Joscelyn's Journey

A Beautiful Child's Journey Through Hemimegalencephaly

Thanks-Living

on November 18, 2012

November, in addition to being the month in which we traditionally stop to give thanks for our many blessings, also happens to be National Epilepsy Awareness Month. In response, The Epilepsy Foundation has created an informational campaign titled, “Did You Know?”

Like many of you, my knowledge of epilepsy prior to Joscelyn’s diagnosis of hemimegalencephaly was pretty limited.

In the last six months, we’ve learned (the hard way) that:

-Prenatal testing and sonograms do not always reveal congenital defects that can lead to epilepsy.

-We were fortunate to know the cause of her seizures, as over 50% of epilepsy patients do not know what causes their epilepsy.

-Seizure activity is not always easily identified. A seizure can manifest itself by causing the victim to stare off for a few seconds, smack their lips, become confused, turn their head from side to side and in many other subtle ways.

-We are not alone. One in ten people have had a seizure and 65 million people have epilepsy worldwide. Approximately 1 in 26 people in the U.S. will develop epilepsy at some point in their lifetime.

And of course:

-Sometimes, epilepsy can be so severe that anti-seizure medication doesn’t work and the only hope of seizure control is the surgical removal of half of a person’s brain.

In this season of giving thanks, can I honestly say that I’m thankful for what I now know about epilepsy?

Well, actually…yes.

“Knowledge is power”, the saying goes and when I think back on the early days of this journey, (Which were not that long ago according to the calendar but a lifetime ago according to my emotions.), to the fear and the questions and the tormenting doubt over whether or not we were making the right decision to go forward with the hemispherectomy, I’m grateful for what I’ve learned along the way. As my understanding of epilepsy, hemimegalencephaly and hemispherectomy has grown, so has my ability to be an effective advocate for my daughter. Because of what I now know, I am more secure in my ability to care and fight for what’s best for her. And that’s a very good thing because as it turns out, we may not be quite “out of the woods yet” with Joss. She’s been experiencing some weird “episodes” lately where she cries, her eye twitches and she gets very jittery. After Thanksgiving, we’ll be checking into the hospital to undergo more EEG monitoring and get another MRI.

So, it looks like the roller coaster ride isn’t over just yet.

Are there days when, as Pink sings in her latest song, “I think I’ve had enough of this!” I “Want back my ignorance and bliss”?

Absolutely!

In fact, I don’t think I’ve ever thought about running away from home as often as I have in the last year!

But as a lovely reminder from the Compassionate Friends grief support network which I received this morning so beautifully stated, life is better when I make the best of this day and try hard to see all that is IS and not what it ISN’T!

And what is it?

1) It’s a team of dedicated professionals who work tirelessly to make sure that Joss is meeting her full potential:

(After you watch this, take a moment to lay on the floor and try to propel yourself forward using only one arm. It’s tough!)

2) It’s having a good job with good insurance that pays for the latest technological advancements in therapy like as Electrical Stimulation Units to strengthen “Righty” and Augmentative Alternative Communication (AAC) Devices to help Joss communicate with us:

 

AAC Device

3) It’s also when insurance DOESN’T pay for something that we need for Joss and our friends, family and community plan wonderful fundraisers to help us cover the remainder. Our wonderful friends at Family Martial Arts Center partnered with KICK USA recently to host a karate tournament to benefit Joscelyn. I am, quite frequently, completely overwhelmed by the outpouring of generosity and love that is directed toward our little girl and family on a daily basis.

4) It’s the love of my friends who keep me sane, let me talk their ears off, do fun things with me to take my mind off of what “isn’t” and who faithfully pray for our family every day. You renew my strength.

5) It’s the new friends that I never would have had the privilege of getting to know were it not for Joss’ journey; beautiful people with amazing stories of their own struggles and victories. They say that we inspire them but the truth is, they inspire us.

6) It’s my beloved “Pringleman” who loves me unconditionally; even when I take my anger, fear and frustration out on him simply because he’s the closest target. He is an amazing husband and a wonderful father. I don’t deserve him.

7) It’s my “Mother-in-Love” and extended family, who always offer to help in any way they can and patiently await their turn to babysit Joss even though I usually refuse to give her up, even for an evening! 😉

8) It’s family, from my mother and other precious family members scattered all across the country to my own children. I cherish all of you!

9) It’s strangers (Even famous ones!) who reach out from all over the world to let us know that they are supporting our little girl in her fight.

The Wiggles Send Joss a Video!

10) It’s a beautiful little girl, full of spunk and determination, who faces each day with a smile and inspires us all to make the most of what “IS“!

11) And always…always, it’s a faith in a loving God who gives good gifts and promises to never leave my side.

Happy Thanksgiving Thanks-Living!

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11 responses to “Thanks-Living

  1. debbie says:

    made me cry! I love you!

  2. Cyndi Yanke says:

    Hope the tests give you some answers. Let me know how you thing the ESM works, they mention it every once in a while for Owen but then I forget about it.

  3. I’ve heard great things about it, Cyndi! I’ll let you know. Hugs to you and Owen!

  4. Dana Boyle says:

    Tearing up, Jennifer. You do this with such grace and love, when you could do it so many other ways. I love that you have Pringleman to hold your hand along this path. My heart is filled with love for your little girl.

  5. talbottr says:

    So moving. Thanksgiving…I will give thanks for the gift of Joss (and you) in my life and definitely in my heart!

  6. mariaslaby says:

    Beautiful as always!

  7. Sylvia says:

    She’s such a hard working little trooper! It’s great to see this wonderful update! Still praying for you all!

  8. Linda S. says:

    your family’s willingness to take this journey and yours to share it are enriching my life and rippling out to others!
    about photo #6: i believe you absolutely do deserve him!
    with great appreciation!

  9. Tiffany says:

    Great post! I am so blessed to know you! Love the pictures, thank you for sharing!

  10. Jennifer says:

    Got your link via a prayer request from our Bible study. I do not know your connection to the Bible study exactly, however, I am a mom of two boys, and I understand our mom connection. I am also a speech therapist so I know a lot about children with special needs, conditions, epilepsy etc. I am in awe of your Spirit. God is filling you up right now. You are also in pain I can only imagine. I will pray for you now and in the days ahead. “The Lord bless you and keep you; the LORD make his face to shine on you and be gracious to you; the Lord turn his face toward you and give you peace.” Numbers 6:24-26

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