Joscelyn's Journey

A Beautiful Child's Journey Through Hemimegalencephaly

Happily Ever After

on May 16, 2013

Next week marks the one year anniversary of Joscelyn’s diagnosis of hemimegalencephaly.

At the time, I was in the midst of planning a “Teddy Bear Picnic” party at the park for her first birthday. The day before the party, we received the call that the results from the MRI Joss had undergone earlier in the week were “extremely abnormal” and the doctor wanted to see us in his office “as soon as possible”.

The 45 minute drive to the doctor’s office was one of the quietest I’d ever shared with my husband. Both of us were thinking “brain tumor”. Neither of us considered for a moment that our daughter’s brain had been malformed since approximately 3 weeks gestation and that she suffered with a condition that would cause her to lose one hemisphere of her brain.

The words barely had time to register in our minds that Friday. 

“Hemimegalencephaly”…

“Surgery might be an option”….

We considered cancelling her birthday party and spending the weekend trying to make some kind of sense of what we’d just been told.

“She may never walk.”…

“Or talk.”….

“She’ll likely end up severely disabled and may not even recognize you as her parents.”

And as if those possibilities weren’t chilling enough,

“Her lifespan might be cut short.”

Six months after losing my 14 year old son Nicholas in an accident, the doctors were telling me that my baby girl might not be destined to live a full life either.

Despite the news, we decided to go on with Joscelyn’s party. Honestly, I didn’t know how many birthdays we were going to get to celebrate with her.

The invitations had already been sent:

invitation

I’d spent hours making handmade themed decorations:

placemats

We’d ordered the most adorable cupcakes:

cupcakes

And on that day, our friends came to help us celebrate.  We even had teddy bears picnicking with us:

teddy

We smiled for the pictures and tried not to burden everyone with our grief but as soon as the cameras were turned off, the tears would flow. I had to excuse myself at one point to go hide in my car and just sob.

Michael could barely manage a smile even for the cameras:

daddy

On what should have been a beautiful day filled with laughter and celebration, all we could do was cry. We were overwhelmed with grief and with fear for what the future might hold for our little girl.

We knew what was wrong with her but we had no idea (yet) how to fix it.

Joss’ seizures at that time were often severe and they left her exhausted afterwards.

In the year that has passed since her diagnosis, I’ve almost forgotten how intense these episodes were. It breaks my heart to watch these videos now, to see the pain and fear in her eyes and to remember the helplessness I felt as she endured one wracking seizure after another and all I could do was hold her as she shook. 

When the doctors at Florida Hospital for Children and the Epilepsy Center for Kids told us that Joscelyn was a candidate for hemispherectomy, we were actually relieved! Some hope, any hope, is better than no hope at all.

It took a total of 5 surgeries over the course of 7 months to stop Joscelyn’s seizures but since her last surgery on February 27th of this year, she has remained seizure-free. 

The road ahead is long. Joscelyn still has a lot of catching up to do with her peers. 

But we have something now that we didn’t have a year ago…

Hope.

For Joscelyn’s birthday pictures this year, we dressed her as a fairy. This Sunday, we’re taking her to Walt Disney World, the most magical place on earth, to celebrate her second birthday.

Hans Christian Anderson once said that “Every man’s life is a fairy tale written by God‘s fingers.”  Until just recently, it felt more like Joscelyn’s story had been written by the Brothers Grimm than God; the first few chapters of her life have been filled with so much darkness, sickness and fear.

I’m too old to believe in fairy tales and I know that “happily ever after” is a bit much to ask for-

But “seizure-free ever after”? Well, that’s looking more and more like a distinct possibility.

And that’s close enough to “happily after ever” for us!

joss

joss3

joss2

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20 responses to “Happily Ever After

  1. Rosemarie Graham says:

    Beautiful story and beautiful girl!!!!

  2. talbottr says:

    Oh, Jen, you move me so. Little Jossybean has come so far and is such a blessing in my life. I know that God had a hand in my choice that day almost a year ago to read your blog and to fall in love with your baby girl–and you. I think I read that post a dozen times and then zipped back to read from the beginning. I will always cherish your sharing of deeply stirring and soul-touching portions of your life and I thank God for FB, otherwise I wouldn’t know either one of you. xoxo

    • We’re so grateful for your faithful support and encouragement, Robyn! We never could have made it through the last year without the love, prayers and encouragement of so many wonderful people like you! You are a blessing in our lives as well! XOXO

  3. Steve Lowe says:

    I think you know how much Joscelyn story has helped me thru some very rough times. Seeing her progress and your wonderful attitude with all you’ve been thru and all you will have to go thru is an inspiration to me and many others.You and Joss are a little bit of light in the dark world in which I find myself. I hope and pray that Joss will continue to improve and you can have a more normal life without the anxiety and uncertainty that you have now.But no matter how far Joss gets in life I know she has the best support she could ever have and all the love she can handle.Love and Prayers to you and Joss and the rest of your beautiful family.

    • Thank you so much, Steve! Your support and prayers mean the world to us! We are so grateful to have you walking beside us on this journey. We think of you and pray for you often! Much love to you!

  4. Lisa Melton says:

    Just awesome…your journey and your journalism. I am blessed to know you, and I am not sure which amazes me most…how the human brain…Joss’ in particular, with the intervention of surgery and technology has done a 360 and she is mastering things at a break necking pace at last…catching up after a year of tumultuous events. Or, how love and prayer and hope have proven there can be victory, that there is a rainbow after the storm. And now I am singing “Over the Rainbow” every day in my prayers for you and Joss and your family with a new zest for this life on earth. I love you girl, your happiness is mine as well!

    • Thank you, Sweet Friend! We are so grateful for your love, prayers and faithful friendship! You have a beautiful way of encouraging others and I am blessed to have you in my life! I love you too!

  5. Mariellen Barr in PA says:

    I’m like all the rest who are moved by this post-thank you! I’m so grateful that you share this journey with us. I’ll continue to pray for seizure-free ever after! Those pics are so great!

  6. Maria Slaby says:

    Feeling so much peace and love for you, Joscelyn and your beautiful family. You’ve managed to gracefully careen more than a lifetime of challenges in a short 18 months. You have shown that happily-ever-after is a state of being meant to embrace, regardless the obstacles. ❤

  7. Alma says:

    I have followed your Journey and I have to tell you that those photo’s of Joss’ 2nd B-day are priceless. She has really come a long way. God Bless all of you. Just remember that you are loved and prayed for everyday. Joss is truly a blessing.

  8. MARLA APPEL says:

    What a beautiful litle girl you have. SHe is an inspiration to so many. Hope to get many more fairy tales with happy endings from you.

  9. Nonnie says:

    What a vast difference from a year ago, praise God! She looks adorable in these wonderful images. I continue to pray for her daily; I had lost track of when I first was informed by Patti Digh of Joscelyn and you, her parents.

  10. Carolyn says:

    God has held you all in his loving arms during the unfathomable stress of this past year. When I look at your fairy princess, I can only shout, “Praise God from Whom ALL Blessings Flow.” Carolyn

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