Reflections by Dan (My Life for 16 Years)

The following is an essay Daniel wrote for his English class.  It is powerful.  It makes me cry every time I read it.  It reminds us of our hope in Christ.  Please take the time to read it.  You will be blessed!  Daniel I am so proud of you.  I love you.

My life for 16 years

“Mom?”
“Mom?”
“Hey David! How are you?”
“Mom?”
“Mom?”
The only word David could say was Mom. It was his response for everything. Any question he was given he responds with “Mom!” Even when nothing was happening he would say “Mom!” over and over. The stress this caused my family must have been ten times worse for David as he tried to talk as he always had. He was such an able kid for such a long time. For example five years ago he was able to walk, talk, shower, eat and even go to the bathroom by himself. I remember when he went around our old street on his scooter!
David’s disease caused sight loss and he began to lose his vision at the age of eight. This was the beginning of an extremely long journey till the end of his life. In a few years he had lost almost all of his abilities. He was in need of help for everything. It was different and difficult but we all got use to helping him. He did not act uncomfortable with us aiding him and it eventually became part of our lives. I assisted him often but eventually it got too much for me and the last few months before David died, I was unable to help him. I could be there and sit with him, but it was very hard for me to help him with anything. He had changed so much and it was so different.

The point where we all broke down was when we heard he may have to go to a feeding tube. My parents had gone to a meeting in Rochester where David’s specialist doctor was. It was a very hard trip for them. David by now was very irritable all the time because of many things going on in his body. My parents came back that day and told us the horrible news a few days later, “the doctors said that David has 6 months or less to live.” It was as if the air was sucked from the room. I was drowning in saddens, fear and confusion. David seemed healthy, how could he only have only six months to live?! All of us had feared this day. We did not want to see him in a vegetative state so we decided not to put a feeding tube in. God decided that this was David’s time to go home, and it was not our right to mess with that. We were just going to prolong his pain and suffering here and keep him from his new life in heaven. We fed him as much as he would eat and gave him as much drink as he would drink. We kept him in comfort until his last breath.

The last few days were hard. One day I had to leave school because of my emotional state. This was also the day that David went to the hospital where he would spend the last few days of his life here on earth. I have a feeling that I was connected somehow to my brother, either through Christ or just our family connection. I went to a friend’s house to get everything going on off of my mind. Later that day my dad came and brought me to the hospital. There were family friends there; I thought they were there to say their last goodbyes. This broke my heart but for some reason no response came out of me. I saw my brother lying there. Awake but heavily sedated. He had been experiencing terrible pain he was irritable and he was moving constantly before he was brought to the hospital. He was on a lot of pain relievers, because of the amount of drugs they had to give him on a constant level they had to put in a pick line through his arm. This led to a major artery so the drug could be instantly administered. I remember watching the doctors put this into David. I held his hand the whole time. David was still as a rock.

There were other procedures that were done to David; I stayed for all of them. After the doctors were done I remember some friends of the family came and stayed in the room with us. We never really spent time with them before this so it was quite annoying, they put all there input on what they though we should do and I wanted them to leave. We didn’t feel comfortable at the time telling them to leave, but eventually they left. My dad and I did not spend the night at the hospital but my mom did. If anything were to happen we wanted someone to be there. The next day we came in the morning early because we both could not sleep. Into the next day we were bombarded with visitors and we worked out a plan with the nurse, if someone was in our room for more than five minutes then he would come in and pretend to start doing something telling the people they had to leave. It was great plan and it worked very well. Seconds took minutes and minutes took hours, time stood still. Eventually my girlfriend came. It was such a great thing to have her there. She didn’t have any way to get to the hospital but we were able to get my uncle to bring her over. I left the room for a while with her. We walked around and I tried to forget what was happening, but there was no forgetting. We talked and it was just so sad for both of us. She comforted me and helped me get out what was trapped inside my mind, brewing into terrible thoughts. She was my safety and was and always will be there for me.

His state worsened and worsened and eventually we had to call Christopher, my brother, to come from Boston. We did not want Christopher to be away when David died. For a while we felt like we had called Christopher for no reason, David was getting better! But those hopes and thoughts disappeared quickly after lots of things happened. David was on the edge. We eventually stabilized him and we went to bed. My mom had spent the night in the room last night and got no sleep, so my dad and I decided to stay in the room. At first I thought I would never sleep but I went out quick. It was by the grace of God that this happened because there was so much noise and so much stuff going on I would have never slept on a normal day. Later that night David was a having a hard time breathing and his blood oxygen level dropped very low, so my dad had me run to get my mom and brother in another part of the hospital. I had just woken up and my contacts were left in on accident so I could not see. I was scared and mad that I could not see and I could not find the right room and I was more than mad at this point, I was pissed. My brother was about to die and I was not going to be able to be with him and neither would my mom or brother because of me. Eventually I found which room they were in and ran with them to David’s room. Me waking them up freaked both of them out and it was a very stressful moment. We got to David’s room in time and he had not died yet. We stayed there by David’s side for the rest of his life. I was on his right side and held his hand the whole time. One time he almost died but he came back it was the worst moment in my life. His blood oxygen level reached forty-three, a normal healthy persons blood oxygen level is above eighty-five.

We were praying constantly for him to not be in any pain. We thanked God for our time with him here on earth and everything we could think of. He came back and his Oxygen level raised to seventy something. Later it fell again and he was un-able to bring it back up. The heart monitor was going slow and was beeping like crazy we decided to turn it off. He took his last breath. It was strange, I almost didn’t know, his breathing was already was so light. Weeping was the only sound. Sadness was the only sight. Though his body was in the room he was not, and I already missed him. David will always be apart of me and I will forever be changed.

David impacted me in so many ways. His disease has caused me to have to be the big brother for some time now. I have grown up and been exposed to more pain and trouble in my life than some people will ever have to deal with in their entire lives. That has made me grow into the person I am now, a compassionate, loving, patient (most of the time) kind of person. He has put into me a deep care for people who are affected by diseases and other issues. I have also become very good at listening, and have learned how to act around people in pain or people who are going through tough times. David has also brought me closer to many people. Instead of having a ton of not so good friends, it has helped me to have a group of about ten really good close friends. Most importantly, he has made me question my faith and search for the right answers. This whole event (my life) has reinsured that my faith in Jesus Christ is so true. That there is no other god in the universe and I thank David for that.

I would love to hear your comments

Riding a Tandem

We just returned from a week's vacation in Bonita Springs, Florida.  Dan brought along his buddy Josh to keep him occupied for those moments his decrepit parents just wanted to read and not swim in the balmy 65 degree waters of the Gulf Coast.  While it wasn't as warm as we would have liked it we had fun and kept busy doing things that didn't include shoveling, scraping, or lake effect snow.  We took several long walks on the beach, read a few novels, went bike riding daily, ate deep fried grouper fingers, fries and a drank a Corona at Docs on the beach, played a game of LIFE, slept late most mornings, went fishing, went canoeing, went to a Pops concert at the Philharmonic in Naples, enjoyed spending time with Nana and Papa, hung out in the hot tub, went shopping, and walked through an art show in Naples.

By far one of my favorite activities was our daily bike ride.  The community Brenda's Mom and Dad live in has miles of bike riding trails.  We ride through some beautiful neighborhoods, past golf courses, through a couple parks, and by a marina.  We got exercise, had some good talks, and enjoyed soaking in some Vitamin D!


Often on these rides my mind would flash back to the countless times David and I rode a tandem bicycle together over these very same trails.

I could hear his voice trying to to engage every person who passed us with a cheery Hello or a, "Hi I'm David, who are you?"  I remember trying to describe to him the color and design of an exotic tropical flower, the shape of a lizard, or the looks of the girl who just passed us on her bicycle.  At times it was a challenge to keep the bike balanced because David was more focused on the people going by him than he was on doing his part in keeping the bike going forward and upright.  Often I would have to encourage him to keep peddling.  When he got tired he just stopped doing his part.  I remember sometimes grumbling having to always be the one to take David on the tandem.  Now I miss him and our tandem rides together.  I wonder if there will be tandem bicyces in heaven?  If so David gets the front and I'm going to sit on the back seat pretending to peddle just like David did!

As I continue to plod through my grief over David's death, I am beginning to discover that it is very much like learning how to balance a tandem bicycle.  When I first started riding with David I thought each ride would be our last.  We would careen down the road or bike path, looking like two drunken sailors after a long night on the town.  I would try to go right while David was leaning left listening to the faint voice of a fair maiden who just passed us by.  But after a few practice runs we started to get into a rhythm.  Each time we learned a little more how to ride together.  The same is true for grief.  The first few days and weeks after David's death were horrible.  Everything was out of balance.  Just the littlest thing would topple me over. But as the days, weeks, and months go by I have began to find a rhythm as I practice riding with my new tandem bicycle partner called grief.  While there are still times I wobble down the road, I am beginning to find comfort and even joy in the challenge of living without David along for the ride.  Currently I am working on trying to master the art of balancing how to cling to the memories of the past, yet at the same time moving forward into the future.  To be honest it is hard.  If you see me wobbling down the road encourage me to keep on peddling.  I'm glad many of you are riding along side of me.  Just as I had to continue to encourage David to keep peddling, I need you to do the same for me.

The Dash In Between

This morning as I was relaxing in my recliner, yellow fire dancing in the fireplace, sipping a dark french roast coffee from Brueggars, enjoying the beginning of a new day, my cell phone rang, indicating I had just received a text message.  It was from my son, Daniel.  It simply said,

"Mr. Shafer from English died this morning."  

I don't know who Mr. Shafer is, if he was sick, or what he died from; all I know is that he passed away sometime this morning.  It wasn't planned.  I'm sure it caught his family, friends, and students by surprise.  I know that they are grieving.  My heart breaks for all of them.  Please pray for his family.

Mr. Shafer's death stirred something inside of me.  At first I couldn't identify it.  It took me a few minutes to wrap my head around the emotion I was feeling.  And then it became clear, it was fear.  Not the fear of actually dying, although I don't particularly look forward to it, but the fear of getting to the end of my life and discovering that I had wasted my life.  It could have just as easily been a text from one of Daniel's friends to their parents saying, "Dan Pfohl's father died this morning."  I wondered if I knew tomorrow was my last day how I would live my life differently today?

Not wanting to really think about this I packed my gym bag and drove to the YMCA to work out.  As I watched my heart rate climb to 140 beats per minute my mind was going even faster as I thought about my Dad's unexpected death at the age of 58, David's death at the age of 20, and now Mr. Shafer.  In an attempt to slow down my mind or even shut out the myriad of thoughts passing through my brain I plugged my skullcap headphones into my itouch and selected a Chris Rice album, Amusing.  A couple songs into the album his song, Tick Tock started playing.  If you have a few minutes listen to the song: Tick Tock by Chris Rice.  

It was the exact song I needed to hear.  It took my racing thoughts and slowed them down.  It remineded me that its not important how long I live but how well I live today, moment by moment that really matters.    David's short life is a perfect example of this.  What matters is how well we live the dash out on our tombstone.  (You really do have to listen to the song.)

Thank you Mr. Shafer for living out your dash the best you could.  While I am sure you were used in the lives of many students and people thorughout your life, even in your death God used you to motivate me to make my life count.

How are you doing at living out your dash?

Comfortably Numb

Some of you will recognize the title of this blog as a Pink Floyd hit that first appeared in 1979 on their album, The Wall.  While I am no longer a Pink Floyd fan, nor do I continue to support his methodology of getting numb, the title of the song captures how I am feeling.  I am both comfortable and I am numb. 

I had lunch with a friend who lost his wife almost three years ago to cancer.  As he described his journey through grief he talked about a long period of time where he just felt numb.  No highs, no lows, just numb.  I know what he is talking about.  I have sat down numerous times to try and write something on this blog, wanting to feel something, to share something about my journey through grief, only to have my fingers frozen to the keys, mind blank, emotions flat lined.   

But I am OK with that and surprisingly I am learning to be comfortable with it.  I know it is normal.  I know it is a phase.  And I am trusting that God is at work; healing, molding, watching over me and my family as we all wrestle with this complicated animal called grief. 

I am comfortably numb.

CTRL-ALT-DEL

Have you ever left your computer on for more than a couple days without restarting it?  The longer you leave it up and running the more sluggish it becomes.  What I really hate is when the program I am working on freezes up and won't run.  Important information like my high score for Hearts or Solitaire is lost for eternity.  When this happens I hit CTRL-ALT-DEL and reboot my computer.  Yes I am a PC!  Its known as a soft boot or a warm boot.  It closes any programs that may still be open and restarts my computer.  It gives the computer a fresh start.  It erases some of the temporary files, fixes up the registry, and cleans out the ram.

I have discovered that grief, when accepted and worked through, is like a soft boot on my computer.  It gives me a fresh start, it reorients my thoughts, it allows broken pathways from my mind and heart to be repaired, and it allows me start over again.  Ignoring my grief only causes me to feel tired, overwhelmed, emotional, and unfocused.  So I am learning to allow grief to work its magic.  I don't fight it, in fact sometimes I intentionally hit CTRL-ALT-DEL and allow the tears to flow, the memories to percolate, and the healing to take place.  Our counselor calls it a planned or intentional grieving activity.  I think it's easier to simply call it a reboot.

One of the benefits of keeping my Warren 8.0 operating system rebooted on a regular basis is I am slowly finding that my memory is more often filled with good memories than bad.  With each reboot memories of David's suffering and loss are replaced more and more with memories of his laughter, his passion for life, his love for food, his zeal for God, his child like faith, his respect for life, and his compassion.  Of course the bad memories sometimes poke their ugly head through, like a virus on my computer.  Yes, I am a PC!  These memories are stored on my hard drive and most likely will have a place in my operating system until I get my final upgrade, like David already has.  Until then I am going to unashamedly hit CTRL-ALT- DEL and allow grief to refresh, erase, and reorient.

Dear David...

 Dear David,

Today marks three months since you left this world.  How fast the time has flown.  I can only imagine you are still exploring the beauty and wonders of heaven.  It excites me to ponder what you are enjoying the most.  Is it your vision?  Is it being in the presence of your Savior?  Is it your new mind and body?  Is it sitting around talking with Grandpa, Melody, and others; listening to their stories of adventure, faith, pain, coming to faith, and the daily new discoveries of heaven?  Sometimes crazy questions enter my mind like, "Have you run into King David yet?", or "What color eyes does Jesus have?"  What ever you are doing I rest knowing you are whole and happy.

David, I wanted you to know that we are doing OK.  The first couple months were hard but we were so grateful your suffering was over.  Now we just miss you.  There isn't a day someone doesn't ask how we are doing, tells a story about how your life impacted theirs, or we don't start laughing about one of your many crazy antics.  Thankfully our faith has helped us to keep strong.   I was reading two days ago and came across this verse in 1 Thesalonians 4:13,

And now, dear brothers and sisters, we want you to know what will happen to the believers who have died so you will not grieve like people who have no hope.

While we grieve David, we do not grieve as those who have no hope!  So don't worry about us.  We continue to look for ways to use what we learned from loving and caring for you to serve others.  I miss you and love you.

Love,

Dad

PS: Hey Buddy, do me a favor and give my father a hug from me.

I'm a leaker, she's a gusher

Brenda says I'm a leaker.   Yes I know the word doesn't exist in the dictionary, but it is still a good word to define one of the ways I am dealing with my grief.  For little to no reason at all, on a fairly consistent basis, my hazel eyes will begin to water and slowly leak tears.  I don't cry inconsolably, I don't cry for long periods of time, I just simply leak.  Saturday I was carrying down Christmas decorations to store away for another year and I saw David's walker and wheel chair stored in the corner of our basement and I began to leak.  This morning I read a friends Facebook status that said,  "another Battens Disease little one passed away last night" and again I started to leak.  I sat tonight and listened to my son share his struggle dealing with his brothers loss and you guessed it, I started to leak.  Leaking has become a normal part of my life.  A few tears escape, a quick wipe with the back of my hand or a tissue if I am lucky enough to have one on hand and on I go with life.  It keeps things from building up in my life.  It gives me an immediate way to release my sorrow.  So if you see my eyes fill up with tears and slowly begin to leak onto my cheeks, I'm OK.  I'm just releasing some of the pressure that is building up in my life.

Brenda on the other hand is a gusher.  She stores up her tears until she can't hold them back anymore and then she hits the release button.  She wrote the following in her journal;

"As I sit here tears are flowing from somewhere deep inside me.  The dam has been breached and the tears that have been held back for weeks are beginning to leak out.  Memories come and trigger the flow.  Fears of future loss trigger the flow.  Thoughts of other's pain triggers the flow.  They have been gathering and waiting to be released.  Like in our creek, life flows on like the water and brings with it broken branches, leaves, and other refuse, trash thrown out by passerby's, rocks dislodged.  They hit a bend in the creek and trap the various items carried by the "flow of life."  They begin to build up until the water is restricted.  The flow is stopped until the pressure is so great it either finds a new path or dislodges the plug in the dam.  It works the trapped refuse free and pushes it along until once again the water flows freely without resistance.  That is how I deal with my pain and all the broken bits of my life.  They jam up as a dam until somehow the flow of life triggers a release, pierces a hole in the dam.  Lord, thank you for the tears.  For walking with me through the sadness and loss.  For letting me be able to feel."

As I have thought about our two different approaches I am reminded that there is no one correct way of dealing with grief.  Leaking is no better than gushing and gushing is no better than leaking.  They are just different ways of releasing our sorrow.  We are still learning how to accept and allow each other the freedom to process our grief in our own ways.  As Daniel reminded us this evening, "We need to give each other some slack."

No matter whether you are a leaker or a gusher the following verse from the book of Psalms is true;

You keep track of all my sorrows.  You have collected all my tears in your bottle. You have recorded each one in your book.  Psalm 56:8