Feeds:
Posts
Comments

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:

i-am-loved

 

 

brenda-blog

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

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.

 

 

 

Finnsfans

Many of you have asked how Finn is doing.  If you are interested in following their journey and want updates please follow them on their new blog  at http://www.finnsfans.wordpress.com.  This is a great way to communicate with them.  Lets overwhelm them with the knowledge that they are loved by God and not alone.

finn

PS: Please don’t expect Dan or BrandiLee to write back or respond to your comments.  They have enough on their hands already.

diagnosis

For the past week many of us have been praying for Finn and his family.  Almost daily I think about them sitting down with the doctor and hearing the words, “Your son has cancer.”  The weight of those words are almost unbearable.  Every parent of a child with special needs or those who are struggling with a fatal disease like cancer can remember getting the diagnosis.  It is a moment seared in our heart, mind, and soul.

While it has been almost 19 years since we received David’s diagnosis I can still remember hearing the doctor say, “David has a fatal, untreatable disease.” I tried to tell a friend of mine about it just two days ago and the tears began to flow.  The following is something I wrote in a blog right after getting David’s first diagnosis:

The pit I feel in my stomach as I write these words was magnified the day the doctor gave us the diagnosis.  Something was wrong with David’s macula and there was nothing we could do.  The feeling of helplessness was overwhelming.  We walked to our car with David knowing that our lives had been forever changed.  We were numb.  We felt betrayed by God.  We didn’t want to believe the doctors.  We cried daily, if not hourly.  I would lay in bed listening to Brenda cry so hard I thought she would die.  I had no energy or knowledge as to how to help her, so I would cover my ears and pray she would stop.

During the first few weeks I wondered if I was losing my mind.  We flipped through denial, anger, grief, confusion, and fear like watching late night TV.  Our faith helped, but there were times we wondered if God had lost control.  Thankfully we had friends who reminded us we were not alone, that we had the incredible privilege to love and care for David, and that God loved us.

I know that many people wanted to help us but didn’t know what to say. It probably would have been best if they didn’t say anything and simply told us they loved us and were there for us.  I think it was hard for them to see us grieving, so they tried to help us move beyond the hurt and heartache.  They would say, “God never gives us more than we can handle” or “God must have thought you were special to give you a special needs child.”  Both of these statements are not true and unhelpful.  We knew people were trying to be helpful, so we “cut them grace” and thanked them for their thoughts.

We started to practice living one day at a time. J esus once said, “Don’t worry about tomorrow, for tomorrow will worry about itself.”  While we still struggled with anxiety and fear for the future, we learned to find joy and contentment in each day.  Some days were awesome, others simply were almost impossible to get through.  But we found contentment and joy in the privilege of caring for David and our other two boys.

We continue to pray for Finn, his brothers, and his mommy and daddy.  May they know beyond a shadow of a doubt that they are loved and not alone as they love and care for Finn.

 

Finn Schafran

Cancer. Just typing the word makes me feel sick. Sadly our dear friends, Dan and BrandiLee Schafran’s little boy, Finn was just diagnosed with a rare malignant cancer called rhabdomyosarcosis. The battle has begun. Finn needs our prayers.

Who are the Schafrans you ask? They are: Our friends. Wonderful parents. Followers of Christ. Guests of David’s Refuge. Hosts of David’s Refuge. The parent of a child with special needs. Committed husband and wife. A family who needs our prayers. Scared. Faithful. Physically and emotionally exhausted. Overwhelmed. And now the parents of a child with cancer. The battle has begun. Finn needs our prayers.

The journey before them is going to be long and exhausting. It will include forty two weeks of chemo with radiation added in around week thirteen. There will be sleepless nights, blood transfusions, impaired immune system, nausea and diarrhea, loss of hair, and relational stress. The battle has begun. Finn needs our prayers.

Amazingly Dan and BrandiLee’s faith in a loving God despite the brokenness of the world we live in has remained rock solid. The following is from an email I got from Dan,

 We feel very drained – physically, mentally, and emotionally.  And yet through the entire process (from start to now) we have felt the underlying peace that comes only from God and have tangibly felt God sustaining us.  Psalm 46 says that God is our refuge and our ever present help.  Psalm 91 says that “he who dwells in the shelter of the most high will rest under the wings of the Almighty.  I will say of the Lord, He is my refuge and fortress, my God in whom I trust.”  Christ commanded those who are weary and heavy laden to come to him for his yoke is easy and his burden is light.  This is not just literary encouragement, but the very word of God which physically upholds us.  This is what helps us in the face of hardship from becoming myopic or despairing.”

The battle has begun. Finn needs our prayers.

I’m not sure where you are in your own faith journey, but would you please stop and say a short prayer for Finn and his family? Pray for his healing. Pray for his family. Pray that they would not feel alone and that they would find refuge in the extravagant love of God. Yes, the battle has begun. Finn needs our prayers.

PS: Please take a moment and write a word of encouragement to Dan and BrandiLee on this blog

stress

I took a stress test online today and scored 443!  When I looked up what this meant it said, “You have a high or very high risk of becoming ill in the near future.”  Some of the biggies for me were the death of two close family members, retirement, and a change in residence.  Thankfully pregnancy and a jail term were not on my list or I would probably be writing this in the back of a stretcher on my way to the hospital.

Richard S. Lazarus, the psychologist who developed the test I mentioned above defines stress as “a condition or feeling experienced when a person perceives that “demands exceed the personal and social resources the individual is able to mobilize.”

In less formal terms, we feel stressed when we feel that “things are out of control.”  There is no doubt that as the parent of a child with special needs you often feel “things are out of control.”  The aid doesn’t show up, the seizures won’t stop, your child can’t communicate what is hurting them, the school won’t give you services, and your child is once again not included.   There were many days when we were caring for David that I woke up with stress and went to bed with stress.  It was my ever present companion.

One of the reasons we started David’s Refuge was to provide a resource to offer parents who were just like us, families who were overwhelmed and stressed out by their role as caregivers.  We recognized the importance of self-care and respite, the need to unplug even for an hour to recharge our batteries.  On David’s Refuge website you will find the following quote from Suzanne Mintz, the President and Co-Founder of the National Family Caregivers Association:

 “It isn’t possible to talk about self-care for family caregivers without talking about respite. More than any other service, respite or a break is what family caregivers want most.  The primary purpose of respite care is to provide relief from the extraordinary and intensive demands of ongoing care to someone with special needs, thereby strengthening the family’s ability to provide care. Respite care is planned and proactive.”

So my question for you is how are you being proactive in creating a moment of respite for yourself?  I know you are stressed!  I know you need a break!  So what is your plan to find a moment of respite so you can care for yourself?  It may simply be curling up and watching a thirty minute show on TV with a cup of coffee and bowl of popcorn (sure a glass of wine is OK as well!.)  It could be a weekend away with David’s Refuge.  My encouragement is to do something.  Start small but be proactive.  If you want some encouragement give David’s Refuge a call (315-682-4204) and we can help you be creative.

If you are willing please share with us some of the ways you squeeze in a little respite.  We would love to hear from you.

%d bloggers like this: