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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