Joscelyn's Journey

A Beautiful Child's Journey Through Hemimegalencephaly

Living a Life

on September 2, 2012

 I’m always intrigued by the stories of people who set off on modern day pilgrimages.

 What motivates someone to give up the many conveniences of the 21st century and voluntary suffer hardship and loneliness on a physically and emotionally exhausting journey through the unknown?

I just started reading the story of Paul Stutzman. A successful restaurant-manager-turned-backpacker, Stutzman set out on the 2,176-mile trip across the Appalachian Trail to find peace after his wife died from breast cancer.

Like many pilgrims before him, his journey was a spiritual one.

 In his book, “Hiking Through: One Man’s Journey to Peace and Freedom on the Appalachian Trail”, Stutzman writes, “I wanted to know if God was who He said He was.

‘Are You in control of events, God, or do things on this earth just happen randomly?’”

 In the course of the last year, after losing my 14 year old son Nick in a jet-ski accident and learning that my one- year old daughter would need radical brain surgery to save her life, I’ve found myself asking that very same question. (Along with many others.)

 As a wife and mother of 6, packing a bag and hitting the trail to go in search of elusive spiritual truths isn’t an option for me. (Not a responsible one, anyway.) So for now, I’ll satisfy my wanderlust by living vicariously through the adventures (and misadventures) of others.

 Another pilgrimage story that caught my attention recently is a movie called “The Way”. It’s directed by Emilio Estevez and stars Martin Sheen as a bereaved father who decides to embark on the historical pilgrimage “The Way of St. James” to honor his deceased son’s desire to finish the journey.

 The “Way of St. James” or the “Camino de Santiago de Compostela” is a series of walking and cycling pilgrimage paths from all across Europe, which converge on Santiago de Compostela in north-west Spain as their destination. For more than 1,000 years pilgrims have traveled along the many “Caminos” to Santiago where tradition has it that the remains of the apostle Saint James are buried.

In the beginning of the film, Emilio Estevez’s character and his father are at odds over the son’s decision to walk the Way of St. James. His father, a doctor with a successful practice, thinks that his son is wasting his education and should focus on building a career and settling down instead of wandering aimlessly through the European countryside. He stresses the importance of one’s choices in life.

His son responds by saying, “You don’t choose a life, Dad. You live one.”

 I’ve been pondering that philosophy quite a bit in the last few weeks and have come to understand two somewhat different, but related, meanings in this thought:

 1) We don’t (always) get to choose what happens to us in life. Sometimes we cause our own hardships and sometimes trials are simply thrust upon us. Regardless of the origin of our hardships, our focus should be on making the best of every situation and finding a way to continue finding gratitude and joy despite our trials.

 2) Sometimes, the life choices we make leave little time for living. We can choose to have a career that demands that we spend 60-80 hours a week at the office but that choice leaves little time for the relationships, activities and pursuits that make life worth living. Our choices can end up controlling us and robbing us of our joy.

 Paul Stutzman learned this lesson the hard way. He and his wife worked diligently toward their common goals of getting out of debt, retiring early and then doing mission work. He recalls making their last house payment and bringing it to the hospital where his wife lay dying. Within four months, his wife was gone. “We had spent a lifetime”, he says, “working toward that distant goal, making promises to ourselves that we could never fulfill…Who knows if you will have tomorrow?”

 I still don’t know if God is orchestrating everything that happens in my life or if He simply set certain physical laws into motion eons ago and simply allows the effects of those laws in my life as they apply. (I’m looking forward to reading Stutzman’s views on the subject. Feel free to add your thoughts in the comments section below, too.)

What I do know is that I didn’t choose for my son to die.

I didn’t choose for my daughter to be born with a malformed brain or for her to suffer with intractable epileptic seizures or for her to have to have radical brain surgery in an effort to eliminate them.

 I didn’t choose this life…

 But it’s mine now and I am committed to living it;

 To its fullest,

 And with as much gratitude and gusto as I can muster.

8 months after losing Nick, I still cry almost every day.

But I am not without purpose:

My children need me and that they deserve to have a mother who is fully present in their lives and not so consumed by her own grief that she can’t summon the energy to do fun things like plan spontaneous late night trips to Disney World to watch the fireworks and eat ice cream at the insane hour of 11pm in front of Cinderella’s Castle:

While I would love to one day join the ranks of those intrepid explorers who complete cross country pilgrimages, I know that there are no secrets to the universe to be found on those well worn trails that I can’t find right here at home on the smiling faces of my children and in quiet conversations with God.

“Be here NOW”, a familiar voice says.

“Take nothing for granted.”

“Live the life I have chosen for you.”

The journey continues.


14 responses to “Living a Life

  1. Kimberly Harris says:

    You are a radiantly beautiful person. Your children are very lucky that you are their mother. My grandmother lived her whole life with gusto, even after her husband (my grandfather) committed suicide in the gas station that they owned, and he left her with four small children. She embraced every day as if it was her last. She used her good china sterling silver utensils every day saying, “why wait?” I try to do the same, but it is certainly not easy sometimes. I admire you so very much!

  2. Lisa Melton says:

    My feelings as well and you have put them into words in a beautiful story..thank you Jennifer.

  3. Bridget K says:

    So beautifully stated. You have amazing inner strength, and that comes from Him, from knowing Him. You will likely have many questions you don’t know the answers to (this side of heaven), BUT you understand what’s important in life and that He will sustain you. You get it. Praying for that sweet girl, you, your family, and your journey.

  4. Davielle Huffman says:

    Jennifer, you got me again. Beautifully written! A hug to you, a wink to Nick, and a smooch to Joss.

  5. Nancy Buddenhagen says:

    You continue to inspire me. What an awesome gift you are to so many. Love you sweet little sister.

  6. Mariellen Barr in PA says:

    Thank you. I often find myself misunderstanding my purpose as a mother at home. I do believe the Lord is in control of even the smallest events from the beginning of time to the end-or else why would he ask His children to pray? I’m so sorry you lost your son. That is something I have never experienced.

    • Thank you, Mariellen! I don’t believe that there is any greater or rewarding job than to be a mother, though it often doesn’t feel that way! I hope and pray that you will always know how important you are in the lives of your children! Hugs!

  7. Kathy Lierman says:

    Absolutely beautifully written. Really will make others realize the important things in life. I have followed your story of Baby Joss and what an incredible road it has been for your entire family. May God Bless each and every one of you each and every day. You will remain in my thoughts and prayers.

  8. Niki says:

    I’ve been following your story since the article in the Sentinel, and this post really touched me. We live in the same town, have stayed at FL Hospital (neighbor is actuallly a nurse in the PICU at FH South), and probably have several specialists in common. My son (28 months) has a bunch of special needs. He’s on the autistic spectrum, probably hearing impaired, and has some undiagnosed neuromuscular issue that appears to be progressive.

    I’ve wrestled lately with the notion of living this life fully. It is not what I would have EVER chosen, but it is what it is – and it is beautiful! Hard, but beautiful. My son is adopted and his birthparents found us through an unimaginable set of circumstances. How can I not believe that he was supposed to be ours and this was supposed to be my life? But it is hard. I strive to find balance. Enjoying following your story and will probably run into at rehab at some point. We see Stacey (PT) and Ivonne (Speech) there.

  9. Wes Locke says:

    I was told by a very dear find to read your blog today. She knows I, and my family needs some inspiration and pointed me in this direction. As soon as I started reading I realized I have been following your “pilgrimage” on Facebook over the last few months through the postings of another friend we have in common. God continues to work in mysterious ways!

    My wife was diagnosed with a brain tumor in April and has been going through treatment (surgery, radiation, chemo) since. I have tried to be strong for her but, we both have the same questions you mentioned in your blog and it has been difficult, more so with her than with me, to grapple with these questions.

    Your courage through your pilgrimage is inspiring! I hope I can convince my wife to start reading your posts. Know that you, your family, and Jocelyn are in our prayers. Thank you!

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