Every Now And Then You Have To Boast

Would you mind if I took a couple minutes to brag?  I know Mom always said no one likes a bragger.  Even the Good Book, the Bible, says, “Don’t brag about yourself—let others praise you.”  Proverbs 27:2  But I can’t help myself!  I feel like I’m going to explode if I don’t brag a little about David’s Refuge. 

Six years ago when Brenda and I started David’s Refuge, we wondered if anyone would actually sign up and come to our home for a weekend of respite.  We converted David’s wing into a beautiful Bed and Breakfast.  We formed a Board of Directors.  We applied for our not-for-profit status.  We reached out to our community for financial support.  And finally, we opened our doors wondering if anyone would come.  And they did!

In 2012 we served 43 families.  We were blown away.  Fast forward to 2018.  In the month of March we served 51 couples!  That is more than we served our whole first year.  In the first quarter of 2018 we served 98 families.  Now do you see why I had to brag?  I’m sure my mom would forgive me if she were still alive.  But I’m not done!  Let me list a few things I just have to brag about.

  • This year we have 261 weekend respite opportunities.  As of today 223 of those weekend respites have been booked!
  • We currently use 19 Bed and Breakfasts that love and support our mission of Caring for the Caregiver.
  • We now have 28 Host couples that make sure our parents know they are not alone, what they do matters, and they are loved by God.
  • Christine Corbett just joined our staff as the Director of Philanthropy, making our staff one of the most amazing nonprofit teams in all of Central New York.
  • Our Board of Directors is made up of a diverse and passionate group of leaders who are fully committed to the success of David’s Refuge.

I could go on but I think I may be pressing my luck with Mom’s words of encouragement to not boast!  I do want to say thank you to anyone reading this who has volunteered, prayed, financially supported, or encouraged us over the past six years.  Lives are being changed, marriages held together, and families supported because of you.  Thank you!

Warren and Brenda

PS: Proverbs 27:2 says, “Let others praise you.”  If there is something you want to boast or praise David’s Refuge for, feel free to leave a comment.  I promise you my Mom won’t mind!


Do Something.

I spent this past weekend searching for a missing boy with autism. I was notified early Saturday morning that volunteers were being requested to help search for a 14-year-old child who left school property after getting off the bus on Thursday morning. Due to an alarming number of systemic and human errors (to include multiple teachers actively and incorrectly marking Trevyan Rowe “present”) his mother was not notified of his absence. When it came time for Trevyan to get off the bus, he didn’t.

By the time the police were notified, Trevyan had already been missing and alone for 10 hours. Those early, crucial hours just after a child goes missing… they were wasted. Nobody was aware, so nobody responded, so nothing was done.

Hundreds of volunteers spent the weekend attempting to support the Rochester Police Department in their search for Trevyan.

It was a beautiful outpouring of unity and support. Still, after an extensive air, land and water search, Trevyan’s body was eventually discovered in the Genesee river on Sunday afternoon.

While anyone can sympathize with the horrific nightmare that this family has endured, many of us in the David’s Refuge community can also empathize. Many of us are intimately familiar with the fear and uncertainty that comes with parenting a child with unpredictable behaviors. On Wednesday evening, just one day before Trevyan wandered off school property, my son – who suffers from impulsivity, emotional instability and volatile behaviors as a result of Reactive Attachment Disorder – ran away for the first time. I am certainly not comparing the two experiences seeing as my son basically hid in the back yard until he “felt cold and realized he had no other place to go in this weather.” After hours of long and serious discussion, I tried to lighten the mood and joked with him saying “well, I guess we look forward to seeing what milder weather brings!” I look back at that moment now and I cringe at myself for attempting to bring some levity to a situation that could have ended the same way for my family as it has for Trevyan’s.

In the aftermath of this tragic and senseless loss, I can’t help but want to do something. I know that there is often nothing to be done after the loss of a child, but in this case… so much needs to be done. According to news reports, six 911 operators have been suspended for not following proper protocol after receiving several emergency calls that a child was seen crouching on a bridge and walking down the highway. Six. Six people who had the power to do something, did nothing. The erroneous attendance report… the lack of adequate supervision for a child with special needs to make it safely into the school building… this list goes on.

There is so much to be done at the systemic level, and it is very easy to feel overwhelmed by it all and to do nothing. But all of us can do better. We can more firmly advocate for our kids to have all the supports in place for their safety. People told us we would never get an aid for our son because he does “too well in school.” We fought and fought, and he now has a 1:1 aid during the unstructured times when he most struggles with impulsivity, including arrival and dismissal times. Sometimes doing better looks like not taking “no” for an answer.

I don’t know what it looks like for you to do something. Maybe it means you will be a better 911 operator. Maybe you will be more mindful of marking your classroom’s attendance correctly. Maybe you can be a better aid or monitor. Maybe you can join the search the next time the system fails a child. Maybe you can vote for better funding of public schools, or become a trained respite provider for a parent who is too exhausted to advocate for her child. Maybe you can be a more compassionate nurse, more loyal a friend, or a better counselor. Maybe doing better means that we resist the urge to lighten the mood during a conversation that needs to feel heavy. I don’t know what it looks like for you, but I know there is something we can all do better.

And in light of this boy’s senseless passing, I think we really must. 

This guest-post was written by Lara Capuano. To read more from her you can visit laracapuano.com or to hear her speak – register here.


The Story of David’s Refuge

I love telling the story of David’s Refuge.  It is a story of hope, a story of redemption, a story that reminds all of us that we are not alone and are loved by God.  It’s the story of a mom and dad who experienced the greatest fear of any parent, the loss of a child, but decided to not let it destroy them.  It’s a story that acknowledges both the beauty and the brokenness of the world we live in.  It’s a story that breathes life into moms and dads who simply need to unplug and be restored.  And while I admit I am biased, it is a story that is inspiring, motivating, and worthy of being shared.

Over the next several weeks I am going to share bits and pieces of our story of starting David’s Refuge.  Yesterday I was talking with a new friend from Milwaukee who wants to donate her services and time to David’s Refuge.  As I retold the story, I kept hearing this little voice in my own head that said, “This really is an amazing story!”  I don’t say that to boast or to make you think how wonderful Brenda and I are, but to acknowledge how God has taken our story, our dream, and allowed it to grow into something that is absolutely amazing and beautiful.  Our staff, our board of directors, our volunteers, and our financial partners have all made our dream a reality.  It is a story that reminds me everyday that David’s life counted.

Over the next few weeks I want to conclude each blog with some comments that parents have shared with us after being served and loved on by David’s Refuge.  Every time I read them it is a reminder that David’s story, our story, and now your story isn’t over!  One family wrote,

David’s Refuge truly holds families together.  The mission is “caring for the caregiver” but really you care for the whole family as a unit.  Through all the events you build unity and provide respite.  It is quite amazing the amount of supports and outlets you provide to create better outcomes for entire family unit.

Through David’s Refuge “typical” siblings are provided self esteem, normative experiences, and connection to other families living similar adversities, reminding us all that we are not alone and that who we are and what we do matters.

David’s Refuge has become a code word in our home for “STOP, BREATHE, LOVE.”  At least one goal on almost all paperwork (IFSP, Hab Plan, or IEP) for a child with special needs includes goals for healthy living, having daily needs met, and normative experiences with peers.  David’s Refuge reminds us that these should actually be goals for family as well as individual goals.


Marriage: Overcoming The Challenges

I miss many things about being a pastor, but one of the greatest things I miss is participating in a couple’s wedding ceremony.  Months and months of planning and dreaming and hoping have finally come together.  The cake has been made, the guests selected and invited, the church reserved, the honeymoon planned and greatly anticipated, the wedding vows agreed upon, the music for the first dance chosen and danced to a hundred times, and the all very important decision of who sits next to Uncle Willard at the reception has been decided.  It is now time to get married!

As the ceremony comes to an end I make the following proclamation:

“Because you have vowed your love before God and those gathered here today, having pledged your commitment to each other as now symbolized by the rings you have exchanged, I now pronounce you husband and wife.  You may now kiss your bride!”

In that moment a miracle takes place.  Something that didn’t exist now exists.  Two wonderful, imperfect, oftentime a little naïve people say “I do” and a marriage is created.  I get shivers up my spine just writing about that beautiful moment.  The rest of the evening is spent celebrating this commitment of love by laughing and dancing and toasting and eating and drinking.

Now the real work begins.  While marriage is a wonderful and beautiful thing, it is also requires, in fact demands, hard work and commitment.  Near the beginning of most wedding messages I perform I will say something like this: “Marriage is a lot like using chop sticks or riding a bike or doing a handspring.  It looks easy until you try it.”  It takes practice.  It requires patience.  It always hopes and perseveres through both the good and the bad.  It will often require asking for forgiveness and extending the same to your spouse.  Marriage is a commitment to stay in love with the person you marry, even when it is a struggle.  Someone once wrote,

“A successful marriage requires falling in love many times, always with the same person.”

I have been married to my bride now for 33 years and I am still in love with her.  In those 33 years we have had many opportunities and seasons to fall in love with each other all over again.   We found this to be especially true as we cared for our son, David.  While marriage requires hard work for anyone who is married, it is especially true for parents who are raising and caring for a child with special needs or struggling with a life threatening medical condition.

I read a great blog a few days ago that asked the following question to parents of children who have a disability: “What is one thing you feel is the biggest challenge in marriage?”  I am going to list the answers they gave and at the end give you the link to the blog.  For each of the challenges the author lists some tips and resources to help overcome that challenge.

Common Challenges Faced By Parents of Special Needs Children

  • Different Parenting Styles
  • Lack of Privacy
  • No time alone or date night
  • Lack of Intimacy
  • Lack of energy
  • Balancing Life
  • Communication
  • Not having people who provide respite
  • Lack of sleep
  • Lack of family support
  • Finances

I hope you take the time to read the whole blog.  You can find it at https://themighty.com/2017/10/marriage-parenting-disabilities-support/

Would you add anything else to this list?  Do you have any other tips or resources you could share with all of us?

Next week I want to talk about “The Crazy Cycle.”  It’s something every married couple has experienced and needs to understand.


Please Pray for Us!

I just got off the phone with our pastor in Bonita Springs, Florida.  He is kayaking around his neighborhood, his phone is about to die, there is no electricity, all the stores are closed, and he can’t find gas for his car.  I can only imagine how overwhelmed he feels.  While the storm has passed, and it could have been much worse, there are many who still need our help and prayers.

Thankfully, Brenda and I are safe and sound in New York with our family.  We have had neighbors tell us that there is no visible damage to our house but we don’t know if there was any roof damage or if water got into our home.  We sit glued to the TV watching report after report of loss and devastation.  We pray for our friends, we wonder how long it will take for life to return to “normal”, and we wrestle with a low grade anxiety in the pit of our stomachs that won’t go away.  We would appreciate your prayers.

I am going to keep today’s post short but wanted to share two things with you that hopefully will help you with whatever “hurricanes” you are experiencing. The first is a song Brenda and I have listened to over and over again called the Eye of the Storm by Ryan Stevenson.  The first line says,

In the eye of the storm You remain in control

The second is an editorial written by Max Lucado, an author, pastor, and man I greatly respect.   The three points he makes are very helpful no matter what storm we face.  I hope it is as helpful for you as it was for us.

http://www.foxnews.com/opinion/2017/08/31/max-lucado-what-harvey-teaches-us-as-christians.html

 


Just One Taste

Can you remember a time when someone said to you, “Just one taste!  I promise you’ll like it.”  Slowly they dip a fork into their concoction, twirling the bite size morsel into the sauce with all the bits and pieces.  As they raise the sample to your mouth, your nose is working like a basset hound trying to determine if you will like it or not.  While no one else can hear your thoughts, you are very aware of the voices saying, “Don’t eat it!” or “One bite and you will throw up on your friend!”  Wanting to be brave and not offend, you open your mouth and allow them to shove the food into your mouth.  For a few seconds all thoughts and sounds cease.  Slowly you you begin to chew and allow your taste buds to explore the spices and flavors of the “one taste.”  Without even knowing it, a thought enters your mind, “Hey, this isn’t bad!  In fact it is delicious!”  Our friend was right,  “Just one taste!  I promise you’ll like it.”

Over the past several years we have promised many parents, “Just one weekend!  We promise you will like it.”  Sadly, many parents will listen to the voice in their heads that says, “You don’t deserve a weekend away” or “There are others who deserve it more than we do.”  Very often we will hear moms and dads say, “We feel guilty taking time for ourselves.”  Some will say, “I don’t think my child will like it if we go away for a weekend.”  Money, lack of child care, and fear are other examples that we often hear.  Some will never overcome these reasons and register for a weekend of respite.  But for those who who are brave and willing to “taste” something new we often hear, “Hey, this isn’t bad!  In fact it is wonderful.”  All they had to do is try one taste.

This Friday we are hosting our fourth Taste of David’s Refuge event.  It is one of our premier fund raising events.  While its primary purpose is to allow us to raise funding so we can offer the gift of respite to our wonderful and amazing families, it is so much more.  Our hope is that those who attend and support our mission will experience and taste what we offer all our families.  Brenda and I want to say a huge thank you to every individual, family, and business that is supporting and/or coming to the event.  We hope you will leave refreshed and renewed and even more motivated to continue supporting David’s Refuge so we can continue to offer a taste of respite to those who really need it.

I am looking forward to introducing Jeff and Jennifer Rubin, our honorary Co-chairs, to those who are coming to this Friday’s celebration.   Jeff and Jennifer got a “Taste” of David’s Refuge as they watched the impact and stress of raising a child with special needs on one of their employees.  You will not want to miss how this one taste not only changed this families life but also theirs.


Dear David I Feel Helpless Today

One of the battles I struggled with as we cared for David was a sense of helplessness.  I couldn’t stop the disease from progressing, I couldn’t make David’s pain go away, and I often felt I was failing as a father.  A dad’s job is to protect their children from harm.  Sadly there was nothing I could do to protect David from the claws of Batten Disease.  I am grateful for my faith that would often remind me that while things feel and look like they are completely out of control, there is a God who is still in control.  He was my refuge when I had no where else to turn.

“Oh my people, trust in him at all times.  Pour out your heart to him, for God is our refuge.”  Psalm 62:8

Dear David,

Wow, what a rough two days.  In fact I would say they were the roughest we have had since you were diagnosed.  Dr. Mink thinks he went too high with your Triliptal and boy did it have a huge impact on you.  I don’t know if you remember, but you were in physical and emotional pain.  You were angry and constantly upset.  You didn’t know where you were.  You kept saying, “I just want to go home,” or “I want to go to jail.”  You didn’t know if you wanted to sit, lie down or walk.  You didn’t like it when people touched you.  It was horrible David.  Two nights ago it took you almost two hours to settle down and go to sleep.  Last night you slept well and today you seem much better.  David, I was so afraid for you and what else is before us.  I wanted to be brave, I didn’t want fear to overwhelm my faith in God, but it was too much.  I hated seeing Daniel and the emotional pain he was experiencing.  I hated knowing the struggle Brenda, your Momma, was experiencing, and there was nothing I could do about it.  I was helpless.  

I prayed for you.  I asked God to turn his attention to you.  I asked him to pour out his blessings on you.  I asked him to take away your pain.  And while I know God heard me, loves me, loved you, I still felt helpless.  I am still struggling with just feeling sad.  I can’t shake it.  I’m supposed to preach next weekend and I am a little concerned about my emotional state.

I miss your laughter David.  I miss your kidding around.  I miss seeing your smile.  I had a little peak into what it will be like in the future and I don’t like it.  David I chose today to acknowledge God is in control.  I claim and acknowledge that God is good and loving.  Well buddy, it is a quiet Saturday morning.  We have changed you a couple times already this morning.  Dan Edsall is coming to hang out with you.  I hope you have a good day.  I love you buddy.  Daddy

 


Alajuelita: Costa Rica

As you are sipping your coffee reading this blog Brenda and I are in Alajuelita, Costa Rica with our wonderful church, Turning Point Church on a short term mission trip.  We are joining with a local church, Iglesia, Cristiana Alajuelita, to help build a home for a wonderful family.  Karolina and her four children live in a rundown shack that has no floor.  We will pour cement, build walls, run wires and lights to show her the extravagant love of God.

Many of my friends have asked me why we chose to go on this trip with all the other things we already have on our plate.  Let me share a couple of them with you.

  1. Community: Brenda and I are still trying to get used to the fact that we are now “Floridians.”  We realize the best way to accomplish this is to begin building friendships and relationships with a new community of people.   A great way to do this is to join hands and serve others in need.   Here is a picture of the team we are going with.

 

  1. Service: We believe one of the greatest ways to serve Christ is to serve others in his name. There is a story in the New Testament where Jesus is commending a group of people for serving him faithfully.  He thanked them for feeding him and dressing him and giving him a cold glass of water when he was in need.  They asked him when did we do these things for you?   Look at what he says, “Whenever you did one of these things to someone overlooked or ignored, that was me—you did it to me.”  (The Message)  As we serve Karolina and her children we are serving Christ.
  1. Faith: Alajuelita is one of the poorest barrios in Costa Rica. Some of the neighborhoods are dangerous, water unsafe to drink, and of course there will be a significant language barrier.  We know we are going to be stretched as we will have to trust in God to accomplish what at times seems to be the impossible.  It is all too easy to let your faith grow old and stale.  I am sure our time in Alajuelita will help freshen things up a bit.
  1. Focus: Serving others who are in greater need then yourself is one of the best ways to keep your focus on what really matters.  I am sure there are some of you are growing weary of the ongoing saga of our moving, selling homes, building homes, and on and on it goes.  I know I am!   We are praying and hoping a week in Costa Rica will “reboot” our hearts and minds to keep focused on what it really important in life.

Please pray for our safety, for our effectiveness, and for Karolina and her family to see, feel, and experience the love of God!