“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, 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.
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.
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.