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my three sons

My Three Boys!

“How many children do you have?”  It’s a question I ask often as I meet new friends here in Florida, and it’s a question that is often asked of me.  On one hand it is a very simple question to answer.  We have three boys: Christopher, David, and Daniel.  But here is where it gets difficult.  What do I say if they ask, “What are they all doing now?”  Do I say, “Well, Chris is married and has two boys, Daniel is married and finishing up his Bachelors of Arts, and David died seven years ago and is hanging out with Jesus in heaven?”  I know when they hear that my son died they are going to immediately feel sorry for me and most likely a little uncomfortable.  They want to say something appropriate but fear saying something stupid, so the conversation stops or is redirected to who I think is going to win the NCAA Tournament.  As I stand there in that pregnant pause of silence I wonder if I should have simply said, “My two boys are both married to two beautiful woman and we are so proud of them.”  Sadly, when I chose to  exclude the reality of David and his death so others don’t feel uncomfortable, I am once again isolated and alone to grieve the loss of his beautiful presence in our lives.  They miss out and I miss out.  I say all this to prove the point that most of us are horrible at grieving.

A few weeks ago I watched a wonderful five minute video called “The Power of Wearing Your Pain” by Bridget Foley, a woman who lost a child.  My favorite part of the video was her “Wet Chair Wet Pants Method of Grief Sharing.”  She paints the following scenario:  You are out on a walk and your favorite elderly neighbor ask you to join her on her porch to sit down for a few minutes.  As you are about to sit down you realize that the chair is wet.  You know if you ask her for something to dry it off you will embarrass her or make her feel uncomfortable.  She’s elderly, her dog is sitting in her lap, and you don’t want to be a bother.  So what do you do?  Do you just sit in the chair and get wet pants?  Or do you make your neighbor a little uncomfortable to spare yourself a greater discomfort?

You see, a wet chair is a choice a grieving person encounters when they have to decide to either say something that reminds others of the reality of death or to simply choose to remain silent and sit with wet pants.  After seven years I have to say I am tired of wet pants!  The more I am willing to allow others to feel a little uncomfortable, the less I feel alone, the more I heal by sharing David’s incredible story, and the more my story helps another grieving person know it is normal and survivable.

If you have a few minutes watch Bridget’s video, I would love to hear your thoughts.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

grief 2

I love and hate this quote on grief.

“Grief is not a disorder, a disease or a sign of weakness. It is an emotional, physical and spiritual necessity, the price you pay for love.  The only cure for grief is to grieve.”  Earl Grollman

I love it because it reminds me of how much I loved my son David, my mom and dad, my nephew Matt, and many others who have died and left me to ache the loss of their presence, their touch, their laughter, and friendship. I hate it because it reminds me of how much I miss and love my son David, my mom and dad, my nephew Matt, and many others who have died and left me to ache the loss of their presence, their touch, their laughter, and friendship. The price and cure for loving so deeply is to accept the reality of grief and to grieve.

Yesterday we got a letter from Sasha and Sarah Hallock, our dear friends and one of our host couples. They just moved to New York City to minister to college students with Cru.  They too have loved deeply and are now grieving. They wrote:

“Our biggest realization from the retreat is that we are grieving. We are grieving the loss of our home in Rochester, our friendships, our former staff team, our church and our proximity to family; but most of all, we realized we are grieving over Judah.  The transition has reopened our sense of loss and sadness surrounding his disability, care, and ongoing needs.”

As I read their letter I wept for them. Their letter was raw, transparent, and real. It was not a sign of weakness. It was the result of loving deeply. To be honest it sparked something deep in my soul and I once again found myself grieving for my son. It was as if a scar was opened once again. It was painful and so I grieved.

In talking with my brother-in-law about the loss of our sons, we have gone back and forth on trying to describe what grief is like. You would think after almost eight years of grieving David’s passing I would be able to describe it or define it better. The following is a blog I found that I think describes grief better than anything I have ever read or tried to explain.  You can find the post at https://travelswithmrnimble.blogspot.com/2014/02/one-of-best-descriptions-of-grief-ive.html

I wish I could say you get used to people dying. I never did. I don’t want to. It tears a hole through me whenever somebody I love dies, no matter the circumstances. But I don’t want it to “not matter”. I don’t want it to be something that just passes. My scars are a testament to the love and the relationship that I had for and with that person. And if the scar is deep, so was the love. So be it. Scars are a testament to life. Scars are a testament that I can love deeply and live deeply and be cut, or even gouged, and that I can heal and continue to live and continue to love. And the scar tissue is stronger than the original flesh ever was. Scars are a testament to life. Scars are only ugly to people who can’t see.

As for grief, you’ll find it comes in waves. When the ship is first wrecked, you’re drowning, with wreckage all around you. Everything floating around you reminds you of the beauty and the magnificence of the ship that was, and is no more. And all you can do is float. You find some piece of the wreckage and you hang on for a while. Maybe it’s some physical thing. Maybe it’s a happy memory or a photograph. Maybe it’s a person who is also floating. For a while, all you can do is float. Stay alive.

In the beginning, the waves are 100 feet tall and crash over you without mercy. They come 10 seconds apart and don’t even give you time to catch your breath. All you can do is hang on and float. After a while, maybe weeks, maybe months or years, you’ll find the waves are still 100 feet tall, but they come further apart. When they come, they still crash all over you and wipe you out. But in between, you can breathe, you can function. You never know what’s going to trigger the grief. It might be a song, a picture, a street intersection, the smell of a cup of coffee. It can be just about anything…and the wave comes crashing. But in between waves, there is life.

Somewhere down the line, and it’s different for everybody, you find that the waves are only 80 feet tall. Or 50 feet tall. And while they still come, they come further apart. You can see them coming. An anniversary, a birthday, or Christmas, or landing at O’Hare. You can see it coming, for the most part, and prepare yourself. And when it washes over you, you know that somehow you will, again, come out the other side. Soaking wet, sputtering, still hanging on to some tiny piece of the wreckage, but you’ll come out.

Take it from an old guy. The waves never stop coming, and somehow you don’t really want them to. But you learn that you’ll survive them. And other waves will come. And you’ll survive them too. If you’re lucky, you’ll have lots of scars from lots of loves. And lots of shipwrecks.”…G. Snow

If you know someone who is grieving, don’t be afraid to jump into the water with them as the waves are crashing over them to remind them they are not alone, that they are not weak, and remind them they have loved deeply.

 

Why Me?

Warren Pfohl Headshot.JPGLike many of you I have a morning routine that helps me enter into the day. I get up, grind my coffee beans and make the coffee. While the coffee is brewing, I put out my vitamins for the day and set out everything to make oatmeal later in the morning.  I pour and bring Brenda her cup of coffee, and then I settle into the couch upstairs or out on the lanai to check my email and to stalk all my friends on Facebook. Today as I opened up Facebook I found my picture staring back at me. My first thoughts was, “Wow! I am really going bald!” As I read on I realized Kate had posted the announcement that I am being honored at a Non Profit Awards ceremony for “Outstanding Board Leadership.” I wanted to share a couple thoughts about this honor.

 

  1. My first thought was, “Why me?” There are so many other incredible well run nonprofits and leaders in the Syracuse area that deserve this honor as much as I do. Much of what I have learned and put into practice has come from other leaders in the nonprofit world. In the early years of our development I stumbled along with the other board members learning from our successes and failures. I surrounded myself with men and women who are passionate, smart, and committed to our mission. Each of these individuals are worthy of this award as well.
  2. My second thought was, “I am grateful!” If this were the Academy Awards Ceremony I would be clutching my golden Oscar with tears running down my face thanking the following people:
    • God: His love for me, my family, our staff, and the families we serve motivates me to want to do the same. He took the brokenness of David’s disease and death and transformed it into the beauty of David’s Refuge. I will forever be grateful.
    • Brenda: Brenda is my wife and best friend. We share the title of Co-Founder for David’s Refuge. We labored and dreamed together to create a place of respite for other moms and dads just like us. No Brenda, No David’s Refuge and No award for “Outstanding Board Leadership.” Thank you Brenda.
    • Staff: Thank you Kate Houck, Rory Lawrence, Morgan Pipes, and Sarah Watson. You make our jobs as board members easy. I especially want to thank Kate for taking on the role of Executive Director and for her nomination of me for this award. I don’t think there is a more challenging role than becoming the Executive Director while the founder is still active in the organization. She did it with excellence and grace and beauty. Thank you!
    • Board of Directors: I am so thankful for the other six men and woman who serve on the board with me. Kent Gillis, Adam Mastroleo, and Donna Richards are founding members with me. Lizzette Donivan, Lori Mccrohan, and Amy D’Ambrogio have joined the board in the last year. Each of these incredible friends are also worthy of this award.
    • The Leading Element: Susan Burgess and Katie Doucette, both Executive coaches from the Leading Element have taught, encouraged, and supported David’s Refuge for the past several years.  Their insight and coaching helped our board grow into a cohesive well organized group.  Thank you Susan and Katie.
  3. My third and final thought was, “Who else will join me?” David’s Refuge is growing in leaps and bounds. The only way we are going to keep up with our current growth and maintain the same level of excellence is to grow our board. We are looking for people with skills and knowledge in finance and banking. We would love to find someone who is entrepreneurial and has had experience in the expansion or franchising of a business. It would be great to find business leaders in Rochester NY, moms and dads of children with special needs, social workers, and people skilled and comfortable in donor development. Do you know someone who might be a good fit? Maybe it’s you? Give me a call.

horrible-rotten-day

Have you ever had a day like Alexander’s, a Terrible, Horrible, No Good, Very Bad Day?  From the moment Alexander wakes up everything goes south.  He finds gum in his hair, he trips on his skateboard, there is no prize in his box of breakfast cereal, the dentist finds a cavity, the elevator door closes on his foot, he gets pushed into a mud puddle by Anthony and then gets punished by his mom for being muddy and fighting his brother, and to top it all off he has to eat lima beans for dinner.  All Alexander wants to do is move to Australia.

Your story may be a little different than Alexander’s, but it’s still counts as a Terrible, Horrible, No Good, Very Bad Day.  The kids didn’t sleep, the seizures won’t stop, your spouse or partner won’t communicate, the aide didn’t show up, the kids on the bus were mean, the teacher is bullying your child, the insurance company won’t pay for the new and desperately needed adaptive equipment, your request for extra support was denied at the last IEP meeting, and to top it all off you had to eat lima beans for dinner.  Right about now a move to Australia sounds just dandy.

Sadly, having a terrible, horrible, no good, very bad day is a part of living in a world that is comprised of both beauty and brokenness.  No one is exempt from it.  The question is how do you deal with it?  Do you run and hide and hope it will all go away?  Do you try to numb the pain with alcohol, drugs, or some other addiction?  Do you lash out at your husband or wife, blaming them for the deterioration of your marriage and the dream of the perfect family?  From personal experience I can tell you none of these are helpful or productive solutions.

As I look back and remember some of the worst, horrible, no good, very bad days we had caring for David, the only thing that held us together was our faith in a God who is always loving, always present, never limited in power, never changing, and not a bully.  Often it felt as if he wasn’t loving or present or powerful, but that was simply my feelings and not truth.  Almost daily I had to consciously place my hope in the one things that didn’t change and that was God who loved me, David, and my family.

Last week our good friend Shari Freyer stopped over and said, “You have to listen to this new song by MercyMe.  It makes me think of your story and of David.”  I hope you take a few minutes to listen to it and that it will help you if you are experiencing a Terrible, Horrible, No Good, Very Bad Day.  It is a lot cheaper than flying to Australia.  Praying for your ability to believe that God loves you extravagantly.

PS: If all this talk about lima beans has made you hungry, here is a link to an article in the NY Times entitled, “Who Says You Can’t Love Lima Beans.”  There are a couple great recipes you should try.   https://well.blogs.nytimes.com/2010/07/30/who-says-you-cant-love-lima-beans/?_r=0

 

Exhaustion

exaustion

ex·haus·tion

[iɡˈzôsCH(ə)n]

noun

  1. a state of extreme physical or mental fatigue.
  2. the action or state of using something up or of being used up completely
  3. drained of one’s physical or mental resources

PLEASE NOTE: THIS BLOG WAS WRITTEN IN A STATE OF EXHAUSTION

For the past five days Brenda and I have had the privilege and joy of caring for our two young grandchildren, Ezra and Levi.  Ezra is two and a half and Levi is one.  We fed them, played with them, changed them, sang to them, “Burger Kinged” them, read books to them, built snow men with them, napped them, chased them, hugged them, dressed them, disciplined them, shopped with them, chased them, bathed them, went to the YMCA with them, watched Finding Dory with them, held baby lambs with them, played in forts with them, snacked them, sang with them, howled at the moon with them, and put them to bed.  Simply put we are exhausted.

According to the dictionary exhaustion is the action or state of being used up completely.  For five days we poured everything we had into Ezra and Levi so they felt loved, cared for, protected, and hopefully had a wonderful time with Nonny and Poppy.  At the end of the day we had very little left in our gas tanks.  We would quickly pick up the play room, finish cleaning up the kitchen, brush out teeth, watch an episode of Madam Secretary, and go to bed praying the boys would sleep through the night.

More than once we were reminded of the many times we felt exhausted caring for David.  Near the end of his life David required total support and care.  There were many days we would lay our heads on our pillows after a very long day to then hear David cry out over the monitor because he was afraid or in pain or needed help.  We would drag our weary bones out of the bed to change him, care for him, and often lay with him.  Because we loved David so much, we emptied ourselves to a place of “being used up completely.”  This of course went on much longer than a five day adventure with Nonny and Poppy.

One of the reasons Brenda and I started David’s Refuge was to remind Moms and Dads that it is vital to care for themselves.  After years of being a caregiver, of emptying yourself for your child and family, and of having very little left in your own personal gas tank, you are prone to mental, social, spiritual, marital, and physical breakdown.  If you have been one of our guests you will often hear our hosts use the illustration of the oxygen mask that drops down in an airplane if there is a sudden drop in air pressure.  The flight attendant instructs you to put the mask on yourself first and then to place one on your child.  One of the greatest acts of love we can give our children, disabled or not, is to make sure we are caring for ourselves.  The less we care for ourselves, the more exhausted we feel, the harder it is to love and care for our children in the way we want to.

So what do you do if you are in a place of compassion fatigue or caregiver burnout?

  1. Recognize the signs of caregiver burnout
  • Anxiety and stress
  • Bitterness toward friends or family who do not help “as much as they could”
  • Change in appetite or sleep habits
  • Decrease in energy
  • Decrease in experiencing pleasure
  • Feeling depressed, helpless, hopeless, or trapped
  • Inability to concentrate or focus
  • Isolation from others
  • New feelings of incompetence and self-doubt
  • Over-reaction to small disturbances
  • Pervasive negative attitude
  • Procrastination (more than usual)
  • Profound exhaustion, tiredness (not relieved by sleep)
  • Taking out frustrations on others
  • Using food, drugs or alcohol to cope

2. Go see your doctor!  While you may be an expert on your child and their unique diagnosis, you are not your own personal medical physician.  They may be able to help you discover some ways to improve your health which in the long run will help you feel less exhausted.

3. Adopt healthy eating, exercise, and sleeping habits.  I know this is a lot easier to write in a blog than it is to actually make happen.  Here is a great recipe for Indian Style Spinach and Chickpeas: http://www.bonappetit.com/columns/cooking-without-recipes/article/indian-style-spinach-and-chickpeas

4. Sign up for David’s Refuge!  http://davidsrefuge.org/be-our-guest/apply-here/

5. Keep a sense of humor.

6. Set boundaries.  It is OK to say NO!  In fact just say it right now for practice, “NO!!”

7. Choose to believe you are not alone, what you do matters, and God loves you!

Do you have any tips, techniques, or strategies you use when you are exhausted?  Please share them with us.

PS: Here is a picture of Nonny and the boys holding a two day old lamb.  We love our boys so much.  Now I am going to go take a nap!!!!!!!!!!!

 

ezra-levi-nonnie

 

 

 

Will You Be Mine?

vows.jpg

For the past thirty three years I have had only one Valentine, my beautiful, wonderful, talented, godly, funny, artistic, kind, and generous best friend, Brenda Bell Pfohl.  We have lived in thirteen different homes, two countries, had three wonderful sons, lost one, changed jobs four times, started David’s Refuge together, became grandparents and are now living in Florida looking for our next great adventure.  Through all these changes one thing has never changed; my love and commitment to my bride.  Thirty three years ago we stood in front of friends, family, and God on July 28th, 1984 at our wedding.  I held Brenda’s hand as she looked into my eyes and I said, “Brenda, by the will of God and the desire of my heart I choose you above all others to be my beloved wife.”  It was the best decision I have made in my fifty seven years of life.

Has it always been easy?  Not really.  We have had our ups and downs like most other couples.  We have fought, been selfish, unforgiving, petty, hurt, and demanding.  But we have also shared life, laughed, forgiven, communicated, worked hard, sought counsel, and loved.  Early on we were taught that love is not a feeling but a commitment.  I know there have been times I have done and said some stupid things that made Brenda feel unloved and not feel very loving towards me.  Thankfully she stood solid on the commitment we made to each other and before God.  I am hoping we are blessed with another thirty three years of life together.

In my past life as a pastor I had the privilege of performing many weddings.  In almost every one of them someone got up and read from 1 Corinthians 13, the famous love passage written by the apostle Paul.  In this brief passage are some great practical things we can do to love those around us.  Just a few days ago I read this passage from a modern translation called The Message at our Valentines Date Night dinner.  Here is what it says:

If I speak with human eloquence and angelic ecstasy but don’t love, I’m nothing but the creaking of a rusty gate. If I speak God’s Word with power, revealing all his mysteries and making everything plain as day, and if I have faith that says to a mountain, “Jump,” and it jumps, but I don’t love, I’m nothing. If I give everything I own to the poor and even go to the stake to be burned as a martyr, but I don’t love, I’ve gotten nowhere. So, no matter what I say, what I believe, and what I do, I’m bankrupt without love.

Love never gives up.
Love cares more for others than for self.
Love doesn’t want what it doesn’t have.
Love doesn’t strut,
Doesn’t have a swelled head,
Doesn’t force itself on others,
Isn’t always “me first,”
Doesn’t fly off the handle,
Doesn’t keep score of the sins of others,
Doesn’t revel when others grovel,
Takes pleasure in the flowering of truth,
Puts up with anything,
Trusts God always,
Always looks for the best,
Never looks back,
But keeps going to the end.
 Love never dies….

But for right now…we have three things to do to lead us toward that consummation: Trust steadily in God, hope unswervingly, love extravagantly. And the best of the three is love.

1 Corinthians 13 (The Message)

This is the kind of love I strive to have for Brenda, my children, my friends and neighbors.  I don’t always succeed but I am trying.

Here are a few things we learned about loving each other as we cared for David:

1. It’s OK to have fun!  Give yourself permission to enjoy each other and spend time alone. There is no reason to feel guilty.

2. It’s never going to happen unless you schedule it!  When was the last time you walked into the dentist with out a scheduled appointment to have your teeth cleaned.  Never!  The same is true for time together with your loved one.

3. It’s OK to ask for help to make it happen.  I believe you will be surprised to discover that there are people who want to help you but just don’t know how.

4. Make it a habit to appreciate each other.  Tell each other, “You’re doing a great job” every once in a while. Thank each other for acts of kindness, for working hard to support the family, for reading one more story.

5. Say I love you daily. Always remember, attention and affection for each other doesn’t have to be reserved for just date nights and special occasions like Valentine’s Day. A little extra effort on both sides can generate ongoing intimacy. A kiss goodnight, a gentle touch as you pass in the hall, a pat on the butt, a love message by e-mail or text. These little gestures can mean so much.

Now go tell someone you love them.  I’ll start….

i-love-you-brenda

 

god has not forgotten you.jpg

On Sunday I watched a video in our church that told the story of D’Brickashaw and Kirsten Ferguson.  D’Brickashaw played left tackle for the NY Jets.  Like many of us they started life out with the dream that they would get married, buy a house, have children and live happily ever after.  Sadly brokenness entered their life when they discovered their baby didn’t have a heart beat at their first ultrasound.  They were devastated.  They wept, sought counsel, and held to the belief that God still loved them.  Six months later they discovered they were pregnant again.  As you can imagine they were overwhelmed with joy.  The Fergusons were planning a trip to Israel and the doctors asked them to come in for an ultrasound before they went.  As the nurses rubbed the jelly on her belly and watched the screen, the room went quiet.  Their baby had died.  Kirsten and D’Brickashaw were overwhelmed with grief.  They were angry at God.  They felt abandoned.

I am sure there have been many times you too have felt abandoned by God.  As I watched the video I was brought back to several days in our journey of caring for David when I felt as if God has forgotten the Pfohl family.  It felt as if he went silent.  I went back to my first blog and found the following entry:

The silence of God is painful! We cry out in prayer, knowing He hears us, knowing he loves us….yet it feels as if He is standing far off, hiding his face, as we wrestle with a depth of sorrow we have never experienced before. It doesn’t make sense. It is raw… Sometimes for reasons beyond my imagination God remains silent. I hold David in my arms for hours on end as he cries, begging God for just a moment of rest and peace, but no reply. I plead that God would help the doctors discover the right combination of medicine to bring a peace and contentment to David’s life, but David still goes to bed yelling and crying every night. All I want is for David to not be in pain, yet my prayers seem to bounce back like an undeliverable piece of mail.  http://davidpfohl.blogspot.com/2009/10/silence-of-god.html

So here is what we did:

  1. We yelled at God.  We let him have it.  He is big enough and loving enough to let me speak honestly with him.  He can handle our anger.
  2. We talked with God.  After venting our sadness and anger and frustration we continued to hold to the truth that God loves us and wanted the best for David.
  3. We waited for God.  This was the tough one.  Most often he brought his comfort through those who loved us and through specific verses and promises we clung to from the bible

After Kirsten lost her second baby a woman came up to her as she was obviously hurting and spoke five simple words, “God has not forgotten you.”  “God has not forgotten you.”  And the same is true for all of us.  God has not forgotten you.  I think this is why early on Brenda and I made the decision to tell every guest who stayed with us that God loves them.  For if he loves us he surely has not forgotten us.  Maybe today you need to yell, talk, and wait for God.  While he may seem far off he isn’t.  Give it a try.

The following is a verse Kirsten helds to through their painful journey:

“For I will comfort those I love and will have compassion on the afflicted ones. I will not forget you! I have engraved you on the palms of my hands.”

Isaiah 49:13-16

If you want to see more of D’Brickashaw and Kirsten’s story here it is.

 

 

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