Archive for October, 2013

Please check out this blog written by a friend of mine, Kateri Allard.  She is a nurse and gives a very interesting perspective of caregiving from a nurse’s point of view.  It is worth your time reading it.



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happy david

Four years!  Some days it feels as if it never happened, others like it was just yesterday.  As a family we huddled together in the hospital room.  Waiting.  Praying.  Struggling.  We knew we were going to be saying good-bye very soon.  His breathing was irregular.  He no longer wanted food or water.  The meds kept him sedated so he couldn’t feel pain.  Sadly it also prevented us from knowing if he could hear us.  We spoke as if he could.  We sang songs, held hands, and told him he had fought the good fight.  At 3:30 in the morning on October 22nd David took his last shallow breath.   He left us and was greeted by his Savior.  His once blinded eyes were open.  His muddled mind was clear.  His broken body was healed.  It is indeed well with his soul!

If you have been to the cemetery where David was buried you will see the following words on the top of his tombstone:

What Ever My Lot Thou Has Taught Me To Say It Is Well With My Soul

tombstone 2

Today I want to say not only is it well for David, it is also well for Brenda and me.  David’s story lives on despite the fact that he died and is no longer with us.  Every day we get opportunities to share David’s story with families who are still on the journey of loving and caring for their children with special needs or struggling with a fatal disease.  We get to remind them that they are not alone, that what they do as parents is so important, and that God loves them.

We picture David applauding our efforts and encouraging us to press on.  Today as you remember David, allow his life and death to motive you to seek out ways to leave your mark on this world.  Who can you love today?  Who can you encourage?  How can you pay it forward?  We would love to hear how David’s life has motivated you today to make a difference.

It is well with our souls!

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it takes a villiageOne of the most common cries we hear from parents who come to David’s Refuge is an overwhelming feeling of isolation and loneliness.  Without fail when I tell our Moms and Dads we want them to leave knowing they are not alone, their eyes well up with tears and they begin to quietly weep.  It is a universal struggle for families raising children with special needs.

One of the things I love doing most as I get to know our guests is to share with them the number of people and businesses and foundations who have made their time at David’s Refuge possible.  I point out the candy from Kimberly’s, the flowers from Balloons and Blossoms, the gift baskets from Jacquie and David, the coffee from Kuerig, and on and on I could go.  And when I am done I say, “You see, you are not alone!  There are people and businesses and corporations who care.  All they needed was an opportunity to show you that you are not alone.”

A couple months ago I had the privilege of sharing David’s Refuge story with Bottar Leone, an attorney firm in Syracuse NY.  The Vice President of our Board of Directors works at this firm.  They had heard of David’s Refuge from some of their clients and were excited to hear more about who we are and what we do.  After a brief ten minute presentation and some Q&A we shook hands and they said they would give me a call.  Thirty minutes after getting home the phone rang and it was Adam, my Vice President.  He said the presentation went well.  They loved our mission and vision and wanted to be a part of serving our parents.  In fact, they loved us so much they said, “Your plan is to serve 100 families next year.  Each family gets $50 to go on a date.  We want to send every one of your families out on their date.”  They gave us a $5,000 gift!  Their gift allows us to remind our guests that they are not alone.

I wished I could share all the stories of how our community has gathered together to remind our parents that they are not alone.  In fact please take a minute and look at all the people who have partnered and collaborated with us to help drive home this important truth.  This list does not include our individual supporters.


Words can’t express the gratitude we have for everyone who has donated time, gifts, money, and services.  Thank you for being a part of our village!  Thank you for helping us drive home the message that our families are not alone.  You are making a difference!

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pay it forward

Today I experienced the power of generosity.  Brenda and I had lunch at Gordon-Biersch at Destiny USA in Syracuse.  We had a wonderful conversation with Matt Swanner, the General Manager, about David’s Refuge and how we could send our guests to his restaurant to enjoy a quiet meal and a tasty authentic German lager.  When our waitress came to us to give us the bill she told us that the meal was a gift from Matt.  With her few words and Matt’s act of kindness we experienced the power of generosity.  It was unexpected; it was an act of kindness; it breathed life into us.  We left smiling and feeling that someone cared for us.  Matt’s generosity was life giving.

Did you know that generosity begets generosity?  Research at the University of California verified that when a person extends generosity to another, it spurs that person to acts of generosity.  It creates a pay it forward effect of up to 3 degrees of separation. Every time you do one act of generosity to an individual it has the potential of reaching out and touching someone 3 levels away.  Last week I saw this video online that supports this truth in a very powerful and moving way.  Take a moment and check it out:


Brenda and I started David’s Refuge with the desire to “pay it forward”.  Through our thirteen years of caring for David we experienced generosity over and over again.   Howard and Liz allowed us to stay in their condo in Lake Placid…Make a Wish sent us on a cruise…Mom and Dad financed respite caregivers so we could take a break,…our church and friends sent us to Focus on the Family in Colorado for a week…David and Peg and their daughters sent us to New York City to see the Yankees play and to watch The Lion King.  Each act of kindness, each gesture of generosity reminded us that we were not alone, that what we did everyday in caring for David mattered, and that God loved us.  Every person who reached out to cook a meal, to sit with David and watch the Sound of Music for the 30th time, poured life into us.  And today their acts of kindness continue to touch lives as we pour life and love into our guests at David’s Refuge.

I went through our guest book and pulled out a few quotes from our guests as they mentioned the power of generosity:

“The kindness, generosity and love you show to everyone has restored something inside of us I thought I’d forever lost.  For that we will be forever grateful.”

Thank you so much for your generosity and for welcoming us to David’s Refuge.  It has been such a blessing to stay at this beautiful retreat.

Your hospitality and generosity were above and beyond.  This is the first time in a long time we could truly relax.  Thank you so much for your caring and generosity and thoughtful hospitality.  We feel so blessed to have been able to take a “time out” from our hectic lives and to reconnect with each other.

To those who support David’s Refuge, please realize that your generosity has made a significant difference in the lives of each parent that has stayed at David’s Refuge.  Thank you!!!!!!!!

Who can you be generous with today?  Pay it Forward!  And then come back to this blog and share what you did that it may spur us on to do the same.

PS: If you are wondering what to do for dinner call 315 478-0990 and make reservations at Gordon-Biersch


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Have you ever learned a new language?  Almost twenty years ago I learned to speak Polish while living in Wroclaw, Poland.  We learned by being totally immersed in the culture and in the language.  While it was painful and stressful at times we learned to speak Polish.

Once again I feel like I am back in Poland trying to learn a new language as David’s Refuge enters the world of social media.  Words like blogging, crowdfunding, crowdsourcing, Facebook, Flickr, hashtag, hosting, podcasting, RSS, SMS, social capital, tag, cloud, tweet, Twitter  Twitterverse, web analytics, widget, WordPress, and YouTube are circling through my mind and causing me to feel a little off balance.

Some of you are thinking, “Why waste your time telling people what you had for breakfast or reading someone’s report about how many fur balls their cat barfed up?”  That is a great question and a little hint that you may not really understand the power of social media.  Let me give you a few stats.  Did you know…

1 Billion people use Facebook?
800 Million use YouTube?
200 Million people use Twitter?
77 Million people use tumblr?
2.7 Billion searches are made on Google every month?
That the number of text messages sent everyday exceeds the total population of the world?
1 out of 8 couples that married last year met online?

Social media is influential, it is powerful, and it is here to stay!

Last month I hired Hill Communications to help us strategically enter the world of social media.  They are based out of Syracuse University’s Newhouse School of Public Communications.  Hill Communications is a student-run PR firm that has been at the forefront of providing individualized communications services for over a decade.  When I interviewed them I asked them how they could help David’s Refuge.  Here is a summary of their response.

  • Social media is a great way to promote an organization for free.
  • It can be used to network and grow a support base by sharing information that in turn others can share with their friends and followers, whereby casting a wider net.
  • Social media can spread not just the message of an organization, itself, but the overall message and cause. We can use social media to inform others about what it is like for caretakers who care for children with serious illnesses and share that information with people. This puts David’s Refuge into perspective for people who didn’t quite understand the cause or truly understand why it is so worthy to support.

I love the power social media gives us to share our story.  I have met people in Wisconsin, Texas, Iowa, and Virginia who share a passion to serve and love parents of children with special needs that I would have never met if it weren’t for being on Twitter and Facebook.

I would love to have you join us in sharing our story.  If you have a Twitter account go to @DavidsRefuge and follow us.  If you are on Facebook search for David’s Refuge and like us.  Share our story with your friends.  Retweet our tweets.  Follow my blog.  Share my blog with your friends.  This will allow us to serve more families.  This will allow us to discover people to join us as volunteers and supporters.  This will allow us to share the story of David and remind people that there are people and businesses and communities who care.

Join us and make a difference!

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