It is Well With My Soul

Reflections by Dan (My Life for 16 Years)

2010-03-30T11:16:00.000-04:00

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

2010-02-27T09:33:00.000-05:00

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

2010-02-12T17:52:00.002-05:00

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

2010-02-05T10:31:00.000-05:00

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

2010-01-27T21:46:00.001-05:00

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...

2010-01-22T11:35:00.002-05:00

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 diedso 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

2010-01-18T22:52:00.000-05:00

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

2010-01-12T19:50:00.000-05:00

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

2010-01-05T20:38:00.000-05:00

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!

2009-12-31T10:16:00.000-05:00

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!

2009-12-20T18:33:00.000-05:00

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.
¹³Suddenly 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

2009-12-13T20:56:00.000-05:00

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?

2009-12-09T10:34:00.000-05:00

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

2009-12-05T16:22:00.001-05:00

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

2009-11-27T09:39:00.000-05:00

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

2009-11-23T21:17:00.000-05:00

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

2009-11-17T15:38:00.000-05:00

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??

2009-11-05T19:25:00.000-05:00

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

2009-10-30T19:37:00.000-04:00

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

2009-10-28T15:52:00.000-04:00

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,

Check out the video montage of David's life on Youtube!

2009-10-27T17:10:00.000-04:00

My good friend, Kyle Dolbear, put together the following video montage of David's life. Many of you saw it at the service but for those of you who missed it here it is. Just click on the link below:

David's Video Montage

Today has been a quiet day. Dan went back to school, Chris is still hanging around, we had breakfast at Dave's Diner in honor of David, and we cleaned the house. I went for a motorcycle ride just to clear my head. We are finally getting a chance to read all the cards and notes people have been sending us.

At David's memorial service Doug encouraged everyone to take a few minutes and jot us a note and share how David impacted your life or a story you remember. I hope many of you take an opportunity to do so. Please use this blog or Facebook.

We are starting to hear stories of how God is using David's memorial service in people's lives. I am looking forward to sharing them with you!

David's memorial service is online

2009-10-26T17:56:00.000-04:00

If you were unable to attend David's funeral or would like to see it again you can click on the following link:

David's Memorial Service

Some Pictures

2009-10-26T11:10:00.001-04:00

The Pfohl Family

Dad and His Boys

Everyone's Favorite Picture of David

Chris and Brittney

Chris' former roommates, Adam and Nate

Wonderful celebration of a life well lived

2009-10-25T23:38:00.000-04:00

Today's memorial service was awesome. There were over a 1,000 people who gathered to celebrate David's life. It was a time of worship, hope, inspiration, tears, laughter, and challenge. The verse we put on the bulletin was 2 Timothy 4:7-8:

I have fought the good fight, I have finished the race, I have kept the faith. 8Now there is in store for me the crown of righteousness, which the Lord, the righteous Judge, will award to me on that day—and not only to me, but also to all who have longed for his appearing.

David fought well. He lived well. He taught all of us what is important. While we grieve we also rejoice. What a dichotomy of feelings! Today we were loved on, served, and reminded over and over again that God is good and in control.

Over the past two days we have hosted all of Brenda's family: Mom and Dad Bell, her two sisters, their husbands and kids, Dad's sister, and Christopher's girlfriend. It has been a blast. They served us and loved on us. We are so blessed to have such a wonderful family. My family as well hung out here. Most times we had over 30 people eating, drinking, playing, laughing, and telling stories.

I hope to post a link to a video that was played at David's memorial service so keep your eyes open. it is late and it has been a long day. We love you all.

David's Testimony

2009-10-23T20:31:00.000-04:00

As we were cleaning out David's room we found a folder labeled David's Testimony. The only problem was it was in braille. Today Donna Richards, David's teacher of the visually impaired, came to our house to translate it. The best we can figure it he wrote this when he was in 7th grade. The following is what she wrote out for us:

David’s Testimony

When I was very little I enjoyed reading the bible a lot. My parents would read to me Bible stories and I loved them. I believe that when I was six years old I became a follower of Christ. I think it was when I was in Awana I realized I need Christ in my life to help me live a better life. So I accepted Jesus as my Savior. When I was seven years old I remember I started to lie a lot. I tried to be good kid but I was also a brat. Sometimes I am still a brat just ask my younger brother.

When I turned eight years I started to lose my site. Dad would yell at me because he thought I wasn’t looking at him. I was upset, sad, and didn’t want to talk to people. I would hide under the table for my vision teacher and cry, kick and scream. I didn’t really care for God. I thought God didn’t like me anymore. I thought he hated me. We had just moved from Poland, I lost all my friends, and my new friends were moving away. That was the year my mom was really sick when we were afraid she was going to die.

I started losing my site when I was in second grade. My first teacher was Mrs. Finkelstein. Even her name tells you what she was like. She was really not conscientious with my needs. I switched classes to Mrs. Gamble. She was my favorite. When I turned nine I started hating God even more. The reason was because I could not see any more. I started to be angry and sad all the time.

When I turned ten I realized my situation was not going to change. While I knew God loved me I still often would cry. Sometimes I would slam doors because I was mad. It was then I realized that God still loved me even with my blindness and that I could trust him and worship him and love him, even if I were to go totally blind. I turned back to God and gave my life to God all the way.

One of the gifts God has given me is my joy and love of God. I love people and I love to help people. Even in the hardest times God’s word says he will always love me and care for me. I hope you have learned through knowing me how to help others who have special needs. Lastly I want to tell you something important. Thank you for helping me with my walk of God. I need help to continue to walk closely with Christ. Thank you so much.

This was a second writing found connected to his testimony:

How are you doing, I really doing pretty good. I have had an extraordinary thing I learned in the service today. I learned that God should be the most important person in my life not girls, or baseball, not football or basketball. God really touched me today that love me so much. I really love him. I notice that I can’t count on that everything is going to go my way. Because it’s not a perfect world. I am glad that I am unique and I don’t look like any one else. We can’t take things for granted. We have our own problems, but we can lean all our cares under him. I know that God can handle all are troubles and cares. I really know now, and From now on I dedicate person even if they are not Christians. I can’t wait to find out what God is doing with this tragedy of my life, my sight problem. You know all the parts of my body. You know every hair on my head. When I am scared you are there, when I am laughing you are there, when I am sad You are there, When I am happy You are There, So God I give it all to you, So I can listen to your word, Your lamp is a lamp unto my feet and a light unto my path. Isaiah 41,10 Do not fear for I am with you, Do not be afraid I am your God, I will strengthen you and help you, And I will up hold you with my righteous right hand. Have I not commanded you, be strong and courageous, do not tremble or be dismayed, for The lord your God is with you wherever you go. God is true to his word, he would not lie, he is the perfect person, and he will come back like he promised. God wants people to except him in the whole wide world, not only America, every country in the world, not only the rich people or the fine dressed, but every one has a chance, As it says in John three sixteen for God so loved the world, That he gave his own son to die on the cross for us, I thank for that. My favorite bible verse is Psalm One. I want to give my self back to God and Jesus. He loves me so much. I know he loves every person on this earth, every person gets a chance. I would like to thank Mr. Bullock for his sermon that inspired this testimony. Love David Pfohl

David's Services

2009-10-23T09:19:00.000-04:00

Click here to see David's Obituary. We will be celebrating David's life this Sunday, October 25th at 3:00 PM with a reception following. Come and join us as we remember a young man who lived his life well. The service will be held at Eastern Hills. The address is: 8277 Cazenovia Rd., Manlius, NY. If you want directions click on the address above. We are being loved on. Thanks for everyone prayers and support.

David is with Jesus

2009-10-22T04:02:00.000-04:00

David went to be with his Savior around 3:30 AM on 10/22/09. It is well with his soul and ours.

2 Corinthians 5:1-5 Now we know that if the earthly tent we live in is destroyed, we have a building from God, an eternal house in heaven, not built by human hands. ²Meanwhile we groan, longing to be clothed with our heavenly dwelling, ³because when we are clothed, we will not be found naked. ⁴For while we are in this tent, we groan and are burdened, because we do not wish to be unclothed but to be clothed with our heavenly dwelling, so that what is mortal may be swallowed up by life. ⁵Now it is God who has made us for this very purpose and has given us the Spirit as a deposit, guaranteeing what is to come.

Still in the Hospital (Part 2)

2009-10-21T18:33:00.000-04:00

Great Song with some great words. I will Rise by Chris Tomlin. Check it out. Just click on the link or go to: http://www.youtube.com/watch?v=wt6KvS5fJqY

Still in the Hospital

2009-10-21T17:50:00.000-04:00

We did not go home today. David is still experiencing some discomfort and we are working on adjusting his medication. He at times is struggling breathing. Sometimes it seems as if he trying to cough or clear his throat. We don't know if it is due to the medication he is taking, a part of his disease, or some type of pain breaking through and it is the only way he can communicate he is uncomfortable. After being here at the new wing of the Galisano Children's Hospital we decided that we would rather stay here as long as we can. David is well cared for and we are able to simply be Mom, Dad. The staff here is incredible and the facilities are incredible. Chris is driving home to be with us. Brittney is flying in tomorrow evening. We still do not know when David will go to be with the Lord. We are ready for him to be with Christ. The hardest part is waiting.

In the Hospital

2009-10-20T18:58:00.000-04:00

I am sitting in a hospital room at University Hospital with Brenda, Daniel, and David. We had a very rough evening and morning with David. He was in horrible psychic pain, rolling, crying, rocking, and yelling without end. It was one of the roughest mornings we have ever experienced. After talking with Hospice and our doctor from CompassionNet we decided to take him into the hospital to control his pain. We have sedated him with a med that he will remain on until he dies. They inserted a pic line (a permanent IV) which will allow us to return home tomorrow and manage his medication. He continues to not eat or drink. Thankfully with this new medication he will no longer be in pain. His other medications simply were not doing the trick.

Brenda is spending the night at the hospital with David. Daniel and I are going home and will return tomorrow morning. We are hoping to be discharged by 1 PM. We are surrounded by good friends and family. We are tired. God blessed us with a wonderful christian nurse. It is amazing how when we open our eyes and can look beyond the pain of our sitution how we see the hand of God in his many little blessings. Thanks for praying!

Psalm 33:20-22

2009-10-19T14:07:00.000-04:00

We wait in hope for the Lord;
he is our help and our shield.

In him our hearts rejoice,
for we trust in his holy name.

May your unfailing love rest upon us, O Lord,
even as we put our hope in you.

Nothing wth rob our hope!

2009-10-18T19:02:00.000-04:00

Nothing will rob our hope!

The following are the notes I used today at church to share with everyone what is happening with David. We are blessed to have a supportive church family.

As most of you know we have been on a thirteen year journey with our son, David, as he has battled an intruder and foe by the name of Battens Disease. It started by robbing him of his vision when he was eight years old and has continued to rob him physically, cognitively, and emotionally. A week ago Friday Brenda and I sat in my home office with our doctor as she spoke the words, “David most likely has six months or less to live.” As you can imagine it felt as if the air had been sucked from the room.

Thankfully the hope Doug just talked about is real and has given us something to hold on to as our little world has come crashing down around us. I’m not going to lie and say it has been easy or that we haven’t been angry, or thought that God didn’t care or that he was out of control. We have struggled with all these things and still are to some degree, yet we hold on to the sure and certain hope that one day soon David is going to again see, walk, run, talk, think, and no longer be in physical or emotional pain. While we don’t want him to go, we also don’t want him to be locked here in his broken body in this broken world. We know because of our faith in Christ and his that we will be reunited. That is our hope and nothing, not even death, will take it away

The last three weeks have been very difficult. David has cried and moaned and groaned incessantly. No matter what we tried we couldn’t get him to settle down. One day last week Brenda was beside herself in emotional pain as she listened to David groan for hours. She picked up her bible and she came to 2 Corinthians 4:16. Let me read to you a couple verses.

¹⁶Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. ¹⁷[David's body is wasting away. He has not eaten for five days and sipped only a few ounces during that same time. He is losing weight and quickly going down hill] For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. ¹⁸So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.

Now we know that if the earthly tent we live in is destroyed, we have a building from God, an eternal house in heaven, not built by human hands. ²Meanwhile we groan, longing to be clothed with our heavenly dwelling, ³[every time we hear David groan we picture him moaning for eternity and being with Christ.] because when we are clothed, we will not be found naked. ⁴For while we are in this tent, we groan and are burdened, because we do not wish to be unclothed but to be clothed with our heavenly dwelling, so that what is mortal may be swallowed up by life. ⁵Now it is God who has made us for this very purpose and has given us the Spirit as a deposit, guaranteeing what is to come.

And what is that purpose? To be clothed with our heavenly dwelling. And so we have hope! That soon David will shed his earthly tent and be clothed with that which is eternal, perfect, and good. In fact a couple weeks ago David was in his bedroom crying out, “I want to go home, I want to go home.” We too want that for David as well.

One of the hardest things I have struggled with over the past several weeks is what I called the silence of God. It felt as if no matter how hard I prayed, asked God to bring comfort, or bring peace to my family nothing happened. It was if God was simply standing by, listening, but choosing not to respond. It didn’t make sense. Yet the day the doctor said David was dying, I was ready to accept it. The silence and David’s suffering had prepared me to begin the process of letting go. While I wished God would have sent a simple email or write a message in the steam on my mirror, I am starting to see the wisdom of God in choosing to be silent.

We are scheduled to meet with Hospice on Tuesday and sign up for their services. We have no idea how long David will be with us. He has not been eating or drinking much at all so we are pretty sure it will not be long. If you want to follow our journey more closely you can go to a blog I started in August titled It is Well with My Soul. It is at www.davidpfohl.blogspot.com.

We appreciate you prayers and all the love you have showered on us. When David dies our goal is to celebrate David’s life and the hope we have that he is with Christ.

Hospice

2009-10-15T19:16:00.000-04:00

Today we dipped our toes into the world of Hospice. It's purpose as stated in the information they left with us is as follows:

"Hospice of Central New York provides skilled, compassionate care to patients and their families coping with advanced illness and limited life expectancy. Care is focused on comfort rather than cure. We want to help people make the most of the time they have together, whether it is six months or six days."

We are hoping to officially register with them tomorrow. They are checking to make sure our involvement with them will not effect or cancel our current program and support staff. If you want more information on who and what Hospice is please click on the following links:

hospicecny.org

nationalhospicefoundation.org

dyingwell.org

As you can imagine there is a cacophony of emotions, feelings, and thoughts that parade through our minds and heart on a moment by moment basis. As David continues to not eat or drink much, as he sleeps more, and as he is unable to communicate his thoughts or feelings, we long for the day he is with Christ. On the other hand it is hard to imagine our home and family void of his presence. As I write this blog I hear David moaning and crying in his room with Brenda and our friend, Sue Craig. It makes me long for the day he will cry no more, as he is welcomed into heaven by his Savior. I can't imagine going through this journey without the sure and certain hope of eternity.

For the past two days David has been very sleepy and much more calm. We don't know if the medicines we are giving him are finally building up in his system or he is simply slowing down. He still has periods where he cries out and moans. He has also started to have what appear to be mini seizures where he seems startled, his legs begin to shake, and he is very wide eyed, almost as if he were frightened. Please pray this stops.

Many people ask how we are coping. Friends and family are providing food, some are cleaning, cards are coming in the mail, and we are learning to not expect to get as much done as we once did. We have a great staff who love David, Compassion Net is pouring out their support, and Brenda and I are holding strong. It has been tough on Christopher and Daniel. Christopher has the support and love of a wonderful young lady by the name of Brittney, Daniel is surrounded by good friends like Katie and Josh. We feel tired all the time. My work is both a relief and a challenge. Keep praying. Thanks for loving us!

"Six Months or Less"

2009-10-12T21:30:00.000-04:00

These are the words a doctor we met with on Friday spoke to us. Shocked, numb, relieved, sad, overwhelmed, at peace, and hoping she was wrong were feelings that coursed through our veins in a matter of seconds. She went on to say that David's disease is progressing at a rapid rate and his body is simply slowing down. He has not been eating much of anything and drinking little as well. Our goal is to simply help David be as comfortable as possible. We have no idea how long David actually has to live but we are going to make the most of the time we have with him. At times we get little glimpses of the David we all know and love. He laughs at some of the weirdest things. Asking him if he wants a cigar and whiskey normally always gets a small smile.

We have decided not to use a g-tube. When David asks for food or water we give him as much as he wants, but forcing it into him will only make him feel more uncomfortable. His not eating and drinking are a result of Batten's disease. Forcing him to take food or liquids might prolong his life, but it would only prolong the place of suffering he is often in.

Chris and his girl friend, Brittney, were here this weekend. We took them and Daniel out to pick apples, had dinner together, and then we shared with them what the doctor said. It was hard, but we were all in agreement we don't want David in the place of suffering he is currently in. We rest knowing that this is not the end for David. Our faith in Christ, our faith is the resurrection give us hope. David will see again, walk again, communicate again, and all the why questions he has ever pondered related to his disease will be answered. I look forward to that day.

We are still working at trying to find just the right combination of drugs to keep him from being anxious, sad, and emotionally overwhelmed. He is on three medications which for the most part are helping him. There are still periods of time where he cries, rocks back and forth, and whimpers. Pray these periods of time would come less and less.

We rest knowing we are covered in prayer, supported by a loving family, friends, and church, and upheld by a God who is always there for us.

Home Sick From School

2009-10-09T13:56:00.001-04:00

Very hard day, nothing calming him down. Went to school but came home very sad, crying, and with a temp. Nurse came to check on him. Temp of 101. The new meds prescribed are not working to bring him comfort. Our neurologist, family doctor, and the doctor who works with CompassionNet have all talked today and it looks like we are going to try a new course of meds. Pray this works. David is also struggling eating and drinking. It looks like we are going to have to make a decision regarding a g-tube. Very hard decision.

On one hand I am sorry this is always bad news, but it is the only news we have to share with you right now. Thanks as always for your prayers.

Some of you are still wondering what you can do to help. How about sending David a funny card and just thinking of you. Here is his address:

David Pfohl
4440 Brickyard Falls Rd.
Manlius, NY 13104

The Silence of God

2009-10-07T20:06:00.000-04:00

Why Lord, do you stand far off? Why do you hide yourself in times of trouble?
Psalm 10:1

How long, Lord? Will you forget me forever? How long will you hide your face from me? How long must I wrestle with my thoughts and day after day have sorrow in my heart? Psalm 13:1,2

The silence of God is painful! We cry out in prayer, knowing He hears us, knowing he loves us, knowing his will for our lives and David's is good, acceptable, and perfect, yet it feels as if He is standing far off, hiding his face, as we wrestle with a depth of sorrow we have never experienced before. It doesn't make sense. It is raw.

Thankfully I am not the only one who has experienced God's silence. I'm not alone. I'm not being punished. Sometimes for reasons beyond my imagination God remains silent. I hold David in my arms for hours on end as he cries, begging God for just a moment of rest and peace, but no reply. I plead that God would help the doctors discover the right combination of medicine to bring a peace and contentment to David's life, but David still goes to bed yelling and crying every night. All I want is for David to not be in pain, yet my prayers seem to bounce back like an undeliverable piece of mail.

YET

"You are enthroned as the Holy One,
You are the praise of Israel.
In you our ancestors put their trust,
they trusted you and you delivered them.
They cried to you and were saved,
in you they trusted and were not disappointed."
Psalm 22

We know He can be trusted, we know we ultimately will not be disappointed, and we know David will be delivered from this horrible place. Pray for us in these moments of silence.

Today we drove to Rochester to see our neurologist who specializes in Battens Disease. We had high hopes but returned frustrated with few answers. We are still working on trying to figure out the right medications and dosages. It is so complicated. We are trying a new medication that we hope will bring him some peace. Last night it really mellowed him out. Today it worked for an hour. The remainder of the day he was inconsolable. We are going to call the doctor tomorrow and see what we should do next.

As always, thank you for your kind words and your prayers.

Tough Sunday

2009-10-04T19:55:00.000-04:00

David has cried non-stop since 10 PM last night. Thankfully he slept from 12AM to 6:30AM. We almost took him to the emergency room this afternoon. We had a doctor and a nurse who are a part of CompassionNet come to our house and check him out. She actually prescribed him morphine but it didn't touch his pain. This led her to believe it is either a reaction to the antibiotic he is on or he has some type of a stomach bug. We are using Tylenol and peptobismal. It is 8:00PM and he is still crying and calling out for mom. When you read this please pray for David's relief from pain,for our sanity and for Daniel's.

(UTI) Urinary Track Infection

2009-10-02T21:29:00.000-04:00

We have been home now for four days and it feels as if we are just getting our feet back under us. We had a wonderful vacation and are happy to be home with our boys. David unfortunately came down with a urinary track infection and it has really knocked him for a loop. We have him on an antibiotic but he is miserable. He has been very weepy and again inconsolable. We are praying that as he feels better physically that he will feel better emotionally. Please join us in praying for this.

Tonight Laura, one of our aids, took David for a long car ride and he came back happy. For the first time since returning from our cruise he went to bed without crying and moaning himself to sleep. What a praise! We also just added a new person to our staff, Susan Craig. She is doing two overnights and is an answer to prayer. She is a nurse, gentle, caring, and a woman who loves God and David.

Well, this is short but I wanted to update you. We are working at sorting though all our pictures and will post them somewhere so you can see them.

The Ship is Headed Back

2009-09-26T07:26:00.001-04:00

The Ship is Headed Back

We are somewhere between Santorni, Greece and Naples, Italy headed home. It is a beautiful sunny day and everyone is out getting one more day of sun on the ship. We have had a wonderful time celebrating 25 years of marriage, resting, and playing. We called David and Daniel both a few days ago. David wasn't able to respond to us but Kim said he smiled. While this makes us sad, we are grateful all the news we have received so far regarding David has been good. He has been complaining of an upset stomach for a few days so please pray he feels better.

Daniel has been struggling with David's losses. It has been very difficult not being there to support Dan. Thankfully we rallied some of his good friends and ours around him. Thank you for keeping him also in your prayers. We return home Monday night and are looking forward to seeing our boys.

Just a short one to update you and to again thank you for your prayers for our family. The picture of us riding the donkey is in Lindos, Rhodes (Greece). Acts 21 says that Paul stopped in Rhodes on his way to Jerusalem. Tradition holds that he stopped at the town of Lindos. The picture of the blue dome is a church in Santorini, Greece.

On our way to Athens

2009-09-20T14:58:00.000-04:00

Its 10:00 PM and we wanted to give a quick update. We have heard from several folks that David is doing great. Kim, a friend and aid who works with him at school and in our home said David was walking at school with his walker, laughing, and having fun. He is still not eating as much and sleepy. Keep praying. Tomorrow we land in Athens and have a full day planned. We are feeling rested and having a blast. Truly, It is Well with Our Souls!

Greetings from Sicily!

2009-09-19T11:39:00.001-04:00

We are in Mesena, Italy (Sicily.) The ship is amazing and we feel like a King and Queen. Brenda celebrated her 4* birthday yesterday. Men from around 7 different countries sang Happy Birthday to her. Communication back home is limited so we feel disconnected from David and how he is doing. Continue to pray for him and his comfort. We have an incredible staff and we totally trust them. We have been texting Daniel which has been good. Our bandwidth on the ship is limited so we may not be able to upload pictures until we get home. If you want a personal viewing of all 1,569 pictures with commentary please ask Brenda.

Great day touring Rome

2009-09-17T12:32:00.001-04:00

Today has been a busy day touring Rome. Yesterday we met a couple who will be sailing on the same cruise we are taking (also celebrating their 25th wedding anniversary) and invited them to join us on our tour. We explored the Catacombs, The Vatican (Museum and St. Peters,) The Colosseum, The Appian Way, The Circus Maximus (where the chariot races took place,) and more. Our feet are tired but we had a wonderful day. We are getting a little rest and then out for some more yummy Italian food. Please continue to pray for Daniel and David while we are away. We haven't heard anything from home so we are hoping no news is good news.

Warren & Brenda in front of St. Peter's

The Colesseum

We are in Rome!

2009-09-16T15:09:00.001-04:00

We made it! We had a rough start due to President Obama making a stop in Philadelphia. Our flight was held for almost an hour. Thankfully our luggage made it and we had a wonderful day today in Rome. We are exausted but very happy to be here. We just chatted with David on Skype. He wasn't very responsive but Laura said he smiled the whole time talked to him. Here are a couple pictures. Pray we sleep well.

Arrivederci!

2009-09-14T18:21:00.000-04:00

Tomorrow at 3:30 we leave for Rome. We are so ready for some time away. If you want to track our journey you can click on: Warren and Brenda's Cruise. It will show you our cruise and our itinerary. I will give quick updates from this blog regarding our trip and David as I get information from home. Here is a picture of our ship:

David has had a good day. We were told he enjoyed school and tonight he ate a great meal. Right now he is watching Lion King with Dan Edsall. He has not been that anxious today which is such a blessing. The Nurse Practitioner who works with Dr. Mink at the Batten's Center in Rochester has been wonderful to work with. She is helping us tweak David's medications and his care.

Well still have a few things to get packed. My clothes are all sitting folded and ready to be packed in the suitcases. Brenda is still working on getting just the right outfits selected, folded, and packed away. Thanks to all who have prayed this trip would actually take place. We love you all.

The Weekend, Sept. 12 2009

2009-09-12T13:18:00.000-04:00

Just a quick update. We are still tweaking David's meds. He is still struggling from 5PM to 9PM. Please pray for us to find the right amount of medication and the right time span between each dose to keep David content and able to enjoy life. This morning I took him out for breakfast and we had a good time. He has been loosing weight (12-15 pounds) so we are supplementing with drinks like Ensure to keep his calories up. We had an Occupational Therapist and Physical Therapist visit our home to help us with finding some adaptive equipment to help in his care. We need a wheelchair, power lift once he can't stand, a hospital bed, and some other things. They were very helpful.

We had a surprise visit from our son, Christopher, and his girlfriend, Brittney, last night. They drove from Boston to surprise us and just encourage us. I wrote in my journal this morning that it was like a very bright light in the midst of the dark pathway we have been walking. They came to hang out with Daniel and to just help. We are blessed to have very special sons. Often I ask you to pray for David, but please pray for Daniel and Christopher as well. It is very difficult to see their brother struggling. We also have been guilty of pouring all our energy into David, leaving the other two to fend for themselves. This is not good!

Tuesday we leave for our cruise. Everyone is stepping up to the plate to help care for David and help with Daniel. God is so good.

Looking for the right balance

2009-09-09T17:27:00.000-04:00

The last few days have been a roller coaster ride. You know the feeling when you just crest the top of the first hill, your stomach drops, the scream escapes from your lungs without even knowing you are screaming, and you plunge towards the ground at 15o miles per hour. Our ride started with three days of David being inconsolable. We finally contacted our neurologist in Rochester after the Labor Day weekend and switched back to the Clonazapam, increasing his dose to help him not be so anxious, angry, and agitated. He slept well. Unfortunately the dose was too high and David was very very lethargic. He struggled to stay awake and it was difficult for him to eat or talk. Thankfully this wore off as the day went on. David actually went to school and we were told he did well. He does continue to complain about not feeling well which may be a result of one his meds, so after talking with his PA we are going to discontinue this one med. We are looking for the right balance of medication so David can enjoy life but not feel anxiety. Please pray we can find this proper leval.

Brenda met with the staff at Fayetteville Manlius High School yesterday and we were blown away at their love and concern for David. We can send David to school knowing he is going to be well cared for, his dignity respected, and loved. We can't say enough about how well the school has responded. They provided us with a wheel chair we can use until we find the right one for him.

As you know earlier I posted a question about whether we should go on our cruise next week. Since writing that post we have had so many people encourage us to go. Our current staff and others have steped up the plate to cover for us. There will always be two people in the house when David is here. My sister-in-law is making her self available and so many people have said they will help by bringing meals. We are blessed!

Finally, pray we can find a couple more staff to help with overnights and weekend coverage. Well dinner is waiting for me. Thanks again for lifting us up in prayer.

Exausted; in need of comfort!

2009-09-07T08:32:00.000-04:00

Yesterday was a very hard today and it looks like we are headed into another one already. David continues to be inconsolable. He rolls back and forth, says over and over I am tired and I don't feel well, whimpers, cries, and doesn't like to be touched. We finally called the Dr. on call in Rochester and they wrote a script for Ativan, a drug used to help with anxiety disorders. We were told we could give him 1-2 tablets every 6 hours. We started with one because we didn't want to interrupt his sleep. It seemed to work for about three hours but then it started all over again. He finally fell asleep around 9:30 and thankfully slept through the night. This morning he is just as bad off as he was yesterday. We started him off with two ativan, hoping it will help him but not put him to sleep. He started being anxious and frustrated around 7:30 and it already almost 9:00 with no change. Please pray the meds or something helps. We are wondering if he is fighting a cold our bug again.

We are all feeling very beat up. As I write this I fear the day watching David struggle with no relief, I fear David's first day of school and whether he will be actually able to go, if he doesn't go what do we do, I fear not having enough reserve to care for the rest of my family, and I struggle with sensing God's presence. I prayed all day yesterday for God's peace and comfort and to be honest with you, failed to find it. I know it did not fall on deaf ears and I know God loves David and us, but I struggle knowing God could have brought David peace but didn't. I'm glad my God is big enough and loving enough for me to express my doubts and fears. I'm also having a little pity party. Since Friday at 9:00 PM we have only had 4 hours of staff coverage. Its Labor Day weekend, the weather is beautiful, and we feel stuck here. As I write this I sound like a cry baby but it is how we are feeling. Dan E. will be on today at 2:00 PM. For those of you who are praying for us please ask God for comfort; comfort for David's spirit, comfort for us as his parents who often feel helpless, and comfort for our boys.

Rough start to Saturday

2009-09-05T08:09:00.000-04:00

Starting around 4:00 PM yesterday David has been anxious, frustrated, angry, and appears to be uncomfortable. As I write this he is asking over and over again "What is today's Odyssey?" No matter how we respond he just asks the question over again. He is unable to respond to any question you ask him. If you asked him, "David do you like liver and mushrooms?", which he hates, He said, "Yes." We are in need of an infusion of patience. Please pray for us and the aids today as we work with David that we would be gentle, patient, and would know how to bring comfort to him. Pray that David would be content. Ask the Father of compassion and comfort to touch David today.

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, 4who comforts us in all our troubles... 2 Corinthians 1:3,4

David on vacation in Door County, Wisconsin

"The twinkle in David's eye was back."

2009-09-03T07:40:00.000-04:00

David's music therapist called us last night just to tell us how well he had done. She said, "The twinkle in David's eye was back." The two aids who had worked with David yesterday also said David really enjoyed himself and was happy. God is so good. There is no doubt in my mind that your prayers are making a difference. Please don't stop! As David enjoyed lunch and dinner out, train watching, music therapy, the movie, Annie, and lots of laughter, Brenda, Daniel, Katie and I went to the New York State Fair. As I am writing I can hear David out in the kitchen with Brenda and Laura asking for a cup of coffee, sounding very content and happy. He is already showered, already used the bathroom, and ready for breakfast. He still is not as chatty as he was, and we still miss his spontaneous laughter and comments, but he is so much more content. What a change from just a week ago.

Some of you have emailed me to say you don't know how to leave a reply or leave a note after one of my posts. At the bottom of each post you will find the word 'comment'. There may be a number before the word comment, indicating how many other people have already left a note. Click on the word comment. Scroll down until you see a box with the words above it, Post a Comment. Type your comment in the white box. When you are done click the words, Post Comment. That is all there is to it.

So lets try it. Brenda and I often hear people say, "David has made such a difference in my life.", or "My faith has really been challenged as I watch David and the joy he has.", or "Your family has really been a blessing to us." What do you mean? How has David's child like faith challenged you? How has the brokenness of David's situation and the way our family has responded helped you in your personal journey? We would love to hear from you.

November 2, 1999

2009-09-01T07:44:00.000-04:00

This is the first date found in my journal. It was David's 11th birthday. A friend of mine gave me the journal after hearing me speak one Sunday on pain. She said I really needed to start recording my journey, thoughts and feelings. My biggest concern in starting to journal was starting and not continuing. In fact I jotted down that fear in my first entry. My next entry was 11/8/1999 followed by 06/11/2009! Ten years! I guess I'm a prophet.

Now I write on a daily basis. The counselor I have been seeing encouraged me to start writing letters to David as a way to express some of the things that get bottled up inside of me. I then share my letters with Brenda and we sit there and cry, pray, seek strength to deal with the pain of trusting God with our broken dream, the pain of David's loss and struggle, and the battle of saying, like Jesus did, "Your will be done, not mine!" I also journal how I am hearing from God as I read his word and other thoughts, verses, or questions that often fill my mind.

The following is an excerpt from my first entry on 11/02/99. It is a tiny glimpse or peak into the first few awkward steps in our journey.

A year ago this Thanksgiving, our second son, David Gregory Pfohl, was diagnosed with a hellish disease, Batten's Disease. He still doesn't know the the seriousness of his disease. David is legally blind. Two and a half years ago David was a normal sighted kid. He enjoyed reading, coloring, and all the normal things eight year olds like to do. It seems as if in the twinkling of an eye David plunged into the darkness of vision loss.

The pit I feel in my stomach as I write these words was magnified when the doctor told us the severity and untreatable nature of Battens. The feeling of helplessness was overwhelming. We walked to our car knowing that our lives had been for ever changed. We were numb. We felt betrayed by God. We didn't want to believe the doctors.

While we knew God was in control there was very little that we saw in those first few days that indicated any sense of control, care, or love from God. We cried daily if not hourly...We knew our thoughts were not clear. The pain was so real, so tangible you could feel it. It felt as if it would never go away. I would read a stupid Readers Digest article in the bathroom and begin to sob. I would lay in bed listening to Brenda cry so hard I thought she would die, yet I didn't have the energy or knowledge as to how to help her, so I would cover my ears and pray she would stop.

Every time David stumbles or can't find a toy sitting in front of him you are reminded of his loss. He no longer can see my face, to see my pleasure or anger. He often feels my face telling me I am going bald or I need a shave. I love those times.

From time to time I will share more of my journal with you. While the pain has remained a constant, our ability to see the hand of God has grown. We believe God is good and we believe God's will is best. Thanks for taking the time to read this.

Daniel's Facebook Status

2009-08-31T10:51:00.000-04:00

Dan Pfohl: please pray for me that I will be able to fall on god and understand why he has put such a terrible thing in my life. Pray that I can use it for good things, insted of just feeling sad about it all the time. And pray for my parents, our whole family is stressed and breaking down. Thank you.

Thanks for your prayers for Daniel and all of us. Brenda had a good chat with him last night.

"Do you know what?"

2009-08-30T19:16:00.000-04:00

This is a question David asks almost 30-50 times an hour. Unfortunately there is no answer! We try to guess what he wants to say but we have had no luck. Sometimes it is a conversation filler, other times he is just frustrated with his inability to communicate or understand the conversation around him. He will often repeat the last part of a sentence in an attempt to enter into the conversation but often he gets it a little mixed up. Today someone ended their sentence with something to do with chicken broth and David says, "I wear a bra!" (Broth/bra, I know it is a huge stretch but it makes total sense to David.) Other fillers are, "I'm pregnant!" or "I'm going to get married." or "I'm drunk." If all else fails he flashes his big white belly and smiles.

Today was a quiet day. We went to church, enjoyed an international potluck after the service, hung out with Katie's family (Daniel's girlfriend) at Marcellus Park and then hung out at home listening to Odyssey tapes, watching Saving Nemo, and eating popcorn.

How can you pray: David is struggling with constipation, continues to tire easily, and is still easily frustrated and anxious. Praise: He has slept for the past two nights, and it looks like we have three levals of care set up for David when we go on our cruise.

Brenda and I are leaving for Rome on Sept. 15th. We will spend a couple days in Rome and then on the 18th, Brenda's birthday, we sail for Sicily, Athens, Mykonos, Ephesus, Rhodes, Santorini, and Naples. Please pray we can finalize all the details we still have to accomplish before the cruise. We return to Syracuse on the 28th.

Worry, what a waste of time

2009-08-29T10:03:00.000-04:00

I read a great quote from Randy Alcorn's book, If God is Good. He wrote:

Worry is momentary atheism crying out for correction by trust in a good and sovereign God.

We have learned so much about God's goodness and his desire to be intimately involved in every apspect of our lives as we have walked, sometimes crawled, on this journey with David. We have learned to give thanks and to see grace in the strangest of things. It is grace that David is totally unaware that he is incontinent. It is God's grace that he is not bothered when we wipe his bottom, when we feed him, and when we use a Texas catheter to help keep him dry. We give thanks for a well timed bowel movement. Yes, the scriptures tell us to give thanks in all things! :)

Last night David slept like a baby from 9:30 to 7:30! God is good! We took him to the doctor yesterday and she thinks he is fighting a summer bug that is going around. He had a couple red spots on the back of his throat. This would explain why he is so tired and unstable. When ever David gets any little cold it really knocks him down. We are hoping as he fights this off in the next 4-5 days that he will return to the peppy, happy David we all know and love.

Today David will hang out with two of his aids, Dan and Laura. Pray that David has energy, that he has fun, and that Dan and Laura would both know God is using them to bless David and us. We are leaning towards not canceling our cruise. Yesterday was just a tough morning. Love you all.

Should we cancel our cruise??????????

2009-08-28T09:57:00.000-04:00

So many things are happening so fast we are seriously wondering if we should go on our cruise in September to celebrate our 25th wedding anniversary. Last night David didn't get to sleep until after 2 AM and this morning he is so tired. Every time we ask him to stand up he says, "I can't, stop it." When we do help him up he is very unstable. Our hope is this too shall pass but we don't know. If he can't walk our stand on his legs we enter into a whole new world of transfers and transport issues. We have an excellent staff and friends who are willing to be with David but we are entering into uncharted waters. We need wisdom. I would be lying if I said it is no big deal if we did'nt go. We have been looking forward to this trip for a long time. We are pretty crispy. We realize it is not a good idea to make any decisions when we are also tired. Maybe things will look a little better by the end of the day.

Tough Day

2009-08-27T21:28:00.000-04:00

Today was a tough day for David. Thankfully he was content but he had a very tough time expressing himself, kept on telling us he couldn't stand up, when we did get him out of his wheelchair he was very unstable on his feet, didn't have much of an appetite (that is until I barbecued him a burger on the grill), was very repetitive, and very low energy. Yesterday it seemed as if David took two steps forward but today he went back three. Several things struck us today: 1) We need to be prepared for the day David will be full time in a wheelchair. Our current wheelchair is just a lightweight one. 2) We need to figure out how to transport David once we get this bigger chair. 3) We need to get some type of lift that will transfer David from his wheel chair to his bed or the toilet. Thankfully the State of New York will help us. We are also in the process of getting a hospital bed. It is getting harder to stoop over to change him or care for him.

The day ended with an amazing blessing. Jackie Wojcik, a friend from our church, who plays with the Syacuse Symphony, brought three other friends to play music for David and us. My mom joined us as they played Mozart, Rogers and Hamerstein, wedding music, and other requests. David love it. Every now and then he would yell out, "Too Loud!" I think he asked them, "Guess what?" 50 times in the hour and a half they played.

Thankfully David has been sleeping the last two nights. Please continue to pray this continues.

As we listened to the quartet Daniel enjoyed sushi with some of his friends. He said he loved it. Personally I like my meat barbecued. He can have it. Tomorrows a day off. Have lots to do to get ready for our cruise to Greece and Italy. Will write more about that later.

Welcome to It is Well with my Soul

2009-08-26T12:56:00.000-04:00

Welcome Family, Neighbors, and Fans and Friends of David Gregory Pfohl!

For many months now I have wanted to create a place of community where we can share with you our Journey with David; the good, the bad, the ugly, and the funny! A day doesn't go by that we are not asked; "How is David?, How are you? Is there anything we can do? How can we help? What exactly is Batten's Disease?" We will do our best to share with you as honestly and openly as possible. Be warned, there may be days we will be brutally raw and other days you will think we are being flippant about David's disease. Welcome to our journey.

Why the name, It is Well With My Soul? If you open David's Fayetteville Manlius Year Book you will find the following words under David's picture, "What ever my lot Thou has taught me to say, It is well with my soul?" For weeks we had tried to help David chose a quote we could use but David was never satisfied. The day finally came that it was due and David tried to tell his Vision Specialist, Donna Richards, what he wanted written. Unfortunately all he could come up with were a couple words:

River, Soul & Well

Donna called me and asked is this one of David's favorite bible verses? Being the seminary trained pastor that I am I said, "I have no idea!" I encouraged her to Google it. When she did, she found the words to It is Well With My Soul, written by Horatio Spafford. When she got to the line, "What ever my lot Thou hast taught me to say, It is well with my soul, he yelled, "That's it, that's what I want!"

So we want you to know, as we walk this journey together with you that It is Well With Our Souls! We thank you for your interest, your love, your prayers, and your support. We will try to be faithful in updating you. Feel free to pass this on to anyone you like.

If you are interested in learning more about David's Disease, Battens Disease, please check out The Battens Disease and and Research Association web page.