Joscelyn's Journey

A Beautiful Child's Journey Through Hemimegalencephaly

Independence Day

on July 4, 2012

Today is Independence Day.

 All over the country, people will be celebrating our country’s freedom from tyranny and oppression with parades, cookouts and fireworks. Our family will be celebrating the Fourth of July in the hospital this year, observing an “Independence Day” of our own; a day in which we declare independence from the tyranny and oppression of intractable epileptic seizures.

 Joscelyn is entering her third day of pre-op testing. A brain scan earlier in the week indicated that she had little metabolic function in the majority of the left hemisphere of her brain. Doctors have captured and recorded several of her epileptic seizures via Video EEG monitoring. This data, combined with further testing, will help them determine the exact areas in the brain from which her seizures are originating. Tomorrow, she is scheduled to undergo a hemispherectomy procedure where she will have most, if not all of the left side of her brain surgically removed in order to stop her seizures and to give her the best chance of having a normal life.

Everyone in the Pediatric Unit at Florida Hospital for Children has been wonderful! Joscelyn liked her new room in the Walt Disney Pavilion immediately!

I can tell that she misses being home but she’s enjoying playing with new toys and making new friends.

There are wonderful people here who come by to entertain the tiny warriors on this floor, those who are small of stature but brave of heart, fighting for their own independence from a variety of life-threatening illnesses.

Yesterday, a talented musician named Albert came to Joscelyn’s room to sing her to sleep with a sweet lullaby.

It’s heartbreaking for us to see her this way, bandaged and hooked up to machines; so tiny and vulnerable!

 Epilepsy is a cruel master! It cannot be reasoned with. It strikes at whim; attacking Joscelyn’s brain, delaying her normal cognitive and physical development and threatening her life.

 We find these conditions intolerable and demand to be freed from them!

We know that the fight for independence from the debilitating seizures she has been suffering with will be a long, hard battle. We are facing a lengthy hospital stay and years of outpatient therapy, but we are inspired by the example of our Founding Fathers who didn’t wait to assert their independence from Britain until the fight was over. Instead, they used their Declaration of Independence as a rallying cry for the soldiers who then fought in the name of that freedom- and ultimately found themselves in possession of it seven years later.

Like those brave soldiers, and like the characters in the 1996 sci-fi disaster film, “Independence Day”, we claim the following on behalf of our little girl:

 “We’re fighting for our right to live, to exist…We will not go quietly into the night! We will not vanish without a fight! We’re going to live on!

We’re going to survive!

 Today, we celebrate our Independence Day!”

 

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46 responses to “Independence Day

  1. Tiffany says:

    I feel like waving a flag or something. :0) You’ve gotten me all patriotic against epilepsy. Lots and lots of prayers for you tomorrow and for the doctors and nurses and for Joscelyn of course.

    • Thank you, sweet friend!

    • ellen tumavicus says:

      What an amazing story. My daughter had several seizures as a baby and a toddler, then absence seizures; she has finally grown out of them, but your description of the unpredictable and tyrannical hold seizures take on a child and a family really resonates with me. Best of luck,and I’d love to hear how your story continues, and how your beautiful little girl blossoms with her freedom from epilepsy.

  2. June Silva says:

    Have been holding you all in prayer and thought! I am so glad, that under the circumstances, you are in a wonderful environment and she looks so comfy! Will be continuing to pray and look forward to all good news! As I told a friend last year, who was undergoing major surgery and was scared, try to hold it in your heart, that this time next week, the surgery will be behind you and the recovery will be positive! I know that may be difficult to comprehend, but know that we are all with you!!! Love and Hugs!! Forwarding this on to several Very Strong Prayer Groups!@!

  3. Claiming Independence for this baby right now in the name of Jesus !! Yes lord set Joscelyn free of all pain . Amen

  4. Ronda says:

    Prayers for you and the family. God will watch over her and surround her with his angels. He will hold her hand throughout the surg and the long road to recovery. God bless all the drs and nurses and therapists involved in her surg and aftercare.
    It is in Gods hands and we have to have faith in Him.

  5. Billie Jo says:

    Praying for Baby Joscelyn and you all. Praying God will heal her, you all are in our prayers!

  6. Connie says:

    Praying for all of you! Hugs & Kisses to all! “If God brings you to it-He will see you through it.”
    Aunt Connie

  7. I am praying for a successful surgery and the skill of the doctors, May Joselyn be Independently released from this life of bondage and as you live this out by her side, may you experience God’s peace. Know that this trial, you are ministering to many. Fight for life. Linda Nerstad (Incline Village, NV)

  8. Cynthia Greenly says:

    Looks like God sent his legion of angels already with Big Brother Nick in the lead. She looks cozy and ok. There is that perpetual smile on her face. 🙂

    I am sure in my heart all will go well for her tomorrow. Knit your heart out, my dear Jen! The repetitive task will keep you from pacing while our little beautiful Joss is being operated on. I honestly have a sense of peace in me for this upcoming surgery for her and no anticipation of anything. We already got good news since we know a small portion of the bad part of her brain is working. Thank God for small blessings! Continue your rally for independence and know my prayers and thoughts are with all of you. If you need anything at all, I am only a phone call away.

    Heavenly Father, surround this little darling in your arms and keep her safe and sound during the operation. Give her parents and family a peace that surpasses all understanding. Let them be relaxed and fearless while your guide her surgeon’s hands to fix her problem and get rid of the epilepsy. In Your Son’s name I pray. Amen.

  9. JulHartman says:

    Praying In Jesus’ name for your family, sweet baby girl, and surgery/surgeons. Jeremiah 29:11(NIV)

  10. lita waters says:

    I pray for baby Joscelyn every night. I continue to pray for you and the doctor’s and nurses that are caring for her. I pray for their faith and that they look to God for the strength that they need to make the correct decisions when it comes to Joscelyn and all of her warrior friends. I pray for your continued strength on your journey.

  11. Cyndi says:

    I found about about your daughter from a friend of a friend. My son had a hemisphrectomy almost 4 years ago. As scary as it was to face the surgery I can tell you our life hasn’t been the same sense but in a good way. He amazes me everyday. Getting rid of the seizures made a world of difference. I will keep your family in my thoughts, please feel free to contact me with any questions.

  12. Kelsey Ploss says:

    praying with all my heart that everything will be fine and Joss will gain her true independance the dear warrior princess deserves it.

  13. I have been following your posts about your beautiful daughter. Joscelyn and your family have been in my thoughts and prayers. My infant son, who is our 5th child, was just released a couple of weeks ago from Florida Hospital for Children’s NICU after 115 days, 2 surgeries and many scary moments when we thought we might lose him. I can totally relate to your pain of seeing your child hooked up to tubes and machines. But I truly believe the Walt Disney Pavillion is full of angels both unseen and in the flesh in the doctors and nurses and you have many strangers praying and sending positive thoughts your way. I will be praying for God to send his strength to Joscelyn and your family tomorrow as well as the many days ahead.

    • Thank you for sharing your story with me, Jennifer! What a wonderful testimony to the quality and character of the caregivers here at Florida Hospital! Everyone that we’ve encountered has been very warm and caring. I’m so sorry for the trauma you have had to endure with your son and pray that he is doing well! You and your family will be in my thoughts and prayers! Hugs!

  14. Nichole Peterson says:

    Prayers are making their way across the internet via friends of friends of friends… I am sending good energy and love to you and your beautiful daughter, from Seattle.

  15. Dearest family:

    I, too, feel that Joscelyn is going through something like whacking the vines out of the jungle. I feel certain, at peace, and happy that such a dire-sounding diagnosis has turned into such a good prognosis.

    That baby girl is ALL there.

    And we, who comment here or not, are all here with you.

    Hold her little hand, kiss it as you walk down the hall with her…be with her as many minutes as you can, asleep or awake. You have a precious gift, and almost as precious as that is your vision of healing, and your asking for our support.

    Sleep well, dears. I hope you already are. Your son’s spirit is nearby. I send your embraces for all that.

    • Thank you so very much for your kind and wise words of support! We are so grateful for the precious gift we have been given in Joscelyn and are excited to watch her reach her full potential after this procedure! Blessings!

  16. giazzpet says:

    I wish you and your family strength and love for this time – shoot, you should have some of the Ren Performers from Lady of the Lakes join in with the music 😀 – ooh, that could be a nice thing – add a $ to your ticket to help support children with this awful disease or research to help. Just a thought – stay strong!

  17. Letty-Ann says:

    Praying for your baby girl’s total and complete healing. I am also praying for peace for you guys as parents. Peace in your decision and peace in the road to come for her recovery…which I claim in Jesus’s name! I’ll spread the word in Tallahassee!

  18. Fiona (from England) says:

    Prayers and Pixie Dust for your beautiful Joscelyn x x x

  19. JO says:

    We too are going through surgical Evals- VEEG, MRI, PET, MEG and fMRI all complete. Now we wait to see what functions are closest to the dysplasia and determine if surgery is an option. But we too hope for freedom from the despair and agony of daily seizures. Warmth and best wishes to your family and your medical team!

  20. Pam Coco says:

    Praying for your precious girl! Praying for peace for you! And guidance for the doctors! (((hugs)))

  21. Sherri H. says:

    I just came across your story on Facebook. While I cannot relate to what you are going through with your daughter’s illness, I can tell you that I had both of my boys in my 40’s (41 and 44). It was very scary and I worried all the time that something might go wrong. They are almost 2 and 5. The lord has blessed us. I believe he has blessed you with a beautiful daughter who has wonderful strong parents! I will pray for her and for the people who are caring for her. I pray the lord continues to give you and your husband strength. God bless you!

    • Thank you so much, Sherri! I’m sure that your precious boys keep you busy! My 3rd and 4th boys were born 15 months apart. (They’re 9 and almost 11 now) I remember that first three years after they were born were just a blur of activity! Thank you so much for your prayers! We appreciate them more than we can express! Blessings!

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