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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