“Stop Telling Me To Take Care of Myself.”

 

When I saw the title of the article online I immediately told myself, “This is going to be a stupid article.”  I mean come on!  Every parent of a special needs or medically fragile child knows the importance of self care.  Put the oxygen mask on you first before you put it on your child.  Simple right?  It’s how you survive.  It’s how you press on.  It’s what breathes life into you so you can start all over again the next day.  So why would anyone say, “Stop telling me to take care of myself?”

I then read the article and was humbled and reminded that it isn’t always that easy.  Sometimes it seems impossible.  Do you go on a date with your husband or sit by your child’s hospital bed as they struggle to stop the seizures?  Let’s be honest, there is only one choice!  For over six years I have preached the importance of self care.  It’s what we built David’s Refuge for.  To breath life into parents and encourage them to develop a rhythm of respite into their daily lives.

So I need your help.  Would you please read the article Stop Telling Me To Take Care of Myself.  It is a short collection of reflections from parents who have felt criticized by their inability to “care for themselves.”  Once you read it, would you answer three questions for me?

  1.  Have you ever felt criticized by David’s Refuge as we have boldly proclaimed your need to care for yourself?
  2.  How can we better communicate and support a parent’s need to care for themselves with the numerous challenges already faced in your role as a caregiver?
  3.  How would you respond to a friend who says, “It is simply impossible for me to care for myself in our situation.?”

We are always striving to do what we do better.  Any thoughts or suggestions would be greatly appreciated.  There is no doubt it will help us as we continue to offer respite, resources, and support to moms and dads who desperately need to learn how to care for themselves.


Stop Believing The Lies

I hate lies. They are destructive and ugly. Studies show that a lie, even a little white lie, lowers your self-esteem, causes insecurity, destroys trust, messes with your sleep, isolates you, causes anxiety, impacts our friendships, and wears us out emotionally. Lies are always devastating and soul-crushing.

Sadly, I often hear moms and dads who are doing their best to love and raise their children with special needs entertain a number of soul-crushing and destructive lies. I know Brenda and I did. Here are a few we allowed to wreak havoc in our souls as we cared for David:

  • I am not enough!

  • I am a total screw up!

  • I am a horrible mother/father/husband/wife!

  • I am too weak to press on!

  • God doesn’t give a rip about me or my kids!

  • No body understands!

Unfortunately, this is only the tip of the iceberg! Which ones have you wrestled with? What are others not listed? I am sure you are not the only one who has struggled with it.

This week I was listening to a new song called “You Say” by Lauren Daigle. Lauren just won the New Artist of the Year award at the 49th annual GMA Dove Awards. Like many of us, she too struggles with believing she is enough. She wrestles with insecurity, rejection, and lies that tell her she is not good enough or worthy or lovable.

So, she wrote a song that reminded her of what God says is true about her. And what he says is true about her is true about each and every one of us. Here is what God says about you:

He loves you!

You are a person of value and beauty!

You are enough!

Don’t believe the lies!

You are not alone!

Even if you have messed up God still holds you!

I belong!

Take a few minutes to listen to Lauren’s song, You Say. Let it remind you of what is true so you can stop believing the lies. If you know someone who needs to be reminded of this, pass this blog on to them and remind them they are not alone, what they do matters and that they are loved by their community and by God!

 


Different But The Same

How many of you can remember passing the time in a doctor’s office by reading an old copy of Highlights for Children magazine?  One of my favorite pages was the spot the difference section.  It helped take my mind off the 22 inch needle I knew the nurse was going to stick in my tiny little arm once she called my name.  I would search and search until I could find every difference believing if I found all 24 differences before I heard the words, “Warren it’s your turn,” I wouldn’t have to get the shot.  Sadly, it never really worked out like that.

So let’s play a David’s Refuge Spot the Difference game.  The following is what we tell every parent whom we have the privilege to love and support.  We call them our values.  I am going to write it out twice.  See if you can find the difference:

David’s Refuge allows parents and other caregivers much needed time to rest, reflect, and recharge from the stress of full time care giving.  We want them to know three things: that they are not alone, what they do matters, and that God loves them.

David’s Refuge allows parents and other caregivers much needed time to rest, reflect, and recharge from the stress of full time care giving.  We want them to know three things: that they are not alone, what they do matters, and that God and their community loves them.

So how did you do?  What is the difference?  It’s three words.  We have added the words “and their community” to our final value.  We now say “and that God and their community loves them.”  Yes, we are saying something different, but in many ways it is still the same.  Let me explain why.

When Brenda and I started David’s Refuge, we wanted people to believe there is a God who loves them.  We remember doubting this when we first got David’s diagnosis and later as we watched him struggle with loss after loss.  Thankfully, our faith and the love and support of our friends, family, and church encouraged us to reexamine and once again believe in God’s incredible and matchless love for David and for us.  That belief enabled us to press on, one day at a time.  God was there to comfort us when we felt discouraged, to strengthen us when we felt weak, to encourage us when we had lost hope, to come alongside us when we felt alone, to give us wisdom when we lacked it, and to love us when we felt unlovable or undeserving of love.

But do you know what I discovered?  When I felt discouraged, God most often used a friend to comfort me.  He showed up in a phone call, a letter, or a hug from my brother.  Some days I would wake up exhausted and think, “How am I going to make it to the end of this day?”  God would show up disguised as someone from my church and ask what they could do to help.  Many days we felt isolated and alone.  We watched David’s friends struggle to know how to interact with him and we knew David felt alone.  But then God would show up in the form of David Wallace asking if David wanted to go for a ride on a tandem bike ride and get some ice cream at SnoTop.  Yes, God does like ice cream!

Do you see the pattern?  Very often God uses others to show us and remind us that we are loved by him.  When we say that God and your community loves you, we are really saying the same thing.  So if you are one of our volunteers, or a financial partner, or a host, or a staff member, or anyone who has helped us live our our mission by caring for the caregiver, thank you for allowing God to use you to remind our parents they are loved by Him.

 


Don’t Be Afraid Of Change

Quietly and tentatively she asked me, “Do you like it?”  I could hear the concern rumbling in her voice over the phone.  Without waiting for my response she asked a second question, “What do you think?”  Obviously she wanted to hear the words, “Wow, we love it!”  Her anxiety was fueled by her love and respect for us.  I paused for just two seconds and with total sincerity said, “Wow, we love the new branding of David’s Refuge!”

As many of you know David’s Refuge was selected by the ABC Creative Group in Syracuse, NY for a 24 hour Brand Bash.  This amazing group of people spent a full 24 hours working through the night to redesign our logo and our website.  They created an incredible video that professionally and inspirationally tells our story.  They produced some professional brochures, business cards, and other printed materials to use to help us share and live out our mission.  You can learn a little more by going to https://24hrbrandbash.com/

To be honest, we were a little afraid of what we were going to see.  As the founders of David’s Refuge we can remember creating our first logo and website.  We included a small frog that represented our home on Frogs Whisker Lane, the first B&B where families came for respite and love and support.  This of course was the same space where we cared for David until he passed away.  We printed out our business cards on our home computer and created our first letter head.  Brenda worked for hours on colors, fonts, and what photographs to use to create materials that spoke of serenity, love, and warmth.  And now, someone was going to change it all.  Would it still represent the David’s Refuge we started?  Would it be a step further from remembering our humble beginnings?  Yet despite those concerns, I was able to say with total sincerity, “Wow, we love the new branding of David’s Refuge!”

Change is always a part of something that grows and thrives.  If you are seeking to be the best, if you are not satisfied with the status quo, then change is inevitable, unescapable, and good for you.  But it is hard!  Change has been a part of David’s Refuge from its very inception.  For one year we ran David’s Refuge out of our home.  We now use Bed and Breakfasts to create a loving environment to run our mission.  We started by offering three nights of respite, but now we offer only two.  We used to offer one meal and a spa service, but now we pay for both meals and no spa service.  I was once the Executive Director, but now Kate Houck leads with passion, excellence, and drive.  So when I was asked, “Do you like it?” I was able to respond with confidence, “Wow, we love the new branding of David’s Refuge!”

Of course, the mission has not changed!  We still and will always exist to:

Provide respite, resources and support to parents and guardians of children with special needs or life threatening medical conditions where they will be refreshed, restored and renewed in their role as caregivers.

Our values as well have not changed.  David’s Refuge allows parents and other caregivers much needed time to rest, reflect and recharge from the stress of full time care giving. We want others to know three things: that they are not alone, what they do matters, and there is a God and community who loves them.

And so with confidence we affirm our wonderful and creative and passionate staff and their willingness to pursue change and not settle for the status quo!

With gratitude we thank ABC Creative Group for their sacrifice of time and talent to help us tell our story with excellence.

With love I affirm the incredible privilege it was to partner with Brenda to start David’s Refuge!

With humility we thank God for the joy of being David’s parents and the “divine assignment” of loving and caring for him!  From the ashes of our brokenness, God brought forth David’s Refuge.  Wow, we love the new branding of David’s Refuge.

 


Summer Fun


Poppy is tired! I’m sitting in the airport waiting to fly back to Green Bay, Wisconsin after a wonderful seven days in New York with my family. Over the past week we picked cherries, played in the sandbox, visited Uncle Dan and Aunt Katie in Rochester, swam in the pool, read a pile of books, hunted hufalumps, captured a hufalump egg, went hiking, painted, chased dinosaurs at the zoo, picked blueberries, eaten ice-cream at Snow Top, explored the Corn Hill Art Festival, went to a David’s Refuge picnic, snuggled, giggled and explored. Yes, I am tired. So today’s blog is simply a collage of some of the highlights. What have been the highlights of your summer? Share a picture! I would love to see them.

 

 


Happy 4th of July!

 

While he loved baseball  he loved being an American even more.  David couldn’t wait for the seventh inning stretch to arrive.  The moment Kate Smith belted out the words, “God bless America” David was on his feet with his right hand firmly planted over his heart.  He sang with gusto as if he had joined Kate in the middle of the Yankee stadium, joining with all of America to petition God to “Stand beside her and guide her,Through the night with a light from above.”  More than once I saw tears leak from the corner of his eyes as expressed his patriotism and love for his county.  He always had a front row seat at the 4th of July parade, waiving his flag and applauding the men and women in uniform who bravely fought for our freedom as Americans.  I miss his passion and love for our great county.

So on behalf of David, I wish you a Happy 4th of July!  May we never forget the great cost and sacrifice made by men and woman who loved our county like David did.  We are truly blessed to live in the land known as our “home sweet home.”

If you have a moment you can click on this link and listen to Kate sing God Bless America.  Listen real hard and you just may hear David harmonizing with Kate:  God Bless America!

 

 


Make A Memory

It almost feels like it was yesterday.  In my mind’s eye I can see my bride, Brenda, walking down the aisle, gorgeous, white dress, veil covering her face, her dad confidently walking by her side, moments away from entrusting her to me as her husband.  It is a memory I will never forget.

Twelve years later Brenda and I are huddled together in the kitchen of a friend in Wroclaw, Poland, both of us weeping as the reality of having to return to the United States due to Brenda’s failing health crushes us.  Our dream of serving and loving the Polish people we had grown to love dashed on the rocks of illness.  It is a memory I will never forget.

Two years after returning from Poland I turned 40.  As I walked into my home I was greeted by many of our good friends, all dressed to look as if they were in their late 80s, complete with gray hair, walkers and canes and suspenders.  They had gathered for my wake, Brenda’s creative way to celebrate my birthday.  No one would talk to me because I was dead!  It wasn’t until  Steve and Sue sang, “Poor Warren’s dead….” that everyone wished me a happy birthday.  It is a memory I will never forget.  I am still looking for a way to create a memory for Brenda she will never forget!  Any ideas?

I could fill this blog with many other special memories, both big and small that have made my life rich and beautiful and meaningful.  The marriage of both Chris and Dan to their incredibly beautiful and talented wives, the birth of our three grandchildren, the day we were giving the diagnosis of David’s disease, an ice cream cone with my two year old grandson, our first David’s Refuge guests ringing the door bell for our first weekend of respite, the police searching my basement for an intruder that turned out to be Barney throwing rocks at a chicken, and so many more.  Someone once wrote, ” A memory is a way of holding onto things you love, the things you are, and the things you never want to lose.”

What is it that made these events stick in my mind as opposed to the million other events I have no recollection of anymore?  Here are few things that I noticed.  They almost always occurred with people I love.  They were all mountain top or deep valley experiences.  They were unusual or novel.  Many were moments of great pride or celebration.  They often required me to get out of my comfort zone and try something new.  It often occurred when I worked with someone to create or enjoy something new and out of the ordinary.

In many ways these memories act like a glue that hold me and my family and friends together.  So I am all about making memories a priority in my life.  I have learned that if I want great memories I have to create them.  It takes initiative and effort.

So let me ask you, what is one of your favorite memories?  It doesn’t have to be something huge.  Brenda and I just planted a raised garden of beans together.  Everyday we weed the box and are waiting for the little plants to pop their heads out of the ground.  We are making a memory.  It is something novel for us, it is something we are doing together.  It’s something we are going to be able to share with others when they finally mature.  So what is a memory that you love?

If you are having a hard time coming up with one why not consciously try to make one?  Do something out of the ordinary.  Go to a restaurant you have never been to and don’t order the hamburger.  Order the escargot!  I promise you will have a memory.  And don’t go alone.  Invite someone to watch you eat the escargot.  They too will never forget the experience.  Plan a party!  For what?  Anything!  It’s Wednesday and the sun is out.  Throw an “It’s Wednesday and the sun is out” party.  Include friends and food and laughter.  All three are good for the soul and for making memories that last.  Sign up for a weekend of respite with David’s Refuge or one of our rhythm of respite events.  I can promise you that you will create a memory.

Share one of your memories with us.  It is a great way to remind us all that we are not alone, what we do matters, and that God loves us all.

 


Hijacked Again

 

“1988, that was the year I was born!”  Eight little words, a short sentence spoken with no malice and my heart and emotions were immediately hijacked.  Fighting back tears, I told the technician who came to fix a leak under my sink about my David who also was born in 1988.  I’m sure the young man was a little startled by my emotion.

The conversation started by him asking about the blue Yankee stadium chairs he saw as he entered our lanai.  David was a true Yankee fan.  Before he died one of our dear friends blessed us with a trip to New York to see the Yankees play.  They gave us tickets, a limo, a hotel, tickets to see The Lion King, and money to tip everyone generously.  It was a memory maker for the Pfohl family.  David died in 2009, the year the Yankees won the World Series.  One night after David’s funeral I was watching the Yankees play the Philadelphia Phillies, both teams battling for the championship, and the door bell rang.  The family who blessed us with our “Make a Wish” Yankee trip were standing there with two blue Yankee stadium chairs from the old stadium.  They said, “We are not staying, but we wanted you to have this as a way to remember David.”  We hugged, cried, and they left.  On each chair there is a brass plaque.  The first one says,

 

“The day God gave you David – November 2, 1988, The day God gave David eternity – October 22, 2009   Love, The Kunz Family”

As I read David’s birth date to the technician, he said, “1988, that was the year I was born!”  Standing before me was a young man who was the age of my son if he had lived.  He was married, had a child with one on the way, loved his family, was a great technician, and openly shared about his love for God.  I told Brenda later that I wanted to call him up and tell him I wanted to adopt him and his family.  My mind was running a million miles an hour wondering what David would have looked like, what he would have been doing, would he be married, would we have more grandchildren, where he would be living, and how he was changing the world.  I missed him.  I longed to hold him.  Once again I felt ripped off, a little angry.

Later that day I went to look at the Yankee chairs and reread the second plaque that says,

“I have fought the good fight, I have finished the race, I have kept the faith. 2 Timothy 4:7”

This was the verse my friend and pastor, Doug Bullock preached from at David’s funeral.  David lived his short life well with its many challenges.  David lived every day God had ordained for him.  Psalm 139:16 says, “Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.”  His faith, child-like yet deep, motivated us to keep trusting and believing in a good God when we struggled to do so.  I still miss him!  I still feel a little ripped off.  But I am thankful that David’s life and influence lives on.  

If you ever come to visit us in Florida, I hope you take a few minutes to sit in our blue Yankee stadium chairs and listen to a few stories about my son David who was born in 1988!

 


OUR NEW NORM

We have a new normal.  Here is what it looks like.

  • Sleeping in five different beds over the past 15 days
  • Waking up each morning having to orient yourself to which direction the bathroom is
  • Running through the airport like OJ Simpson to catch your next flight, only to have them close the door as you arrive at the gate
  • Six 1 ounce bags of pretzels and six 3 ounces mini glasses of Pepsi to meet your every hunger need as you fly from one city to the next
  • Sitting next to strangers from around the world all battling for the treasured 8 inches of arm rest that separates you from your neighbor
  • Missing friends from Florida as you reestablish friendships with friends in Wisconsin and New York
  • Waking up with little voices saying, “Poppie can you read me a book, play hide and seek, or just cuddle?”
  • Closing down one house and opening up another
  • Holding mail, forwarding mail, and losing mail

This is our new normal.  Often it is challenging.  It is always exciting.  It is not wrong.  It isn’t abnormal.  It is our new normal.  If I fight against it it crushes me.  When I embrace it and accept it, it no longer scares me or overwhelms me.  It becomes the norm.

I remember the first time we had to establish a “New Norm” as we cared for David.  At the age of eight, David began to lose his vision.  To be honest, we thought the world was coming to an end.  I remember thinking, how will we ever survive?  How will David read, walk, or enjoy life without his vision?  Well, guess what?  David learned to read braille, he continued to love playing outside with friends, and we survived.  We established our first new normal.  It was often challenging.  It was always exciting.  It wasn’t wrong.  It wan’t abnormal.  It had become our new normal.  Once we embraced it and accepted it, it no longer scared us or overwhelmed us so much.  It became our new normal.

Do you remember the first time you had to reset normal in your life?  What was it?  What helped you the most to help you establish your new normal?  Do you have any suggestions, ideas, or experiences that would help someone who may be facing their first “New Normal?”  I hope many of you will share something that just might help someone who is feeling alone and afraid.

PS: Don’t forget that normal is simply a setting on your dryer!


Celebrate, Party! It’s good for you

I love a great party!  People laughing, celebrating, eating and drinking, storytelling, dancing, and yelling with arms raised high as your team scores the winning touchdown.  Who doesn’t enjoy a good party?  In fact, I think we were created by God to excel at celebration.  He wants us to celebrate life, each other, events both big and small, little acts of kindness, success, and even sometime our failures.  Very often it is the brokenness in life that shapes us and forms us into a better version of ourselves than we could have ever imagined.

I was looking through my calendar and realized I have a lot to celebrate this year.

  • My grandson, Ezra, turns four years old, and Levi will turn three.
  • My youngest son is graduating from RIT with his BFA.
  • My father-in-law’s business, Belmark, is celebrating 40 years of success.
  • Eastern Hills Bible Church, where I pastored for 15 years, is celebrating 50 years of serving and loving the community.
  • Brenda and I will be celebrating 34 years of marriage in July.
  • My niece, Sarah, will be getting married to the man she loves in June, and I have the privilege of officiating their celebration.

But it’s not only the big things we should celebrate!  I started to think about some of the smaller things worthy of a party in my life.

  • I went to the dentist a few weeks ago, and I didn’t have a cavity!
  • Brenda and I had a little tiff but worked it out and reminded each other we love each other and are for each other.
  • We were flying to visit our family, and we got bumped to first class.
  • I lost my TV remote but found it stuck between the couch cushions.
  • It snowed in Syracuse on April 30th, but it was still 83 and sunny here in Bonita Springs, Florida.
  • We ran out of lettuce and had friends coming over for dinner, but my mother-in-law gave us what she had.
  • Our friends from Door County, Wisconsin believed us when we said we would love to have them come visit us in Florida, and they came!
  • These same friends sent me my favorite fresh roasted Papua New Guinee Organic Medium to Dark Roasted Coffee from Kick Ash Coffee. If you want to order some, simply click on the link!

What do you have to celebrate today?  I am positive there is something worthy of a party!  Did the diaper last all night long so you didn’t have to change the sheets in the morning?  It’s time to party!  Did your aide remember to tell you how well your child did at the park when they went for a walk and how someone came up and spent 10 minutes talking to your child?  It’s time to party!  Did your child get the job they have been praying for?  Send out some invitations!  Did you just get an email from David’s Refuge telling you when your next respite weekend is?  It is time to party!  Did the IEP meeting go better than expected?  Break open a bottle of wine!

I would love to party with you!  What can we celebrate with you?  Be bold and share something with us.