Joscelyn's Journey

A Beautiful Child's Journey Through Hemimegalencephaly

Hands

on July 11, 2012
Joscelyn’s doctors have given us the heartbreaking news that she is still seizing.
She is also suffering with a fever; her body’s attempt to fight off an infection in her blood.
I can’t begin to describe how devastating this was to hear after all that we have endured to get her to this point!
Drs Lee and Baumgartner immediately set to work identifying the cause of these seizures and have discovered through Video EEG monitoring that they are due to a small area of “bad brain” which was inadvertently left behind during surgery.
Removing half a healthy brain is an enormous challenge for surgeons. It’s even more difficult when the brain belongs to a young child and is still developing. When the hemisphere is as badly damaged as Joscelyn’s left brain was, it makes the procedure even more complicated. An area of “bad brain” as small as 1 centimeter can be enough to cause seizures to recur. Even with the amazing technology available at Florida Hospital for Children, there is always a chance with hemispherectomy that a re-do may be necessary at a later date.
We knew this was a possibility going in, but we were so hoping that we wouldn’t find ourselves here again;  waiting, wondering and worrying.
It felt like such a setback, especially since we’ve been so encouraged by Joscelyn’s progress this week!  After the hemispherectomy surgery last Thursday, she recognized me, had some (albeit limited) movement on the right side of her body and immediately began charming everyone in the hospital with her still sunny disposition and adorable lop-sided smiles!
Last night, our princess was all decked out in her warrior hat, ready to head back into surgery to do battle with some bad brain!
This morning, just minutes before being wheeled back to undergo her second brain surgery in a week, she was, incredibly, still smiling.
As you can tell, she is handling all of this with perfect peace.
I am trying to follow her example.
I think the hardest part of all of this for me has been not being able to hold her! I want so much to pick her up and snuggle her against me, heartbeat against heartbeat. She is an integral part of my very being. Not being able to hold her feels like missing a limb.
I was able to sit with her in my lap for just a few minutes Monday evening when they were preparing her for another MRI and
this morning, for a few brief precious moments, I was able to hug and kiss my sleepy angel as they were getting ready to transport her back to the OR.
As I held her and my little girl melted into my arms, I thought about how easily she trusts. She knows with every fiber of her being that in my hands, she is perfectly protected, perfectly guided and perfectly loved.
If only I could do a better job of remembering that I am being held as well.
Supported by the very hands that shaped the world, I can find the same perfect peace that I see reflected in my daughter’s face. I am trying to keep the beautiful and comforting words of JJ Heller in the forefront of my mind today as I battle the helplessness and fear that rises up within me as the doctors once again take my daughter’s life into their hands.
“I have unanswered prayers.
I have trouble I wish wasn’t there.
And I have asked a thousand ways,
That You would take my pain away,
That You would take my pain away.
I am trying to understand,
How to walk this weary land.
Make straight the paths that crooked lie,
Oh Lord, before these feet of mine,
Oh Lord, before these feet of mine.
When my world is shaking,
Heaven stands!
When my heart is breaking,
I never leave Your hands!
When You walked upon the Earth,
You healed the broken, lost, and hurt.
I know You hate to see me cry.
One day You will set all things right,
Yea, one day You will set all things right.
When my world is shaking,
Heaven stands.
When my heart is breaking,
I never leave Your hands,
Your hands-
Your hands that shape the world,
Are holding me!
They hold me still.”

 

My world may be shaking right now but I know that am not facing this alone.
Like Joscelyn, I am wrapped in strong and loving arms.
His hands are holding me!
Lord, help me to trust and be still in Your hands.
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29 responses to “Hands

  1. Tiffany says:

    I love that song by JJ Heller. I have been praying for the surgeons, for Joscelyn, for you, your family…all of it this morning. My prayers are joining hundreds of thousands of prayers all over the world. God hears and has HIS hand of protection over her and this surgery. I wish I had more wise words to say but words aren’t my specialty and jokes or math geek talk don’t really fit this situation…. Love you Jennifer!

  2. giazzpet says:

    Hugs honey, stay strong – you will get through this and so will little Joss the warrior princess 😉

  3. Melissa says:

    Please know that prayers for your precious Joss, you, your family, the doctors and nurses who are entrusted to this procedure are continuously flowing from a friend of a friend. A virtual “knitted shaw” of comfort is being sent to you to hug you, comfort you and embrace you throughout this.

  4. Cynthia Greenly says:

    As you can see, God has passed that perfect peace to Joss letting you all know He is there and in control. I know Nick is with her and holding her hand in my heart, Jen. He brought with him a legion of angels to surround and protect her. You need not worry although I know being a Mom you do or you would not be a good one. And we all know you are a shining example of what a GREAT MOM is. I am so sorry I have not been on here much. I am in Alabama with Todd trying to set up housekeeping up here for him (I keep wanting to say down here but it is actually North!). My computer sucks here and they are on an old system which is slow and loses connection so much. Know I have you in my prayers. I cried as I read this this morning but I think God held them back since she is so young. He wanted to make sure only bad brain is taken; rather than move forward too fast and take that which is good. Jen, I actually ran into someone who had something very much like this. An older woman albeit but her good brain did take over and grow. Joss is going to be fine. Her smile says it all, Girlfriend. That is our Joss, ever-smiling! Keep us updated. I will get on here as much as I can to monitor the situation but you also have my number and if you feel like talking or want to vent, know I am always available for you. Love you all…kiss our little girl for me as soon as you can and when she is in your arms, give her an extra hug from me. She knows she is loved!

  5. June Silva says:

    I have been praying for all of you. Yesterday, I saw a friend who I introduced to PAt when she visited with me and she asked that I send her the information on your dear sweet baby girl so she could add her to additional prayer lists! So there you go, so many are praying at this very moment. The pictures are so sweet and I just want you to know that so many, many people care and with you at this moment! With Love!!!

  6. Nicole Hopper says:

    We are praying for you and your precious baby. I love that song and can very much relate to those words as well. We are less than two weeks away from Kingston’s surgery and all we can do is rest in the Lord’s grace that He has supplied for today. Draw on that strength that He has given you this day. Don’t worry about tomorrow because a new supply of grace will be there as well. Is there anything we can do for you? I’m only about 30 minutes from the hospital. Please let me know if you need anything at all.

  7. anna see says:

    Sending much love to you today. I am so very sorry about this setback. It just seems like too much. So glad your sweet baby girl has her lovely smile.

  8. lisa says:

    I don’t know you. But we are praying for Joss. I know Mrs. Kelli Beach though, she posted the picture of Joss on facebook

  9. Mariellen Barr in PA says:

    Your baby girls is sooooo beautiful!! I’m praying that her 2nd surgery is complete success! Thank you for your inspirational post. It’s a great reminder for all of us who call Him Father.

  10. Daryl says:

    you do not know me I got your story thru one of my friends on facebook I think Sr Deal—but praying just the same—sending hugs to all

    • Thank you so much for your prayers, Daryl! They mean so much to us!

      • Daryl says:

        no thanks needed–we have had so many that prayed for my daughter when she was pregnant with her twins–she had them 2 months early at little Claire arrives at 2#2 AND Wesley at 3#8 that was 9 months ago and prayer gave us 2 very healthy little ones –I pray that you will be able to post this message about your sweet little one one day VERY soon!! God Bless

  11. Linda S. says:

    There is great love here for you and your family is a source of great love for all. My prayers are with you and all who are contributing to Jos’s well being. With appreciation and gratitude for your healing presence and willingness to share your journey.

    • We are so appreciative of the wonderful people like you who are walking beside us on this journey and lifting us up in prayer! We are borrowing from your strength and couldn’t make it through this difficult time without you! Thank you so much for your prayers and encouragement! Blessings!

  12. Norma Ruttan says:

    My heart hurts and tears are rolling down my face. May God continue to give you strength for this.

  13. mommasylvia says:

    So sorry to hear this-Hugs and prayers!! We have been experiencing similar feelings this week!!

  14. Susan Miller says:

    Please know that we continue to pray for your family and escpecially little Joss. I am so glad to hear you leaning on God and letting him hold you. He is always there for us, we have to be open to Him. God Bless and thank you for the updates. I think of you all everyday and hope you are ok.

    • Thank you so much for your prayers and concern, Susan! We are definitely borrowing from the strength of others and are so appreciative of the love and support that is lifting our family up right now! Blessings!

  15. Martina Jones says:

    After reading your post I can’t help but sit here and just cry for your family and your precious daughter. I pray all is well and will ask my church to be praying nonstop. May God grant you courage and strength.

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