Joscelyn's Journey

A Beautiful Child's Journey Through Hemimegalencephaly


on July 20, 2012

My view to the world for the last few weeks has been through a large window that overlooks Florida Hospital for Children‘s main entrance. Day and night, cars come and go; loading and unloading patients and visitors.

I watch them from the confines of my small but comfortable room as they get out of their cars and wrestle with suitcases, flower arrangements, wheelchairs and balloons. 

Day after day, the vehicles arrive; as varied in size, shape and color as their occupants.

 Some even arrive by limo.

I can always tell which ones are here to visit the new mommies and babies.  They are jovial, expectant. The hospital is a happy place for them, full of promise and new life.

But there are others, too.

You can recognize them by the slump of their shoulders and by the fatigue and resignation behind their eyes. This isn’t their first trip here and it probably won’t be their last.

For them, the hospital is a gray, sad place; they move through the halls and lobby robotically, tracing and retracing their steps from their loved one’s room to the elevator, to the parking garage and then back again; day after day.

Lately, I’ve found myself focusing more on the ones who are leaving the hospital.

Some, like us, have found healing in this place and are now joyfully returning to their regular lives.

Some are the new mommies and daddies that arrived just a day or two before and now appear somewhat intimidated at the prospect of being completely and solely responsible for the care and maintenance of a tiny, helpless seven pound human being.

It’s easy for me to envious of those who are going home while I sit here still wrestling with loneliness, lukewarm showers and monotonous dining options.

But then I remind myself that some of those who are leaving the hospital are doing so still in search of healing. When they get in their cars, it will be to drive to clinics that specialize in their particular disorders or to Hospice facilities that address the needs of the terminally ill.

And some…I try not to think about them at all, but sometimes I can’t stop myself; some I know, have just said goodbye to a loved one for the last time and are making that same long, surreal walk to their car that I made last November. They are struggling to understand what has just taken place, how life can possibly still be going on all around them when life as they knew it is no more.

Life and death.

Hope and grief.

I see it all from my window.

I wonder about the person who had my room before me.

Did they see me when I arrived? Could they see the anxiety mixed with hope written on my face as Michael and I wrestled with our suitcases and carefully extracted our little girl from her carseat to be handed over to people who were virtual strangers to us but who promised to fix her if we allowed them to break her in the most radical way possible first?

If all goes as planned, we will be among the lucky ones going home next week.

I’m thrilled by that possibility!

But I don’t want to leave this place, not just this physical place, but this spiritual and emotional place- without remembering and paying respect to the transformative events that have so greatly altered each of us since our arrival.

Joss is making a remarkable recovery from her two-part hemispherectomy procedure, though she has been having some trouble eliminating all of the excess cerebrospinal fluid that her body has produced post-surgery. To prevent this fluid from building up inside of her skull and putting pressure on her brain (a dangerous condition called hydrocephalus) her doctors scheduled her to have a permanent shunt, or drain, surgically inserted on Monday which will divert the excess fluid from her head into her stomach cavity.  As soon as they’d made the decision to go forward with the surgery however, Joscelyn began processing the fluid more effectively! Dr. Lee informed us today that if her drainage and swelling continue to lessen over the weekend, we might be able to avoid the need for a shunt! (Even if she should she end up with one however, it’s still a small price to pay for a lifetime free of debilitating seizures.)

Joscelyn’s transformation since our arrival is easy to define:

She arrived here seizing and debilitated.

She will leave here seizure-free and capable of anything!

The transformation that has taken place within me is a bit harder to put into words.

 I arrived here tormented with fears!

Would she survive the surgery?

Would she retain her motor functions, speech and memories?

Would she recognize us?

Would she look or act differently?

I was not only afraid of losing my baby physically, I was afraid of losing her essentially; of losing the essence of who she was.
One of the greatest joys of the last week has been watching my little girl’s sparkling personality return!

When Joss was born, she was continually kicking the hospital ID band off of her tiny ankle and losing it in her crib. The nurses jokingly referred to her as “Houdini”. Now, over a year later, she is back in the hospital again and has found a way to wiggle out of the restraint doctors placed on her left arm to keep her from putting her chubby little fingers onto her still-healing incision.

Once again, the nurses are calling her Houdini! 🙂

I snapped this picture of her just moments after she had not only wiggled out of her arm restraint for the third time in an hour but also kicked off her oxygen monitor, causing the nurses to come running.

Doesn’t she look proud of herself? 😉

With every passing day, we see more of that familiar mischievous twinkle in her eye, more of her indomitable “warrior princess” spirit and more of those beautiful lopsided grins!

Actually, as her motor skills increase, we’re noticing that her smile is becoming more symmetrical! Since the left side of the brain controls the right side of the body and the left side of Joss’ brain is now basically “gone” as far as her body is concerned, all of the muscles on the right side of her body are weaker than on the left. The extent of this weakness varies from person to person after a hemispherectomy but in Joss’ case, it seems fairly mild. She is already recovering the use of her right arm and leg. Today, we were all very excited to see that she was raising her right arm all by herself!

It’s long been said that the eyes are the window to the soul.

When I arrived at this place, I saw the world through eyes that were dimmed by pain and loss. My heart and soul were wounded- and while I still had hope, it glimmered only faintly.

When I leave here, my window to the world will be much less clouded.

Because this time,

this time, instead of loss, there was healing!

Beautiful, glorious, victorious healing!

Perhaps, on the day when we leave this place, someone will be watching us from their window.

If so, I pray that the sight of two very happy and incredibly relieved parents, lovingly carrying their beautiful baby girl with her adorable lopsided grin as they make their way to their car trailing balloons, flowers and suitcases gives them hope.

Miracles still happen.

God is still in the business of healing.


37 responses to “Windows

  1. Tina Miller says:

    I noticed she is using both cheeks to smile too 🙂 This is great Jen. Praying for an even quicker healing and no shunt needed and so thankful for the blessings you have already received. ❤

  2. Stacey Grondin says:

    Your such an amazing writter. Your blogs are always so beautifully written. As I read your blogs with tears rolling down my face I cant help but think of how you perfectly worded a mothers love for her child on numerous occasions. As a mother, I’ve always said that a mothers love is undescribable. Reading your blogs proves me wrong. You define the word MOM!! Your love is unconditional & you show this day in & day out. Your story has been such a blessing because reading your words have put into perspective the kind of mother I will forever strive to be. You are one of the strongest women I have ever encountered. God has such a special plan for you beautiful angel baby Joscelyn. He proves this daily! I will continue my prayers for healing & happiness for your family. God Bless xoxoxo

  3. Susan Young says:

    Your writings have taken me back in time…back to January 1995 when I, too, sat at a window at Florida Hospital after our, then 11 year old daughter, Alison, lay after surgery to repair an AVM which had burst in the middle of the night causing a massive stroke. Finding her unresponsive one morning started our journey through two brain surgeries and months of rehab. I remember the uncertainty of how she would heal. Her life had been saved by a skillful surgeon but we had to wait patiently to find out if our daughter would return to us – that essence you spoke of. We had an answer one day when Ali, still intubated and not able to speak, was given a pencil and paper by one of her nurses…she wrote “I (heart) you”. After all of us dissolved into tears, including the nurses, we realized she was back and we knew we could handle any physical problems she would have to deal with. Even though it’s been so many years ago, thinking of that time still chokes me up. Ali went on to become a beautiful young woman who is about to turn 29 next week. Seeing Joss’ smile makes you just know she’ll be just fine.

    Thanks for sharing and hope you’re home soon.
    Susan Young

  4. evsmith07 says:

    Reblogged this on Xavier's Butterfly and commented:
    Love this family and amazing baby girl ❤

  5. Stephanie says:

    Love this! Thanks for sharing Joss’s story. I am so happy for all of you!

  6. Lori labree says:

    As I read these words that you wrote I feel your pain and sorrow but also your joy of whats to come in life of your beautiful, precious, adorable little princess! This little life is a beautiful testimony that there is a God a healer and he stll has a work to do in her and you! I cant wait to see what God has in store for all of you! You have touched so many with this beautiful story of love and hope ! God bless you all! Keep believing!

  7. Marsha Edens says:

    So, so thrilled to here of ya’lls progress. I so remember those days that u described. I remember the day we took Isaac in for his hemi, We wanted to grab him and run and never stop running bc although we knew that surgery could help, we didn’t know what would happen if surgery didn’t help or if we would get our baby back. I am so blessed that this journey is taking a great turn for you guys. If u get a chance to download my book from my page, u should check it out. I think u will be amazed at how many feeling u and I share. Maybe one day we will get to meet “face to face” at our hemi reunions. Just curious, you mentioned Dr Lee. A Dr Lee did isaac’s surgery in georgia, but he moved around 2009, I wonder if that’s the same doctor that did isaacs. His first name was Mark? Do u know his first name? His was so amazing as a neurosurgeon, just curious. Keep us updated! Hemi hugs to you guys!

  8. Cynthia Greenly says:

    I told you I would continue to pray God allow her not to need the shunt. This is wonderful, wonderful news. She is such a cutie with her lopsided smile but it actually seems less pronounced or is it just me hoping and praying or an optical illusion? Whatever it is, you have a beautiful baby girl to take home very soon who is going to lead a full life. Continuing to pray for all of you. Joss, you go girl…you have showed us you have the strength of a warrior princess. However, it must be because you are the offspring of a warrior queen and king. They have shown the world their superhuman strength time and time again in the face of adversity!

  9. Darla Martin says:

    Joss is a beautiful baby and you are an incredible mom! Her smile is so precious. I am a mom of twins who came into this world way too early at 26 weeks. They both suffered bleeding in the brain and had shunts put in as soon as they reached 4 lbs. No one thought they would make it 24 hours, but I have been incredibly blessed. Even though they both ended up disabled they are my miracles. My precious son lived 15 yrs, 15 mths and 17 days. The 4 yr anniversary of him going to Heaven is now only 12 days away. His twin lil sis (by 1 minute) is 19. I know you’ve joined the club that no one wants to be a member of-you lost your son Nick. I just wanted you to know that your family is in my prayers. I truly hope and pray that you get to go home next week and enjoy every second of loving your “new” baby!!

    • Thank you for sharing your story with me Darla! What a difficult journey you have walked! I’m so very sorry for the loss of your son. We are so grateful for your encouragement and support! Much love to you!

  10. Maria says:

    Again true to form, Jennifer, your words deeply inspire! ❤

  11. Joss may well teach us all new things about our brains. She may show us that what really rules the animation that each of us has does not even reside in our heads or our bodies! We will be watching and learning…

    • Thank you, Kathryn! We are excited and encouraged by her progress and believe that she will continue to be an inspiration to many! We are blessed to have you beside us on this journey! Hugs!

  12. Frankie Powers says:

    Your account of your journey so far is incredibly eloquent! Thank you for sharing so that we can continue to be aware of Joscelyn’s recovery and your journey of healing and recovery as well.
    I am in awe of God’s grace! Continued prayers to you and your warrior family!

  13. Lynne says:

    I was at the main FL Hospital last week, with a group of co-workers visiting another co-worker who had been admitted. I looked up at the Children’s Hospital, knowing you all were there somewhere – praying, loving, healing – and sent some love your way. Such a gift to remember the connectedness of life – so grateful for all God is doing in and through your daughter and your family!

  14. Norma Ruttan says:

    amazing progress already!

  15. mommasylvia says:

    The baby looks great and you sound very hopeful! I am so glad that things are moving forward and healing is happening. God bless! Will continue praying!

  16. Kelly Warren says:

    Beautiful post, Jennifer. Keeping you, Joss and the rest of your family in my prayers as she, and you all, continue to heal.

  17. pattly kettelhut says:

    Your post brought back so many memories from my son’s hemi over three years ago. I am sorry for your loss and thankful for your babies “new ” life post hemi. You are a very talented writer who captured in words what so many of us feel in our hearts. We will continue to pray for you all. God bless, Patty

  18. Karen says:

    amazing how such small milestones, make an amazing difference! Her smile IS straighter and it is fabulous! that she is moving her right arm!! I have been a nurse for 15 years now and have always tried to convey to loved ones the importance of small steps forward. 2 forward, 1 back is still progress… and slow and steady wins the race. I am so happy for Joscelyn’s progress and continued to be humbled your words and your heart.
    Thank you for sharing.

    • Thank YOU for your encouragement, Karen! We will celebrate (and certainly videotape!) every milestone, no matter how insignificant it may seem to others. Thank you for walking beside us on this journey! Hugs!

  19. Andrea says:

    Yes indeed, our amazing God is still in the business of working miracles – whether in a hospital ward or within our beating hearts. Always praying ~ Always hoping ~ Always believing with you!

  20. Mariellen Barr in PA says:


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