Every summer I went to Boy Scout camp.  While I enjoyed the hiking and fire building and working on my merit badges, I often felt a little lonely.  Night time was the worst.  I loved it when I got a letter from home.  They were always brief; filled with what mom was cooking for dinner that night, how the tomatoes in the garden were growing, or what my dad was working on out in the shop.  But they always ended with the reminder that mom and dad loved me and that they were looking forward to see me and hear all about what I had done that week.  Whenever that feeling of loneliness would poke itself into my mind, I would pull out the letter and reread it, reminding myself that I really wasn’t alone.

Last week I was struck by something my son Chris said in his comments as David’s brother.  He wrote, “Your kids can feel as alone as you.”  For the past five years I have said countless times to countless moms and dads that they are not alone.  Never once did I stop to think or remind the parents we serve that their typical kids also needed to be reminded that they too are not alone.  Like campers huddled around a fire feeling far from home and alone they need a note, a reminder, a message from you as their parent reminding them that they are not alone and are loved as much as their brother or sister who has special needs.

Several weeks ago I read a blog written by Ellen Stumbo entitled, “To the typical siblings.”  Ellen writes a letter from a parent to a typical sibling of a brother or sister who has a disability.  You can read it by clicking the following link:


As I read the letter I wished I would have written something like this to my boys.  She communicates so well what I would have wanted to say and what they needed to hear.  So I decided to take her letter as a template and rewrite it from me.  Here is what I came up with:

Dear Chris and Dan,

I know you have had to sacrifice so much as David’s brothers, and I wish you hadn’t. For the many times you have thought it wasn’t fair, Mom and I have felt it too. And if you’ve had to miss out on life experiences, please know that we wish we could offer you the world.

Perhaps at times you’ve felt overlooked, because David’s needs demand all of our attention. We hope you know how often we think about you and of the wonderful young men you are becoming. We are very proud of you. You make our lives so beautiful.

Thank you for sharing how David’s disability has affected you. Yes, there have been sacrifices and some things you’ve had to give up, but you have gained so much from having David as your brother. There is no doubt God has used David’s disabilities to shape you into who you are today. You are both compassionate, caring, accepting, and kind human beings.

There is little doubt both of you are more mature than others your same age. You have probably had more responsibilities than most of your peers. I guess in some ways you’ve lived a different life, life impacted by disability. We are so proud of you.  There is no doubt that because of your belief in the value of every life, your compassion for others, your faith in a good and loving God, you will go out into the world and change it.

Thank you Chris and Dan for being you. Please don’t ever forget we love you. If you ever wonder who we look up to, it’s you. We could not be prouder or love you more fiercely.

I wonder if you might find a few minutes this week to write a letter to each of your kids who need to simply be reminded they are not alone.  Feel free to write your own, use Ellen’s or my letter as a template.  It doesn’t have to be long, just a note from mom or dad reminding them that you are proud of them, that you love them, and that they are not alone.  I bet they will hold on to it and read it the next time they feel alone.




Dan, David, and Chris


Do you remember the first time you drove a car all by yourself?  Do you remember what you were doing and where you were when the planes hit the twin towers?  Can you recall your first kiss?  Some of our memories are seared so deeply in our heart mind and soul that they become a part of the very fabric of our lives.  These experiences are normally filled with emotions which act like a highlighter pen capturing and emphasizing the event or person or location forever in our mind.

One of the memories I will always carry with me is telling Chris and Dan that their brother David was going to die as a result of his disease. “Your brother has Batten Disease, it is untreatable and always fatal.”  Even typing the words makes me nauseous again.  My few words and the experience of the following years changed my boys forever.

For thirteen years Chris and Dan labored, loved, and cared for David with us in their own unique ways. They fought and played like normal brothers.  Sometimes they celebrated the fact that because of David’s white cane and obvious disability we were ushered to the front of the line at Darian Lake or the Empire State Building.  Other times they felt alone and ignored and I am sure at times “less loved” because of the extra effort and time it required for us to care for David.  Chris and Dan dealt with David’s illness each in their own unique way.

I asked both of them if they would be willing to share something about being David’s brother.  I am so proud of my two boys and the men they have become.  Thank you for listening to a part of their story.


I think it must be hard for some people to remember that to me David was just my little brother. We had already developed a relationship before his diagnosis and for a long time nothing but his sight was affected by his disease. David drove me nuts, tried to get under my skin, and was a pesky little brother following me and my friends around all the time. I didn’t think about him as “my special needs brother,” as “blind,” or as “poor David.” Sure, sometimes I didn’t consider his disability the way I should have, and I wasn’t as gracious or kind to him as I should have been, but that had absolutely nothing to do with the fact that he had a disability: he was my brother. We fought, played, and stood up for each other like brothers do.

More than even their parents, I think siblings of special needs children have an easy time thinking about their sibling as a person. We understand that our siblings need more help than we do. We know that means less time for us than if we had a typical sibling. We also wouldn’t trade our sibling for the world. Parents: don’t treat your kids like they don’t understand this. Your kids can feel as alone as you in this, but the reality is you’re a team and you can both support each other. By spending just a little time with them,


Being David’s little brother was a challenge that crescendoed until his death in 2009. Our interactions in life until he was about 14 years old were pretty typical for brothers 4 years apart. We fought, played games, I “spied” on him and his friends, and I tagged along with them as often as I could. Around age 14 David’s disease started showing its ugliness and he began having difficulty with day to day things. This got worse over the years. Eventually, he could no longer bathe, eat, walk, or talk.

 Watching his progression towards death (literally his brain cells dying) was incredibly difficult for me to deal with. I was overwhelmed with depression and anxiety and was unable to focus on anything but making pottery and searching for ways to escape what I was feeling. I began seeking respite in anything that would distract me from his decline, spending lots of time with friends, riding my dirt bike, and making pottery. I also snuck alcohol from the liquor cabinet, took my prescription pills in a way I was not prescribed, and used anything I could get my hands on to escape the reality of my brother slowly dying. Too much alcohol or a bad combination pills could have ended my life and devastated my family. All I wanted was freedom from my depression and for the anxiety to stop. I could think only about ME.

 I have to thank God for preserving my life through those “Dark Ages”. I was selfish and desperately needed to understand the truth of Romans 8:28 which speaks of God working all things together for the good of those who love Him [God].

 My parents loved us a ton. I remember it would come up in conversation amongst my friends that they are great, and it’s true they are! I don’t think this is just a coincidental trait of theirs; I see now that they sought to honor God in the way they raised us three boys. They disciplined us in a way that allowed us to understand the consequence for disobedience, to understand respect for others and for women, they raised us in the truth of the bible, and loved us unconditionally. Even through all of the pain and suffering I caused my parents in choosing the easy way out with alcohol and foolish decisions, they chose to love me and never expressed that the opposite was true. Even when they were utterly displeased and disappointed in my decisions, they made sure to tell me they loved me and cared for me. This is so important. I knew my parents loved me even if their attention was placed on David in an unequal amount of the time. Even when I felt neglected or second place, I never experienced the question of whether they loved me. I can’t say it’s the most important thing for a child, but knowing that their parents unconditionally love them is pivotal to their emotional health.

 If there is one thing I could have changed, it would have be my perception that I couldn’t come to my parents with my struggles. That I couldn’t tell them the truth about what I was feeling, or thinking, or desiring. I was fearful of their response and didn’t want to cause them any more upset than they already had with David’s sickness. This was foolish of me and I wish I would have taken advantage of their Agape (selfless) love for me in that time.



My Three Sons


Brenda and I bought our first real painting for our home in Door County, Wisconsin. It’s entitled “Mischief Afloat” by Pamela Murphy.  She is a local artist who collects old photographs and chooses figures from them for her paintings.  She oftentimes doesn’t paint the faces of the people in the photographs allowing the viewer to find a little of themselves or others they love in her paintings.

The moment we saw the painting we saw our three sons sitting in the boat. Christopher our oldest sits in the front of the boat as the elder statesman, contemplating the history of boat construction and use.  Always seeking to learn more and understand why things do what they do, he carefully estimates the load bearing weight of the boat and its safety features to ensure his boys would be safe to sail.  Slowly he begins to plan and dream how he could build his own boat with new and improved features.  There is no doubt he will do it.  David stands in the middle as the second born brother.   While he is blind he listens to the water as the boat carefully cuts through the morning mist.  He feels the water that hangs in the air on his face.  With his head tilted up he listens to the seagulls as they fly over.  While at times his incessant talking becomes an irritant to his brothers, it sadly will soon be missed.  Daniel sits in the back of the boat dangling his hand in the water dreaming of how he could catch a fish with his bare hands.  His mind is filled with color and texture and light as he captures the stillness and the beauty of the moment in his mind and heart, hoping to later share it with others through a story or painting or piece of pottery.  At the same time he is poised to jump into the water, not wanting to miss the adventure that waits below the surface.  My three sons!  All very different, all very loved by their mom and dad, each a unique masterpiece.

Over the past few weeks I have spent a lot time looking at the painting that hangs on our fireplace, thinking about my three sons and the unique adventures they are on. While I often write about David, I realized I have not shared much about Chris nor Dan.  It isn’t that they don’t have a story to tell or that I love them any less than I loved David.  Sadly I think I take their presence in my life for granted.  I let the business of life stop me from simply calling to say, “I love you or what are you doing?”  I listen to the little lie in my head that says they are too busy or occupied with their own lives to want to hear from their old man.  I let a small hurt build into a huge wall that was never meant to be taken the way I heard it, causing me to miss out on experiencing their adventures of “Mischief Afloat.”  Thankfully I know Chris and Dan love me.  And thankfully I am convinced they know I love them.  We are quick to say we are sorry and we are willing to say I forgive you.  And I love the fact that they often invite us into their boats to share their lives with their beautiful families.  I love sailing with all of you!

Boys I celebrate your uniqueness and am blessed to be your dad.  Chris, if you ever start building that new boat I want to help. Dan, I want to watch you as you create that next masterpiece, but please don’t ask me to jump in the water.  David, I miss you and love you!

easy-peasyDid you know that the saying “Easy Peasy” comes from the phrase “Easy Peasy Lemon Squeezy?” It was coined in the 1950s in a commercial for a Sqezy, a British detergent brand which was sold in a squeeze bottle and had a lemon scent.  It simply means it is something easy to do.  No effort.  Simple.  When your wife asks you to take out the garbage tonight just say, “No problem, Easy Peasy!”  If your husband asks for a five minute back rub say, “Sure!  Easy Peasy.”  If your teenage son ask you if he can take six friends on a road trip to Vegas say, “NO!”  (I hope you didn’t think I was going to say, “Sure, Easy Peasy!”)

Can I ask you to do something that I believe is Easy Peasy? It won’t cost you any money.  It will take less than 30 seconds.  You don’t have to pour ice cold water on your head.  You can even do it in your pajamas.  Would you please “Like” David’s Refuge on Facebook?  All you have to do is simply click the Like Button on our Facebook page.  In fact, click the following link:


 It will take you directly to our page and you can Like us!  Easy Peasy!

Some of you may be asking why I should Like David’s Refuge’s Facebook page. Here are a few reasons:

  1. It give us permission to develop a better relationship with you by sharing stories, upcoming events, and how we are accomplishing our mission.
  2. It is a great way for you to identify with us and our mission. Your friends and family will see you liked us and want to know more.
  3. It is an Easy Peasy way to help us communicate with others how David’s Refuge is truly making a difference.

To be honest, there are some selfish benefits of you liking our page. A 2011 Georgetown study showed that those who participate with nonprofits via social media are:

  • Twice as likely to volunteer compared to people who don’t promote causes on social media
  • Twice as likely to participate in fundraising events and walks
  • Three times more likely to ask others to donate

As of today we have 1,828 Likes. If you haven’t liked us, would you consider doing it?  If you have liked us, would you be bold and share this blog on your Facebook page and ask your friends to consider Liking us?   Honestly, it’s Easy Peasy!  Lets see if we can hit 2,000 Likes by the end of the week.


do-you-like-meI was a very shy boy growing up especially around girls.  One word or a question from a member of the opposite sex and my ears would begin to glow red, my tongue would grow thick, and my heart would begin to beat so hard I was sure anyone within ten feet of me could hear it.  I would try to answer to the best of my ability but something like “I good like you tomorrow is nice” would come out of my mouth.  I was even afraid to use the famous “Do you like me?” note with the convenient yes, no or maybe check off answers.  Thankfully I found the nerve thirty two years ago to ask Brenda to marry me and she checked off the yes box in the note I sent her!

I now realize my shyness was a symptom of me not believing in myself.  Having a poor self image and unable or unwilling to see my strengths stopped me from stepping out of my comfort zone, from believing other people would like me, and from daring to be bold.  Thankfully this is no longer true for me.  Today I believe in myself and in the incredible unique way God created Warren Pfohl to be.  He doesn’t make junk and he doesn’t make mistakes.  This belief gave me the courage to quit my job and go to seminary thirty years ago.  This gave me the courage to move my family to Poland for six years.  This gave me the courage to become a pastor.  This gave me the courage to believe I could care for David when we got his diagnosis.  And finally it gave me the courage to step out in faith to start David’s Refuge five years ago with Brenda.

I hope today as you read my blog you will also choose to believe that God doesn’t make junk and he doesn’t make mistakes and that He loves you.  This is what I know to be true about you today:

  1. You are unique and a masterpiece!
  2. You are liked, in fact you are loved!  David’s Refuge loves you, Brenda and I love you, and even more importantly, God loves you!
  3. You are not alone!
  4. You are filled with potential and greatness!  Believe in who you were created to be!
  5. Your greatness is already being displayed to the world in the care and love you have for your children!

I have conveniently filled out the following form for you:





This past Saturday we held our third annual Taste of David’s Refuge.  It was an elegant, extravagant, food and fun filled evening celebrating the legacy of David’s life and the impact of David’s Refuge in our community.  Our Executive Director, Kate Houck, wanted to invite someone special to be the key note speaker.  She wanted someone who was passionate for David’s Refuge, someone who had “skin in the game”, someone who could clearly and enthusiastically communicate the importance of our mission to Care for the Caregiver, someone who had lived the life of a caregiver, someone who knew David, and someone who had poured their life into others who also were caregivers of children with special needs or wrestling with a life threatening disease.  She searched from New York to California and only one candidate met these rigorous expectations: David’s mom and cofounder of David’s Refuge, my beautiful wife, Brenda Pfohl.

Brenda did such a wonderful job sharing our story and thanking our Board of Directors, our volunteers, and our financial supporters.  The following is the message she shared.  I hope you enjoy it!

Doing Things We Can’t;
That’s How We Get To Do Them

Thank you Kate!  I am so honored to have this opportunity to stand here and look out at all of you who have made David’s Refuge available to so many parents.Looking at where we are now, it’s hard to believe that 5 years ago, David’s Refuge didn’t exist.

Warren and I, along with our boys, walked the painful journey of Batten Disease. We watched helplessly as David was diagnosed at 8 years old with this horrible, untreatable disease, then helped him adjust as he slowly lost all his abilities. In spite of his incapacities, David pressed on to do just about everything (and more) than most people do in their entire lifetimes.  He had this as his motto:

I keep doing things I can’t; that how I get to do them.

A few years after David passed, we felt a desire to use our story to help other families still on the journey.  With God’s help and the inspiration of this incredible boy who believed in doing the impossible, a dream was born: to create a place of refuge to care for parents still on that journey of caring for their children with life threatening conditions or special needs.

Never having started or run a business, we wondered how were we ever going to do this? It seemed impossible.  David’s motto cheered us on: “just keep doing what you can’t; that’s how you’ll do it.”

So we began by converting our home into a 5-star B&B.  With the help of some amazing volunteers, we created a logo, a website, a marketing plan, an application process, developed a (non-program) program, pulled together a board of directors, and applied for our 501c3 status. We even learned to be Innkeepers!

We had no idea whether anyone would come.

The first year we hosted 43 retreats in our home and people just kept signing up. It was incredible to see moms and dads come, totally exhausted and weary and leave a few days later restored and renewed. It was working!

By the end of the year we felt exhausted from being Innkeepers, and overwhelmed by the need.  We thought, how are we ever going to keep doing this?  We prayed for help and remembered David’s words: “just keep on doing the things you can’t; that’s how you’ll get to do them.”

That’s when God brought us Rory Lawrence to help us with our guest relations; this took an enormous load off our shoulders.

We continued moving forward but quickly realized to meet the need, we had to grow.  So again we prayed and remembered David’s words: Keep doing the things you can’t, that’s how you get to do them.” That’s when we came up with the idea to host our guests in B&Bs and Inns. We soon began partnering with our first B&B, Mary’s Meadow. Since then we have grown to partnering with 17 B&Bs from Hamilton to Rochester.

We grew from 53 retreats in 2013 to over a 100 the next year. As the applications kept coming in we realized we couldn’t keep doing this alone. How will we be able to continue? Again: “I keep doing things I can’t; that how I get to do them.”

So the Board brought in Lis Fournier to help us develop a Strategic Plan. From there we set out to hire another staff person. God brought us Kate Houck, who initially served as our Development Director then more recently as our Executive Director.

In order to keep doing what we can’t, Kate has brought on Sarah Watson to our team as our Administrative Assistant and grown our Board and our team of consistent volunteers.

Our growth has continued, serving over 150 families this year with a projection of 250 in 2017!

Even though we have a great staff, the truth is David’s Refuge could not be where it is today without each one of you and our many many wonderful volunteers.  So Warren and I just want to say thank you.  Thank you for helping us “do the things we can’t” so together we can keep caring for the caregiver.

(Shhh…This Sunday is Brenda’s birthday.  If you have a minute would you please wish her a happy birthday and tell her how she has blessed you, your family, or someone you know!  I’m blessed to call her my best friend, wife, and fellow cofounder.  I love you Brenda.)


This Friday is The Taste of David’s Refuge.  Yes its a fund raising event but it is so much more.  It’s a celebration of success, of a life giving mission being accomplished with excellence, and of a  community that believes in and loves the moms and dads we serve.

But I really like to think of it as a celebration of David’s life.  He lived, he gave joy, he trusted God, he suffered, and he died.  BUT HIS STORY DIDN’T STOP!  Hundreds of families have been given a taste of hope, reminded they are not alone, and loved because of David.  He is the “The Man Behind The Mission.”

Today I want to give you a “taste” of David and how his life inspired us to start David’s Refuge.  While I am biased in that I am David’s dad I believe you will be inspired by his story.

The Man Behind the Mission

David’s Refuge was started by Warren and Brenda Pfohl as a way to live out their faith in a God who is still good and powerful and loving despite the fact that their son, David died from a horrible progressive untreatable disease. Warren often says it is a story of redemption.  The Urban Dictionary defines redemption as follows: “to make something acceptable or pleasant in spite of its negative qualities or aspects.”  David’s life, suffering, and death have become more than acceptable or pleasant, it has become a masterpiece.  It was their faith in Jesus and the sure and certain knowledge that David lives on, not only in heaven but in his own personal story of faith, which empowered the Pfohls to create David’s Refuge.


David’s faith was simple, love others as God had loved him. While many said David was able to love without judgment due to his blindness, it was really his passion to follow Jesus’ example of unconditional love.   If you open up David’s Fayetteville Manlius High School yearbook you will find the following words under his picture, “Whatever my lot Thou has taught me to say, It is well with my soul.”  For weeks David’s parents had tried to help him choose a quote, but David was never satisfied and was unable to clearly communicate what he wanted.  The day finally came when his quote was due.  Donna Richards, his teacher of the visually impaired, tried desperately to understand what David was trying to communicate.  Unfortunately all he could come up with were three words:

River, Soul, Well

Donna called Warren and asked is this one of David’s favorite bible verses? Not knowing he encouraged her to google them and see if it helped. When she did, she found the words to the hymn, It Is Well with My Soul, written by Horatio Spafford.  She started reading the hymn to David.  When she got to the line, Whatever my lot Thou hast taught me to say, It is well with my soul, he yelled, “That’s it! That’s it! That’s what I want!”

Warren and Brenda engraved these inspiring words on the top of David’s gravestone. They are a reminder to everyone who passes by that David’s story isn’t finished.  They remind us that God is still in control and that from the ashes of David’s struggle with life and death God could bring something good from his life.

At his funeral over 1,000 people joined their voices to sing David’s favorite hymns. No doubt there were many there who thought, “Are you serious!  All is well?  David is dead.  How can they say it is well?”   Warren and Brenda would say,

  • David is no longer burdened by the brokenness of this world and his disease
  • Warren and Brenda are certain David is in heaven based on his faith in Christ and that they will see him again
  • God was able to take even the death of their son and create something of beauty
  • David’s story of hope, faith, and love live on in David’s Refuge and the families we serve

Psalm 46:10 says, “God is our refuge and strength, always ready to help in times of trouble.” There is no doubt David is proud to know that his story and faith created a “Refuge” where parents can be refreshed, restored, and renewed as their journey through the trial, joys, and struggles of raising their children with special needs.




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