Joscelyn's Journey

A Beautiful Child's Journey Through Hemimegalencephaly

A Fool’s Hope

on February 27, 2013

“You ever had one of those wars where everything goes wrong?”-Hawkeye, M*A*S*H

 When I began this blog, we hoped that our war with epilepsy, which began when Joscelyn had her first seizure at two months of age, would come to an abrupt and happy end when she underwent a hemispherectomy procedure in July of 2012. Instead, we find ourselves seven months out from that first surgery and still very much in the trenches.

Some wars have been fought and won in less in a matter of minutes. The Anglo-Zanzibar War between the United Kingdom and the Zanzibar Sultanate, for instance, lasted only 38 minutes!

 In contrast, the longest war ever recorded in the annals of history was the “Three Hundred and Thirty Five Years’ War between the inhabitants of the Netherlands and the Isles of Scilly off the southwest coast of Great Britain.

 335 years!

 We haven’t been at war with epilepsy that long,

 But it does feel like it sometimes.

 Shortly after Valentines Day, not long after I posted all of those adorable pictures of our healthy, happy, then seizure-free little girl, Joscelyn’s seizures returned with a vengeance.

 We knew this was a possibility, a likelihood in fact- but we were devastated by their reappearance, nonetheless. The first seizure happened overnight. At first I tried to convince myself that she’d merely had a bad dream or a night terror but then the seizures began to increase in frequency and intensity; first one a day, then 2 a day and then last Friday, 8 in one day.

 After having consulted with Joscelyn’s doctors in January and getting a second (and third) opinion, we knew that the most likely cause of her seizure recurrence was a small remnant of malformed brain tissue on her left hemisphere. Doctors did not remove that bit of tissue in the initial hemispherectomy surgery because its proximity to her hypothalamus made doing so risky. Now, we were faced with the dilemma of either  putting her through yet another surgery to try to remove it or instead, directing her epileptologist to experiment with ever increasing dosages and combinations of anti-seizure medications, all the while knowing that seizures stemming from hemimegalencephaly are often intractable and can rarely be controlled with medication.

 When we initially agreed in June of 2012 to have half of our daughter’s brain effectively removed, we did so with all of the fervor and confidence of new military recruits eager to engage and defeat the enemy. Backed by the support and prayers of thousands, we marched boldly into the fray to vanquish our imposing but still-very-defeatable foe.

 We could all but taste the impending victory!

 viking

 But on July 5th 2012, we were defeated in battle.

Joscelyn’s seizures returned just a few days later.

 Still, we held on to hope.

 On July 12th, we returned to the OR battle field once again, determined to surgically remove the last of the “big, bad brain”.

 But once again, we suffered bitter defeat at the hands of an enemy who would prove more difficult and baffling than we could have ever imagined. Joscelyn continued to seize.

 On July 31st, battle weary and with confidence waning, we tried one last time to put a surgical end to the tyrannical hold of epilepsy over our daughter.

 We tried,

 But failed.

 7 months after Joscelyn’s first surgery, we are now seasoned combatants in this fight. Fresh-faced enthusiasm and lofty, romanticized visions of the underdog defeating the giant with just a sling and a stone have been replaced by a grittier, more realistic picture of the struggle in which we continue to find ourselves mired.

We suffer now from battle fatigue and loneliness. In our darkest hours, we are tortured by thoughts that our little girl will be taken from us, all at once perhaps on the operating room table, or one night alone in her room, a victim of SUDEP; or even more painfully, slowly over time, as the hijacked neurons in her brain inevitably die and her brain and body erode.

 And so, driven by abject fear and desperation, we run to the only option that provides any real hope that we can still, yet, defeat the enemy.

 We choose surgery once again.

 I could try to explain the thought process that has led us back to this OR waiting room where I now sit typing these words, but I don’t believe I could communicate it more clearly than Robert Rummel-Hudson does in his very honest and moving blog “Schuyler’s Monster”:

 “We learned that for parents like us in the situation we were in, all you can do sometimes is trust in your fool’s hope and keep going. You never give up, and you persevere, not because you’re plucky or heroic or even smart, but rather because you hate the thought that there might have been some answer or solution waiting right around the next corner, and you would miss it if you gave up too early. It’s hope, and it’s stubborn and sometimes it’s even stupid, but it’s the thing you’ve got so you run with it. You go into battle against the monster with a rubber sword because, really, what else are you going to do?”
-Robert Rummel-Hudson

 We have (technically) lost every battle in this war thus far. We have certainly weakened the enemy along the way. Joss’ seizures aren’t nearly as frequent or severe as they were prior to her hemispherectomy but the fact remains that epilepsy still has the upper hand and we have, as yet, been unsuccessful in making her seizure-free.

 But individual battles lost or won don’t matter in the end, do they?

 What matters is who wins the war.

 And this fight is far from over.

 

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49 responses to “A Fool’s Hope

  1. Andrea M. says:

    Go, Joss, Go! Fight, Joss, Fight! Win, Joss, Win!!! Praying for ALL the warriors in the battle today: Joscelyn, her medical team, her family, and all her loved ones and friends. We serve a risen Savior and a victorious Christ ~ nothing is too difficult for HIM!! Much love to all of you ❤

  2. giazzpet says:

    oh honey, you guys have been through so much – just keep your chin up – and hey, if it makes you feel a little better, I plugged Lady of the Lakes on my RPM pg – so 😀 whoot for that

  3. Sending up prayers for Joss’s strength once again – she is such a fighter. It is unimaginable to think what ya’ll have been through. I just hope that you feel us fighting right beside you. Joss is lucky to have such amazing parents to make these tough decisions for her. Keep up the strength & faith that our good Lord is holding your (& Joss’s!) hand every step of the way.

  4. happynik says:

    You need not explain a thing. Just know you are all held, loved and supported.

  5. Cindy Costello says:

    God will always be beside you Joss. You go girl ♥♥

  6. Praying for Princess J once again!!!

    PS: You’ve been nominated for being an inspriational blogger!
    http://rusticrecipe.wordpress.com/2013/02/27/and-the-wiener-is/

  7. Jamie says:

    Sending love and comfort and holding onto your fool’s hope right beside you.

  8. Kathy Vaccaro says:

    My heart aches for all of you! You are always in my prayers. Positive thoughts to all involved in today’s procedures! You can do it Joss!! I know you can!

  9. Judy Frederick says:

    Your beautiful Joss has yet another battle to fight – she is a fighter with the will to live, and I believe she will win this battle. God answers prayers in his time, not ours, and we will continue to pray for all of you to have the strength and love to carry you through this difficult time in your lives. We know he is with us always and hears our prayers and fears, and I trust our prayers will be answered. Blessings to you all.

  10. Cynthia Greenly says:

    You know we are rooting our soldiers on…may it be the drs., Joss, you, Pringleman, the boys, the nurses, every single prayer warrior out there and of course, our Lord, thy Greatest Physician. Praying this is the last battle as she made such progress and we see the sweet victory for you all. Love you guys and if you need anything, either tell your sis to tell me, call me, Facebook me or whatever. I am here for you and will help anyway possible! Keep smiling and praying, my dear sweet friend!

  11. Mariellen Barr in PA says:

    Praying over Joss and you. Not stupid-at all. Hopeful, loving, unrelenting, faithful, vulnerable, but never stupid. In your weakness, He is made strong.

  12. Mary Jouver says:

    You are all in my thoughts and prayers as you continue to fight this battle.

  13. Never give up! Never Surrender! Audrey and I are praying for little Joscelyn!

  14. angel747 says:

    You are NOT alone in this battle. You have the God of all creation on your side. You have the prayers of many, many of His saints and warriors going up before the throne of grace. Continue to hold your position, dear Mother and Father of precious Joss! There may be more battles to fight, but you will never be alone in this war. Like any war, we cannot predict the outcome on this soil. But trust in the Everlasting Father…He will fight for you! He will not leave you or forsake you in this war. Be comforted by that fact. No matter what the outcome…you will never be alone. And we are all praying for VICTORY! In Jesus’ Name we pray! Amen.

  15. Cyndi says:

    I was told by our Neuro surgeon that to have seizures after a hemisphrectomy is extremely rare, no wonder I freak out all the time thinking something is going on in that head of Owens! I will be thinking about you guys. It’s been almost 5 years since Owen had his surgery, they just discharged him from neurology. Hope that is in her future some day too.

  16. talbottr says:

    You know that my heart is ALWAYS with you and your family, especially the little Warrior Princess whose smile and super hero determination has captured my heart completely and forever! Special prayers going out for you, Warrior Queen! ♥

  17. Jean Hillebrandt says:

    I am praying for V I C T O R Y this time and for God to be in charge. My heart goes out to you, Joss and the family. Joss is definitely a warrior to go through all the surgeries she has had! God bless you all! ❤

  18. Wendy says:

    Jennifer, you have been fighting a battle no one could envy and had your faith tested to the point few could survive, and while you have NOT YET emerged victorious, I still have to believe the Lord will give you this victory. He has given Joss parents with the strength of great warriors, the wisdom to seek Gods will and the tenacity to never give up on her. While all of us bystanders sit back in amazement of your strength, wisdom and tenacity, we, too, find ourselves frustrated with the defeats; but please know, for what is worth, you have a vast group of cheerleaders in your corner constantly bringing your petition to the Lord, and completely believing in Him for the victory. In those times when your faith started to wane, we will have three faith you need.

  19. Wendy says:

    Jennifer, you have been fighting a battle no one could envy and had your faith tested to the point few could survive, and while you have NOT YET emerged victorious, I still have to believe the Lord will give you this victory. He has given Joss parents with the strength of great warriors, the wisdom to seek Gods will and the tenacity to never give up on her. While all of us bystanders sit back in amazement of your strength, wisdom and tenacity, we, too, find ourselves frustrated with the defeats; but please know, for what is worth, you have a vast group of cheerleaders in your corner constantly bringing your petition to the Lord, and completely believing in Him for the victory. In those times when your faith starts to wane, we will have the faith you need.

  20. Dana Boyle says:

    Praying for Joss, as always, and rooting for you to win this battle. I want to see that little girl drive, go to college, get married. I will pray for one victory at a time. The first victory, that she will be fine after this surgery and that she will be seizure-free, once and for all, so she can begin to build herself up for good. Love to you, Jennifer! I’d make you dinner if I was closer…I’d come and sit with you at the hospital. I can send my BFF! She’s nearby! ❤

  21. Alma says:

    Am praying for all of you. May God wrap his arms around this precious baby and keep her safe,

  22. Karen Truebenbach says:

    I can only imagine what you must be going thru, and prayers continue. There are so many scriptures that come to mind, and as our strength weakens, satan tries to enter. Yet HE, the great I AM Never leaves us, and when He is with us who can be against us? I believe that means who can prevail over us. Joscelyn is a gift from God, and He loves his little children. Your Faith will keep you strong, even though tears and heartache are felt. We pray for Blessings for you and this precious little one.

  23. Kathy Williamson says:

    My thoughts and prayers are with you and your precious little one. As Kinley’s Grammy, I well understand your feeling of defeat and devastation at the return of the seizure monster, as we call them. Have hope and faith that this time will work…Kinley’s were from the same area and since the October surgery, we have not seen any. She is still on meds. Also, she lost no skills she had attained prior to the surgery, so may God bless Joscelyn with a good outcome as well. Keep the faith and God bless.

  24. carolyn alverson says:

    Dear Tormented, Weary, Lonely Warriors,
    Words of encouragement seem flat and cliche. Truly, our ONLY hope in times like these is Jesus. On your behalf I ask Him to enfold you in his love, give you physical, mental, emotional and spiritual strength for this next battle, and grant you His peace that surpasses all explanation. Bless you for making the enormous effort to communicate your honest thoughts, many fears, deep discouragement. You are close in my heart and continually in my prayers.

  25. Steve says:

    I remember this day . It was the day I first met you. You had answered on FB about how some people might think what you were doing was A Fools Hope and I responded :Not a Fools Hope But the Hope of someone who loves their little one more than life itself. I am so blessed that I found you and Jocselyn on that day and we have become friends.The last 9 months though difficult have been such much better for meeting you and all of the great friends I have met through you. Thank you.

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