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Archive for February, 2017

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

 

 

 

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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

 

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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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joy-and-sadness

Have you ever been really sad but at the same time filled with a sense of incredible joy?  It’s a really a strange feeling.  Yesterday an article in the Daily Orange  was published about David’s Refuge and our story of how and why we started it.  While reading it I was overwhelmed by a sudden rush of emotion and sadness as I was hijacked back to the days of David’s diagnosis, our thirteen years of caregiving, and then his death.  Tears began to leak out and my throat tightened as both good and bad memories flooded my mind.  But amazingly at the very same time I realized some of my tears were actually a result of the joy we have experienced through our journey as David’s mom and dad and also having had a front row seat as we have watched and participated in the formation of David’s Refuge.  Joy and sadness mingled together, resulting in the masterpiece called “Our life.”

As I look back over my life and especially over the past twenty years, I have discovered that joy is often a result of me making a conscious decision to find it and cultivate it in my life.  While there are times it happens spontaneously, it most often is found if we are willing to look for it, like a lost earring or set of car keys.  In yesterday’s article the writer captured the following quote as she was interviewing me.

“We had a choice to either become bitter or better,” Warren said. “We chose not to be bitter and to believe that God could take even the brokenness of your child’s loss of vision and loss of all physical ability, and to turn that around to be something good and beautiful.”

Very early on Brenda and I made a conscious decision to look for joy each day as we cared for David.  We did not want to become bitter but wanted instead to somehow allow this horrible painful sad experience to shape us into better people, parents, neighbors, friends, and followers of God.  There were days of course we failed miserably.  We groaned, cried, cursed, shook our fists at God, and hosted some of the greatest pity parties ever.  Those were horrible days.  But more often than not we rolled out of bed, put our feet on the cold floor, and consciously made the decision to look for the good in that day.  And do you know what we discovered?  Almost always joy mysteriously appeared right along side the sadness of watching David’s many losses.  I remember a very difficult day as we once again were overwhelmed and saddened by more loss and David’s cousin Matt called just to say “Hi” to David.  It was a brief conversation that mostly consisted of who is your girl friend now, fart jokes, and dare I say the word, boobs.  David laughed, we laughed, and Matt brought joy to the Pfohl family.

I hope today you would consider making a conscious decision to look for joy in the midst of your sadness.  I really believe you will find it if you look.

 

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