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

Holes

Brenda repainted David's room today with the help of two dear friends.  She settled on Stratton Blue.  I think it is the same color as our laundry room.  After hours of work and two coats of paint the room looks very different.  As you walk into the room even the smell tells you that something has changed.  But it's still David's room.

As I was preparing the walls to be painted memories flooded my mind with every hole I patched.  On one wall there were 10 or 15 divots where David's rocker/recliner nicked the wall as he rocked with zeal listening and creating in his mind's eye the Yankee or Green Bay Packers game he was listening to.  Often as he talked on the phone with friends he would rock back and forth, not meaning to gouge the walls, but lost in conversation with someone about his latest girlfriend or sports team's victory.  Each hole an expression of some emotion he was experiencing.

The biggest hole required a 4 inch patch and three coats of spackle.  It's where we mounted a video camera that allowed us to check on David from our bedroom.  He never knew the video camera was there.  It allowed us to keep an eye on him.  Now he keeps an eye on us. 

Several of the holes were created by small nails that held up Green Bay and Yankee paraphernalia. As I filled in the two holes that held up the Bronx Bombers Blvd. sign over the door to his closet I imagined the joy David would have had if he had lived long enough to see the Yankees win the World Series this year.  But I also pictured the disappointment he would have experienced this past Sunday as the Packers lost to the Cardinals in over time in the wild card game.  While it pains me to admit this, in honor of David I think I am going to root for Brett Favre and the Minnesota Vikings for this years Super Bowl 

One of the the things I discovered is that patching holes is not a one step process.  My friend Norm at True Value said some holes will take up to three coats of spackle so be patient.  I am discovering that the same is true about the holes that have been left in our lives since David passed away.  The nicks left by past memories, the gaping hole left by his absence as we sit around the dining table or at holiday gatherings, the hundreds of small holes left by stories remembered, tears shed, and questions that remain unanswered all cry to be filled in.  Some only required a quick pass of the putty knife and a small amount of putty.  Most I am finding are going to need several coats of spackle, light sanding, and lots of time.  I think I may go back to Norm tomorrow for my next counseling appointment.  

The Ramp is Clear of Snow

This is a picture of the ramp that leads to David’s wing of our home.  We no longer need it or use it but I still keep it clear of snow.  I’m not really sure why I do it but I feel compelled to keep it clear.  I think it reminds me of the privilege it was to care for David and meet his needs.  I miss being needed by him.  For the last several months of David’s life we did everything for him.  I guess the ramp is symbolic of the joy it was to be his Dad. 

I also think the ramp is a something I am holding onto because it is something I don’t have to let change.  In the past two months our whole way of living has changed.  No more aids, no more medications, no more doctors, no more crazy paper work, no more diapers, no more scheduling issues; poof in the blink of an eye our way of living changed.  But  it is still snowing and I can shovel the snow on David’s ramp.

So I put on my boots, my Carhart jacket, the faux bunny rabbit lined ear flapped hat that once belonged to David, and my gloves and shovel the snow.  When you come to visit, please feel free to use the ramp.

2009: A Year to Remember!

2009 has been an eventful year to say the least.  Yesterday Brenda was reflecting on some of the highlights.  In January we spent a week in Bonita Springs, Florida.  We walked the beach, swam in Mom and Dad's pool, hung out in the hot tub (one of David's favorites), and simply enjoyed being together as a family.  All of us took turns reading to David from Passages, a series Focus on the Family produced.  He would rub his hands and legs in anticipation and anxiety, begging to read just one more chapter.

On July 28th Brenda and I celebrated our 25th wedding anniversary.  We found a cozy bed and breakfast in Rockport Massachusetts right on the ocean.  As we sipped a glass of wine and enjoyed fresh crusty bread with dipping spices, olive oil, and fresh olives provided as a surprise from our son Christopher, we rehearsed our twenty five year journey together.  I pray we are blessed with 25 more!

In August we went to Door County, Wisconsin for summer vacation.   We picked cherries, hiked, enjoyed cousins, aunts, uncles, and grandparents, slept late, and ate too much.  It was obvious that this was going to be the last time David was going to be able to travel this far.  While he was very limited in what he could do he enjoyed being with his family.  Our favorite part of the day on vacation is in the morning sitting out on the deck drinking coffee.  While David had lost much of his ability to really interact with us one morning out of the blue he simply said, Isaiah 41:10.  He didn't quote it he simply said the verse reference.  It was one of his favorite verses.  We looked it up and read these words,

"So do not fear, for I am with you, do not be dismayed, for I am your God.  I will strengthen you and help you, I will uplift you with my righteous right hand." 

In September Brenda and I went on a cruise to Italy and Greece to celebrate our twenty five years together.  It was a time to recharge our batteries, to celebrate our life together, and explore.  Little did we know it was also a time to energize ourselves for the three weeks we would have with David before he died. 

October was a month filled with great trial and pain but also ultimate release and joy as David's earthly journey came to an end.  His memorial service was incredible.  Family and friends served us and loved us.  It is hard to put into words how we experienced God's love and care through this time.  We miss him and even find ourselves grieving more now than we did when he first died.

We made it through our first thanksgiving and Christmas without David.  I think the anticipation was far worse than the actual days themselves.  We pulled in close as a family and celebrated.  There was a new strange mixture of joy, sadness, anticipation, old and new traditions, memories, laughter, heart ache, grief, and hope that permeated every corner of our home and hearts.  God was with us, strengthened us, and allowed us not to dismay.  Thank you David for reminding us that we do not have to fear!

For the past thirteen years I can't think of a time I didn't start the new year wondering if this is the year Battens will take David's life.  This year I don't have to do that and I am grateful.  David is where he should be.  We miss him but know we will see him again.  We rest knowing God was never once surprised by the events of 2009 and we rest knowing he holds this New Year in his hands as well.  We look forward to what adventures he has in store for us.  The journey still goes on!    

Merry Christmas!

It must have been cold.  No doubt it was dark.  Undoubtedly it was unexpected.  From out of the darkness an angel appears wrapped in heavenly light.  Terror fills both shepherd and sheep.  He was sent by the Father to share Good News; a Savior has been born.  News not just for the shepherds, but for you and me, for all people.   It was not to bring condemnation, but to bring joy.  He speaks to the shepherds and he says, "Do not be afraid."

So, we attempt to live out the angels proclamation to not fear, yet not always with success.

We have feared facing Christmas day without David's child like faith and love for Christmas. We at times fear the unexpected ways in which grief wraps it's tentacles around us, battering our tender hearts.  Sometimes as I talk or share with people about David I can feel my heart breaking, and I fear breaking down in front of them.  I fear the the potential negative impact of David's suffering and death on Chris and Dan. 

Thankfully I cling to another message given again by an angel.  The angel Gabriel comes to Mary to tell her she was going to give birth to the Savior of the world.  She of course ask the obvious question, "How will this be since I am a virgin?"
 

Listen to his response, "For nothing is impossible with God." Nothing!

If that is true, I have nothing to fear.  Christmas will be different but a time of celebration and joy.  When grief rears it's ugly head, we will meet it head on and cling to God's promise to never leave us or forsake us.  When my tear flow freely, I will will remind myself that even Christ cried when he lost his friend Lazarus.  When I worry about my boys, I will lift them in prayer before God, reminding myself that God loves them even more than I do.  I have nothing to fear.

I hope you too will discover the peace in knowing that with Christ there is nothing to fear.  Join me in joining with the angels in praising the birth of our Savior.
 ¹³ Suddenly a great company of the heavenly host appeared with the angel, praising God and saying,

¹⁴     “Glory to God in the highest,

and on earth peace to men on whom his favor rests.” 

May his favor rest on you.

400 + cards and notes

Yesterday I sat down and reread the sympathy cards we received after David died. I wept, laughed, thanked God, moaned at some of the Hallmark poems, mourned the loss of David's presence in our home, remembered stories and times past, and prayed for the pain to lessen. I loved it and hated it at the same time. Each card or note was a reminder we are not alone. Each card was a reminder that David is dead. Some of the people who wrote I didn't know, faceless yet passing on their stories of how their lives intersected with David's, their prayers, and their sympathy. Without knowing it each person who sent a card became the hands and voice of Christ reminding us that we are loved, not alone, and that David is safely home, whole, and happy. To be honest I have never been very good at writing or sending a note when someone dies. I never really thought it was that helpful. I was wrong. I will do better.

The following are excerpts from some of the notes friends wrote to us. Listen closely and you will hear the voice of our Savior!

"David taught me many things. As I used to tell him, he saw way more than most people who could actually see. In so many ways he is the person I want to be. I can't begin to understand how difficult this walk has been for David and all of you. I think as I look back and say, why did this have to happen, why did David have to have this disease...I then look at all he is and how this disease probably made him the person he is and shaped all of you too...and because of that, how many people have come to either know Christ, know Him better or just see what an uninhibited and unashamed love for Jesus looks like. As I think about how God spoke to Brenda about the difference between our earthly tent and our heavenly dwelling, I can see how the extraordinary challenges, pain and suffering that was a part of David's earthly tent, was used to bring extraordinary glory to Jesus Christ. Despite everything, David showed a joy that was contagious and a faith that was unshakable. It transcends his physical circumstances and people knew that joy came from somewhere, and David told them where it came from."

"As I think of David's life, I am almost jealous. David was surrounded on earth by so many who cared about him - his school community, his church home, an extended family that loved him, and most importantly his two brothers and his parents. His parents poured Christ into him and it showed! When I mentioned his name anywhere it seems, everyone knows him and has a David story to share. Now he is with his Heavenly Father, seeing again, whole and no longer in pain. I look forward to my HOMEcoming and the opportunity to thank David in person for how his life and death encouraged me."

The following is a quote a friend shared from C.S. Lewis' book, The Last Battle, the closing book of The Chronicles of Narnia series: "And as He spoke He no longer looked to them like a lion; but the things that began to happen after that were so great and beautiful that I cannot write them. And for us this is the end of all the stories, and we can most truly say that they all lived happily ever after. But for them it was only the beginning of the real story. All their life in this world and all their adventures in Narnia had only been the cover and the title page; now at last they were beginning chapter One of the Great Story which no one on earth has read; which goes on forever; in which every chapter is better than the one before."

"On the day that David regained his sight, I Googled his name. When nothing came up I started to laugh and cry at the same time. What a strange thing that someone who affected so many lives doesn't even get one listing in the world's measure of success. Yet thousands are better for knowing him."

"You guys have been on my mind and especially coming up on the first Thanksgiving without David -- what pain and grief with his conspicuous absence. As I write these words, I paused, visited your blog and read through your entry from a few days ago. Powerful. I watched the YouTube and tears flowed freely, again. I read through the comments of what God has done since his passing, and marveled at God's incredible loyal love, his abounding grace, his furious love (a Brennan Manning phrase) and paused to know that he enters into your pain and loss. David's present state is that which gives us hope beyond belief, and is the only salve for your aching emotions. A season when cherished truths and theology embraces us in our pain. No, the Father embraces us with his strong arms of love and words of hope."

Thank your Jesus for your words of comfort and grace found in the epistles of our friends.

Is it OK to talk about David?

I have observed a very interesting dance that takes place when I come in contact with someone I haven't talked to since David died. It starts with a small shuffle of the feet, at times an awkward hug, followed by two vigorous pats on the shoulder or back if you are a man (that makes the hug manly), quickly followed by hands being stuffed into pants pockets or wrapped around their chest as if attempting to increase their body temperature, followed by an audible attempt to ask how we are doing but then realizing or thinking that must be wrong to ask so they apologize. I call it the shuffle, hug, pat, hand stuff or arm wrap, question and apology do see do square dance. And just like most of you didn't like having to square dance in high school gym class, I can't imagine you like this dance with me or anyone else who is grieving the death of someone they loved. So what do you do? Here are a few thoughts I have been ruminating on over the past couple months.

1) You have permission to ask us about our loss of David. We need to talk about him. It is a vital part of processing our grief. Sometimes we may go on and on about this story or another so be prepared. Sometimes we may start crying. That's OK. Don't tell us we don't have to be sad because David is in heaven. We know he is but we miss him and it hurts. If we say, I don't really want to talk about it right now don't push us. There are going to be some people we feel more comfortable talking openly with based on the depth of our relationship. Avoid the question, "How are you doing?" It is too open ended. Often that question makes me think a person feels they have to say something so they fill the awkward silence with, "Hey, how ya doin?" Often by you sharing a memory or story you have of David you give us an opportunity to enter into a conversation about David and how we are doing. You are not forcing us to grieve when you talk about David, you are simply entering into the grief we are already experiencing. I read the following a couple days ago in a booklet on grief someone sent us;

Permission is the key to finding a healthy walk through the grieving process. Grief is still a "prison of silence" that must be broken into by your friends,and out of by you.  This can only happen when both discover that grief is not an enemy to be avoided, but a  process to be followed.

2) Be careful of using theological mumbo jumbo. Just read the story of Job in the Old Testament. His friends poked him in the eye with theological truth that failed to touch the reality of his pain and suffering. At times I think people feel like they have to give God an out for allowing David to suffer with Battens Disease and then die. He doesn't need one. Isaiah said it well in chapter 55,

8 “For my thoughts are not your thoughts,neither are your ways my ways,” declares the LORD. 9 “As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.

Don't try to fill in the gaps God has chosen to leave unfilled or unanswered. I am discovering they are best left open. In fact often the questions we have don't even have an answer. C.S. Lewis wrote,

Can a mortal ask questions which God finds unanswerable? Quite easily, I should think. All nonsense questions are unanswerable. How many hours are there in a mile? Is yellow square or round? Problably half the questions we ask - half our great theological and metaphysical problems - are likely that.

Sometimes we couldn't understand the answer even if God explained it. Or God may have explained it in Scripture, but we fail to notice it or refuse to believe it.

Children don't understand why their parents won't let them stay up late, eat cookies in bed, or feed chocolate to the dog. They don't understand why we discipline them, make them clean their rooms, or take them to the dentist. One day when they grow up, they'll understand.

And so will we.

3. Be willing to be silent! Some of the best words of comfort have been an embrace where your tears stained my shoulder. Sometimes words are too loud, abrasive, like lemon juice on a paper cut.

Hope this has been helpful. I am looking forward to hearing your response.

What do I miss about David

I find myself thinking about David a lot these days. Sometimes a song will come on the radio and it almost seems to transport me to another time and space where David is still trying to sing his version of the song as he waves his hands to the beat of the song. Unfortunately the transporter fails to truly transport me and all I hear is silence. I walk by his room and I feel drawn to open his door and look in. It's still empty. In the basement sits his Christmas Tree, taped shut in a box, not to be opened this year. No blinking colored star, blue lights, and special ornaments. They too are sealed up, wrapped in tissue paper, sitting high on a shelf in the darkness of the basement, wondering if they will ever be hung again. Do we hang his stocking this year made by his Nana? Christmas music makes me think about David. As soon as Sunny 102 started playing Christmas songs, way before Thanksgiving, David was already listening. They sound a little different this year, a little flatter.

I miss him so much. Even though I often would complain about the noise level in our home with so much going on, I miss it. I miss hearing Adventures in Odyssey, country music, phone calls, aids sharing life stories and adventures with David, and base ball. I miss going for ice cream, eating breakfast at Dave's Diner, hanging out in the hot tub, or watching Annie for the 30th time.

One of the things I miss the most is just holding him. I loved hugging him. While he was 20 years old, he still let me hold him, rub his back, and run my fingers through his hair. He hated thunderstorms so I would often climb into bed with him, hold his hand or simply rest my hand on his shoulder. I can't do that anymore. He was soft and cuddly. He was like the Pillsbury doe boy. But the softness is gone.

In the book, Lament for a Son, a father who lost his son writes the following words after they had buried his son;

"I catch myself: Was it him we laid in the earth? I had touched his cheek. Its cold still hardness pushed me back. Death, I knew, was cold. And death was still. But nobody had mentioned that all the softness went out. His spirit had departed and taken along the warmth and activity and, yes, the softness. He was gone."

I miss David's softness. As I shaved David for the last time and dressed him before he was placed in the casket, I knew David was gone. His softness had departed. I look forward to feeling it again. I miss you David.

Thanksgiving

Yesterday was Thanksgiving Day. We opted for a quiet dinner, enjoying it with Brittney and our good friend, Nicole. My family joined us later in the day for coffee, desert, and games in the basement. Oh did I mention that I beat my brother, Wayne, playing pool? :)



While there were moments we missed David, we enjoyed memories of years past and the hope of enjoying a good meal with him again. I missed him sitting to my left. To be honest it was nice being able to focus on everyone else. I guess this is a part of developing our new normal.

What am I thankful for?

• My family and the joy of loving them and being loved by them
• The journey we have been on for the past 13 years with David
• The journey that still remains before us
• The ripples that continue to emanate from David's life and death
• The hundreds if not thousands of ways we have been loved on and served over the past several years
• The privilege of seeing the church, the body of Christ, at work as it cared for me and my family
  
• The rock solid hope of heaven and eternity
• My best friend and partner, Brenda. I am so blessed to have her as my wife
• Chris just got a job with BBN Technoligies (bbn.com)
  
• The joy of watching God shape and lead Daniel as he matures into a young man who loves God
• Knowing that God loves me and forgives me, no matter what I do
• The joy of knowing that our journey has motivated others to seek after God

I hope you took a few minutes yesterday to reflect on what you are thankful for. It goes without saying that I am grateful for those who have shared our journey through this blog. God's blessings on each of you.

Ripples

Yesterday was November 22nd, exactly one month since David's death. We continue to swing between extreme joy as we think about heaven and David's adventures there and the grief of missing him here. Thankfully the distance between these two extremes are slowly becoming less and less. There is no doubt there will always be a gap, but we are choosing to allow this gap to be a reminder that we are to live with an eternal mindset. There is a great verse in the book of Philippians that says,

Forgetting what is behind and straining toward what is ahead, ¹⁴I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus. Phil. 3:13 & 14

The suffering David experienced, the physical challenges he faced, the dreams he had that were never attained are now in the past. We cling to the lessons learned and the model he gave us of a life well lived. No matter what obstacles got in his way he pressed forward. Heaven and the promises we rehearsed with him allowed David to press on. If David could do it, so can we. So we allow the gap between our joy and sorrow to remind us to strain toward what is ahead, to press on towards the goal to win the prize for which God has called us heavenward in Christ Jesus. I hope you are doing the same.

Over the past four weeks we have heard story after story of how David's life continues to impact people. His influence continues to ripple outward. We know of a father and daughter who have reconnected after years of being alienated, an old friend who felt like God had turned his back on her only to recently admit she had turned her back on God and is again praying, a business man who has started to boldly share his faith in Christ, and countless people who have begun to ask themselves what allowed David to make such an impact on so many. Please continue to share your stories with us. They are medicinal and bring us great joy.

Many have asked for David's article

The message Doug gave at David's memorial service was in part based on an article David wrote for a school project. Many of you have asked for a copy of it. Here it is:

My World Has Changed
I Learned That Life is Not Fair - But I Don't Have to Face It Alone Anymore

By David Pfohl

In the blink of an eye, in the drop of a minute, the way I look at the world changed.

For so long I have been very positive about my world. I looked at the good things and made the best of a not-perfect world. I was an encourager, a smiling face walking through the halls talking and chatting with everyone. Connections meant everything to me. I learned new ways to do simple things. I coped and always tried my best. I didn't pay attention to fairness. I was cheerful and happy.

Last week I started to look at fairness differently. I realized that I had lost more vision and started thinking, "This world isn't a fair world; it's an unfair, nasty world." I started asking God every day, Why?

I decided it was okay to cray to Him and my friends and not just keep it to myself. Some of my joy has been replaced with pain and sorrow.

It's really hard not to dwell on my loss when I see people on TV and other students playing sports. The only way for me to play baseball is in the backyard by myself, or sometimes with my dad.

When I hear kids talking about how cool it is to play soccer, baseball, and basketball, sometimes it makes me feel angry and jealous. Sometimes people take their sports ability for granted.

I would give almost anything to be able to play baseball. Now the only way I can feel a part of baseball is by sitting in the stand or listening to the TV.

My sight loss has cost me friends. The girls I know are really nice to me, but I wish I had more guy friends. With guys you can share your wishes for goals and tell them about who you really want to be. I really wish I had people to walk to classes with. this morning before school I thought, "Why do I always have to walk alone?"

One of the things about my life that is unfair is that people tease me. I'm not the only one who gets teased in this school. Treating people disrespectfully and teasing them is rude and wrong.

When somebody teases me, I get upset. Nobody can understand what I go through. Nobody can walk in my shoes. Nobody can cry the same way I do.

When a friend listens to my problems, it relieves some pressure. When I recently told two friends that I had lost more sight, they said, "I can't imagine how you feel." That was an honest answer.

Certain songs help me feel free. Music is appealing to my heart. A song like "Amazing Grace" is sweet because it reminds me that someday I will see again. I can't wait until I see again.

I still am the person who loves to encourage people and be happy, but now I need to share more with others. I carry a little more need inside. I don't need to do it alone anymore.

[David was a prophet, wise beyond his years. I hope all of us take to heart the closing line of his essay, "I don't need to do it alone anymore." We were created to be in community with God and with others! We are doing well. Brenda is finally getting over the flu, bronchitis, and an ear infection. I went back to work a couple weeks ago and Daniel is working at catching up at school. The house is very quiet. We are still getting used to this change. I promise to write more later. ]

I wonder what it is like??

It is hard to believe that it has already been two weeks since David went home to be with Christ. Sometimes it feels as if it were just yesterday he passed away and other times it feels as if he has been gone a long time. We often ponder what David is doing and thinking as he walks around unhindered by Battens or the weight of sin. I wonder if David was as excited as we were last night when the New York Yankees won the World Series. I wonder what he is talking about with my father or my niece, Melody. I wonder if he still has questions regarding his disease and the suffering he experienced, or did those questions evaporate when he gazed into the eyes of Christ. I wonder what exciting and meaningful work David will be engaged in until Christ comes back and heaven and earth are joined together. I wonder what he is singing or how he is worshiping God. I wonder what he is looking at with eyes that now function perfectly. I wonder what it is going to be like to sit down with David one day and discuss the journey we walked together here on earth. I wonder what he is eating and if there are bacon cheese burgers, fries, and coke in heaven. There are lots of questions which are fun to ponder but I realize we most likely will not have answers to them until we join David.

At David's funeral we handed out a little book entitled In Light of Eternity, by Randy Alcorn. It is a book about heaven. It has been a real source of encouragement for us. If you did not get a copy or were unable to attend the service please let us know and we will mail you a copy. Please don't be shy. We want you to have a copy.

We are often asked how are we REALLY doing. To be honest the answer to that question changes day by day, moment by moment. Thankfully we rest in the sure and certain hope of heaven. Thinking of David no longer suffering and being with Christ and being totally restored brings us true peace. What is difficult is dealing with the vacuum that has been left with David no longer being here with us. There is a huge hole that I don't think will ever be totally filled in. No matter where David was or what he did, he filled space. His laughter, his suffering, his child like faith, his love, his passion for life, his compassion for others who were suffering, his gentleness, his need for 24/7 care, and his smile filled his room, our home, and our hearts. But on October 22nd David left us leaving a vacuum that cries to be filled. We have been encouraged not to try and fill this hole for a while. We don't like it. But it is there and we need to embrace it as we walk this path of grief. Please continue to pray for my family as each of us deal with this grief in our own way.

One day at a time

Things have settled down at the Pfohl ranch. Chris left for Boston this morning, looking forward to see Brittney and get back to his studies and finding a job. Brenda has been in bed for three days with a very bad case of the flu. I have been playing nurse pushing water, tea, rest, and Tylenol. She also started taking Tamiflu. Daniel returned to school on Tuesday. Students and teachers have been very supportive.

We met as a family with a counselor on Tuesday. It was the same person we have been meeting with over the past year. We have now officially passed from Anticipatory Grief Counseling to Grief Counseling. One of the points she focused on is what she called the high jacking of your emotions. Man was she spot on. I can be cruising through the day, doing some mundane task, and all of a sudden be so overwhelmed with such sadness that all I can do is cry. I know that David is with Christ, I know that he is no longer suffering, and I know that we will see him again, but it hurts so deeply that he is no longer here.

She asked us if we have talked about what we are going to do with David's belongings. She encouraged us to not do anything until everyone is ready. What do you do with his button collection, his pencil sharpener collection, the Hess Trucks he got every year for Christmas, his pinewood derby cars, his walkie talkies, his Green Bay packer hats, his Yankee paraphernalia, his cheese heads, the hundreds of Odyssey CDs and tapes, and the list goes on. Each little item reminds us of a story or a "Davidism." I have a feeling we will be boxing and storing a number of his things until a later time.

All of us are feeling numb. Some of us want to cry but can't. Some of us feel we should be feeling sadder but we don't. Sometimes we will express being thankful we are no longer having to care 24/7 for David and then we feel guilty. We try to remember happier days but we get stuck thinking about the last few weeks of David's life. We are told this is normal. I don't like this normal but there isn't much I can do about it. So we keep talking with each other, we hug each other a lot more, I hear over and over again, "I love you", and we give each other permission to cry. Even one day at a time is overwhelming. Pray we hold on to each other, to our hope of eternity, for healing, and that the ripples of David's life will continue to impact many for Christ.

My Dearest David

Every day we look forward to opening the mailbox to read notes from people who loved David and love us. One of the letters we opened the other day was addressed to David. We thought someone must not have known he had passed away. I asked the friend who wrote it (a young lady just a few years younger than David) if I could share it on my blog. Her letter starts out, "My Dearest David..."

I hear word that you have made it home. In what other news might I find such tranquil peace? Nowhere, I assure you. My soul, although weighted with grief, is swooning over thoughts of the joy you must be finding now. And Oh, what joy that must be, as if the passion and energy you showed us on earth wasn't enough! And thus I've come to the first point I wanted to thank you for. For never letting me believe that true children of God live without vibrance, but rather are called to a life of expressive jubilance, just as you always showed me.

It is funny, David, living out here in ******. I am very far from my family, but very much in the arms of God. Getting an education from Bible College, they just can't talk enough at us about the impactful missionaries and upstanding organizations thriving in the Christian world. But, David, I just want to tell them about the missionary of the highest integrity I have ever come to know, YOU! I want to tell them of your elegant dance upon this earth, and of the vast audience you had, falling more in love with the Lord with each pirouette you did for us. Your fingerprints will remain stamped on the surface of my heart forever. And that is the true impact of a true missionary and so I thank you again.

Thank you for you. Our hearts are battered as we think about life on this earth apart from you, your laughter, your clapping, your joking. But the truth is, there is nothing better than the fact that you are home now. You have better eyesight than I, as I sit here with my glasses. you can probably play basketball better than Shaq now. And you are conspicuously happier than Bill Gates, Oprah Winfrey, and Brad Pitt put together. I love you deeply, and will never cease to.

Your story will be carried on forever,I make that a promise. I also promise to take care of your family to the best of my ability. (I love them deeply as well) I do not take a single lesson you taught me for granted. Thank you for the significance you have represented in my life. See you again when the time is right. I can't wait to look in your eyes and know you're looking back!

With all of the love that is in my heart,