Archive for February, 2012

Today marks the fifth international Rare Disease Day.  It is a day that unites families, communities, and nations together with the common hope and belief that one day the disease that has touched their life or the life of someone they love would find a cure.  The theme this year is “Solidarity.”  It speaks of the importance and the need for collaboration and mutual support in the uphill battle of finding a cure in the field of rare diseases.

The disease that robbed our son of his life, Battens Disease, is classified as a rare disease.  It is one of 6,000 rare diseases that indiscriminately invades and ravages the life of the afflicted with most of these diseases having no cure.  As you can imagine one of the first things that is robbed from you is hope!  That is why solidarity is such a key and important word this year.

Having lived in Poland, Central Europe for six years, I saw firsthand the power solidarity has in offering hope in a hopeless situation.  Poland was controlled by a godless and evil empire.  Hope was nonexistent.  Yet on August 31, 1980 Solidarnosc (Solidarity) emerged in the Lenin Shipyards of Gdansk, Poland.  Lech Walesa and others formed an anti-Soviet social movement, uniting the Catholic Church, members of anti-soviet groups, and free trade unions, infusing hope and change and rebirth.  What seemed impossible became a possibility because people joined hands in solidarity.  We can do the same thing!

In looking for a good definition of solidarity I stumbled upon a definition from a 1913 dictionary.  It said,

“Solidarity signifies a fellowship in gain and loss, in honor and dishonor, in victory and defeat, a being, so to speak, all in the same boat.       –Trench.

I count it a privilege and honor to be in the same boat with many of you!  Lets never forget: We are not alone!  What we do matters!  And we are loved by God.

(If you want to know more about Rare Disease day you can check out their website.)


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I Love My Wife!

My Valentine!

Today I am writing to share with the world my love for my wife, Brenda Pfohl!  She has been my partner, wife, and best friend for close to 28 years.   We have walked together through both thick and thin.  We were blessed with the privilege of raising three wonderful boys who we love and are so proud of.  Our journey together included watching our second son, David; succumb to the ravages of Battens Disease.   As it robbed David of sight, cognition, and physical ability we clung to each other, often not knowing what to say or do.  Who would have known the words through sickness and health would be truly put to the test.  But we survived!  Yes, we were bruised.   But the bruises for the most part have healed and we are more connected and in love than we were the day we said, “I do.”

Now we have the joy of running David’s Refuge together.  Our experiences, gifts, passion for serving God and others, and abilities have all come together so that we have been perfectly prepared for this new adventure of loving on other moms and dads who are still walking where we once did.  I can’t even begin to express to you how blessed I am to have Brenda by my side as we work together.

Inside my wedding band is the inscription, “Song of Solomon 6:3a.”   It says, “I am my beloved’s and my beloved is mine.”  Today, on this Valentine’s Day I want to say that Brenda Pfohl is still my beloved!  I love you Brenda.

For those of you who are still struggling through the daily battles of raising a family, work, bills, doctors, IEPs, medications, sleepless nights, and the unknown, I encourage you to do all that you can to cling to your mate!  Maybe today you could simply whisper into your spouse’s ear, “I love you and am committed to making this marriage work.”  If you are interested jot me a quick note and I will tell you the names of a couple great books on marriage that might just help.

Don’t ever forget, You are not alone!  What you do really really matters!  And that on this Valentine’s Day, God loves you with an extravagant love.

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