“It’s Not About Race”

Please take time to read Kristen Howerton’s excellent piece on a practical response to the Trayvon Martin decision. I just read it and it prompted me to share that I’m sick and tired of hearing fellow white folks glibly state “it’s not about race.” I’ve heard that so many times. Let’s be honest and say what we really mean, To YOU it’s not about race. But if you are a person of color in this country, every day it’s about race. Decisions about where you live, go to school, where you hang out, drive—things that I never think about and many more beyond these—are questions you consider. The civil rights movement helped to make great strides but we are a long way from any kind of racial equality in America. Even here where I live there are restaurants and establishments where blacks are not welcome or at least will be looked down upon.

It is disingenuous and an insult to say “it’s not about race.” In the same way for a man, to YOU it’s not about gender, and for a straight person, to YOU it’s not about sexual orientation. Sure. Simply put, when you’re the dominant group, the privileged group, you don’t get to say that it’s not about…. Because you only see the world from your privileged position. Instead of making statements like this, let’s be honest that we are not color-blind (or gender-blind, or whatever) and let’s dialogue about how race does affect us and how we can be more aware, and listen and try to understand what life is like being black in America where you are more likely to be pulled over, more likely to be labeled “suspicious” and 10 times more likely to be incarcerated. Because when it comes down to it, it is about race.

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Ethical Spending: An Issue of Justice

Last weekend my wife Lisa and I joined over 5,000 others in Philadelphia at an event, now in its third year, called the Justice Conference. This was the first year it was held on the East coast so we took advantage and attended for the first time. As much as the term “life-changing” can be overused, I am inclined to use it to describe these two days, and the next months and years of our lives may prove that phrase to be true, at least for us.

The focus, of course, was the issue of justice throughout the world and particularly as it relates to the mandate of the Church. No matter where you are on the political spectrum (and I know I have Christian friends who are at both ends and the middle) you don’t have to dig too deeply in Scripture to see that justice is a concern of God’s heart. Though we may not all agree on how it is implemented and in particular the role government should play, His concern for the poor, oppressed and marginalized is evident.

Both the Old Testament and Jesus in the New Testament had a lot to say about justice. In Jesus’ very first sermon he proclaimed, “The Spirit of the Lord is upon me, for he has anointed me to bring good news to the poor. He has sent me to proclaim that captives will be released, that the blind will see, that the oppressed will be set free.” (Luke 4:18) And later on in we are reminded that Jesus, according to earlier prophecy, was to “proclaim justice to the nations” and “cause justice to be victorious.” (Matt. 12: 18-21)

I’m going to have lots more to share over the coming weeks, not only from the conference Fair Tradebut also my own heart. But here I want to mention one particular issue that gripped me for the first time during this weekend. As you might expect, the speakers and the many organizations there addressed various issues of injustice such as poverty & hunger, human trafficking and slavery, etc. There is another issue we rarely think about that is far reaching yet one where all of us can make a difference every single day, and that is ethical spending.

How often do we consider the fact that the particular item we just got a deal on at a department store may very well have contributed to injustice in the world either through supporting slave labor, contributing to the cycle of poverty, or ongoing damage being done to God’s creation. I must admit, until this weekend, and specifically, attending a seminar on “Living Simply, Buying Ethically,” this concern was not even on my radar. It is now.

I won’t take the time to go into the issue in detail, but suffice it to say very few of us consider ways that we can use our spending to fix problems rather than creating them. Here’s a mind blowing statistic. If “church people” in the US would focus just 1% of their $2.5 trillion total spending on fair trade products, it could help pull an estimated 25 million people out of extreme poverty. That alone should be enough to make us at least explore this issue. The church preaches a lot about giving/tithing but very little is mentioned about how we use the other 90-plus percent of our money.

A place to begin exploring this issue is with a young organization called Trade As One. I hope you will take the time to check them out. There is also a great site called Better World Shopper and even an app to help determine which companies and stores are most and least supportive of fair trade. I would also encourage you to check out a handy book, the Better World Shopping Guide.

I am so glad we attended this amazing event. I know the conversations we began there are going to help inform a lot of our decision making over the next year, which will include an upcoming relief trip to Haiti the first week of August. I was glad to see people from so many different faith communities, especially a vast number from the Evangelical tradition, which has been slow to take up this cause. That is changing. I was encouraged to see so many 20-somethings at the conference. That gives me hope for the future, that we are raising up a new generation of justice-seekers. Good thing, since, sadly, there is no shortage of injustice in today’s world.

More to come…

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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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The Thoughts of a Father: my journal from 10 years ago . . .Part 4

“Return of Brian”

April 11, Thursday
Today the article came out in the Town and Country newspaper. Brian is on the front page! The article extends over 3 pages and includes 4 photos. Jake did a great job with the article. I bought 26 copies at the 7-11 and the guy behind the counter asked why I wanted all of them. I pointed to Brian’s picture on the cover and said, “That’s my son!” I mailed a lot of copies out to relatives. (Entire text of the article is here: Town & Country article 4-11-02 )

We went to Philly to see Brian this evening. He is SO skinny! He’s now down to 115 pounds. They are concerned at Magee because he is getting weaker. We have to find ways to help fatten him up. His fingers are moving a little better and tonight he stood in place under his own power (just briefly)! That was great to see! I can’t wait to see him doing his walking exercises again tomorrow. Also the Sonic Flood concert is tomorrow night. They’ve really been talking up Brian on the radio. What a day tomorrow is shaping up to be!

April 12, Friday
What a day! I got to drive down to Magee this afternoon and spend a lot of time with Brian. It was wonderful to watch him during his walking exercises. He is no longer in the Arjo frame apparatus, but he just has a big belt around his waist and two therapists are holding him up with it.                

There he was, not only taking some steps but also holding up his own weight (very timid steps, and not much with the right leg yet, but steps nonetheless!). Wow! Such a great sight to see; he sure is making progress, praise the Lord! He’ll be home in 3 weeks. We’ve got a lot to learn and a lot to do yet to get ready for his coming home. He wasn’t able to go with me this evening because he is still not feeling well.

At the Sonic Flood concert tonight they raised $2,300 for Brian. I got to go backstage and meet the band before the show. Then I came up on stage as Dave, the station manager, handed me the check. I was given a couple minutes to talk about Brian, his story, and the great progress he has been making. I told them about his walking today and the place went nuts! I wish Brian could have been here to see that.

First steps without Arjo

April 13, Saturday
I enjoyed my time with Brian yesterday. It was a fun visit. He and I had cheese steaks together. He is very anxious to get home, though. We’ll work on fattening him up (he’s now down to 110). We’re going to get some high protein bars or something like that to try to get some weight back on him.

Lisa is away this weekend at a women’s retreat. I went over to the church this afternoon to put some finishing touches on my message for Sunday. I’m speaking in both services on Romans 8:28 as it relates to Brian’s situation. [Romans 8:28 – And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them.] My message will be part sermon and part my story from the past 8 weeks.

Tonight was such a nice warm night, I took a walk and ended up at the high school baseball field, just as it started pouring down rain. I sat in the dark dugout and it brought back so many memories looking out at the field. I recalled the time Brian scored the winning run in a game as a pinch runner, with a cast on from a broken wrist. As he rounded third, I never saw a more determined look in his face. He was determined to score, and he did. I decided to use that as an illustration in tomorrow’s sermon. I hope I can get through it.

April 14, Sunday
Today began very foggy but then turned into the most beautiful, warm sunny day. I got to church very early, while it was still dark. I gave the message in both services and it went really well. I only teared up a bit when I used my baseball illustration. I told them how it came to me last evening as I sat in a dugout in the rain. I talked about Brian’s rounding third base in that game, with such determination to score that winning run. I told them I see that same face on Brian every single day, as he is even more determined that we will walk again on his own. A lot of people came up to me after each service and told me how the message made an impact on them. One man could hardly speak he was crying so much.

I got my wife back today which was great. I missed her. She had a great time at the retreat, but it sure was nice to have her back home. Where would I be without her love and support these last 8 weeks? We have needed one another’s encouragement throughout this whole time. There are days when I am struggling and she picks me up, and vice versa.

Tonight we all went into Magee and ate with Brian (Jake’s take-out, of course), and had a wonderful evening with him. Tomorrow I’m driving to Philly to have lunch with Art, an old friend from our Boston days.

April 15, Monday
Today I took off work so I could drive down to Magee and spend the day. I also had a lunch meeting with Art, our friend whom I haven’t seen in about 8 years. He was speaking this past weekend at a church in Lancaster County. We had a nice lunch together at Jake’s, spending time getting caught up on what’s been happening through the years. A lot of the discussion centered around what has been happening with our family in the last 2 months. After lunch we went to Magee and spent a little time with Brian. It was so good to see my old friend, but Brian was really tired today.

They started giving Brian a drug called Baclofen which helps to loosen his muscles and eliminate some of the tight spasticity in his legs. One of the side effects is it makes you really tired. I stayed and ate dinner with Brian. He ate well (more Jake’s—I swear we’re keeping them in business!) Today during his walking therapy they tried arm cuff crutches, but it was just too awkward for him to handle. Too soon, I guess. Someday, we hope, he’ll be doing that on his own.

April 16, Tuesday
It’s hard to believe that today is 8 weeks since the accident. I looked back at day one in my journal which starts with, “Today our lives have changed forever.” Our lives as a family truly have changed so much and so fast that these 8 weeks are just a blur to me. The real work, though, is yet to come. Right now Brian is cared for by professionals in a hospital. Brian comes home to us in just a few short weeks and it will really turn our home life upside down. But it will be so nice just to have him home again and to be together as a family. And no more driving down to Philadelphia every other day!

We’re still kind of in a panic about the housing situation. Our house isn’t very accessible for a wheelchair or a good place for Brian and his friends to hang out. For now, Brian will have to be on the first floor and will take up a big part of the “living space” with his bedroom. God will have to work this all out. We keep saying that he is taking care of Brian and doing great things in his life, so we can trust him to take care of the housing situation. That’s all we can do.

April 17, Wednesday
We’re in the midst of a crazy April heat wave. Today it was 95 degrees! With all the window air conditioners taken out of our house because of the painting and work we’ve been doing, it is really hot, especially on the third floor. Today was a downer regarding our housing situation. We went with Rich, our realtor, to look at a house but it really won’t suit our needs for Brian. We’re running out of house options. We can’t afford to build a new house at Brooke Run, the development near our house, so today we had to withdraw our deposit on the lot that we had put down last week. The problem is there are not that many houses on the market in our price range. The ones that are do not have the space and accessibility that Brian needs. We’ll just keep looking. I know the Lord has a plan and his timing is best. It’s just hard waiting on it. I finished painting the pantry tonight. Another work team is coming Saturday and hopefully then we will be finished. Brian won’t recognize this place!

April 18, Thursday
Today was a looong day. As always, things are very busy at church on Thursdays, making final preparations for the services on Sunday. Then tonight there was a board meeting that went until 11 p.m. After staying at church to finish redoing Brian’s web site and some other things, I got home around midnight. I’m beat and I have a busy weekend coming up. I put the entire town and country newspaper article on Brian’s web site so all could read it.

A friend of Lisa’s emailed me today and said that her church, Zion Mennonite, is sending $2,000 to Brian’s fund! That just floored me. It is so overwhelming; no one there knows Brian or us. It is simply another example, not only of god’s faithfulness, but of the love and support of the body of Christ and of our wonderful community. What would we do without these people?

April 19, Friday
Down to Magee this morning for some training and to spend the day with Brian. The plan is now to send him home on Thursday, May 2. We still have a lot to do to get ready for that. When Lisa and I arrived at Magee, Brian was doing his walking therapy early. And he was using the parallel bars (with help). He did pretty well though his muscles are visibly weaker due to the Baclofen that he is being given.

We had a nice day with him, eating lunch and dinner together. We received training in how to take him up and down small flights of stairs in his chair, getting him in and out of the shower, and helping him with going up the stairs to the next floor on his rear. I’m beginning to feel better and more prepared about his coming home. We are all anxious to have him back with us, but it will be quite an adjustment for all of us.

April 20, Saturday
Another big work party today. Hopefully this begins our final push to finish the task. We did get a lot accomplished. The day started out a bit rainy and overcast but it cleared up enough to get most of the outside painting done. The inside painting is pretty much all complete. This house looks completely different from when we started it. We could have never gotten all this done by ourselves. What a great help all these work teams have been. Now we simply trust god to open the door for a new place. We can’t consider putting this house on the market until we’ve found another place that suits our needs. We must trust your timing, Lord, but please make it soon! We worked so hard today we were just too tired to bring ourselves to drive down to Philly. We’ll see Brian tomorrow when the HBC youth group comes down again to visit with him.

April 21, Sunday
Today we had a Small Group leader’s luncheon after church. Our small group that meets in our home hasn’t met since Brian’s accident. I really miss that. I’m hoping after Brian is home we may get back to meeting every other week or so. It may be a problem with the living room soon being turned into Brian’s bedroom. We’ll see.

Hilltown Baptist Youth Group

Tonight was another HBC youth group gathering at Magee. There were a lot more youth there tonight than there were at the first meeting. A number of them shared some testimonies from their lives. I spoke about God’s faithfulness through all that we have been through recently, and challenged the kids to see God working in their lives and big and small ways, not just in the hard times either. Brian’s neck was really hurting him this evening. We’ll have to ask the doctor about that. He also seemed very tired. Only another 10 days in Magee and he comes home to us!

April 22, Monday
I was so tired today at the office. It seems like every two weeks or so (seems like always a Monday, too) I need to crash for a full day to rest and recuperate from the weariness of travel, emotional stress, whatever. Today was one of those “crash days” but I spent it at the office. I didn’t get much accomplished.

Today a big decision was made in Amy’s life. She has decided to attend Lebanon Valley College. LVC increased the scholarship they were offering to one-half off the tuition and that really sealed the deal for all of us. That’s a real load off our minds because we had until May 1 to decide. Sending Amy off to college in August will be an exciting and emotional time for all of us. Brian has taken up so much of our lives and our schedules, it’s easy to miss that we have other major events in the lives of our other 3 children as well. One of my fears through all of this is that they will be feeling neglected. Our entire lives revolve around our son right now. Our daughters have been so understanding and helpful through all of this. And patient!

April 23, Tuesday
I left the office early today so we could all go down to Philly to see Brian. We found him with his new roommate, Nick, eating dinner in the cafeteria—Swedish meatballs and noodles. Not too bad for hospital food. It was such a nice day we decided to go up to the roof level of the hospital. Camrin and I played pool and Brian watched. While we played we were waiting our turn to have Brian’s portrait sketched by a well-known area artist. (Steve something, I can’t remember his last name). He is a paraplegic and was formerly a patient at Magee. On Tuesday nights he comes in to the hospital and does sketches of patients for free. It is his way of giving back. We see a lot of former patients here, like Adam Taliaferro. Steve had just enough time to do Brian’s portrait at the end of the night. He did a really nice job. I noticed that all through the evening Brian was very quiet. Very un-Brian like.

April 24, Wednesday
I have to say the closer we get to Brian’s coming home, the more apprehensive we get. We are torn. We’re so excited about finally having him home under our roof again after 2-plus months, but it’s a little scary his coming home as a quadriplegic. Others have been taking care of him night and day all this time and now it will be up to us. So many questions. We are prepared for the fact that it will mean major lifestyle changes for us and schedule changes at home. We’re still not 100% sure even where Brian is going to go, though it looks like the living room is still the best option.

At Magee they are back to using the Arjo walking apparatus again with Brian. He’s just not able to hold up his weight because his muscle tone is not strong enough. In some ways it seems like Brian’s progress has slowed down or even gone backwards a bit. I think he might be a little discouraged by that. He hasn’t been his normal jovial self. I think we might be a little discouraged by that, too.

April 25, Thursday
Today was discouraging for us. Brian has clearly slowed down in his walking progress. Even Liz, his therapist, has noticed that. I spoke with her today and she’s not at all comfortable with the current plan to bump Brian up the stairs to use the shower at home. Once he’s at the top then we can’t get him into his chair. He’s is not at the point where he can help you if you are trying to get him up. She is now suggesting a totally different option, a chair lift to be installed in our home. That could be a challenge with the narrow steps in our old Victorian house.

They are now saying they’re not sure where Brian will be in his abilities come this Fall. The folks at Magee think we should get a power wheelchair for him rather than a manual one. Insurance will pay for only one or the other. A power one is loads more expensive. The problem is, you kind of need to guess where he will be in his abilities a month from now, 6 months from now. We’re a bit discouraged by all the latest happenings. Lisa put out on the prayer chain to request people pray for our discouragement and for the decisions we have to make. I’m more confused than discouraged. A power chair or manual chair? Brian’s bedroom in the living room or upstairs? What is most frustrating is we only have a few days to decide.

April 26, Friday
Tonight Lisa, Brian and I discussed some of our confusing issues to try to come to a decision. His feeling is we should go with the stair lift being installed in our home so his bedroom can be upstairs. As far as the wheelchair goes, I think we have decided we should order both the power chair and the manual chair and the insurance can pay for the power one. We’ll pay for the manual chair. The toughest thing about all of these decisions is you have to guess where Brian will be in his abilities 3 or 4 months or more down the road. God, only you know that. I wish I could see into the future. I know it will take some major adjustments by all of us in the next few weeks, but I think we now have a plan we are all comfortable with including Brian and his “team.” We will rent a chair life and put Brian’s bedroom on the second floor. That way the living room can remain a living room and Brian can have his friends in there when they come to visit. We’re going to take this one day at a time, Lord!

April 27, Saturday
We received a letter today from a couple we met during graduate school at Gordon-Conwell. They have been working with a Christian ministry in Russia, and came home to the states last year because their little girl, Emily, had cancer. She went to be with Jesus on March 3. The letter we received described the beautiful memorial service they had for their daughter. What a terribly painful thing it must be to lose a child. It has been such a difficult and emotional experience for us the past 2 months, but it’s nothing compared to our friends’ heartache. Yet, God’s grace is sufficient to see us both through whatever trials may come our way. God has given us a lot of comfort and peace through all of this, and it has come through other people, through our church family, the loving folks in our community. It’s how we make it through another day, how our friends who lost their child are making it through, and how we will continue to make it through all that lies ahead of us with Brian and our family.

April 28, Sunday
We had such a nice visit with Brian this evening. It hit me that this is the last Sunday evening we would spend at Magee. We’re feeling a little less apprehensive about Brian’s coming home. We have the equipment coming in that we need, including a hospital bed and the stair glide. We’re starting to feel like we’re ready for him. I’m sure it’s going to be a day to day learning experience for all of us especially at first.

Tonight I helped Brian from his chair to a standing position and let go of him. He can stand there on his own for quite a while (he even started “dancing” with just his arms and upper body moving—crazy kid) He was also doing a few knee bends. He has gotten very good at transferring himself in and out of his chair into bed, etc. He’s becoming more independent which is good. This is going to be a very busy week. Let’s get this boy home!

April 29, Monday
I only worked half a day today at church so I could come home and work on a few last minute details of getting the house ready for the big “Return of Brian.” (sounds like a movie). I stayed up really late (later than I should have) working on moving my study into the little room and starting to move all the bedrooms around. Everyone is rotating rooms. Brian goes into Camrin and Lindsey’s room, Lindsey goes into what used to be my study, the study goes into the little room, and Camrin for the first time gets her own room on the third floor in what used to be Brian’s bedroom. Amy stays in her third floor bedroom. I’m tired just thinking about the rest of the week. But it will be so good to be a family again, all six of us living under the same roof. Brian’s hospital bed and stair glide are coming this week. Tomorrow night at Magee Brian and I finish our training (“bathroom” stuff) and then we’re all set!

April 30, Tuesday
Ten weeks since the accident. Today was a very tiring and full day. I started out tired already from the night before. After working all day on the house and more moving tasks, we headed into Magee for our last evening visit with the boy (yeah!) We had a nice time, just Lisa, Brian and I. A man by the name of Rob came in for a while. What a great guy! A tree fell on him some years ago and he is now a paraplegic. He wheeled into the family room and spent some time telling us his story. He had a lot of good advice for us and for Brian, and he has a tremendously positive spirit about him.

Tonight Brian and I did our bowel and catheter training. Not the most pleasant thing to do but very important and necessary. When you love your kids you do what you have to do for them, simply because you love them. I think Brian and I will just take it in stride and it will all become second nature after awhile.

Our next trip back to Magee, on Thursday, Brian leaves with us—for good! I won’t miss those trips down the Schuylkill expressway!

May 1, Wednesday
Today was my only full day at work this week. I stayed at HBC through most of the day, long enough to get everything done I needed to get done for Sunday. Then I went home and worked on getting the house finished up for Brian’s arrival tomorrow. It always seems like there are still things remaining to get done. I guess we’ll never be fully ready, but ready or not, here he comes! Camrin and I worked some more on finishing up her room. We did some painting and put in a new rug and moved her bed into her new bedroom. Lindsey and Brian may have to share a room just for a couple days until her room is totally ready. I know the next few days are going to be really tiring. There’s a lot to learn and a whole new daily routine to practice with Brian. His bed finally came today. Friday the stair glide comes.

May 2, Thursday
Brian comes home!!! And Lindsey is 12 today.

Today we finally got to bring Brian home again after 72 days of living at two hospitals and being taken care of night and day by medical professionals. Now he is ours again. We went into Magee about 11 am. As we were pulling in, Mary, another teen in the spinal cord unit we had gotten to know, was also leaving. She was walking with crutches! We were so proud of her. We had hoped the same for Brian and we still pray that will be the case for him. Today he is leaving in a wheelchair, but coming home nonetheless.

It took us quite a while to find and pack up all his “stuff.” We got a complete run down on all his meds and further instruction on his care. It was difficult saying goodbye to all his “family” there at Magee, both patients and caregivers. They will all miss him and how Brian livened up the place.

Brian leaves Magee Rehab

We had a great ride home and a great reunion when we got there. We are a family again! And Lindsey is 12 today! We have many things to celebrate. The stair glide isn’t coming until tomorrow, so getting Brian up the stairs and into his new bed was a ton of work. Tomorrow the adventure begins!

May 3, Friday
After getting the girls off to school, Brian and I do our first morning routine together. It was kind of rough but it will get smoother as time goes on. Taking care of all of Brian’s “bathroom needs” was a trip. It’s not something a parent expects to do, but I love my son and don’t think twice about it. Brian and I are able to laugh at my mistakes, which puts us both at ease. The shower was interesting, to say the least. I got more wet than Brian did!

It’s really tough maneuvering around this house in the wheelchair. The stair glide was installed today and boy what a help that is! We got the meds routine down pretty well. For awhile I must give him a daily shot of blood thinner in his stomach. It wasn’t as hard as I thought.

Brian got fitted for his tuxedo today. He is going to the prom with Sarah. Some of his friends came over to the house to get him and take him out to eat and then over to a friend’s house. His friends are so wonderful and care for him so well. They are not bothered in the least by his disabilities, getting him and his wheelchair in the car, anything. They don’t even think twice about it. Brian said tonight, “This is the most fun I’ve had in a long time.”

Taking care of Brian is going to get me back into shape. All I know is I am beat. I fall into bed at day’s end. It was a good day, though. My son is home again.

TOMORROW: Part 5  Epilogue, the last 10 years, final thoughts

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The Thoughts of a Father: my journal from 10 years ago . . .Part 3

“You are one in a million”

March 23, Saturday
We’re still flying high from yesterday’s good news at the end of the day, that they’re going to try to walk Brian on Monday. Lisa and I are also going down to Magee on Monday for the full day to do some family training. We are so excited to see what we hope may be his first steps! (and we hope many more to come after that!) Yesterday started out on such a low and ended up on such a high note.

Today another work party crew came over to work on the house. It is really coming along nicely. Everyone seems to have such fun working together. I just don’t know what we would do without this wonderful people. Today we got a lot of outside painting done. There is only a little bit left to do. Inside, painting started on the second floor. The girls’ room is almost complete, and the lobby, stairway and halls are stripped of wallpaper and ready to paint next Saturday. A few more weeks and we should be all done. We’ll get the house on the market, then all we need is a buyer, and a place to move that will meet our needs. Will Brian be in a chair or walking?

March 24, Sunday
Palm Sunday. We had a great time at church today as we celebrated and remembered Jesus’ final ride into Jerusalem. To die. What love and sacrifice. The church youth group did a wonderful thing for Brian this evening. They had their regular Sunday night youth gathering at Magee Rehabilitation Hospital, instead of at the church, so Brian could be a part. About 40 youth and adult leaders drove all the way down to Philly and we all had such a great time. We played a game where some people were bad guys, some were police and some were doctors. The trick was to figure out who killed who, sort of like Clue. Brian’s great line to give himself an alibi for not killing someone: “I couldn’t have done it, they put me in bed here at 8.” That got a big laugh. Everyone thoroughly enjoyed themselves. We sang and Pastor Rich gave a brief message and, of course, we ate. Brian seemed to enjoy it and all the kids were glad to see him. It was so nice of them to do this!

March 25, Monday
Today was a very, very big day for us and for Brian. Lisa and I drove down to Magee for the entire day to do some family training and to watch Brian in action during his therapy. Also today was the big day when they are going to try to walk Brian. We got to meet Liz, his physical therapist, Kelly his occupational therapist, and Jessica his recreational therapist. He has quite   a team and they all tell us how much they enjoy Brian and what a character he is. (We already know that.) It was good to be there with him all day and see how they are working all the muscles in his legs. He is doing so well and all his therapists say they are pleased with his progress. We also got to eat lunch with him which was nice.

Brian was so very tired today. We let him miss his after lunch meetings so he could nap until 3:15. That’s when the show began. They got him up out of his wheelchair and put him in the contraption called an Arjo walker. It straps him in and has a place to rest his arms and handles to hold on to. The bottom has wheels. He had 4 or 5 therapists all working together to slowly move him while one of them was on each side working his legs. When I first saw him moving, I got very emotional. He was more “walking” than doing steps on his own, but he was up and moving slowly down a hallway.

His left leg did pretty well. It could move a bit, with some help. The right one needed a lot of help from the therapists. I think half of the entire hospital staff was in the hall watching. I can’t even describe how I felt. I took photos for his web site. All I can say is it was a glorious sight to behold—for the first time since I saw him leave for school on that awful day, my son was upright. And moving. All I can say is Thank you God. Thank you for what I saw today, and for what you are doing. Today gave us hope.

First time in the Arjo walker

March 26, Tuesday
Today I updated Brian’s web site with the pictures I took yesterday of him using the walking apparatus. I know so many people were waiting to see these great shots of his first attempt at steps. So many people have been praying for him and these pics are some answers to those prayers. It’s hard to believe today is 5 weeks since Brian’s accident. In some ways it seems like a year. And in other ways these past 35 days have been simply a blur.

When I look back in this journal at my thoughts in those early days, they are really filled with emotion and confusion and questions. Some of those questions have been answered but most of the answers still remain in the Lord’s hands. Will Brian walk on his own someday? Will he regain the use of his hands, his bodily functions? Lord, that is our prayer and that is our hope and desire. Help us to wait on you as you answer those questions, in your way, in your time.

March 27, Wednesday
All day today I was looking forward with great anticipation to tonight’s Philadelphia 76ers basketball game. A group of the Magee Rehab patients, including Brian, were being bussed there and I was given a ticket to join them. I was so excited, I got to the First Union Center so early that I couldn’t get in to the seating area for 45 minutes. Brian and his Magee friends arrived just after I found our seats. We had pretty decent seats, in one of the wheelchair sections. Brian was so happy to see me. What a fun time we had!

It was so good just to be with him outside of a hospital, the first time since his accident. We laughed a lot, ate all kinds of junk food and had the best time a father and son could have together. The Sixers lost, it was a lousy game, but we had a blast anyway. Even though his birthday isn’t until April 5th, I had arranged to get Brian’s name up on the scoreboard and the whole section then sang happy birthday to him. He was really surprised. Brian and his fellow patients had to leave before the game was over. I was sad to see him go. I wished so badly that he was going home with me. That will happen soon enough. 

March 28, Thursday
Today I was still flying high from the great time Brian and I had at the Sixers game last night. I struggled so much on the way home from the game, though. I really found myself saddened with not having him in the car heading home, not having him walking out to the car with me after the game or running around in the parking lot, acting like fools, as we used to do. I’m getting better with handling this tremendous change in our lives, but I still fought back tears as I thought about some things that I most likely will never do with him again. I do pray that someday we’ll be back at a Sixers or Phillies game and he’ll be in a regular seat and we’ll walk to the car together. I’m still praying for a miracle.

At the Sixers game

Tonight at worship team rehearsal I got some discouraging news. Today Brian has a bladder infection and a fever of 104 degrees. He feels too sick to even get out of bed. The foli catheter is back in (he had been “going” on his own with an external catheter, which was a real breakthrough). We prayed for him at the rehearsal and I broke down again. I was so sad for him. I wanted to be there. I know it’s a small setback but it’s tough not being with him.

March 29, Friday
Good Friday. Lisa reminded me this morning that Brian was born on a Good Friday, April 5, 1985. I remembered the little knit hats they put on newborns. For Brian’s and the babies’ that weekend they had little bunny ears attached to them. The oft-asked question, “What’s GOOD about Good Friday?” Jesus made a great sacrifice of love for me. That cross was my cross. Those nails were my nails. Thanks you, Lord, for that great love. Let Brian be reminded of that love today.

We won’t see our son today. But on Monday I’m going down to Magee for some instruction on how to get him in and out of the car. And next Wednesday we get to have him for the day!! We’ll be taking him to Lehigh Valley hospital to see Dr. Mark Li, the neurosurgeon who repaired his neck. I know Brian is really looking forward to showing Dr. Li his progress. They told us today he will be in Magee 4 more weeks, and then 5 days a week at Magee’s outpatient center called Riverfront, near Penn’s Landing in Philly. I’m not sure how we are going to get him down to Philly 5 days a week and we told them that. They’ll reconsider the plan next week.

Tonight there was a powerful, worshipful Good Friday service at church. Such a beautiful reminder of Christ’s love and sacrifice for us. As always, I wish Brian was there with us. I took time to pray that God would remind him of this very special day.

March 30, Saturday
Today another big work party at our house. It was a beautiful sunny day, so most of the outside painting was completed. Only a little trim work and the tin roofs need to be done. Rich, our friend and realtor came over and we went to Brooke Run, a new development near us, to see some of the homes being built there. It looks like that might be a possibility, as long as we can get the builder to agree to customize one of these models for Brian’s needs.

After the work crew left we went down to Philly to see Brian. He’s feeling much better and recovering from his bladder infection. He looked so thin to us tonight. Lisa hasn’t seen him since Monday and she was really surprised at how thin he has gotten. He was 132 pounds before his accident and down to 120 now. We’re going to start getting him milkshakes at Jake’s when we come to see him. [Jake’s was a local joint down the street from Magee that had great cheese steaks and delicious milkshakes] Maybe that will help fatten him up!

March 31, Sunday
Easter Sunday. “He is risen! He is risen indeed!” We shouted that responsively as a congregation this morning. “He is risen,” kind of took on another meaning as I shared an update in both services regarding Brian’s progress. As I spoke they showed a slide of Brian standing up in his walking frame from the past week’s therapy. He is risen indeed, haha. Yes! God gets the glory for this resurrection as well. The whole place went nuts when Brian’s picture went up on the screen. It was so moving. A little girl, Emily, gave me a picture that she drew of an angel and a person with their arms in the air and what looks like the empty tomb. At the bottom it says To: Brian, From: Emily. So sweet. [I still have that picture, tucked inside my journal]

He has risen!

We had our Easter dinner and then drove down to see Brian. I felt bad because he had been waiting for us to come and bring him a ham dinner. So we ate with him as soon as we got there. While he had his ham, we had cake! Lisa and I went out in the rain to get Brian a milkshake only to find that Jake’s was closed. We found a store that was open and got Brian some Klondike bars. We need to fatten up that boy! I’m looking forward to being with him all day tomorrow.

April 1, Monday
I arrived at Magee this morning at 11. Today I went down early so that I could get instruction on transferring Brian from his wheelchair to the car seat using a transfer board. Then on Wednesday we get to have him for the day!

Brian is such a character. Each time I come to Magee I find out he has found some new way to “torment” the staff and the nurses. Today it was “guess what’s in the bag.” He had a little plastic bag of what he claims is “bloody mucous” or some other gross disgusting thing that he is showing to the staff (actually it is just a smashed up pill). No wonder they want to send him home early.

We practiced doing the transfer in and out of the car. Brian and I were both given an “A” by the therapist. We did great! Of course it helps that Brian weighs next to nothing. After lunch I was pushing him in his wheelchair and I tried to sneak him out of the hospital to go down the block to Jake’s on this beautiful sunny day. But we were caught by the security people. After getting what seemed like 100 signatures from doctors and nurses we finally got a pass and legally got to go outside. We had such a great time sharing a milkshake at Jake’s and then watching the skateboarders at the “Love” park in downtown Philly. We had so much fun that I hated to leave. It was our first time outside together. I can’t wait for Wednesday!

April 2, Tuesday
Today is 6 weeks since the accident, 5 weeks total at Magee. It’s not that long, really. Just 35 days in the rehab hospital and look how far Brian has come. He was transferred from Lehigh Valley Hospital to Magee in an ambulance, unable to sit up, unable to move his hands, legs, feet or toes. Now tomorrow he is going to be with us for the day, sitting up in a wheelchair, with movement in both his legs and his feet. I can’t wait for tomorrow. My favorite part will be seeing Dr. Li, the neurosurgeon, and also all the LVH PICU staff.

Today a reporter from the Town and Country newspaper called. He wants to do an article on Brian. He will be interviewing all of us tomorrow at Jeff & Luanne’s house and then a bunch of Brian’s high school friends will join us there for supper. What a day it’s going to be!

April 3, Wednesday  Written at the top of the journal page: It was such a tremendous day, I’m breaking the rules and taking up 2 pages today!
TODAY WAS THE BEST DAY EVER! We got to have Brian with us for the first time. We picked him up at 10 am at Magee and the first place we went was the orthodontist to have his braces adjusted. The doctor and the staff there were happy to see him. It was so much fun just being with our son and having him with us in the car.

At 1 p.m. we went to the appointment we had so been looking forward to, with Dr. Li, Brian’s neurosurgeon. He came into the exam room and said, “Brian, I hear you’ve been doing some amazing things. Let me see them.” Brian showed off his leg movements. Then Dr. Li looked at us and said, very matter-of-factly, “You know he’s going to walk again.” I lost it right there in the doctor’s office. He said it may take a year, but Brian will walk. He then looked at Brian and said, “I hope you realize this should not be happening, you are one in a million.” HALLELUJAH! What wonderful news!!

To hear this from this brilliant young surgeon [barely 40 years old, MD from Harvard Medical School, PhD from Cal Tech, chief neurosurgeon at LVH] who seemed as amazed as all of us were. “This is not supposed to be happening, Brian. You are one in a million.” It was exactly 6 weeks ago today that Dr. Li performed Brian’s neck surgery, saw Brian’s spinal cord, put the plate in his neck, and afterwards told us Brian had “less than 1000 to 1 chance” he would walk again. Praise the Lord! [As we were with him that day we thanked Dr. Li for the wonderful job he had done, and his statement back to us I will never forget: “I’ll take credit for fixing Brian’s neck, but somebody else gave him back his legs.”]

From Dr Li we went to see the Lehigh Valley Hospital PICU staff who worked round the clock to care for Brian that first week. They were so happy to see him and were also amazed at his progress. After that we went to Jeff and Luanne’s house where we were interviewed by Jake, a reporter for the Town and Country newspaper. They are doing a feature story on Brian. After the interview and a lot of photos, about 30 of Brian’s friends joined us for a little party. What a great day!

Brian was so sad to have to go back to Magee. After dropping him off at the hospital, I made some calls on the drive home. Every time I recounted the story of our time with Dr. Li, I could not do it without crying. Today was such an emotional day. I just think of Matthew 19:26, “With God all things are possible.”

April 4, Thursday
Still flying high from yesterday. I told everyone at church about the whole day, especially the appointment with Dr. Li. I made some calls to tell other friends and relatives as well. I just can’t get through telling that story without crying. I always break down when I repeat Dr. Li’s words just the way he said them, “You know he’s going to walk again.” It was just so wonderful hearing those words.

Brian with Dr. Mark Li

It was a very busy day today at Hilltown Baptist Church. Missing Monday and Wednesday really put me behind schedule. I stayed in the office until 7 p.m. doing preparations for Sunday, then I took some time to update Brian’s web site with photos and stories from yesterday. So many people are following this story and want to see and hear what God is doing in Brian’s life. I wanted to get all that information on his site before I left so these people could get the latest news. I am so thankful for all their prayers.

Tomorrow is another big day. Brian turns 17.

April 5, Friday
Wow, Brian is 17. I can’t believe it. All my kids are growing up so fast. It seems like only yesterday Brian was climbing on top of the refrigerator. [I have to explain this. When Brian was not even 3 years old, we couldn’t find him one day, only to look up and see he had somehow crawled on top of the refrigerator. Then there was the time, just a year or two later, when the church nursery school called us in a panic to say they couldn’t find him. When we rushed there he had already been found, after climbing down from the huge oak tree he was hiding in. To prove he could do that, we had him climb it again while we all stood and watched. We knew then we were in for some challenging times!]

We had a bouquet of balloons sent to him today. We drove down to Magee early tonight because we had gotten a pass to take him out for his birthday. We all went to the TGI Fridays just down the street from the hospital. We had such a nice family evening together. It’s too bad Amy had to work tonight. As we were getting into the elevator to go up to the second floor restaurant, a bunch of people were getting out and they looked at Brian with that “Oh a poor kid in a wheelchair” look. Brian made a comment about that when we got into the elevator telling us that is why he doesn’t want to spend his life in the chair—because of the way people look at you. From the way things seem to be going, he may be out of his chair before we know it. This experience is helping all of us become more sensitive to the needs and the world of those who are disabled.

While we were eating, we noticed a table of women nearby who were having a good time and enjoying one another’s company. After they left, their waitress brought a note to us from one of the women at that table. The note said they were all going to be at a prayer gathering later that night and that they would pray for our boy. That was such a loving gesture from someone whose name I’ll never know, but who touched me deeply.

April 6, Saturday
Another work party today! Not as many people came today but we got a LOT done. Our friend Doug put down a new kitchen floor for us. It looks fantastic! Also, today a car wash fundraiser was held for Brian at Walmart. [Often with traumatic injuries requiring long hospital stays and extended rehabilitation, there are significant expenses not covered by insurance, including transportation, construction and remodeling of a home, other medical expenses many other things. We learned that reality very quickly. A number of fundraisers were held by groups of caring and generous people which were very, very helpful to us in helping to defray some of those expenses.]

There were a lot of kids helping at the car wash, both from Hilltown Baptist Church and Upper Perkiomen High School. Lisa and Lindsey went down to help at the car wash. When they came back, they said some people were giving as much as a $100 donation for their car wash (I hope the kids did a good job on that guy’s car!) In the end they raised $2,030, and Walmart matched that, making a total of $4,060. Wow! Praise the Lord for such a beautiful day and for the generosity of all those folks.

We drove down to Magee later in the day and surprised Brian with a party on the 6th floor. Lots of his friends were there, along with many of their parents. Lisa’s parents were there as well. We had a blast and you could tell that Brian enjoyed it. I was beat when I got home and I wasn’t even washing cars today. We turn the clocks ahead tonight. I’m going to miss that hour of sleep!

April 7, Sunday
I really needed that hour of sleep I lost last night! I was sooo tired this morning going into church. After the service, John came up to me. His daughter, Amy, works as a physician’s assistant for Dr. Li, Brian’s neurosurgeon. John told me that he and Amy had lunch with Dr. Li a couple weeks ago in New York City. John hears my regular updates on Brian in church and was telling Dr. Li about Brian’s great progress. John recounted the conversation. He said Dr. Li asked, “Are you sure he’s really moving and it’s not just a flicker?”

[I must confess, I couldn’t quite decipher that last word in my journal (bad handwriting). I wasn’t sure if “flicker” fit the context. But I looked it up and it can mean “a brief movement or tremor.” So I think I deciphered my handwriting correctly.] John said Dr. Li went on to say, “If he’s really moving it, then it is a miracle. I told the Deloziers 1000 to 1. I should have told them a million to one.” What a great thing to hear! According to the doc it is a miracle.

When I got home from church this afternoon, I was so tired I just went to sleep. Lisa and the girls drove down to see Brian. Every couple of weeks or so I simply need to crash like today. Then I’m recharged for another couple weeks.

April 8, Monday
It was nice checking in on Brian’s web site today. His guestbook is approaching 500 messages! I took time to update the information on his home page regarding the money raised at the car wash. Pastor Rich told me today that the final tally (with the Walmart matching money) is actually $4,800! That is so amazing.

We didn’t go down to see Brian tonight. I worked on painting the pantry. We did talk to Brian on the phone. He is coming down with a cold. He did say that he is making progress in the Arjo walking frame. Tonight I also got a call from Kristine, one of the DJ’s at 88.9 Word-FM. She wants me to get up during intermission at the Sonic Flood concert and give an update on Brian. They are using the concert as a fundraising for  him and promoting it on their web site. I told her that there might be a possibility I could get Brian there. She was excited about that. I’ll check tomorrow to see if they will let me have him out that late. That would be awesome.

April 9, Tuesday
Tonight Lisa and the girls drove down to see Brian while I went to Lisa’s parents’ house to give them some help on their new computer. Lisa said that tonight Brian was talking about his plans to go to the prom in May. He had been making plans to go with his friend Sarah. He had told us earlier he does not want to go to the prom in a wheelchair. I think Sarah helped him change his mind on that. Maybe if things keep moving along he won’t be in that chair, who knows?

Tomorrow they are going to start Brian on some kind of medication that will help loosen his leg muscles. His muscles are tightening up—they call it spasticity—and it prohibits him from bending and freely moving his legs. I noticed that last week when I was getting him in and out of the car. Bending his legs was like bending a steel rod. The only drawback from the medicine is that it will make his muscles weaker and it will make him more tired. But he needs to be able to move his legs fluidly, especially while practicing his walking in the Arjo. I hope to hear today if they will let me have Brian Friday night.

April 10, Wednesday
Today Brian’s cold seems to be getting worse. He is not feeling well at all. They even did a chest x-ray to make sure he didn’t have pneumonia. His lungs were in pretty good shape. But this nasty cold may keep him from being able to come out to the sonic Flood concert on Friday night. It is much more important for him to get the rest he needs.

Tomorrow the newspaper article is going to come out about Brian. I can’t wait to see it. We had a meeting at church tonight regarding our housing needs. It’s going to take the Lord’s doing to work out this whole housing thing. We just put it in your hands, Lord, like we do with Brian. If God can do a miracle and enable Brian to walk then we can surely trust him for our housing situation. Friday during the day I get to go see Brian. He’s doing some walking training without the Arjo apparatus!

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The Thoughts of a Father: my journal from 10 years ago . . .Part 2

“I’m not supposed to walk”

March 4, Monday
Tonight was the first night since the accident that we didn’t spend the evening with Brian. I needed to drive Amy to Lebanon Valley College for an interview. After the interview we ate dinner with Lisa’s parents and had a nice time with them. It was good we didn’t go down to see Brian. We needed a break and to spend some time with just the girls. I worry they are feeling neglected. Plus Brian needs to learn to get along without us always being there. He had a lot of visitors there anyway, as usual. Carolyn and Jess from Hilltown Baptist youth group brought him a pizza.

The tough thing for me today was realizing it was the first day of baseball practice. Even if God does a miracle and Brian is able to stand again or even walk, he is done with competitive baseball. We’ll probably miss that even more than he will. We so enjoyed watching him play and cheering for him. We used to cheer for hits and good catches, now we cheer for finger wiggles and for his learning to feed himself. But in either case—in baseball or with this—he’s giving 110% and I’m just as proud of him, if not more.

[An added note I scribbled on the top of this page] We called Brian’s case worker today to get him more rehab time and things to do. With all his problems and this huge life change, his biggest problem—he’s bored! That’s our Brian.

March 5, Tuesday
Today is exactly two weeks since the accident and Brian is already doing so much. He gets around great in his motorized wheelchair, he is learning to feed himself pretty well, and beginning to learn to write with a contraption that attaches to his hand. One mom, whose daughter is in the spinal cord unit, remarked that he is way ahead of where her daughter was after just a week at Magee. But we are learning that everyone progresses at a different pace. Today we also started the process of getting financial assistance in buying a transport van for Brian—lots to learn.

We went down to Magee with a big stack of get well cards to read to Brian and he had a bunch of cards that came to him at the hospital as well. So many are from people we don’t even know. Brian quote of the day: “If you really want a lot of people to show how much they love you, just break your neck.” Today he got a personal letter from superman—Christopher Reeve. He was so tickled to get that. I don’t know how Christopher got Brian’s name, but that was truly special.

Brian seemed very tired tonight. He is still not sleeping well. We read Psalm 63 together: “On my bed I remember you; I think of you through the watches of the night.” (verse 6). Brian liked that verse. He helped write some thank you notes tonight with his new pen holder contraption. Lisa says it’s better handwriting than mine. If you’re reading this [the handwritten journal] you can see why.

March 6, Wednesday
Today we won’t be going down to see Brian. I know there’s a gang of Brian’s friends going down to see him tonight so he certainly won’t be lonely. Heather from our church called us. There is a huge team of volunteers coming Saturday to work on our house. What a blessing!

Today Brian called us all excited about some new kind of spinal cord therapy being done as a research project out of UCLA that involves hanging the patient from the ceiling using a parachute harness while they walk on a treadmill. I don’t know all the details but he sounds pretty excited about it. They’re looking at Brian as a possible subject for the study.

Tonight we met with Jeff, an attorney who attends our church, regarding possible lawsuit stuff and the ski resort. I don’t know if anything will develop from that and that’s fine if it doesn’t. But I will say the one thing that really disappoints us is that no one connected with the ski resort has even called or contacted us at all. It hurts, really. If kids are still doing flips up there on the slopes, I’ll be furious. I intend to find out. [No legal action of any kind was ever initiated on our part]

I started reading the Adam Taliaferro book tonight. It’s hard not to compare his progress with Brian’s. There are some similarities to his injuries, does that mean the same outcome? I hope so.

I found out it was my sister Bonnie who had emailed Christopher Reeve’s organization to tell him about Brian. It was nice of Christopher to take the time to write.

[Adam Taliaferro was a Penn State football player who, in 2000, suffered a serious injury in a game at Ohio State, resulting in paralysis from a spinal cord injury. His book, Miracle in the Making, details his struggles and rehabilitation—at Magee Rehab where Brian was—and the amazing recovery to the point of walking out of the hospital. Brian and Adam became friends and he and his family were an inspiration and big help to us through our shared experiences.]

March 7, Thursday
What a day! Brian needed a little boost this week. God knew that. Brian’s therapist told us that he said to her, “this paralysis stuff really sucks.” I’m sure sometimes it really must. He got a great boost today! Brian is connecting with more celebrities. He had already gotten a personal letter from Christopher Reeve. Today a package came from the Philadelphia 76ers basketball team with autographed photos of many of the players including Allen Iverson, Dikembe Mutumbo, among others. If that wasn’t enough, who comes into Brian’s room to visit but Adam Taliaferro. He stopped by and talked with Brian for about 20 minutes. (We had just bought Adam’s book yesterday!) Adam was highly impressed with how far along Brian is. Everyone is impressed with how he is doing. Brian was in awe and now Adam is his new hero. As I said, what a day!

Then later this evening Brian, Lisa and I were presented with a unique opportunity. Brian was asked to take part in the UCLA research study for a new treatment of patients with incomplete spinal cord injuries. They hang the person from the ceiling in a parachute harness and put them on a treadmill. It may not be any more effective in helping him to regain his legs, but that is what they are trying to learn from this study. One of the challenges for us to think through is the fact that Brian might be in the control group and receive the traditional rehab, or he may get picked for the new treatment. It is simply a random choice. We have to sign off on that if Brian is to be in the study. I know Brian wants the harness; we will pray. We made the decision to sign up for the UCLA study.

March 8, Friday
Well, yesterday’s high was followed by today’s low. As it turns out, Brian was chosen for the part of the UCLA study that utilizes the more traditional form of therapy rather than the parachute harness. Brian is OK with that. So are we but I think we’re just a little disappointed. Either way, as a part of this study, he still gets more therapy now per day. And there were some risks and potential complications with that other new form of therapy, especially a possible hazard with his catheter. [At this point Brian still did not have much feeling below the waist, nor control of bodily functions]

We started a web site today, http://www.briandelozier.com. We’ll use it to keep people updated on Brian’s progress and as a way for people to contact Brian and leave messages of hope. So many cards still coming in, many from complete strangers. I can’t wait to get the web site online and running. Brian is really excited about it. He is also excited that the hospital is transporting some of the patients to a 76ers game in a few weeks. There are a few extra seats at the game and I’ll get to go with Brian!

Great news, praise the Lord! Brian said that he made slight movements of his legs, calves, thighs and even his toes for Dr. Staas! [Medical Director at Magee Rehab and a wonderful doctor] The doctor told Brian that Brian had “made his day.” The nurses said they’ve never heard Staas say that before. We are so excited! We prayed with Brian to say thanks to the Lord and start crying as we pray. I looked down and Brian was also weeping, something unusual for him. “I’m not going to spend my life in this chair,” he said through his tears. I’m beginning to think more and more that he just may be right.

March 9, Saturday
Today we had an amazing crew of about 20 people, mostly from our church, come to our house to clean, strip wallpaper, paint, all kinds of jobs. What a blessing! These people are so wonderful. So much got done on the house. A couple more weeks and we’ll be done.

Brian had his usual bunch of visitors for a Saturday at Magee. Kim, our hair stylist, came all the way down to Philadelphia to the hospital to cut his hair. He looks really nice. Betty, one of our community friends tells Brian, “I’m going to be there to see you get your high school diploma next year and see you walk up to receive it. And I’m going to lead the standing ovation.” You go, Betty!

Tonight something wonderful happened. At one point as we were talking with Brian he said, “look Mom,” and he kicked up his left foot about 5 inches. “I’ve never done that,” he said. He did it again 5 or 6 times!! We started jumping up and down. Then Brian went out of his room into the hall and showed Barb the night nurse and she got excited too. The whole floor was excited! Praise the Lord, keep doing it Lord, I kept thinking.

On the way home I called all my family and everyone I could think of to tell them. Brian told us again tonight that he is not leaving Mage in a wheelchair. I’m beginning to think now that he—and Betty—are right!

March 10, Sunday
We’re still on cloud nine today about Brian’s leg moves. Today at the church services I shared about Brian and how he lifted his leg last night. I cried throughout the announcement, of course, but when I was done they applauded loudly in both services. The applause was for God, really, and His faithfulness in what he is doing in Brian’s life. Brian asked me, “even if only one person prayed, would God heal me?” I told him I don’t understand why or how prayer moves God’s hand and I don’t think it’s so much a numbers thing. I do know that God is honored the more we pray and prayer does things in our hearts to change us, and help us rely on Him. If there is some healing in this situation God will get the credit.

Brian was really extra upbeat today. Everyone here at Magee Rehab Hospital, even the other parents and patients are so impressed with how he is doing. I want God to get the credit. I want to make it known that it is not only due to Brian’s great desire and effort but it is God doing a work as well. Brian told me tonight that he wants to get a t-shirt made to wear when (not if) he walks out of here that says, “I’m not supposed to walk.” Just like Brian. I said, “Brian if you walk again, promise me, to everyone you talk to, that you will give credit to God and give him the glory.” “I will Dad,” he said. “I will.”

March 11, Monday
Today is exactly 6 months since the terrible tragedy of 9-11 and the attack on the Twin Towers in NYC. What a horrible thing so many families had to suffer through. It makes our difficulties with Brian’s accident and resulting injuries seem like nothing. So many were lost on that day, but we still have our son with us. Brian was hurt as the result of a choice that he made on a ski slope. These were innocent people working in their offices and simply going about their daily lives. As I think about that day, my heart goes out to them now more than ever.

Today Brian’s new web site went online. We added a guestbook feature to the home page where people could sign in and leave a message. In the first 8 hours, 40 messages were left for Brian! I don’t know how all these people found out about the web site so quickly. Even some friends in Ohio we haven’t talked to in some time left a message in the guestbook. Our friends Jeff and Luanne have been so gracious. They are buying Brian a laptop. That way he can keep checking all his messages. Now he won’t be bored!

March 12, Tuesday
Three weeks since the accident. Brian’s web site continues to flourish. I think he’s really excited about all the response it is getting. Today we went into Magee to find Brian in a manual wheelchair! What a big step for him. He is moving around in it pretty well. It’s so much better than the big, clunky electric one. He’s still making some progress with the legs. He raised his right leg one time tonight. Alright Brian!

Andre Taliaferro, Adam’s dad, came in tonight to see us while we were in the family room. We had such a nice chat with him. He too was very impressed with how Brian is progressing. He can relate so well to what Lisa and I are going through.

Tonight was so nice. All six of us were together as a family. It’s rare we are able to do that even when we’re all at home. It was simply a special evening. We celebrated Camrin’s birthday (again) and had a cake. Brian seemed to really enjoy having his whole family there. He truly does need ALL of us.

Brian and his therapists

March 13, Wednesday
Brian’s new web site continues to generate unbelievable response! When I left my office at the church this afternoon, Brian had 110 messages in his guestbook and 48 emails to read! His site hasn’t been up even 48 hours. As I read through the many messages they were so encouraging to me. So many people are praying, so many are keeping up with his progress, so many hoping for a miracle. It’s something I can’t fathom even after three weeks since the accident—the outpouring of love and care from so many people from many different areas of our lives, many people neither Brian nor any of us knows. God is good.

We didn’t drive down to Magee tonight, but a gang of Brian’s friends went down to see him. It’s good for us to get a break from time to time. At times I am just so exhausted. All those nightly trips to Philly sort of wear on you. Lisa wasn’t feeling well tonight anyway. She’s been having headaches. Going to the doctor Friday.

March 14, Thursday
I am 46 years old today, I can’t believe it. Where have the years gone? I have been so blessed. I have a wonderful wife, great kids, a loving and caring church family, fantastic local community, such great support. This past month has shown me that in a very real and powerful way.

Today was kind of a lousy day, really. I didn’t feel so great, and went down to see Brian by myself and had to drive around for a half hour just to find a parking spot. I took my laptop in with me tonight to try to get Brian hooked up and spent over an hour fooling with it and after all that it still didn’t work. It upset me because taking time to do that stole my time with Brian. No new progress with Brian’s legs or any movement today. So all in all, it was kind of a bummer of a day. But every day in this adventure can’t be a banner day.

One bright spot was a letter from one of Brian’s former baseball coaches, coach Stevens. It was very moving, telling Brian he knows he’s going to make it because of the determined way Brian played ball for him on his Little League teams. I’m going to keep that letter!

[If I transcribed every letter or note that Brian received during his ordeal it would take up far too much space. But this letter was the only one I actually folded up and stuck inside the pages of this journal. I thought I should share it below in its entirety]

I was very sorry to hear about your accident and hope that your injuries are improving and that your spirits are good. The card I sent reminded me of you. Of all the boys I coached over a twelve year span, you stand head and shoulders above the rest when it comes to effort. Whenever I see you at our house or just passing by at a high school event, the same thought passes through my head: “effort, determined, always gave his best.”

I was so proud to have you on my teams and always had so much confidence in you whenever a ball was hit in your direction or when you were at bat. I was very sorry when I lost you to the travel team but I knew you deserved to be there.

I think perhaps I was so fond of your efforts because I too had to work harder than my peers when I was younger. I was not the most talented athlete, but I did work harder than most and I know what that effort did for me and how it paid off for me later in life.

I have been told that God will not give us anything we can’t handle. I think perhaps He knows that you can handle this situation in your life because of that effort and determination that exists in you. I don’t know why accidents like yours happen to good people. But I do know that your life touches many others around you, including my family, and perhaps you have or will have the opportunity to influence others in your life through your accident.

In 1974 while I was playing football at the University of Southern Mississippi, I was given a quote from the book The Power of Positive Thinking, By Norman Vincent Peale. This quote not only changed my life and how I approached things in life, but I also ended up marrying the person who gave it to me and we are still together today! If it only influences you half as much as it did me, it is worth the read*.

Brian, our family is praying for you and your family, and my prayer to God is that you will continue to have the strength and effort that you have always shown when I watched you perform. I think you have probably seen the word “persistence” on the wall next to my office on the third floor of our house. I believe anything is possible with persistence and faith!

God bless you, Brian, and DON’T EVER QUIT!

Coach Stevens

*Included with this note was a bookmark that on one side had Isaiah 40:28-31 and on the back this quote from Norman Vincent Peale: “God renews our hearts and keeps us going, and holds us up. Indeed, He helps us to ‘mount up with wings as eagles’ so that we shall run and not grow weary and finally can walk (when the going is hard) and not faint.”

March 15, Friday
Today I looked at the web site of radio station 88.9 Word-FM and on their home page is a picture of Brian. If you click on the photo it takes you to his web site. How about that. That was so nice of them to do that. The web site continues to be a great source of encouragement for Brian and for all of us. Over 200 messages so far.

Next Friday is the high school’s first baseball game. I have a hard time thinking about the game, and not seeing him at his familiar place at first base or right field. It is probably harder on Lisa and me than it is on Brian. For now, I’ll just avoid driving past the baseball fields. Right now, seeing him move his leg is much more important than watching him make a great catch.

Tonight we didn’t go down to see Brian, but instead attended Pastor George’s 80th birthday celebration at Hilltown Baptist Church. It was a lovely evening. I’m seeing how Lisa and I need some time for ourselves, now more than ever.

March 16, Saturday
Today another big gang came over to our house to work. We got so much accomplished! Brian won’t recognize this place when he comes home. The front looks like a new house. These people are all giving so much of their time. It is truly an example of Christ’s love and how the body of Christ lifts up one another. We are now praying for a buyer and that we will find a place to move or some property where we can build a more accessible home.

We had a good time with Brian tonight. We were almost to the hospital when he called us on our cell phone asking, “Are you guys coming down soon?” I know he really misses us and misses his home (and the dog), and we miss not having him here in our house. Even his sisters really miss him. A nice visit again tonight but I came home totally exhausted. One thing that made our evening, though. Brian moved his toes tonight. We finally got that toe wiggle we were praying for!

March 17, Sunday
All those trips down to Magee and late nights are starting to catch up to me. I’m beat. My back is also going out on me. I need to make sure I am getting my rest. Poor Brian, he’s still not sleeping well either. And he has already lost 10 pounds. He can’t afford to lose any weight.

Jeff and Luanne brought Brian’s new laptop over to take down to him. What a blessing that is! It will give Brian something to do and enable him to check his messages which keep pouring in to his web site. It snowed all the way down to see Brian, the first snowfall since the night of his accident. We had a nice visit with him. Brian loves his new laptop. We gathered around him and prayed before leaving. We’ll be back down to Magee on Tuesday. I’m going to try to have his laptop all set up by then.

March 18, Monday
Today it is raining. We desperately need the rain—it has been so dry—even though it makes the day seem a little depressing. I’m battling a terrible sore throat. I’m still tired. When I think about whining because I feel lousy, I just think about Brian and his situation. He hasn’t whined once, that I know of. And he’s lying in a hospital paralyzed. Thinking about that makes my health problems seem so miniscule.

I ordered a trackball for Brian’s laptop so he can make better use of it with his non-working hands. It should be here tomorrow. Brian asked Dr. Staas today, “will it be possible for me to walk,” to which Dr. Staas replied, “Brian, I think it is very possible.” I like hearing that, “very possible.” I know with God “all things are possible!” (Matthew 19:26)

March 19, Tuesday
Today I woke up feeling really, really lousy—sore throat, wiped out, just plain sick. I didn’t sleep much last night, which did not help matters. I think this past month has finally caught up to me. I’m exhausted. Today is exactly 4 weeks since the accident. In some ways it seems like a year.

I decided to stay home from the office today. I slept for much of the day. I needed it. Lisa, Amy and Lindsey drove down to Philly this evening to see Brian. They said they had a great visit with him. He has made some amazing progress in this past month and especially since leaving Lehigh Valley hospital. The PICU nurses from LVH sent Brian a nice message to the guest book on his web site today. Along with so many others, they’re also keeping track of his progress!

March 20, Wednesday
Today I felt better than I have in many days. I slept 14 of the last 24 hours and I really needed that sleep! I’m not so sure I was sick as I was exhausted. This whole experience, the trips to Philly and back, worrying about my son, really tires me not only physically but mentally and emotionally as well.

Today I found out that 88.9 Word-FM is going to use the upcoming Sonic Flood concert on April 12 (already sold out) to raise funds for Brian. [Sonic Flood is a contemporary Christian band that was very popular at the time] They’re going to begin to advertise that on the radio and on their web site. Amazing stuff.

Tonight I was the only one that drove down to Magee. That was kind of nice, just to be able to be with Brian and have him all to myself. Some of his high school buddies came by later and we all played with Brian’s new laptop. After they left, we talked a little while longer. I kissed his forehead, prayed with him briefly, then left. Tomorrow Brian’s caregivers will meet to decide how much longer he will stay.

March 21, Thursday
When I got to the office at church today there was an email message from Brian. He said Dr. Staas came in and told him that he has all his leg muscles still. That’s a really good sign. Dr. Staas always has encouraging things to say about Brian’s progress. Brian is able to put enough weight on that left leg so that he can pivot on it (with a lot of help, of course). That is wonderful! God is doing a miracle in that boy!

God is providing in other ways as well. Craig and Rich [both realtors that we knew] are moving things along toward getting our house on the market. Ursinus College (thanks to our friend who works in Admissions) has offered Amy over $25,000 in financial aid!, over $20,000 in grants. Praise the Lord for that. I don’t think Ursinus is going to be Amy’s choice but that is an encouragement and a blessing. It helps us to trust the God is going to work out this whole housing deal. A lot of things have to come together. We’ll just watch and see what happens!

March 22, Friday
Today I had a day off so we were able to head down to Magee early. It’s been a real “downer” of a day so far. Amy didn’t get accepted into Grove City College which greatly disappointed us (but not Amy—she has kind of cooled off to Grove City). The report from yesterday’s “Brian team” meeting at Magee is that he’s still not moving his legs enough and the muscles aren’t strong enough for them to keep him longer and work on walking. Three more weeks, they say. That really bummed us out because his legs DO seem to be getting stronger all the time and moving better. We were hoping for a longer stay. We’ll mobilize our friends to pray for Brian’s legs to get stronger.

On top of this, today was the first high school baseball game of the season. I tried not to think about it. In the past, Lisa and I used to talk about how much we would miss baseball when Brian was done playing. He has played baseball every spring and summer and even some fall ball since he played tee ball as a little kid. We always knew baseball would end after high school. We never thought it would end this soon and certainly not in this way.

After this discouraging stuff, on the way home we get some great news! It was a message from our case manager telling us that Monday they are going to give it a try and get Brian up to see if he might possibly take steps. Yes!! A much better way to end the day!


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The Thoughts of a Father: my journal from 10 years ago . . .Part 1

“Today our lives have changed forever”

This is a journal written from the day of my son’s Brian’s accident (February 19, 2002) until he was released from Magee Rehabilitation Hospital in May of that same year. He was 16 at the time. I’m not really the journaling type, at least not consistently. But I felt an urge at that time to record my thoughts and some of the events of those days. A couple days into the ordeal I bought a little spiral notebook and wrote up my thoughts from those first days then continued to write something at the end of every single day, enough to fill one page.

This is not necessarily a literary work of art, by any means. I added a few missing thoughts and changed some of the sentence structure, but other than that the following is pretty much a word-for-word transcription of my daily entries. At a few places in my little book I had to work at deciphering what I wrote. These words were scribbled 10 years ago and my handwriting is pretty bad to begin with. Much of it was written late at night, often through tears, from my heart to the page.

Out of respect for the people mentioned in my journal, other than our family or people like the doctors (who deserve to be credited!), I have used only first names. I also have included some additional or background information along the way. Those comments will be found in brackets and italicized.

Transcribing it now, for the first time, brought back so many memories of those days; memories not only of the stress and pain of dealing with a son’s traumatic injury, but of the wonderful people—family, friends, church community—who enabled us to make it through that experience. They cried with us, laughed with us, and celebrated the many miracles along the way. In addition to this journal, I still have boxes of the many hundreds of notes and cards that people sent to Brian and to our family. They serve as a great reminder to me of the support and love that kept us going through both the highs and lows. Both were plentiful.

I was slightly apprehensive about making a diary available for others to read that, in some entries, includes very private thoughts. But in making myself slightly vulnerable, I am hopefully giving the readers of this journal an opportunity to experience those days with me and my family and to cry at the heartaches and celebrate the miracles with us. Especially the miracle that is my son, Brian.

These are the thoughts of a father. The story begins on a cold wintry night, in late February, 2002…..

February 19, 2002 Tuesday [My first entry is significantly longer, but thereafter I kept to my self-imposed “rule” of keeping my thoughts to one page per day]
Today our lives have changed forever. It started with a frantic cell phone call from Fred, one of Brian’s good skiing buddies. The call kept breaking up but I heard, “Brian’s hurt,” and that’s all I needed to hear. My heart started beating fast and [my wife] Lisa suddenly felt sick, but we rushed to Lehigh Valley Trauma Center [in Allentown, PA] where we were told Brian was being taken.

Brian had tried a flip (one he hadn’t done before) while skiing at a nearby slope, and fell on his neck. [Brian was an athlete, especially baseball, but was also an avid skier. It was common for him to rush home from school, blow through his homework and spend the rest of the evening on the slopes. Typical Brian, just going downhill, was not good enough, eventually he got into aerial skiing, which always made us nervous. Our fears, it turns out, were warranted]

When we arrived at the hospital Brian wasn’t there yet. When the ambulance finally arrived they took him to the ER and at first we got a quick (premature) diagnosis that he could move his feet and would probably be OK. They were wrong. [I found out later this can be a common thing. I am quick to add—as you will read later—the staff and physicians that attended to Brian were exceptional at every facility.]

Brian age 16, before the accident

Brian, it turns out, had broken at least one vertebra in his neck, the X-ray showed. And he had possibly broken another. He actually had no movement in his legs or feet. A CAT scan would be needed to confirm. At this point I had already hastily called family members to start praying. Coming out of the CAT scan, we knew something serious was up because none of the staff or trauma docs would look us in the eye. We were ushered into the exam room with Brian. The head trauma doctor said, “Brian can you hear me?” Brian said yes. “That’s good because you should hear this, you’re old enough to hear this.”

I felt absolutely sick inside because I knew I did not want to hear his next words. “Brian has ruptured his spinal cord at C-6 causing permanent damage…” More medical mumbo-jumbo followed so I asked him, “What does all this mean?” He told me very frankly, “Brian is paralyzed from the chest down and this situation cannot be reversed.”

At that moment I felt just like someone had punched me right in the gut. Lisa broke down and I just stood and stared for a bit, then went over to Brian who was laying on the gurney and put my face down on his and fell apart. He and I both wept and I kissed him and I prayed out loud. I’ll never forget him saying through his tears, “I love you, Dad.” Then I really lost it. All I could muster up was, “Brian we’re going to make it through this because you have the Lord and Mom and me, and we’re going to be with you all the way.”

The rest of the night is somewhat of a blur: Calling my sister Barbara and weeping uncontrollably as she shouted, “No! No! No!” over the phone. Calling Lisa’s dad who was so shaken he had to hang up. Feeling numb. The doctors were all so nice but all seemed at a loss for words. Someone in scrubs, a doctor, attendant, someone, put his arm on my shoulder as we went by and said, “We’ll pray for you.” That really touched me because he didn’t know us at all but he could see the pain we were experiencing.

They ushered Brian up to the Pediatric Intensive Care Unit (PICU) and began to orient us regarding visiting hours, overnight stays, the next steps, etc., but I really didn’t hear much of what they had to say. We will meet with the neurosurgeon tomorrow and find out more. Brian was knocked out on morphine and at this point it was best for us to just go home and try to sleep.

We hadn’t given the bad news to the girls [my 3 daughters, at the time whose ages were Amy, 18; Camrin, 13; Lindsey, 11] because it was late and I didn’t want to wake them. I didn’t want to tell them the news over the phone anyway. We got home after 11 p.m. and Amy was still up. I took her into the living room and we sat on the couch while I told her the news. I began to sob uncontrollably. Amy wrapped her arms around me and just held me until I stopped crying—a strange reversal of roles. The two younger girls weren’t told until the next day. They took it pretty well. Lindsey and I cried and hugged in the pantry; Camrin seems pretty tough. Neither can truly grasp what all this means. None of us can.

[I’m learning new details of this story even now, 10 years later. I gave this copy to my family to help proofread. Camrin told me, after reading this, that she wasn’t so tough at all. She was awake upstairs when I came home and she heard me as I had my tearful conversation with her sister Amy. Camrin said she cried that night in bed as she overheard the news of Brian’s condition.]

Amy went to bed, then I fell into bed, exhausted. Lisa got on the internet looking up everything she could about spinal cord injuries. She didn’t sleep at all that night.

February 20, Wednesday
We all went up to Lehigh Valley Hospital today. The girls didn’t want to go to school and we needed to be together as a family. We prayed together on the way. At the hospital we met with one of the neurosurgeons, Dr. Coldonato, to discuss the surgery Brian was to have today on his neck. Pastor Jay and his wife Rose from our church came, along with Pastor Rich and Adam. As we all waited they prayed and they cried with us.

Dr. Mark Li, a skilled neurosurgeon at LVH came out to see us. He was the one who actually performed the surgery and he said it went very well. He explained that Brian had pretty much pulverized vertebrae C-5 and C-6. Those were removed, in pieces, and the gap between C-4 and C-7 was fused using a piece of donor bone and a titanium plate and screws. We asked him about the prognosis of Brian’s future abilities and he was very honest with us. He said he gives Brian less than 1,000 to 1 odds that he will walk again, and a 50-50 chance he will regain the use of his hands.

We need to pick a rehab hospital and start planning for a whole new life with our son Brian in a wheelchair. I still can’t believe it. We start praying just for a toe wiggle. [At this point Brian was paralyzed from the chest down, no movement, no feeling. He had very minimal movement in his fingers and hands and could lift his arms some, but not fully.]

February 21, Thursday
Today the girls went back to school, while Lisa and I went back to the Lehigh Valley Hospital PICU. The staff there is so wonderful, especially the head nurse, Julie. We continue to call our family members with regular updates. They placed a device in Brian’s artery, in through his leg, they called a blood clot filter. It is a tiny metal thing that will stay in him forever. People who are paralyzed and only able to lie in one spot are susceptible to blood clots, and this device will help prevent that from occurring. We’re learning more each day about the world of spinal cord injuries.

My sister Bonnie is flying in from Pittsburgh today. The expressions of love and care are overwhelming. Some friends we haven’t seen in awhile called us from Georgia to say they are praying for us. The news travels fast. It seems Brian has already been put on every prayer chain in the world. Even in Australia!

Our church has begun to mobilize. Heather came to the hospital and spent the day with us. She told us about the Hilltown Baptist Church “Task Force” that was being formed. [I was currently serving as Associate Pastor of Hilltown Baptist Church, in Southeastern PA. The day after Brian’s accident, a group of people began to mobilize as a kind of make shift task force, to help pull together resources we would need in the next weeks and even months: from meals and laundry help, to possible house construction needs like ramps or other remodeling. These wonderful people saved us—literally—in so many ways.]

Some of Brian’s high school friends started coming to visit. There are many different reactions. Some cry. Some don’t know what to do. Most don’t know what to say. Jeff and Luanne, the parents of one of Brian’s good friends have been calling every day and offering to help. They have done so much already.

I’m concerned for Lisa. She’s not sleeping and she’s not eating either. This is so hard on her. I guess it would be especially difficult for any mom.

February 22, Friday
We got up today and again planned to go straight to the PICU to see Brian. Just before we left the house, a friend called to say we better check at our front door. We did, and there we found all kinds of stuff—flowers, a fruit basket, other kinds of food. The outpouring of love from this community continues to amaze us. So many people are helping us through this. My sister Bonnie flew in yesterday from Pittsburgh. She’s already been a big help with picking up the girls and things like that.

We continue to talk with staff and specialists at the hospital. Today we heard the word “quadriplegic” for the first time applied to Brian. It was hard to hear that word. Today we also met with the hospital’s trauma psychologist. He wanted to see how Brian was handling this tremendous life change, plus how we were coping as well. After coming out of his meeting with Brian, he told us our son has the best attitude a person could have who is facing this challenge. He’s determined, and he shows no signs of anger or giving up. I pray that he keeps that attitude.

We still haven’t decided on a rehab hospital for Brian to go to when he leaves the PICU at Lehigh Valley Hospital. We need to do that soon. We want the best, and right now it seems like Magee Rehabilitation Hospital in Philadelphia is the best for spinal cord patients.

Just when I think I’m getting “stronger” and handling this whole thing well, on the drive home from the hospital tonight I started sobbing uncontrollably. As I was driving I just starting yelling (to no one in particular, but really to God I guess), “I want him back the way he was! I want him back the way he was!” As I kept sobbing and yelling, Lisa thought for sure I was going to wreck the car, but we made it home OK. I needed to get that out. I really did.

February 23, Saturday
Camrin’s 14th birthday. Poor Camrin, having a birthday right in the middle of all this. I don’t want her to miss out on celebrating this special day, but we’re all aching so much. It is so good to have my family here. Today my sister Barb and her son Patrick and friend [now wife] Tiffany came to be with us. My sister Bonnie went up to Lehigh Valley Hospital early today and decorated the family room and got a birthday cake. When we arrived with the girls, we had a party for Camrin there in the hospital. Some of Lisa’s teacher friends were there. [My wife, Lisa worked as a teaching support person at Upper Perkiomen Middle School] I know Camrin appreciated the fact that we still were able to celebrate her birthday.

Lisa’s mom and dad came today. It was their first time seeing Brian since the accident. Lisa’s brother Kyle and his wife Shirley came along as well. They were all really broken up when they saw Brian. My father-in-law said that’s the first he ever saw Kyle cry.

Brian was up in a chair/bed type of thing today and even sitting up for awhile but he couldn’t take it very long and they had to put him back in bed. He’s in so much pain and is not sleeping. He was exhausted at the end of the day. So are we.

February 24, Sunday
Today we didn’t go to church. We need to be with Brian. Besides, I just don’t feel like being with all those people yet. But I know they love us and I can feel their prayers. We finally decided on a rehab hospital where Brian needs to go next. Magee in Philly is definitely the best. That will be his new home for the next few months.

Brian is up in his chair/bed thing again today. The elders and pastors of Hilltown Baptist Church came and as the book of James says, anointed Brian with oil and prayed over him. [Are any of you sick? You should call for the elders of the church to come and pray over you, anointing you with oil in the name of the Lord. James 5:14] I could see that a number of them were really broken up by this. Some of Brian’s high school friends were there during the prayer time. I think it made a real impact on them. I can see so many ways that God is going to use this situation. I’m going to pray for that. I think Brian would want to see that too.

One of Brian’s best friends, Will, and his mom came over to the hospital today. Will is a big guy and he brought Brian a trophy he had just won in a weightlifting competition because he said, “Brian was my inspiration.” That brought me to tears, of course. Brian is able to make jokes about himself, even coming up with names (Crips-D), which puts his friends at ease. He has such a great group of friends. They are always coming in to see him.

[That weightlifting trophy stayed in Brian’s room during his entire hospital stay and we still have it at home to this day. It is a treasured keepsake. An additional note on Brian’s many friends. As I read through these pages I’m not sure it comes through as strongly as it should, just how much of a help Brian’s friends were throughout this whole ordeal. They were there from day one and were a great support in many, many ways. They never hesitated to visit him in the hospital. They helped in practical ways as well. From feeding him to carrying him or helping to raise funds for his medical expenses, his friends stood by him and never abandoned him, when they easily could have. They were, in every way, what the true definition of “friend” is all about.]

February 25, Monday
Up to Lehigh Valley Hospital again this morning. We thought Brian would be transferred to Magee Rehabilitation Hospital today, but now we are being told it will be tomorrow at 11:30 am. That’s just as well, he’s still really tired and in a lot of pain. Lots of cards are pouring in from everywhere—church, community members, high school, middle school, former employees, even people we don’t know. At the end of each day when we get home we sit and read them. Then we take them in the next day and read them to Brian. It seems to cheer him some.

My sister Bonnie flew back to Pittsburgh today. It was a big help to have her here for a few days. I had a “pep talk” with Brian about working hard in his rehab: “If you are asked to do 10 reps of something, instead do 15…” I really didn’t need to say anything to him, he is obviously very determined. I know he’s going to work hard. “I’m going to do hard-core rehab,” Brian says.

February 26, Tuesday
Moving day. Also one week since the accident. Today Brian is going to be moved to Magee Rehabilitation Hospital in Philadelphia. We got him all packed up and ready to go. I cried as we said goodbye to the PICU staff. They have all been so good to us. This has pretty much been our home for the past week. They all said we must bring Brian back to see them. Lisa rode in the ambulance with Brian and I followed in the car. Meanwhile, back at our house Cassie and Steve from our church were doing all our laundry and cleaning all kinds of things in the house. What a blessing! So many people are helping us in so many ways.

We got to Magee early in the afternoon and filled out all the necessary paperwork; it seems like a great place. It is definitely different from Lehigh Valley Hospital. It has a “city” feel. We stayed with Brian all day, and then wheeled him, in his bed, up to the observation floor on the top of the building. Basically we were up on the roof. It was a beautiful clear night and Brian liked looking up at all the skyscrapers of Philadelphia. We stayed out there a long time and had one of the best times we’ve had with our son in a long time. It was special.

Brian's home for 2 months

February 27, Wednesday
Today was the first time since his accident we didn’t spend our entire day with Brian. I went into church to my office for the first time. I really missed being with Brian and I know Lisa did too. All the staff hugged me and of course I cried. It was kind of silly of me to think that I could be “tough.” This whole things still breaks me up.

The day went by fast and then Camrin and I drove to Magee. Lisa stayed home with a sick Lindsey and Amy had to work. That’s just as well since Lisa was really beat. She is eating and sleeping better now, though. Thank you Lord.

Brian had a rough first day at Magee. He had a fever and threw up. In spite of that, tonight he was pretty chipper. I fed him and Camrin did too. I sense that she likes to be with her big brother and she likes to help care for him. We laughed when he accidently knocked the phone receiver on to the floor and just started yelling at it. He figured out how to work the hospital bed and the TV on his own by using his knuckles. Way to go, Brian!

February 28, Thursday
I saw Pastor George when I went into the church today. He’s going through some real serious health challenges with his wife of 50-plus years who is basically dying. We hugged each other and wept. We have a special understanding of each other’s pain.

After a day at Hilltown Baptist Church I quickly went home and then Lisa and I drove down to Philly to Magee Rehab. When we got there we couldn’t find Brian anywhere. He was not in his room. It turns out he was up on the roof on the observation deck showing off his new motorized wheelchair to his high school buddies who had come down to see him. He was really upset because some technician came today and adjusted the chair to make it slower because Brian was going too fast! That sounds like my son.

His friends were kind enough to go out and get him a cheese steak. He said to us tonight, very matter-of-factly, “I think I’m going to walk again.” But then right after that he said, “But if I don’t that’s OK, because they showed me a video today of all the things people in wheelchairs can do. They can do anything!” What a great attitude! I am so proud of my son; he is handling this better than we are.

First days at Magee

March 1, Friday
Finger wiggles! Today we called our case worker, Masako, at Magee, to get the first of our weekly updates on Brian’s progress. There’s good news. They are saying he will only be in the rehab hospital for 6 weeks (although if he begins to regain any more of his abilities, he will be staying longer—so we hope he stays longer). Also they are now considering his level of injury a C-7 rather than C-6, which is good. [Basically the higher up the vertebrae the spinal cord is compromised, the higher up on the body the paralysis occurs] Masako said they feel he should at least regain his arm movement and wrist motion, though they are unsure about his fingers.

Traffic heading to Philly was a mess tonight on the Schuylkill Expressway. We didn’t get to Magee til after 7 p.m. Pastor Jay and Rose were there. Brian seemed so happy to see people tonight. Apparently he was so bored today that he was going on excursions in his motorized wheelchair all throughout the hospital on all the different floors. He told me about visiting the traumatic brain injury floor. Seeing those folks really shook him up. Already it seems everyone at Magee knows Brian.

Great news today! He wiggled the last three fingers on his right hand. We Praise the Lord for small victories. Lisa was so excited she jumped up and down and did a little dance. Brian is really “full of himself” tonight. He even ate a whole cheese steak, which is a lot for him right now. I hung up a poster in his room that I had gotten for him. It says, “No task is greater than the POWER within you.” Ephesians 6:10. [That verse says, “Be strong in the Lord and in His mighty power.”]

March 2, Saturday
We couldn’t go to Philly to see Brian today until later in the day, due to meeting with a whole crew to discuss changes needing to be made to our house so we can sell it and also so Brian can move in temporarily until we buy/build a new place that is accessible for him. There are lots of lifestyle changes on the horizon for us—we’ll all just have to adapt.

We finally got to Magee around 7 p.m. (the hour drive down to Philly is already becoming tiresome, but I really want to be with my son). Brian had a ton of people there today, both church and community friends. But he still brightens up when he sees us. He seems to like his mom washing his face and cleaning and brushing his teeth. It’s become a nightly ritual. He also seems to be settling in here quite nicely. Tonight we watched some fun discovery Channel shows on goofy animals and generally had a nice family time. I read Psalm 18 to Brian and then we drove home in the rain.

[Psalm 18 is too long to include in its entirety. Brian especially liked verses 31 through 36: “For who is God except the Lord? Who but our God is a solid rock? God arms me with strength, and he makes my way perfect. He makes me as surefooted as a deer, enabling me to stand on mountain heights. He trains my hands for battle; he strengthens my arm to draw a bronze bow. You have given me your shield of victory. Your right hand supports me; your help has made me great. You have made a wide path for my feet to keep them from slipping.”]

March 3, Sunday
Today we all went to church for the first time since Brian’s accident. So many people hugged us and gave us words of support. What a wonderful church family we have. During the services I shared an update on Brian’s progress. I cried most of the way through it but I made it. This really has affected the whole church very deeply. A man called me today from a church I’ve never heard of to ask for Brian’s address. His parishioners want to send him letters of encouragement. That’s amazing to me.

Brian was in great spirits when we drove down to see him. He was “laying rubber” in his power chair. He was “off-roading,” as he put it, up on the roof in the mulch pit earlier today—crazy kid. Brian quote of the day: “Yeah, I’m just chillin’ here with my handicapped homies.” Today he went to the church service at Magee. He said only a few people were there but I’m really glad he went.

We had a nice family dinner with him in the cafeteria at Magee. It’s so sweet how Camrin seems to enjoy helping him, cutting his food, putting on his hand strap that holds his utensil. She acts as his personal nurse. Tomorrow night we won’t be coming down to the hospital. It will be our first night away from him in two weeks.

In his early days at Magee, Brian would sit for long periods of time, looking out at the city of Philadelphia and trying to get his legs to move


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