The Thoughts of a Father: my journal from 10 years ago . . .Part 5 Epilogue

“Never Die”

That is where my journal, but certainly not the story, ends. I kind of wish I had continued for another six months or so because so many wonderful things happened in that time period. As I look back, the reason I think I stopped writing is because once Brian came home, our lives became consumed with learning how to care for him and the lifestyle changes that come with the needs of a quadriplegic son.

Most days I didn’t have the energy or the motivation in me at the end of the day to take the time to write, so my little journal was put away with all the cards and notes, until now. In this final section I’ll try to encapsulate some of the events, and corresponding thoughts and emotions, not only of the following 6 months after Brian’s discharge from Magee, but continuing up to today.

We had high hopes that Brian would walk out of Magee Rehabilitation Hospital, just like his friend and hero Adam Taliaferro, but that wasn’t to be. Brian came home in a wheelchair, a manual one that was loaned to us by Magee until Brian got his own chair. We had decided—partly by faith and partly due to Brian’s continuing progress—to forget the power chair idea and go just with the manual wheelchair. As it turns out we made the right decision. Brian never needed the power chair.

When it came time to order this manual wheelchair, Brian had his choice of colors. Of course, in keeping with his personality, Brian ordered a special lime green, almost fluorescent colored one, with all the coolest stuff. It really was impressive looking when it arrived. It looked fast, which is why I think Brian liked it.

After Brian left Magee’s inpatient hospital, he began daily visits to their outpatient facility called Riverfront, near Penn’s Landing in Philadelphia. Brian would go there sometimes five days a week. They had an arrangement for drivers—mostly retired men—who would come to our house every morning, pick Brian up and bring him back home after a day of therapy. It was wonderful, because so many good things happened during his time at Riverfront. He had a lot of occupational therapy there—learning how to write, type, pick things up and hold things like a cup or a pen. Brian never regained the full use of his hands, but he has learned to adapt and can type faster than me and his handwriting is probably still better than mine!

Early walking on his own, Summer 2002

It was at Magee Riverfront that Brian really began to gain the muscle strength and the ability to walk using arm cuff crutches. By the time summer came around Brian was walking pretty well with those. It was a wonderful sight to behold, to see him walking, without the Arjo, without therapists working to move his legs, or holding him up with a belt.

Through the summer we also had a teacher who came to our home and worked with Brian to help get him caught up on the big chunk of his junior year of high school that he had missed. Brian had mentioned in the newspaper article that one of the “perks” of being in Magee was getting to miss school. He found out pretty quickly that he had a lot of work to do to get caught up, but he was eventually able to accomplish all the needed make-up work.

The summer flew by and before you know it, his senior year began. I think for me, one of the more emotional events in Brian’s “comeback” from this injury, was the day I dropped him off at the high school on the first day of class, for him his first day back in the building since he left on February 19.

First day back at school

Typical Brian, he didn’t want a big deal made of it, but for me it was a big deal. I watched him walk into the building then I went inside to take a few photos of him heading down the hall. He was back to being a normal school kid again. He had to leave his classes a few minutes early in order to get to the next class on time. But other than that, he was just one of the guys again.

The school year was far from normal, though. One of the highlights was that Brian was elected homecoming king during the Fall semester. In Brian’s case, that made for a bit of a challenge since the king was to escort the homecoming queen across the football field and parade around the track with the homecoming court. Though the night was an ugly, rainy night, there wasn’t a dry eye in the stadium as Brian escorted Monica, the homecoming queen across the muddy football field. No one thought twice about the fact that it took much longer than normal to make that trek. Those spectators, along with all our family, were much more focused on the beautiful sight of seeing this young man upright and putting one foot in front of the other—on his own. The whole community by now had become familiar with Brian’s story, but this was the first time many of them had seen him walking.

Homecoming King and Queen

That Fall another newspaper, The Morning Call—a daily out of Allentown, did an article on Brian. (Entire text of the article is here: Morning Call article 9-26-02 ) At that time he was continuing to do both physical and occupational therapy, this time at Good Shepherd Rehabilitation Hospital in Allentown. The staff there helped Brian to continue to work on both his strength and dexterity. But one of the best things they did, from Brian’s perspective, was to give him the real kind of mobility a teenager longs for—driving a car.

At Good Shepherd he took part in actual road training in how to drive a car with hand controls. Brian breezed through that class in record time (I think he was pretty motivated). Eventually we were able to get him his first vehicle with hand controls, a Jeep Cherokee. Now Brian truly was mobile. And he was a happy boy—no more relying on us to take him everywhere.

The Morning Call article

Another event during Brian’s senior year that may have rivaled homecoming in emotional impact was the day Brian walked up the ramp and onto the stage in the high school gymnasium to receive his diploma the following June. And yes, just as she promised, our friend Betty did lead the standing ovation, and the thunderous applause. Again, no dry eyes in the house on that evening.

When Brian came home to us in early May, 2002, our housing situation was still a big question mark. We were living in a very, non-handicapped accessible, three-story Victorian house. The stair glide was a helpful temporary fix and the many work parties had helped to get our house in selling condition, but we were reluctant to put it on the market without a place to go.

An amazing set of circumstances occurred that not only solved our housing problem, but was perhaps one of the most powerful examples of the countless ways a community came together to love and support our family. A realtor friend had made some contact with a gentleman not far from where we lived, who had several acres of wooded land that adjoined his property. After hearing our story he agreed to sell us a piece of that land—more than an acre and a half—for a significantly discounted price.

A builder she also knew came to us with a plan for an accessible home with a first floor bedroom and bath for Brian that even included a deck outside his bedroom. And the builder said he would build the areas of the house dedicated to Brian, at cost! Wow! This came together in a very short period of time, and there are no words to say “thank you” to all those who were involved in this process. Our existing home was sold. We moved into a brand new, Brian-accessible home just before the end of 2002. Both of our realtor friends who helped us on either end of the sale, did their work gratis. We praise the Lord for this wonderful provision.

Brian is no longer living at home and we have since moved from that new home. But for over 5 years that house enabled Brian to have freedom of access and mobility and to continue to learn how to live a life of independence. And with that independence, Brian has shown us, by his life and by his attitude, that even though many in our society may think otherwise, the word “disabled” does not equal “limited.”

Brian has found some new and creative ways to express himself and one is through his artwork. Before his accident, Brian was never much of an artist, not necessarily because of a lack of talent, but he would never have the patience to sit still long enough to create something. A few years ago he came up with the idea for a way of painting that has become his signature style. He has been creating beautiful artwork using nothing but various colored Sharpie markers. The unique thing is how he uses those markers.

Brian's artwork

After tracing out a pattern or picture lightly in pencil, he fills in the painting entirely in dots. No coloring, just dots. Here is an example of one of his first large paintings that now is matted and framed and hanging in our home. It was estimated there are over 50,000 dots that make up this painting. I know that must be true because he spent a good part of a several weeks working on this piece. It is especially challenging since he never regained more than 50% of the use of his hands.

But don’t get the idea that Brian is now sedentary or even spending all his time in one place. I could fill pages upon pages with the adventures and episodes that have taken place in the life of my son Brian in the days since his release from the hospital in May, 2002 and finishing up high school in June, 2003.

Brian has been back on a ski slope doing mono skiing, lived in Hawaii for over a year. (and surfed, yes that’s right, while someone stood behind him on the surfboard holding him up—we have video!). He has played harmonica (yes he taught himself to play) with travelling blues bands and toured throughout the West in a band called Dot Nation (where did that name come from? Think Brian’s paintings) Oh yes, somewhere in the middle of that he found time to spend two years as a student at Penn State.

As far as Brian’s current walking abilities, he has graduated from using the arm cuff crutches to using a cane. That was something he pretty much decided on his own. If you ever talk to Brian you can ask him about the creative way he chose to get rid of his crutches and at the same time make what he considered to be a symbolic statement. Suffice it to say that if you ever run into someone who was hiking in the bottom of the Grand Canyon and saw what they thought were flying silver sticks, it might actually have been something else altogether.

Brian on a mono ski

Oh, and that spiffy lime green wheelchair? It now sits collecting dust and spiderwebs in the garage. It is pretty beat up and missing some parts from a lot of hard use, but Brian doesn’t really need it anymore. He is moving too fast on his feet now to be slowed down by a wheelchair. He is a musician, artist, world traveler, free spirit, and the last 10 years my son has lived and continues to live life to the fullest and is one of the most positive people I know.

One thing I have never, ever seen Brian do in these 10 years is pity himself, or ask for pity from anyone else. In reality (except for when looking for those good seats at a concert), Brian has never considered himself disabled, and neither do we. I remember those words I recorded in my journal when Brian watched a video at Magee of disabled people doing all kinds of things and he said it made him realize he could still do anything. He truly believes that and his life shows it.

A couple years after his accident, Brian got a tattoo on his back at the base of his neck, which he designed. It says simply, “Never Die.” And that has been his philosophy—never die. I’ve learned from watching my son that though his physical abilities are limited, his life is not. He is as full of life now as he was before February 19, 2002, probably more so. Brian has never been defined by—nor limited by—his disabilities. His legs don’t work, but he “runs” so fast chasing after life and vitality that I can’t keep up with him. His hands don’t work, but he grasps for every opportunity to expand his world and stretch the boundaries of his reach.

Yes, those are alligators

His latest adventure, as I write this in late February, 2012,  involves living in the Florida everglades. Here is the latest photo. Yes those gray things behind him are alligators. I count at least 10 of them. What is he doing there? Hopefully staying far enough from the alligators. They can definitely run faster than he does!

Where he is currently residing, he has intermittent cell phone connections so I only talk to him sporadically. I called him some time ago and asked his permission to write up this story. This is my journal, yes, but it is all about him. He was very excited about this project. He is too busy living to have a Facebook account but if you would like to send him an email it is brian.deloz@gmail.com. I’m sure he would love to hear your thoughts. He will read them all I’m sure. You may not get an answer right away. If you do, tell him Dad says to call home. : )

What have I personally learned from this experience with my son? Everyone in our family has learned so many things there is not space here to recount all the lessons. Let me say the one thing I have learned, as a person of faith, is that God does indeed do miracles, but not always the same miracles in everyone or in the same time or the same fashion. Quite frankly, I think we are all miracles in many ways. But Brian realizes and so do we, that his situation is not always replicated. Many spinal cord injured persons do not walk again. Many remain in a wheelchair but still have active, full, wonderful, positive, hopeful lives. That in itself may be a miracle. I met many of those miracles at Magee Rehabilitation Hospital.

I remember one time Brian asking me this powerful philosophical question, “Dad, people prayed for others who were injured and they remain in a chair. People prayed for me and I am walking. Why is that?” As a former pastor and seminary graduate, I gave him an equally profound answer. “Brian, I have no idea.” It was much more honest an answer than it was profound.

But I did have what I thought were some good words for him. I told him I didn’t know why he got his legs back and that person didn’t. As I thought further I told him, “If God did indeed allow you to get those legs back, He expects you to do something with those legs. If your hands are working again, then he expects you to do great things and use those hands to do good, to give, to reach with those hands into places where God’s love needs to be shown and where you can be his hands.”

Obligatory bragging photo of our kids, l. to r., Amy, Camrin, Lindsey, Brian

In the end we realize Brian is not the norm. Brian is a miracle, yes. He truly considers himself very privileged, and so do we. He so did not want to spend the rest of his life in a chair. Yet there are many wonderful people who do. One of many things I gained was a new respect, and more so appreciation, for the challenges and the needs of those who are disabled. Many of those challenges are barriers that we able-bodied folks—without thinking—put in their way. I don’t want to ever look down, literally or figuratively, on those who are physically challenged. I have a new sensitivity simply because I saw that happen first-hand with my own son.
 
What did I learn from this writing experience and from transcribing my thoughts from this wild ride of ten years ago? This was a moving and even cathartic experience for me to reread and type in these thoughts and to look back on those days. This is the first time I read this diary in one sitting. And when I read it all at once like that, some things became very clear to me.
 
This is not a story about me. It’s not even a story about my son, really. It truly is not just a story about a kid who walks again. It is a story of how an extended family, a community, loving church members, great friends of my son, many and varied caring and skilled health care providers came together to help a teenager, and his parents and siblings, get their life back together–to heal and to move on. It is a story that reminds me and should remind all of us of the value of community (what the New Testament calls koinonia). None of us can survive the challenges that life throws our way, on our own. Nor are we supposed to.

These people–varied and unique individuals like a baseball coach, a contractor, some realtors, a little girl named Emily, an unknown woman in a restaurant. They are the story. They are the miracle. They are who and what has helped my son–and our family–walk again.

Many of you who are reading this are a part of this story. Whether you are mentioned by name or not, you are a part of the vast number people who helped give us strength and were our legs and our hands. And those of you who were formerly strangers to our family and are new to this, you are now part of this story simply by reading this account and particularly those numbers of individuals who responded on the blog, via Facebook and by email. And I thank you all for taking the time to insert yourself into this ongoing story.

Never Die

It IS about all of you. Oh yes, and it is about a boy, a son. My son. My hero.

These are the thoughts of a father. The story, and the miracle, continues…

 
 

If you have been moved to help in some tangible way, here are two very worthy causes. 11,000 people each year are afflicted with spinal cord injuries, many of them young adults.

Christopher & Dana Reeve Foundation  works to help find a cure for spinal cord injury through research and to improve the quality of life for those afflicted with spinal cord injuries.

Magee Rehabilitation Hospital  seeks to improve the quality of life of persons with disabilities by providing high quality rehabilitation services.

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10 Comments

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10 responses to “The Thoughts of a Father: my journal from 10 years ago . . .Part 5 Epilogue

  1. Finally got to read the whole thing, and felt privileged to do so. Back as young students in Altoona, we did not know that both of us would take a scary journey, but God of course knew and happily, pulled us through. And giving us wonderful spouses certainly helped tremendously. Thank you for sharing this incredible story Dave. And now I get to be one of Brian’s cheerleaders as I pray for him on the next part of his journey. God bless you all!

    • Thanks so much, Liz. You’re right, we’d never have guessed what was ahead for us, but then again, I’m glad that is kept from us and when the time comes, that wonderful “grace that is sufficient” is there in timely fashion when it is needed. For every story like yours and mine, there are millions of others who can attest to this reality. Thank you for sharing yours, I must say it was part of what helped me to decide to “bare my soul” as well. God bless,
      Dave

  2. Cheryl

    This is such an encouragement. You must really think about publishing this. So many people need to see this. We truly have a GREAT GOD

  3. Carla Tuhacek

    Thanks, Dave!

  4. Patrick Hagen

    Wow….. This is all I can muster……. I am simply blown away…… It’s Father’s day, KJ is fast asleep next to me, i’ve wiped my eyes several times and I just realized it’s 1 am. You……are……a……GREAT……..Dad!!! Please don’t deflect that…you are. Happy Father’s Day.

    • Thanks, Pat. Transcribing this journal back in February was a reminder of what a wild ride the last 10 years has been and what a great Father we all have. Hope you had a great Father’s Day!
      Dave

  5. Aunt Bonnie

    I finally mustered up the courage to read this, as I knew it would be an inspiring but tearful thing to read and I was right! As the first person to dance with brian after his accident (at his cousin Patrick and Tiff’s wedding) I can say he is my inspiration on every bad or difficult day I have – God is good even when circumstances are not. Always, Aunt Bonnie

  6. Tina Doyle

    Thanks Dave for sharing the details of your journal. This story, is truly an inspirational one for all to read that would certainly help us overcome difficult times in our lives. Hope all is well with Ryan, you and your entire family.

  7. kristine garner cashatt

    Thank you for sharing your story.

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