Joscelyn's Journey

A Beautiful Child's Journey Through Hemimegalencephaly

Happy (Re) Birthday!

on July 6, 2012

Two of my precious children are celebrating a birthday today, but neither are doing so in the traditional sense.

There won’t be any cake, or balloons or brightly colored wrapped packages to open, no guests or party favors or candles to blow out.

But there will be celebrating!

Yesterday, our precious 13 month old daughter Joscelyn bravely endured a marathon 14 hour radical brain surgery procedure  called a hemispherectomy. Joscelyn was born with an extremely rare congenital brain abnormality called hemimegalencephaly in which one side of her brain is larger than the other and malformed. This condition was causing her to suffer epileptic seizures which could not be controlled with medication.

Once we received her shocking diagnosis, we sought help from Pediatric Epileptologist Dr. Ki Hyeong Lee at the Epilepsy Center for Kids at the Walt Disney Pavilion at Florida Hospital for Children. Under Dr. Lee’s direction, Dr. Jim Baumgartner performed a  long, grueling and very tricky hemispherectomy operation, in which the entire diseased left hemisphere of her brain was removed.

Today, July 6th, 2012, is the first day of our daughter’s “re-birth”; the first day in what we hope and pray will be a new seizure-free life in which she will no longer be held back by the tyranny of her “bad brain” which has kept her from developing normally. We are now free to excitedly await for the right side of her brain to take over the functions of the missing left half and enable her to enjoy many of the normal activities that other babies her age are already engaging in such as crawling, cruising, walking and babbling.

But first, we have to get her well enough to begin therapy.

The medical and support staff at Florida Hospital for Children have been truly amazing! While Dr. B was performing the surgery yesterday (more on that later), they moved all of our belongings from our room on the Pediatric floor to Joscelyn’s new room in ICU. When we arrived, we found this beautiful welcome sign on the wall and an origami jellyfish hanging from the ceiling that her brother Clayton had made for her in the hospital playroom the day before. It had been hung courtesy of the hospital’s “Child Life Specialist“, Meghan,  who is trained in helping children and families adjust to the hospital experience and decrease stress and anxiety.

Meanwhile, in the OR, Dr. B was carefully and patiently dissecting her little brain. Once he felt confident that he’d gotten all of the “bad brain” removed, a huge MRI machine was brought in and Joss’ brain was thoroughly scanned for any remaining brain matter that if left connected, might lead to her continuing to have seizures post-surgery. The scan did find some remaining tissue that needed to be disconnected, so Dr. B went back in and took care of those small areas that would never have been found without the aid of the amazing medical technology found in the “InnovatOR” Suites at Florida Hospital for Children.

Dr. B said that the lobes of the left side of Joscelyn’s brain were very “weird looking”. The white matter was firmer than it should be and the gray matter just fell apart. The difficulty of the procedure, combined with her tender age, made for a long surgery during which Joscelyn needed two of the many units of blood which were so generously donated to her by many of you several weeks ago during the Blood Drive for Joscelyn.

Needless to say, the road to recovery is going to be a long one!

Joscelyn is still under sedation and on a ventilator and will remain so until the post-operative swelling goes down and they’re sure that her airway is clear. Our little warrior princess is a fighter and even while under sedation, she keeps trying to wake up and move around. I had a somewhat unreasonable fear that she might not recognize me after surgery but those fears have been put to rest. Every time she wakes up, her heartbeat and blood pressure spike from the discomfort and anxiety she feels but if I hold her hand or stroke her cheek and talk to her, she immediately calms down and falls back asleep. Her nurses tell me I’m the best kind of sedative! 🙂 We’re still waiting to see how much movement she will have on the right side of her body. Since the left brain controls the right side of the body (and vice-versa), it’s expected that she will have some degree of immobility on her right side which will have to addressed in inpatient and outpatient physical and occupational therapy sessions.

No matter what challenges we face when she comes out of anesthesia, we are enormously grateful for the hope this procedure has given us and, most especially, for the amazing outpouring of love which we have received from so many kind hearted souls, both near and far.

I spent most of the long wait during her surgery yesterday updating my Facebook page with real-time reports from the OR. The staff thoughtfully tried to assuage our fears by calling us every two hours with reports of how much progress they’d made and how Joss was handling the surgery.

Hundreds of people followed Joss’ progress from the time she was wheeled into surgery at 8am until 10:45pm that evening when she finally checked into her room in ICU. We felt the support and love of people from not only our community but from every state in the U.S. and even all over the world! Prayers and good wishes poured in from Uganda, Australia, Switzerland, Aruba, Germany, Canada, New Zealand and a host of other countries. We were enormously gratified and humbled to be at the heart of such a beautiful display of love and much of it from people we’d never even met before! Many of the encouraging comments came from our brothers and sisters in Christ, but we also received healing and light and a multitude of prayers from people with other spiritual and philosophical beliefs.

As the Dalai Lama said, “Whether one believes in a religion or not, and whether one believes in rebirth or not, there isn’t anyone who doesn’t appreciate kindness and compassion.”

Friend and author Patti Digh wrote the most beautiful post this morning about how touched she was to witness this awesome, global demonstration of the healing power of love: http://3x3x365.blogspot.com/2012/07/7512_06.html

Thank you all for joining us in celebrating our daughter’s re-birth!

Today is also a special day because it is the anniversary of  Joscelyn’s brother Nicholas’ birth; though I suppose if you define “birthday” as being the celebration of getting another year older, it’s not really his birthday either.

Nick was born on July 6, 1997 right here at Florida Hospital but we lost him in a tragic accident in November of 2011.

Today is his first birthday in heaven.

I’m trying to celebrate that rebirth too- but of course, it’s much harder.

No longer bound by his earthly body, Nick is now free to soar the heavens, explore the depths of the universe and to experience the kind of joy that the rest of us can only dream of:

“But, as it is written, “What no eye has seen, nor ear heard, nor the heart of man imagined, what God has prepared for those who love him” 1 Cor 2:9

I know that our lives are but a vapor and that the prospect of never seeing my sweet son in this lifetime is only daunting if I view the next 40 or 50 years outside of the scope of eternity.

But it still hurts.

I’m surrounded by reminders of both Nick’s birth and death here; the gift shop with blue balloons and baby booties, the playroom filled with beautiful children with bald heads and bright smiles, the all-too-familiar fear in the eyes of the family members camped out in waiting rooms and sharing tense space in the elevator with me.

I’m lonely in my mourning for him. He has a father, siblings, step-father and many friends who love and miss him- but I was his mother. He knew what my heart sounds like from the inside. I carried him within me, nursed him, taught him to read, tie his shoes, hang a spoon from his nose, love God.

I loved him all the days of his life, and he, me.

I mourn him at every stage of his being; sweet baby Nick, chubby toddler Nick, funny pre-schooler Nick, thoughtful school-aged Nick and above all, as the young man I was so very proud of and for whom, I had so many hopes and dreams.

I am grieving so deeply today!

But even in the midst of the depths of my loss, I know that there is still hope.

“This is not at all how
We thought it was supposed to be.
We had so many plans for you!
We had so many dreams!
And now you’ve gone away,
And left us with the memories of your smile.
And nothing we can say,
And nothing we can do,
Can take away the pain,
The pain of losing you, but-
We can cry with hope!
We can say goodbye with hope!
‘Cause we know our goodbye is not the end, oh no!
And we can grieve with hope,
‘Cause we believe with hope,
(There’s a place by God’s grace)
There’s a place where we’ll see your face again!
We’ll see your face again.”

Happy (Re) Birthday, Nick and Joss!

I celebrate you both today with hope!

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48 responses to “Happy (Re) Birthday!

  1. giazzpet says:

    wow Miss Jen, you are just so strong and amazing – keep your faith -your baby girl will pull through this and surprise us all

  2. I will openly admit to crying like a child while read this. These are such beautiful words and my heart aches for you and your family. You and your family are such a inspiration to what it truly means to be strong.

    Happy Birthday to Nick, Joss’ Guardian Angel
    Happy Rebirthday to Joss, here is to no more seizures and a wonderful long and happy life.

  3. Nancy Tucker says:

    While I know the road is long ahead, what a huge leap to be through the surgery… Prayers will continue of course.
    You have such a beautiful heart….what an incredible mother and person you are.
    God bless you and your wonderful family!!!
    Your sweet warrior princess is absolutely precious. ❤

  4. Tammy says:

    You amaze me. I am sure i would be a blubbering idiot in your shoes today and somehow you seem to handle yourself with grace and I know that you are an inspration to many. Happy (Re) Birthday to Joss an Nick. Sending my continued prayers for Joss and your family as you face her recovery .

  5. Marlene Buchel says:

    Oh, Jennifer – My heart hurts for you, especially today. Your post is beautiful!

  6. I found this explanation of the Jellyfish as a Native Animal Totem. Seems apropos. “Jellyfish’s medicine includes – sensitivity to water energy (emotions), understanding of the value of floating rather than swimming through trying emotional times, proper use of softness (not being rigid), ability to become untangled from the webs of peril in life, acceptance and faith”

    Thanks for sharing your journey, Thinking of all of you and sending much love –

  7. chateaunorge says:

    What a beautiful testimony to a Mother’s Love. So glad to hear that Joselyn made it through surgery yesterday and that such care was taken to get all of the defective brain out. We continue to pray for healing and response so that Joselyn can have a productive life. Blessings to you as you move through this.

  8. chateaunorge says:

    Waht is your Facebook address? I would like to follow Joselyn’s recovery.

  9. shannon says:

    Jennifer , YOU are truly an inspriation ! Thank you .
    Prayers will continue and God will carry you through .

  10. Norma Ruttan says:

    I am amazed; you must have such wonderful faith. Joscelyn looks remarkable serene even though she has tubes coming out of her. Prayers will continue. God bless those surgeons.

  11. Stephanie says:

    Happy (Re) Birthday Joss and Nick! I watched the video explaining what a person with half a brain can do. What an amazing God we have! I am praying for Joss and the rest of the family during time of recovery.

  12. Lendi says:

    You are truly an amazing woman and mommy!!! I cant begin to imagine what you are going through today or even the months leading up to today! My family and i have been praying for u since the loss of Nick and even more since we heard about Joss condition. I am truly blessed to say i know u. We will continue to pray for you guys. We know how awesome our God is and u guys are surely in his hands.

  13. “He knew what my heart sounds like from the inside.” I’ve read no more beautiful or distinctive description of the unique bond between mother and child anywhere. My prayers go out to you and your family, including your beloved Nick. Happy birthday, children. Your parents are amazing people.

  14. I do not know you or your family, but am a friend of Lisa V. and she passed this onto me. My prayers will be with you and your family and know the Lord has and will use Joscelyn’s challenge and you to touch others lives, through reading your faith and strength, the different beliefs that have been with you all in prayers and thoughts to show us not to be predujice to these differences, but to see love and compassion most important.
    I have a daughter and a son, and when I read about Nick, tears were pouring down my face. He is his little sisters guardian and prayer warrior for her. I am sorry for all you have gone through, but know the Lord shows His love in you by knowing your strength and what He needed to do through you for others to be reached. What people will come to know the Lord through this; through you.
    Thank you for sharing these difficult life challenges and sorrow you have had to experience, knowing, while sharing, how hard that had to have been. My heart is with you and even in not knowing you, I wished I could. Prayers continued and will follow the progress of Jos’s healing. The Lord can heal the sick, bring sight back to the blind, make a lame man walk, and heal someone of leprosy….He can and WILL heal your little one and through what she will have to go through for this time in her healing process, the Lord will use her to reach others only she could touch. Warmly, Susan H.

  15. Pam says:

    As are many of us who have read this post, I am crying (again). You have been on such a roller coaster ride of emotions this past year. How marvelous that you have sustaining faith in Christ to carry you through. And HE WILL continue to carry you throughout the days to come, while you watch your precious Joss begin her life anew. Yes, you have two precious children starting life anew…one in heaven where there can never be anymore pain or sorrow or sad farewells, and one here who will now begin to experience life at its fullest…we claim that by faith.
    I woke up several times last night and prayed for you all. My own youngest son (age 35), was traveling home today via airplane, and I was awake praying for him as well, as he is trying to start his life anew. New beginnings…new hopes…and faith renewed….one day at a time…
    Thank you again for being so open with us. We feel we are walking this journey with you, and it is a beautiful journey. God bless you all. Pam

  16. Becca Micucci says:

    I just wanted to add to the outpouring of well-wishes for your family. What an inspiration you all are. Best of luck with Joss’s recovery.

  17. Laine says:

    Just learned of your journey today…I have cried, laughed, and learned reading your entries. Your family is in my prayers. Thank you for sharing your story with eloquence, strength, and hope. Joss is an absolute beauty…I will continue to follow your journey and pray for the health of your sweet baby girl.

  18. I have been waiting on pins and needles all day for an update since we don’t have a facebook account! Praying always for your precious family!

  19. Jo Ann Nix says:

    All I can say is WOW!! What an amazing and God loving woman you are. You are such an inspiration. I have been praying for your family since Nick’s accident and following what all you have had to endure since. I am a friend of Debbie’s and hope to meet you in person. My prayers will continue for you and your family. May God hold all of you in the palm of His hands.

  20. As I read this today I laughed and I cried……but it left me overflowing with immense HOPE! Thank you for sharing your heart on this very special and difficult day.

  21. Jennifer Hamman says:

    There are only two ways to live your life. As if nothing is a miracle or that everything is a miracle. Albert Einstein My prayers are with you, your family and your sweet baby girl

  22. mommasylvia says:

    Praying, Praying, praying!! For you and the precious cherub! I can’t imagine the magnitude of what your are feeling, thinking, and going through!

  23. Stacey Grondin says:

    I want to thank you for sharing your story & putting the little things in life back into prespective for me. I will forever be praying for you & your family. You are an inspiration to all mothers out there.

    Matthew 5:4
    Blessed are those who mourn, for they will be comforted.

  24. Cynthia Greenly says:

    Dearest Jen:

    As you will see from my posts, I am just catching up. My heart aches for you but yet smiles for you at the same time.

    You see, you are able to write these things and catalog them for Joss to read at some later date. Yes, Jen, she will be able to read one day and understand the pain, fear and heartache you went through to make her a whole person. She will understand how much her big brother, Nick, loved her.

    There are not too many people who have the opportunity to write and write so beautifully at that. I can feel your raw emotion and this is why I ache.

    Yet in the raw emotion I feel your courage and strength, and that is why I smile for you. Keep on letting it all out like this because keeping a journal is good medicine. But you are definitely making an impact on your daughter’s life as well with it.

    I envy your strength, courage and love.

    Cynthia

    • Thank you, Cynthia! Your daughter is in my thoughts, so often! I’m glad to know that my story is helping her, even if only in a small way, to know that she is not alone. Thank you for walking beside us on this journey! Hugs!

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