Joss learn to walk and talk or to use their musical talent to entertain children in hospitals.

Quite often, people tell us that she is a beautiful, faith-building reminder to them that God is still in the business of working miracles.

When Joscelyn was first diagnosed, many people prayed that she would be healed completely and that God would spare her from needing any surgery at all.  As a believer, I knew that God could heal her that way. Certainly, as her mother, I desperately wished and hoped that He would! But somehow I think I sensed that healing her quickly and quietly wasn’t His plan. 

Instead, God has chosen to use our baby girl to inspire and heal others by way of her affliction, not by removing it. With every surgery and with every complication that we, in our limited thinking, perceived as a “setback”, Joss continued to inspire more and more people with her sweet, lopsided grin and indomitable spirit.

“My grace is sufficient for you, for my power is made perfect in weakness.” we’re reminded in 2 Cor 12:9.

We’re all weak in one way or another.

Joscelyn’s weakness just happens to be having been born with hemimegalencephaly; a big bad brain that wants desperately to seize.

brain copyIn this image, on the left, you can see what remained of Joscelyn’s brain after undergoing a modified functional hemispherectomy and two subsequent resections to remove additional brain tissue last summer. This particular scan was taken immediately after Joscelyn experienced a seizure in December of 2012. Can you see the highlighted white spot? That’s seizure activity in what remained of her left mesial frontal lobe. Though it may look large in the picture, that area of brain tissue was no more than 1 cm sq.  So intent on seizing was this tiny bit of “bad brain” that it was even causing Joscelyn to have seizures while under anesthesia on the operating room table.
The scan on the right shows what her brain looks like now, with that bit of tissue removed. She has not had a single seizure since the procedure was done and since the left hemisphere was already disconnected, she suffered no cognitive or physical deficit as a result of the surgery.

Most interestingly, this isn’t an area of brain that is routinely taken as part of a functional hemispherectomy. Because Joscelyn’s epilepsy was so difficult to treat, hers is now a case for other neurosurgeons to study when traditional methods fail.  Had she been healed sooner, or more easily, fewer doctors would have access to this information.

After months of her confounding the doctors with the extent of her illness, Joss is finally free to confound them with the extent of her healing.

This child:

Val2

Teacher. Wonder. Warrior.

Healer.

“Doctors have come from distant cities, just to see me,
Stand over my bed, disbelieving what they’re seeing.
They say I must be one of the wonders
Of God’s own creation.
And as far as they see, they can offer
No explanation.
Newspapers ask intimate questions, want confessions.
They reach into my head to steal the glory of my story.
They say I must be one of the wonders
Of God’s own creation.
And as far as they see, they can offer
No explanation.
Ooo, I believe, fate, fate smiled
And destiny laughed as she came to my cradle.
Know this child will be able!
Laughed as my body she lifted,
Know this child will be gifted,
With love, with patience, and with faith,
She’ll make her way, she’ll make her way.
People, see me. I’m a challenge to your balance.
I’m over your heads how I confound you,
And astound you,
To know I must be one of the wonders
of God’s own creation.
And as far as you see, you can offer
No explanation.
Ooo, I believe, fate, fate smiled
And destiny laughed as she came to my cradle.
Know this child will not suffer!
Laughed as my body she lifted,
Know this child will be gifted,
With love, with patience, and with faith,
She’ll make her way,
she’ll make her way.”

-Natalie Merchant: “Wonder”

Wonder

 

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16 responses to “A Wonder and a Healer

  1. Kathy Vaccaro says:

    So, so happy the surgery went well! May God bless and heal Joss!

  2. giazzpet says:

    Go Joss Go! Keep your chin up my friend 😀

  3. Christa says:

    She is a healer, Jennifer. And so are you.

    Love to all,and continued prayers for an amazing recovery.

    Christa.

    Christa Gallopoulos http://www.carryitforward.com http://www.womenheal.org

    Sent via iPhone, with all the inevitable autocorrects!

  4. Judy Frederick says:

    Such good news – she is truly an inspiration to so many people. Joss is spreading God’s message far and wide, helping others to heal. What a wonderful stories you will have to tell her as she grows up. God Bless you all!

  5. Everytime I see this beautiful child, I see God. What a miracle and what a story. You and Joss are such inspirations. Thank you so much for sharing with us.

  6. Gary Wayne says:

    She is, indeed, a wonder.

  7. Carolyn says:

    You are truly a wise and gifted woman, How God has stretched (and is stretching) your faith! Your poem was beautiful!

  8. Nonnie says:

    praise be! she really is a trooper and healer. still I will continue to pray daily for Joss.

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