Joscelyn's Journey

A Beautiful Child's Journey Through Hemimegalencephaly

The Roller Coaster

on August 3, 2012

Having grown up in central Florida, which is home to several theme parks, I’ve had the opportunity to ride on many different kinds of roller coasters in my life; rickety wooden ones, sleek and seamless steel ones, themed ones, indoor ones, outdoor ones, dueling ones, backward ones and even upside-down ones!

 What makes a great coaster?

1) Suspense: Not knowing what’s going to happen next.

(Would a roller coaster still be fun if it was self-powered? Of course not!)

 2) Surprise: Unexpected drops, twists and turns.

 3) Speed: The faster, the better!

 No matter how exciting the design of the coaster though, what ultimately makes the roller coaster experience fun for the rider is the underlying knowledge that no matter how fast, how scary or how dangerous the journey may seem, the passenger knows deep down that they’re safe. They know that the maker of the coaster designed the ride to be thrilling but with the riders’ ultimate well-being in mind.

 According to Wikipedia

 “Roller coaster design requires a working knowledge of basic physics to avoid uncomfortable, even potentially fatal, strain to the rider. Ride designers must carefully ensure the accelerations experienced throughout the ride do not subject the human body to more than it can handle. The human body needs time to detect changes in force in order to control muscle tension. Failure to take this into account can result in severe injuries such as whiplash.”

 Joscelyn’s journey has certainly been a roller coaster ride thus far! I’ve often been told that “God never gives us more than we can handle”,but I will admit that there have been many times on this terrifying ride when my discomfort has been so acute that I’ve questioned the Ride Designer and wondered how I would survive the experience!

Suspense? We’re months into the journey and we’re still unsure of what’s around the bend!

Surprise?  Almost daily since Joss was diagnosed! Right now we’re all loving the GOOD surprise that even though everyone was expecting her to need another shunt, she’s proving that she can process the excess cerebrospinal fluid that her body is producing all on her own!

Speed? From diagnosis to four brain surgeries in just two months!

Ever since we buckled up and hitched a ride on the “Hemimegalencephaly Express”, I’ve often found myself with white knuckles. Helpless against the forces of nature that have buffeted my body and turned my world (and stomach) upside-down, there have been times when all I could do was squeeze my eyes shut and cry out to the heavens, “Stop the ride, I want to get off!” but despite my pounding heart, blood-curdling screams and racing pulse, the roller coaster just kept going on and on; up and down, twisting and turning.

 If you’ve ridden on a coaster lately, you might have had the opportunity to purchase a souvenir photo when you were finished. Many theme parks now have a camera hooked up to record the expression of passengers at the beginning of an exciting drop or other heart-pounding point of the ride.

 Look at any one of these photos and you’ll see a variety of reactions reflected on the passengers’ faces ranging from sheer glee to sheer terror. Some riders are screaming and look horrified; others have their hands thrown into the air in total abandonment and seem to be having the time of their lives.

You have the same group of people, sitting in the same car, traveling on the same journey, buffeted by the same outside forces. What distinguishes one rider’s experience from another?

 Trust in the Ride Designer.

While this ride that we’re currently on with Joscelyn certainly isn’t fun, it doesn’t have to be a completely traumatic experience for us either.

 Like the riders with their hands thrown up in the air, I can choose abandonment and surrender.

Instead of focusing on the fact that I am unhappy about my inability to control what happens to me, I can focus on the RIDE DESIGNER and remind myself that He had my ultimate well-being in mind before he ever engineered this ride.

He knew what I could handle and what I couldn’t.

He knows I won’t perish.

When I keep my mind focused on the Ride Designer instead of the possible perils of the ride itself,  I find my grip on the safety bar relaxing just a bit. My neck muscles loosen, my eyes dare to take a glimpse of my surroundings (Which sometimes are really quite beautiful!) . The ride doesn’t seem quite as terrifying as before.

It also helps to remember that every ride, even the scary ones, come to an end eventually. One day, the brakes will engage and I will find myself gliding smoothly into the station, my feet safely back on firm ground.

It’s been years since I’ve seen the movie, “Parenthood”, starring Steve Martin, but this particular scene from that movie has been replaying in my mind all this week.

 

Would I have given up my ride on this roller coaster with Joscelyn in exchange for the safety and security of a merry-go-round ride with a different child who wasn’t born with special needs?

Absolutely not!

My daughter is a little eighteen-pound miracle worker who inspires and encourages hundreds of people every day! She has taught me to embrace the “now”, to face my trials with a smile and to never stop challenging others’ expectations of me!

 She is perfect in every way and I am blessed beyond measure to be her mother!

 “Some like the merry-go-round, but I like the roller coaster!

 You get more out of it!” 

More, indeed. 🙂

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25 responses to “The Roller Coaster

  1. Cynthia Greenly says:

    I can feel your stomach twisting and turning on each curve and loop. However, you are riding with your hands raised in the air and is being the bravest rider I know.

  2. Lori labree says:

    I agree! Just keep holding on to the knowledge of you knowing the maker by name! We have not stopped praying for you!

  3. One more courageous ride after another. This mom, baby Joss, Michael and children will be giving, giving, giving for a lifetime and I for one as looking forward to the rest of the ride.

  4. BEAUTIFUL WRITINGS!!!! Amazing words, so charismatic…..blessings to YOU and your amazing family!

  5. mandisellars says:

    This is the most beautiful truth. Well spoken from your heart. You and your sweet family are in my thoughts and prayers. Thank you for sending such encouragement my way. God bless you.
    Numbers 6:24-26 is my prayer for you.

    Mandi

  6. Jury Stewart says:

    Jennifer,
    I thoroughly enjoy reading your posts and blogs. They are so articulate and from your heart clearly. I hope others have suggested to you and I would that you consider writing a book of this experience and journey. It could be such a gift to others who find themselves beginning this same situation in the future. Your faith and words are so encouraging to me and I am sure to many others as well. You have a talent for expression and I am sure it would be a gift and comforting to others.

  7. Andrea says:

    What a beautiful post, Jennifer! Thank you so much for sharing your heart and your insight with us. To a much lesser extent, I’m sure, we all ride the roller coaster with you as we pray daily for Joscelyn and your entire family. So you are not alone! Trusting in the Ride Designer with you and abandoning my fears of the unknown to the knowledge of His certain love and mighty power ……… Have a beautiful, grace-filled day!

  8. Lisa Melton says:

    Well written Jennifer, I liked the references you used, it gave me a peek into understanding my own life, so thank you very much! I am terrified of roller coasters, only a dare ever gets me on one, from a teenage friend when I was young, or last year when I began to live more and exist less (on that merry go round).My new motto has been, “Bite off more than you can chew, and then chew, chew, chew. ” That makes me remember my son Jared, who began his eternal life last August…his favorite story at 2 was “The Little Engine That Could” I think I can, I think I can, I think I can..choo choo.choo… ahhhhh….You and Joss are climbing that mountain, but soon you will get to that peak and you can coast !02.
    It is wonderful reading your blogs…such wisdom so young.. You are blessed with both youth and wisdom that normally comes from someone much older…because of your life experiences, and you share like a good friend, with close friends and new acquaintances,,,,grief and gratitude… they hold hands.
    Much Love to you , Joss, your boys and “Pringleman” Prayers going up from so many, God is very busy!

    • Thank you so much, Lisa! My heart breaks for you over the loss of both of our sweet sons! You are doing an amazing job of honoring Jared’s life by living your own with even more intention and purpose! You inspire me to do the same! Love and hugs!

  9. plupien says:

    Jennifer,
    I do not know you, however, I have been following your journey through a friend that has followed you on Facebook. I just wanted to let you know that I have been praying for you and your family. You’re journey is inspirational and your daughter is a true miracle. I too believe in all that you say, trust the ride designer. I have had many life experiences that I could not wrap my head around, yet for some reason the ride designer pulled me to the unloading dock still in tact, yet changed from the experience of the ride. I so appreciate your analogy and it is a good reminder of how to face life’s challenges. You are touching so many lives through this experience and I will continue to pray for the health and life of your daughter and the strength and courage for your family as you face the unexpected turns and twists that this journey is taking you on. Thank you for being open and sharing. Blessings,
    Paula

  10. Tina Miller says:

    Jennifer when this is all over you should write a book. You are one of the most inspirational writers. I am serious. This is such good stuff. Your analogy is wonderful. <3, hugs, prayers, and blessings.

  11. Mariellen Barr in PA says:

    Very encouraging!

  12. Linda Juaire says:

    The Ride Designer has something for everyone. Your roller coaster path truly makes us connect together all over the world, and I thank you for being inspiration to me! Hug all your family for me and tell them that I send positive vibes their way for “their ride”. And, I agree with Tina, continue writing!!!!! Walk with wisdom, my sister.

  13. Susan Miller says:

    Hi there, You amaze me every day that I read your blog. I love your faith and admire the way you put your emotions into words. I have never been great with words. You, Joscelyn and your whole family are touching so many lives. Keep up the great work as well as your spirit. You lift my spirit all the time. It is inspiring to watch this little girl who has been so much and still has the most beautiful smile on her face (she must take after her Mom). God Bless, prayers continue to come your way. With Much love, Susan

  14. Melissa says:

    My daughter had her hemispherectomy on August 11 2011 – she is one year seizure free as of yesterday. We also had a chance to go to a “reunion” round table with an entire team of specialists. We don’t regret our decisions, and the 50 families that were there said the same thing, even those very very few who still saw small seizures every once in a while. We are going off our final drug next month. My daughter was 14 years old, and our only regret was not doing it sooner. It is a hard decision, but you made the right one. Congratulations, and don’t forget to laugh…..Melissa

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