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HOSTS recycling experts

I want to introduce to you two good friends of mine, Jeff and Bitsy Namy.  Jeff and Bitsy have been volunteering with David’s Refuge for the past several years and have just joined our host team.  They are compassionate, selfless, and caring people who have been shaped and prepared to be excellent hosts by experiencing first hand the brokenness of the beautiful world we live in.

In 2006 their second son, Joel got very sick with bone Cancer.  He came home from West Point for treatment and beat it.  The next year he returned to West Point ready to play football again.  Unfortunately, a few months later, they discovered he had leukemia as a result of the bone cancer treatment.  He was given a bone marrow transplant but sadly died 82 days after the transplant.

As you can imagine this was devastating for Jeff and Bitsy and Joel’s three other siblings.  They grieved, they struggled to understand how they would go on, and they wrestled with the goodness of God.  Everyday they woke up they had a choice to make: will they allow this brokenness to cause them to be become bitter and withdrawn, or would they somehow become better by recycling the care and love others had shown them as they walked through Joel’s sickness and passing?  While it took time, they chose to become better and now come alongside other families as hosts who understand first hand the difficulty of being a mom and dad whose child is sick or disabled.

Jeff and Bitsy, along with the other 23 couples who are hosts for David’s Refuge, are all recycling experts.  They have consciously transformed the tears and pain and frustration and sadness and sleepless nights and unfulfilled dreams that are a part of being the parent of a child with special needs into something beautiful.  They recycle the broken into acts of love and service to those who are still on the journey.  This is why I think David’s Refuge has been so successful.  I hope their example will motivate you to do the same.  Without a doubt they would all tell you that you are not alone, what you do matters, and that you are loved by God.

If you want to hear more of Jeff and Bitsy’s story, here is a video from the church they attend:

 

 

 

 

david as young boyTwenty years ago, just around this time of the year, our little boy David began to lose his vision.  Little did we know at that time both mom and dad has passed on to him a defective gene that would slowly rob him of life.  On October 22nd, 2009 David’s battle with Batten Disease came to end.  Exhausted from fighting an unbeatable foe, surrounded by his mom and dad and two brothers, David took his last breath and left this world for a better one.  No more blindness, no more seizures, no more wheelchairs, no more diapers, no more medications, no more inability to communicate his feelings or ideas.  He was now free.

When David was alive we often struggled with an overwhelming sense of hopelessness knowing we were fighting an unbeatable foe.  I can remember hearing the words from Dr. Wisnewski, “Your son has Neuronal Ceroid Lipofuscinosis.  It is untreatable and fatal.”  In her brief message she handed us  David’s death certificate all filled out except for the date of his death.  Every loss David experienced was a painful reminder of this horrifying reality.

Though out the years we would read of new research studies that were using mice or dachshunds to study the disease.  They could replicate the genetic abnormality in these animal models giving them an effective way to study how the disease affected the brain.  Sadly, I still struggled having hope they would find a cure.  We read of enzyme replacement studies and stem cell research.  And while I wanted to believe there would one day be a cure, I have to honestly say I still struggled having hope there would be.  Wanting to believe and have hope, we financially supported the Batten Disease Support and Research Association knowing that they were committed to finding a cure for this hellish disease.  Would there ever be a cure?

A week ago today I opened my email and found the following press release from the US Food and Drug Administration:

FDA Approves First Treatment For A Form Of Batten Disease

It states,

The U.S. Food and Drug Administration today approved Brineura (cerliponase alfa) as a treatment for a specific form of Batten disease. Brineura is the first FDA-approved treatment to slow loss of walking ability (ambulation) in symptomatic pediatric patients 3 years of age and older with late infantile neuronal ceroid lipofuscinosis type 2 (CLN2), also known as tripeptidyl peptidase-1 (TPP1) deficiency.

The impossible is now possible.  What once seemed hopeless is now filled with hope!

I’m not sure what you are struggling with today but my word of encouragement is to never give up being hopeful.  Never!  Sometimes we just have to be patient.

 

home 2Have you ever heard of the “Bonita Bay Shuffle?”  If you had to guess, what do you think it is?  If you guessed a new dance move Brenda and I are learning out on the dance floor, you would be wrong.  If you thought it was a new card game we play at the Community Center to try and win money from some of our new friends in Florida, you would be wrong.  If you guessed it was our new favorite Pandora light jazz song we listen to out on the patio while sipping a glass of wine, you would be wrong.

So what is it?  The “Bonita Bay Shuffle” is the observation that very often people move three times once they move into our community, Bonita Bay.  This normally happens over an extended period of time.  Not being normal, we just moved into our third house since coming to Florida.  I’m sure we just won an entry in the Guinness Book of World Records.

Once again we find ourselves with the daunting yet exciting task of turning the house we bought into our home.  I saw a description the other day of the word “home” that I really love.  It said, “Home is a vessel that holds memories.”  Every event, both good and bad, transforms your house into your home.  A meal shared around the table, both laughter and tears, bedtime stories with little ones, the phone call from someone telling you your loved one has passed, and friends sitting out on the porch sipping coffee while eating a slice of pie all transform the four plaster walls of a house into a home.

A discovery we have made with our numerous moves is that memories can be transferred from one vessel to the next.  This means we don’t start with an empty vessel as we move into our new home on Riverbank Drive.  Here are a few of the memories out of the millions that we have transferred into our new home:

  1. Coming home with our first born son, Chris, wondering how would we ever be able to care for him.
  2. Carrying on the tradition of saying, “Good night, God bless you, I love you, Have sweet dreams, and I will see you in the morning” each night before we go to sleep.
  3. Our Polish neighbors giving us our first carp for Christmas Eve Dinner!
  4. Stringing popcorn and cranberries each Christmas season with new friends.
  5. The first day we realized David was beginning to lose his vision.
  6. The news that both Dan and Chris had found the young lady they wanted to spend the rest of their lives with.
  7. Sitting on our coach making phone calls to let people know David was now in heaven.
  8. Hosting our first couple in our home for David’s Refuge.
  9. Sitting in the hospital room with Dan as we waited for his arm to be reset.
  10. Holding our first grandchild in our arms.
  11. Eating a shrimp boil with family gathered around the table.
  12. Watching the sadness in my mother’s eyes when she was told it was no longer safe to cook alone in her own kitchen.
  13. Singing the Polish song “Sto lat! Sto lat! Niech zyje, zyje nam” as we celebrated numerous birthdays together.

We look forward to adding new memories to the ones we have already collected in the vessel we call our home.  Hopefully, some of them will be made up with memories made with you!  If you would like our new address, please private message me, call me, text me, or email me.  I promise you we have settled for a long time.

 

 

 

 

 

 

 

 

 

Grandsons!

ezra adn leviMy son and his family arrived yesterday for a week of vacation with Nonni and Poppi.  For the next seven days we will play with our grandsons at the beach, cook and eat together, read books, go for walks, and simply enjoy time together.   The time will go all too quickly.   Thankfully we know we will see them again very soon in both New York and Wisconsin.

As grandparents, our greatest desire is to be a positive influence for our grandchildren.  As they grow we want them to know beyond a shadow of a doubt that we love them, believe in them, support them, and are always there for them.  We have had to be creative and work hard to ensure this happens now that we live 1,400 miles apart.  Times together on vacation, phone calls, video chats, and the making of silly videos they can watch over and over again have helped us.  We are always looking for suggestions and other creative ideas, so please feel free to share them with us.

One of the greatest ways we can influence our grandchildren is to pray for them on a regular basis.  I am a believer in prayer.  So every morning Brenda and I pray for both Ezra and Levi.  Here is what we ask for:

  1. Their physical and emotional wellbeing
  2. Their mommy and daddy and their marriage
  3. Their future wife and her parents
  4. Their ability to find good friends
  5. Their ability to understand how much God loves them and is always with them
  6. That they would trust in Jesus
  7. That they would be protected from the brokenness of this world
  8. That they would discover their unique talents and abilities and become men of influence

So I end with a prayer for my two wonderful grandsons:

Dear God, please use me to influence Ezra and Levi to know you better.  Protect them, love them, encourage them, and remind them that you are always with them.  May their home be filled with laughter and joy.  Please give mommy and daddy an extra measure of grace and love to deal with the shaping of their strong wills.  Use these two little boys to change the world we live in.  Amen!

Happy Easter!

empty_tomb

(WARNING: Warren has his “Pastor” hat on today!)

As many of you know I was a pastor for 15 years.  I taught, counseled, married, buried, baptized, prayed,  encouraged, and helped people who were far from God draw closer to him.  I loved my job and at times really miss it.  From time to time I would be asked, “Do you really believe in all this God stuff?”  I was never offended by the question because let’s be honest, I have never seen God with my eyes, I have never heard his audible voice, and frankly some of the stories you read about in the Bible are hard to understand and believe.  So when I am asked that question I often give them a very short answer, “The tomb was empty!”  Three days after being brutally tortured and killed, Jesus came alive just as he promised he would.  It is a historical fact that changed the world.  History was split in two.  Every time we write a date on a letter or a check, we use the resurrection of Jesus as a focal point.  Not only did it change the world, but it also changed my life as well.

You see if Jesus didn’t really rise from the dead, then everything I have believed and taught for the past four decades is a lie and a farce.  The Apostle Paul put it this way in 1 Corinthians 15:

And if there is no resurrection of the dead, then Christ has not been raised. 17 And if Christ has not been raised, then your faith is useless and you are still guilty of your sins. 18 In that case, all who have died believing in Christ are lost! 19 And if our hope in Christ is only for this life, we are more to be pitied than anyone in the world. 

So do I really believe in all this God stuff?  Yes I do!  The tomb was empty.

One of the reasons I love Easter so much is that it reminds me that I can count on and believe in the things Jesus taught and modeled though his brief 33 years of life.  If he predicted his death and that he would rise three days later, then I have confidence to believe and trust in his other teachings.  When it says Jesus came to love and not condemn, I believe it!  When he says my sins can be forgiven, I believe it.  When he says nothing will ever make him stop loving me, I believe it.  When he says I understand when you feel abandoned and alone and rejected because I walked this earth as a human being, I believe it.  When he says there is life beyond this world that we live on that is devoid of all tears and brokenness, I believe it.

Personally, Easter is a reminder for me that I will see David, my mom and dad, my nephew Matt, and many others once again.  For you see, the tomb was empty!

Have you see the movie that just came out, The Case for Christ?  It is based on the true story of an investigative reporter who set out to disprove his wife’s beliefs and rescue her from the cult of Christianity.  In the process he discovered that the tomb really was empty.  Go check it out!  You can watch the trailer here:

date night questions

Last week I spent a few days in New York visiting family and catching up on some David’s Refuge business.  Before leaving I hid a note for Brenda to discover.  The note was short.  It simply said,

“I love you!  When you find this note email me with three reason why you still love me.”

Even though we have been married for almost 33 years, I felt like a school boy waiting to hear how my girlfriend was going to reply to the note I stuck in her textbook.  Two days later I got the following reply:

 3 Reasons why I still am in love with you:

1.   You unselfishly care for me (help with meals, cleaning up, bills, etc.)
2.   You are a wise counselor, filled with insight and able to see through the muck to the real issues.
3.   You listen well.
4.   You love me unconditionally…in spite of my weaknesses.
5.   You are very funny…you make me laugh (and others too!)
6.   You love people.
7.   You are ministry minded and desire to serve God with passion.
8.   You encourage me to be all I can be and explore new things.
9.   You are handsome!
10.  You are disciplined.
11.  You strive to take good care of your body.
12.  We are a team and you view our relationship in that way.
13.  You are a servant, always willing to help others.
14.  You are a great father to our boys.
15.  You are an amazing grandpa to Ezra and Levi.
16.  You are a talented writer.
17.  You are a great speaker.
18.  You are confident in who you are as a person.
19.  You are compassionate towards others; incredible with those who are hurting or sick.
20.  You like to spend time with me!
21.  You love to cook and create amazing meals.
22.  You are creative…more than you realize.
23.  You are thoughtful…writing me cute notes and hiding them!
24.  You are a hard worker.
25.  You love the Lord and listen to Him.
26.  You are a great preacher and teacher.
27.  You are an encourager.
28.  You are fun to be with.
29.  You learn from your mistakes or when you are corrected.
20.  You are great at picking up the house and bringing order to chaos.

I love you!  Have a great day!

To say I was blown away is an understatement.  When I called Brenda to thank her, I asked her why she sent twenty when I only asked for three.  She said once she got started, she couldn’t stop; they just kept coming!  My note was a great reminder of how we often simply forget to express to one another why we are still together and why we love each other.  We both agreed how easy it to let a day go by without saying I love you to the people we love the most.

I read one study that interviewed 2,071 couples looking at the impact of regularly saying “I love you” to your spouse or partner.  Sadly, they discovered the longer people stayed together, the less they say I love you.  They found just 50 percent of respondents who have been in relationships for two to five years still tell their partner “I love you” every day.  Sadly, of those who were still together more than 10 years, only 33 percent still said “I love you” every day.  Incredibly, that number went all the way down to 18 percent for those who had been together for more than 50 years.  When I read these statistics it broke my heart.  I wonder how many relationships could return to the initial affection and attraction that brought them together by simply beginning to say on a daily basis, “I LOVE YOU!”

When a couple checks into their weekend for David’s Refuge, they often come exhausted and weary from the demands of being the mommy and daddy of a child with special needs.  In the busyness of life and the extra load these folks bear, very often their marriage relationship is bruised and battered.   Often these folks need a little encouragement to remind each other why they love each other and are committed to staying together.  A few months ago we started to include the five questions at the beginning of this blog.  It was our hope that it would spark the flame that brought them together in the first place.  Maybe we should simply add the question, “What made your first love me?”  How would you answer that question?

Who in your life needs to hear the words, “I love you?”  Whether you are married or not, there are people in your life who need to be reminded that they are loved by you.  Tell them!  Right now!  Call them, email them, text them.  Tell them “I love you.”

 

matt schmidt

It is hard to believe that this Friday will mark one year since my nephew Matt Schmidt died in a car accident on his way to begin training as a missionary with Youth with a Mission.  In the blink of an eye his family and friends lives were turned upside down.  The empty chair at Christmas, the birthday uncelebrated, the pictures on the walls and desk that don’t change with time, and the absence of his contagious mischievous laughter remind us that Matt is no longer with us.  At times the grief has been crippling.  The intensity of the grief is simply a reminder of how much he was loved.

The following description of Matt comes from his obituary;

Everyone who had the pleasure to meet Matt during his short life knew he had a big heart. He was always there for anyone at any time, and was quick to give them everything he had. During his life, he was one to always give, and never to take. Matt radiated kindness wherever he went, having the ability to step in and help in any situation. As his final act of kindness here on Earth, Matt donated his organs so that 6 people could continue life on Earth and many more will benefit while his soul lives on in Heaven with his favorite cousin and partner in crime, David.

Over the past year I have wondered numerous times what Matt and David are doing together in heaven.  I don’t think there is much crime there so I am sure they have both had to look for some other type of employment.  I am sure that no matter what they are doing that they are still both serving and loving everyone they come in contact with.

I had the incredible privilege of speaking at Matt’s funeral.  As I was thinking about the way Matt loved and served others, it reminded me of a passage in the Gospel of Matthew where Jesus tells a story about those who he will accept into his kingdom.  It says,

“Then the King will say to those on his right, ‘Enter, you who are blessed by my Father! Take what’s coming to you in this kingdom. It’s been ready for you since the world’s foundation. And here’s why:

I was hungry and you fed me, I was thirsty and you gave me a drink, I was homeless and you gave me a room, I was shivering and you gave me clothes, I was sick and you stopped to visit, I was in prison and you came to me.’

“Then those ‘sheep’ are going to say, ‘Master, what are you talking about? When did we ever see you hungry and feed you, thirsty and give you a drink? And when did we ever see you sick or in prison and come to you?’ Then the King will say, ‘I’m telling the solemn truth: Whenever you did one of these things to someone overlooked or ignored, that was me—you did it to me.’”     Matthew 25:34-40

I could hear Matt asking Jesus the same thing?  When did I ever do any of these things for you?  When did I clothe you, feed you, or give you a drink?  And Jesus would say to Matt, “Every time you took time to guide and walk with David, that was me.  Every time you paid for another person’s meal so you could spend time with them, you did it to me.  Every time you called your cousin to simply say I love you or to encourage her to go to church on her own and then afterwards called her to tell her how proud you were, that was me, you did it to me.  Every time you laid aside your own schedule to spend time with your hurting friend or neighbor, that was me.  You did it to me.  And because you did this for me, I welcome you into my kingdom.”

Now Matt would be quick to tell us that it wasn’t because of the good works he did that got him into heaven; it was the result of his faith in Christ.  Matt in turn showed the world how Jesus had loved him by sharing that love with others.  I want to be more like Matt.

fingerprints.jpgAt Christmas Matt’s mom and dad gave everyone in the family a pendent or necklace that had a fingerprint of both Matt and David.  Every time I see them I am reminded of several things:

  1. While they are no longer physically present with us we will one day see them again.
  2. Both Matt and David left their mark, their print in this world.  They lived the dash between their birth and death well and the world is a better place because of them.
  3. I am still living the dash between my birth and death and want to leave my mark by loving and serving others.
  4. Matt and David were unique and beautiful masterpieces made in the image of God.
  5. Brenda and I and Karl and Karen are blessed and thankful for the privilege of being David and Matt’s parents.

I hope over the next couple days you will keep Karl, Karen, Andrew and Sarah in your prayers and thoughts.  I  know they would greatly appreciate it.

 

 

 

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