On The First Day of Christmas….

I posted this last year and wanted to share it with you again this!  It is a great one to share with folks who ask the question, “What can we give you or do for you this holiday season?”  Merry Chrismtas.

Every year a few weeks before Christmas friends and family would begin to call and ask, “What can I get David for Christmas?”  Each year David would lose more of his sight, physical ability, and cognitive skills.  While his love and passion for the holiday never waivered, his ability to express what he wanted and our ability to find meaningful gifts grew more and more difficult.  People were creative.  My brother Wayne would always find the loudest and most obnoxious noise making toy possible.  Thank you Wayne!!  There was a never ending supply of Adventures in Odyssey CDs, soft and cuddly animals, NY Yankee paraphernalia, microphones, tape recorders, and country music.  David was always happy to open a gift, no matter what it was, and then give the giver one of his famous hugs.

But not only was it hard for our friends to find something to give to David, it was also a challenge to  know what they could give us, how they could support us.  I’m sure there were some of our friends who simply were afraid to ask us what we needed.  Others felt guilty that they hadn’t been in touch so never reached out.  I’m sure we seemed distant at times, overwhelmed, and when asked what we needed our knee jerk reaction was, “Oh nothing, we are doing just fine.”

So the next time someone asks you “What can we do for you?” give them the following 12 ideas.  There are people right now who want to love you, serve you, help you but they don’t know how.

  1.  Help with my other children:   Sometimes all I need is an extra set of hands.  You could read them a book, help them with homework, or pick them up from an after school activity.  You might become someone they can feel safe to talk with about their brother or sister.
  2.  Babysit so we can go out on a date:  It goes without saying that having a child with special needs can be devastating to a marriage or any relationship.   I can’t even explain to you how a break improves our mood and energy level.  I know you are afraid you can’t do it, but we would never leave you unprepared.
  3. Cook us a meal:  At the end of the day I am often so exhausted that cooking a meal overwhelms me.  This then makes me feel guilty that I am not caring for my family.  If you really want to knock it out of the park, ask us what we like to eat.
  4. Do my laundry:  I simply need help staying on top of the daily barrage of dirty clothes, diapers, and towels.  Yes, you will know if one of us wears boxers or tighty whities, but that is OK with me.
  5. Clean my house:  My house is filled with wheel chairs, adaptive equipment, boxes of diapers, medical supplies, toys, bikes, and lifts.  I want and need order but at the same time know my first priority is to love and care for my children.  My pride has stopped me the past in asking for this type of help.
  6. Be my friend: I am lonely and often afraid.  While I am the parent of a child with special needs, I am very much like you.  I simply need someone who will listen to me.  I know I can be a “Debbie Downer” at times, but please don’t turn away from me.  I need and want to talk about something other than my child’s needs or my hurt.
  7. Pray for me: I long to believe that God loves me and that He is good and all powerful.  Honestly, I struggle believing this.  It is a real battle for me and I don’t want to lose my faith.  Ask me specifically what you can pray for.  If I don’t have anything specific, that is OK too.  Remind me that you are praying with a quick email.
  8. Be my Uber:  While I wished I could be in two places at one time, I have discovered it is impossible.  There are many days I simply can’t get to school to pick up my daughter, pick up the prescription at Rite Aid, send the package at the post office, and go shopping for lunch supplies.  While I know Uber is not legal in NY, this is different!
  9. Remind me that it is OK to care for myself:  I battle daily with guilt that I am not doing enough to care for my child.  Often I sacrifice my own wellbeing for their wellbeing.  Tell me to put the oxygen mask on me first and then onto my child.  Encourage me to sign up for a weekend at David’s Refuge or some other type of respite program.
  10. Include my family and child in your life:  My child rarely gets invited to a friend’s birthday party.  I try to convince myself he doesn’t realize it, but I know he does.  We are loud, we have lots of stuff, it is hard to communicate with my child, and often there are tantrums.  If you are willing to try, I can help you understand my child’s and our families special needs.  We would love to visit.
  11. Be my cheerleader:   Everyday I battle to make the best life for my children.  Insurance companies don’t want to pay for certain meds and treatments.  Neighbors complain that my child is too loud or disruptive.  Every IEP is a struggle.  I need you to encourage me to keep battling.  You might even want to write us a note and tell us you love us and are praying for us.
  12. Give me the gift of your grace: I can promise you there are going to be days I am going to snap at you, forget to call you back, cancel a meeting, and be grumpy.  Sometimes I don’t even know why I act the way I do.  Please give me the benefit of the doubt and extend to me some grace.

Warren’s Sermon: Beauty from Brokeness

Today will be my final blog entry on the “The Story of David’s Refuge.”  It has been fun, therapeutic, and at times difficult to wade through some of the more difficult parts of our story.  Thank you for taking the time to read it.  It is truly a picture of beauty coming from brokenness.

In closing, I am going to share a sermon I just gave at our church here in Bonita Springs, Turning Point Church.  It is a great summary of our journey, our struggle to understand disability from a biblical viewpoint, and how we took our pain and loss with the help of God and started David’s Refuge.  As many of you know I was a pastor for 15 years.  I unashamedly believe in the bible and use it throughout my message.  If this is something you don’t believe in or care to watch, simply sign off and come back next week for my next Wednesday with Warren!  If you would like to watch the sermon, simply click the video link below.  Thanks for being a part of our story.


3 Gifts: You are not alone, What you do matters, God loves you!

I am not much of a shopper.  The moment I walk into a shopping mall something happens to me physically.  My eyes start to dry out.  My mind goes numb from all the choices.  And after about six minutes of watching all the people running from one store to the next with bags full of treasures, I begin to feel exhausted.  This is especially true if I walk in not knowing what I am looking for.  As you can imagine, Brenda loves it when I go shopping with her.

I do best if I know exactly what the person wants or needs.  I love it when Brenda says, “If you are looking for something to buy me for Christmas, go to Macy’s.  Go up the escalator to the second floor, turn right, and you will see the bedding department.  Look for the white Belgian Flax Linen Sheet Set, King size.  It is on the bottom shelf.”  No guessing!  I buy exactly what she wants.  Merry Christmas.

Thankfully, six years ago when we started David’s Refuge we knew exactly what we wanted to give the parents we serve.  We didn’t have to wonder or guess because we were the parents of a child with special needs who desperately needed what we now have the privilege to offer.  What is it?  Simple!  We offer the chance to be reminded of three things:

  • You Are Not Alone
  • What You Do Matters
  • God Loves You

You Are Not Alone

One of the most life sucking forces in the world is that feeling deep in your gut that you are all alone.  I remember one Sunday watching my wife sit with David in the lobby of our church feeding him his favorite health food, a chocolate covered donut.  David’s condition had progressed to the point where he could barely communicate.  He was blind, physically and mentally challenged, and diagnosed with an untreatable disease that was terminal.  As they sat in the middle of the busy foyer, people walked around them, avoiding them as if they had the plague.  That afternoon Brenda came home weeping, crying out, “I can’t do it anymore, I feel so alone.”  We knew that people loved us, but they were afraid, not knowing what to say or do so they did nothing.  That is why every guest we serve at David’s Refuge is reminded that they are not alone!

What You Do Matters

At David’s Refuge we remind every parent that their child is a “divine” calling and that there is no more important role than the role they play as mom, dad, or guardian.  I remember one Labor Day when all of our aides called and said they couldn’t come in.  I was sitting on a porch swing with David listening to a New York Yankee game.  I was angry, feeling sad that everyone one else in the whole world was at a Labor Day Picnic, feeling “stuck” with David.  Obviously I had lost perspective!  What could have been more important than rocking on that swing with David, listening to a ball game, and reminding him he was loved by his daddy?  That is why every couple at David’s Refuge is reminded that what they do to care for their child matters!

God Loves You

Our hope is that each guest who stays at David’s Refuge would experience God’s extravagant love for them.  What does that look like?  It’s being greeted by a host couple who accepts and loves our guests unconditionally.  It’s doing everything we do for our guests with extravagance and excellence.  It’s treating each individual with respect and grace.  It’s giving them the gift of a weekend away, free of charge, no strings attached.  Our prayer for each Mom and Dad or guardian is that they would know the love God has for them and their children.

When you stop and think about it, the Christmas story is really a love story.  While it’s simple enough for a child to grasp and celebrate, it is one of the most incredible loves stories of all time.  God, the creator of the universe, loved us so much that he sent his one and only Son into this world, to be born as a human baby, so that he could grow up and tell us how much his Father loved us.  That, my friends, is extravagant love!  And that is why every parent we serve is reminded that God loves them with extravagance!

Do you want to give a gift this holiday season to a parent who has a child with special needs or is struggling with a life threatening illness?  A gift you know they they will want?  Tell them about David’s Refuge.  Include David’s Refuge in your year end giving.  And the next time to see them say, “I hope you know and believe you are not alone, what you do matters, and God loves you!


I am Thankful!

“How can you say you are grateful for your son’s death?”  This father’s anger and grief over his son’s diagnosis was raw.  All he could see and feel as we sat in the living room was the loss, the fear, the unknown, and the dreams that would never be fulfilled.  Sadly, he misunderstood me when I said, “I am grateful and thankful for David and all that we have learned from his life and death.”  I will never be thankful for Batten Disease and the loss and pain it brought into our lives.  It was horrible, painful, and at times unbearable.  But I am thankful that as I sit on this side of his death that this wasn’t the end of our lives or the end of David’s legacy.  We are still healing and grieving David’s death.  The more you love something or someone, the deeper your grief will be.

Thankfully, we now have the opportunity to look back and see the fingerprints of God and the hands and feet of people who helped us as we cared for David and healed after he passed.  When we were knee deep in the midst of being David’s caregiver, it was difficult to be thankful.  When you feel alone and exhausted, it is hard to see any of the good around you.  This is why we preach and stress the importance of respite.  It allows you a moment to step away, to breath, and to hopefully discover something that was there all along but you couldn’t see it through the haze of your exhaustion and busy life.  These are the things things we can give thanks for, even in the midst of  feeding tubes, IEPs, sleepless nights, bathing, tears, and aids that don’t show up.

So once again I say, “I am grateful for David and all that we have learned from his life and death.”  If it wasn’t for David there would be no David’s Refuge Story.  I can’t imagine my life without this amazing organization.  It allows us to tell David’s story, to breath life into moms and dads, to offer resources and support to hundreds of families, and share God’s incredible love in a very practical way.  I am grateful!  What are you grateful for today?

 


David: A Man After God’s Own Heart

It was 3:02 and our first guests had not yet arrived.  Pandora was playing a quiet jazz station.  The flower arrangement was placed in the vase in the bedroom.  The gift basket was filled with gummy bears, chocolate, cheese and crackers,  and a bottle of Pinot Noir.  Now all we needed was for the guests to arrive.  We were excited, overwhelmed, anxious, and grateful for an opportunity to pay forward what so many had done for us.  As we waited, we remembered.  It had been a little less than two years since David had died.  As we peaked through the window curtains to see if anyone had pulled in the driveway, we remembered the exhaustion of caring for David….so many sleepless nights.   We remembered feeling alone and isolated.  We remembered the stress on our marriage and on our two other boys.  We remembered feeling angry at God, each other, and friends who didn’t know how to help so they pulled away.   And the more we remembered, the more we were convinced we were doing the right thing.  Our guests finally arrived.  We loved them, laughed with them, ate with them, cried with them, and sent them home believing they were not alone and loved by God.

But the story of David’s Refuge did not start that first January of 2012.  It really began in Libertyville, Illinois at 6:33 a.m. as David Gregory Pfohl came into the world.  He was loud, proud, and already believing he was in control.  He was healthy, fun loving, and strongly opinionated at an early age.  If there was a button you shouldn’t push, a line you shouldn’t cross, or a command to be followed, he tested it.  Obviously he was going to be a leader.  He was a salesman, and he loved to make money.  He sold golf balls, beanie babies, lemonade, and snack food to the staff where his dad worked.  He was mischievous.  While living in Poland we sent David to preschool.  Everyday the boys and girls would brush their teeth after “obiad” or lunch.  David and another American friend thought it would be a great idea to switch everyone’s toothbrushes.  It wouldn’t be the last time he got in trouble.

We named him David after the well known King David of the Old Testament.  In Acts 13:22 it says this about David,

“I have found David son of Jesse, a man after my own heart. He will do everything I want him to do.”

We wanted David to know God, love God, and have a heart for God.  If you had the privilege of knowing David, you would know in a matter of minutes that our prayers for him had been answered.  He loved God and he loved others with all of his heart, mind and soul.  One evening he and Daniel, our youngest son, were in the bathroom getting ready for bed and he asked Daniel, “Have you trusted in Jesus yet?”  He reminded Daniel how much Jesus loved him and led him in a prayer.  He could have been the next Billy Graham.  We wondered what impact he would make in the world and what he would do when he grew up?

Sadly, David died just short of his 21st birthday.  While we struggled and grieved and mourned his passing, we also held onto the truth that God was not surprised or caught off guard by David’s death.  King David wrote these words in Psalm 139,

You saw me before I was born.
    Every day of my life was recorded in your book.
Every moment was laid out
    before a single day had passed.

David lived his life to the full.  At his funeral we read the passage in 2 Timothy 4:7-8 that says, “I have fought the good fight, I have finished the race, and I have remained faithful.”  He left his mark.  David’s Refuge was born.  I hope you come back next week to read more of the story.


The Story of David’s Refuge

I love telling the story of David’s Refuge.  It is a story of hope, a story of redemption, a story that reminds all of us that we are not alone and are loved by God.  It’s the story of a mom and dad who experienced the greatest fear of any parent, the loss of a child, but decided to not let it destroy them.  It’s a story that acknowledges both the beauty and the brokenness of the world we live in.  It’s a story that breathes life into moms and dads who simply need to unplug and be restored.  And while I admit I am biased, it is a story that is inspiring, motivating, and worthy of being shared.

Over the next several weeks I am going to share bits and pieces of our story of starting David’s Refuge.  Yesterday I was talking with a new friend from Milwaukee who wants to donate her services and time to David’s Refuge.  As I retold the story, I kept hearing this little voice in my own head that said, “This really is an amazing story!”  I don’t say that to boast or to make you think how wonderful Brenda and I are, but to acknowledge how God has taken our story, our dream, and allowed it to grow into something that is absolutely amazing and beautiful.  Our staff, our board of directors, our volunteers, and our financial partners have all made our dream a reality.  It is a story that reminds me everyday that David’s life counted.

Over the next few weeks I want to conclude each blog with some comments that parents have shared with us after being served and loved on by David’s Refuge.  Every time I read them it is a reminder that David’s story, our story, and now your story isn’t over!  One family wrote,

David’s Refuge truly holds families together.  The mission is “caring for the caregiver” but really you care for the whole family as a unit.  Through all the events you build unity and provide respite.  It is quite amazing the amount of supports and outlets you provide to create better outcomes for entire family unit.

Through David’s Refuge “typical” siblings are provided self esteem, normative experiences, and connection to other families living similar adversities, reminding us all that we are not alone and that who we are and what we do matters.

David’s Refuge has become a code word in our home for “STOP, BREATHE, LOVE.”  At least one goal on almost all paperwork (IFSP, Hab Plan, or IEP) for a child with special needs includes goals for healthy living, having daily needs met, and normative experiences with peers.  David’s Refuge reminds us that these should actually be goals for family as well as individual goals.


The Power of Forgiveness

 

There is only way to live and never be hurt and that is to choose to never love another person.  If you are in a relationship with anyone, you will be hurt.  And the more you love that person, the deeper that hurt will go.  Unfortunately, we often enter marriage thinking if we simply love each other more and more, we will never have to say “I’m sorry!”  Most of us realize by day two of being married that this is a crock of bull.  Love is not a barrier against ever being hurt or hurting someone else.  But love does provide a barrier that every relationship needs and that is forgiveness.  Love is a barrier against the destructive and powerful force of unforgiveness.

I’m sure it wouldn’t take you very long to think of a person you are struggling to forgive.  You might be married or engaged to that person, it could be one of your children, or it might be a neighbor or business partner.  Now stop and think of how your inability or unwillingness to forgive that person affects you.  Here are a few words that came to my mind: bitterness, anger, wounded pride, sleeplessness, judgment, resentment, lack of intimacy, emotional distance, lack of vulnerability, and the loss of time and joy.  Everyone of those words are caustic and destructive.  We hold onto unforgiveness thinking we are are controlling the person who hurt us, but in the end we are only hurting ourselves.  You see, the deeper and longer we hold onto unforgiveness, the deeper its claws go into you.

Here are a few truths I try to live by when it comes to forgvieness:

  1. Forgiveness is an act of love that you extend to the other person that actually comes back to you as a gift for yourself.  I can choose to live overwhelmed by anger and bitterness and resentment because someone hurt me, or I can offer in love the gift of forgiveness and experience the gifts of peace, joy, and hope.
  2. Forgiveness is a personal choice I make and is not dependent on whether the person who hurt me is sorry or not.  Corrie Ten Boom, a Jewish holocaust survivor said this about forgiveness, “Forgiveness is an act of the will, and the will can function regardless of the temperature of the heart.” 
  3. Forgiveness doesn’t mean I will immediate trust you again or that there are no consequences for your actions.
  4. My relationship with God has helped me be a more forgiving person.  There is no doubt he loves me and has forgiven me.  This motivates me to do the same.  A verse I often turn to is Ephesians 4:32, “Instead, be kind to each other, tenderhearted, forgiving one another, just as God through Christ has forgiven you.”
  5. Forgiveness is tough.  Sometimes you need someone to help you work through the hurt, pain, and past.  Don’t be afraid to get professional help.

 

 

 


The Crazy Cycle

Do you remember the first “stupid” argument you got into with your spouse?  I do!  It was about whether chili is considered a soup or not.  We had only been married a few weeks and Brenda made her version of chili which included celery, not many chili beans, and spaghetti.  After taking my first cautious taste, in the most loving way possible I said, “This is not chili!  Who ever heard of chili that was brothy, with chunks of celery, served over spaghetti?”  As you can imagine these words of love and admiration motivated Brenda to show her love and respect for me.  She said, “You are wrong!  Chili is a soup and it is supposed to be brothy!  Just because your mom made it that way doesn’t make it right.  You’re wrong and I’m right.”  In the matter of a few seconds we were in a tailspin which later I learned was called “The Crazy Cycle.”

I wish I could say that the rest of our arguments have all been as silly as our chili challenge.  We have had seasons in our marriage where we were caught in the jaws of the Crazy Cycle.  Brenda has gone to bed feeling unloved and I have turned my back to her feeling disrespected.  The more she felt unloved, the more she did not respect me.  And the more I felt disrespected, the less I loved her.  This, my friends, is the Crazy Cycle.  Thankfully we have learned a few things over the past thirty three years and have worked hard to interrupt the Crazy Cycle when it begins.  Here are a few truths that have helped us have a great marriage from a book called Love and Respect by Dr. Emeron Eggerichs.

  • Men and woman were created differently.  Brenda’s primary need is to feel loved.  She was created to love, want love, and expect love.  My primary need is to feel respected.  I was created to want and expect respect.  Yes, both of us need to feel love and respect, but our primary needs are different.
  • When I withhold love from Brenda, it is very difficult for her to respect me.  When she withholds respect from me, it is very difficult for me to love her.  Our natural response is to fight back to get that which we desperately need and crave.  Without love from me, she reacts without respect; without respect from her, I react without love.  This is how the Crazy Cycle begins.
  • My love for Brenda should not be dependent on whether she respects me.  Brenda’s respect for me should not be not dependent on how I love her.  They are both to be unconditional.  This is the only way to break the Crazy Cycle.  If we continue to withhold love when disrespected or respect when unloved, we will forever be on the Crazy Cycle.
  • I have learned that Brenda wants me to honor her and cherish her, not to try and fix her, but listen to her and be willing to say sorry when I have messed up.  Brenda has learned that I  want her to appreciate my desire to protect and provide for her, to serve and lead her, and to appreciate my desire to work and achieve.
  • We have learned to quickly identify when we are on the Crazy Cycle and to remind each other that we are on the same team.  We love each other, are for each other, and often need to ask each other for forgiveness!

Next week I want to talk about the importance of offering and accepting forgiveness.  It is critical for every relationship you are in, especially your marriage.

Warren

PS: Here is a link to the book Love and Respect.

PSS: If you look in our recipe box, you will find chili under the soup section!  We still use celery and serve it over spaghetti, but have added a few more cans of beans and meat with a few more teaspoons of chili power.  We call it BellPfohl Chili.  It is one of our favorite soups!


Marriage: Overcoming The Challenges

I miss many things about being a pastor, but one of the greatest things I miss is participating in a couple’s wedding ceremony.  Months and months of planning and dreaming and hoping have finally come together.  The cake has been made, the guests selected and invited, the church reserved, the honeymoon planned and greatly anticipated, the wedding vows agreed upon, the music for the first dance chosen and danced to a hundred times, and the all very important decision of who sits next to Uncle Willard at the reception has been decided.  It is now time to get married!

As the ceremony comes to an end I make the following proclamation:

“Because you have vowed your love before God and those gathered here today, having pledged your commitment to each other as now symbolized by the rings you have exchanged, I now pronounce you husband and wife.  You may now kiss your bride!”

In that moment a miracle takes place.  Something that didn’t exist now exists.  Two wonderful, imperfect, oftentime a little naïve people say “I do” and a marriage is created.  I get shivers up my spine just writing about that beautiful moment.  The rest of the evening is spent celebrating this commitment of love by laughing and dancing and toasting and eating and drinking.

Now the real work begins.  While marriage is a wonderful and beautiful thing, it is also requires, in fact demands, hard work and commitment.  Near the beginning of most wedding messages I perform I will say something like this: “Marriage is a lot like using chop sticks or riding a bike or doing a handspring.  It looks easy until you try it.”  It takes practice.  It requires patience.  It always hopes and perseveres through both the good and the bad.  It will often require asking for forgiveness and extending the same to your spouse.  Marriage is a commitment to stay in love with the person you marry, even when it is a struggle.  Someone once wrote,

“A successful marriage requires falling in love many times, always with the same person.”

I have been married to my bride now for 33 years and I am still in love with her.  In those 33 years we have had many opportunities and seasons to fall in love with each other all over again.   We found this to be especially true as we cared for our son, David.  While marriage requires hard work for anyone who is married, it is especially true for parents who are raising and caring for a child with special needs or struggling with a life threatening medical condition.

I read a great blog a few days ago that asked the following question to parents of children who have a disability: “What is one thing you feel is the biggest challenge in marriage?”  I am going to list the answers they gave and at the end give you the link to the blog.  For each of the challenges the author lists some tips and resources to help overcome that challenge.

Common Challenges Faced By Parents of Special Needs Children

  • Different Parenting Styles
  • Lack of Privacy
  • No time alone or date night
  • Lack of Intimacy
  • Lack of energy
  • Balancing Life
  • Communication
  • Not having people who provide respite
  • Lack of sleep
  • Lack of family support
  • Finances

I hope you take the time to read the whole blog.  You can find it at https://themighty.com/2017/10/marriage-parenting-disabilities-support/

Would you add anything else to this list?  Do you have any other tips or resources you could share with all of us?

Next week I want to talk about “The Crazy Cycle.”  It’s something every married couple has experienced and needs to understand.


Asa Rowan Pfohl

I would like to introduce you to my new grandson, Asa Rowan Pfohl!  Asa and his mommy and daddy will be home in about an hour.  His brothers, Ezra and Levi, can’t wait for his arrival.  Nonnie and Poppie are a little tired but happy to be here to help and to celebrate Chris and Britt’s third son.

I love Asa’s name.  Asa was the third King of the Kingdom of Judah.  In the Old Testament this was written about Asa:

Asa did what was right in the eyes of the Lord, as his father David had done…Asa’s heart was fully committed to the Lord all his life.  1 Kings 15:11,14

This, of course, is my prayer for all my grandchildren.  My prayer for Asa is as follows:

Father, thank you for the gift of Asa Rowan.  May he always do what is right in your eyes and please you.  May he always be fully committed to you all his life.  Amen