Archive for August, 2013

divorceHow many of you remember reading in the child rearing text book you had to read before having children that they would add extra stress to your marriage?  I think it was on page 39 where it said,

“Please note that having children will increase the likelihood of added personal and marital stress, sleepless nights, and potential conflict between you and your spouse.  Please take this into consideration before taking this next step in your relationship.”

You don’t remember reading the book?  Well neither do I because it doesn’t exist!  You don’t have to read any books or take any tests to have a baby, unlike getting your drivers license.  But the warning is a good one to remember so that when conflict and stress come as a result of having children you don’t give up and think your marriage is over.

This is especially true when it comes to parents who are raising children with special needs.  Not only are they dealing with the challenges of a newborn who thinks the world revolves around them, night time feedings, diapers, short nights, and added financial burden, these folks are crushed by the reality of lost dreams, alienation, self blame, and guilt for having created a child that isn’t “perfect.”  They fear for their child’s future and are burdened with questions like:

  • “What will happen to my child when I die?
  • Who will care for them?”

Seizures, adaptive equipment, meds, doctor appointments, and therapy take every free minute they have and more, leaving them depleted, angry, and exhausted.  You are lucky if you have enough energy at the end of the day to say, “Good night” as you pass out on your pillow.

To be honest I don’t really know how many marriages end in divorce because of having a child with special needs.  Some say 80%, others 70%, some say there is no difference with the general population.  I have read that 96.4 % of these statistics are made up on the spot!  But I do know that caring for a child who is sick or disabled challenges any marriage.  Sadly many people just give up.

I was reading Dear Abby yesterday and one of her readers was sharing how his marriage ended due to some significant health issues their child had.  He wrote,

“Our lives were shattered at the time, but his health recovered.  After this my wife’s attention was drawn towards our son, and I found pleasure hanging out with our friends.  Our marriage became pretty robotic and loveless.  We separated last winter.”  She challenged him for giving up so quickly.  She wrote, “In life, you don’t get instant satisfaction.  In life, you get to slog.  You work.  You grow.  You take the long view.”

Brenda and I have a great marriage due to the fact that we have made a commitment to “slog” it out.  But in the early days of David’s diagnosis we struggled.  As we grieved, begged God for David’s healing, and flogged ourselves for what we may have done to have caused David’s disease, our marriage became stale.  I remember one night listening to Brenda sobbing in bed and I turned over, covered my head with my pillow, and tuned her out.  I had nothing for her.  I was spent.  We were growing apart.

We decided to get some counseling which was one of the smartest things we could have done.  We also read a book called Love and Respect by Dr. Emerson Eggerichslove and respectOne of the truths that really helped us was the challenge to remind ourselves that we are on the same team.  Each time we started to drift or have conflict one of us would say, “Hey, we are on the same team!  We are fighting for the same thing.”  Sometimes just saying this truth ended our conflict and allowed us to come together to care for David and our other two boys.

One of the greatest things you can do to better care for your child is to care for yourselves as parents.  If you are married find creative ways to keep the marriage fires burning.  Take the long view.  Slog it out.  Remind yourselves you are on the same team.  Be smart enough and bold enough to get some counseling.  If you want the names of some great counselors here in the Syracuse, NY area I can get them to you.  If you are already divorced I would still encourage you to get counseling.  The better you care for yourselves as a caregiver the better you will be able to care for your child.
If you are looking for some practical things you could do to make your marriage better check out this blog written by a man who got divorced after sixteen years of marriage.  This is advice he wished someone would have given him before he got married.  Pick one of them and give it a try.

Keep slogging it out!  I have read that 99.3% relationships will survive if you keep on slogging and never give up. 

Oh and by the way, before you put your head on your pillow roll over and remind your spouse, “We are on the same team.”


Read Full Post »

keep doin it

Thank you to everyone who stopped for a few minutes and joined me in thinking about David!  I hope you laughed and cried as hard as I did as you thought of the many ways David left his mark on this world and our lives.

David was not a quitter.  No matter what curve ball was thrown at him he swung with all his might.  When David lost his vision and could no longer ride his bike, he became Evel Knievel on the scooter.  When he ran into a parked car with his scooter, he took up hiking Candy Lane with his white cane, stopping to talk with and encourage every person he literally ran into!  Sure at times he griped and complained about how unfair life was and how he wished he could see, but when he was all done he embraced each of the gifts, blessings, and abilities God had given him and pursued life with a passion.

One of my favorite quotes from David is,

“I keep doing things I can’t; that’s how I get to do them.”

Our friend Donna Richards was David’s vision specialist.  She was David’s champion.  At times she was his teacher and at times he was her teacher.  She helped David believe there was nothing he couldn’t do.  All he had to do was keep doing it and what once seemed impossible became possible.

When learning Braille seemed impossible, he kept on trying and he learned to read Braille.  When he was afraid to hike a mountain or ride a motorcycle or try white water rafting, he keep on doing the things that seemed impossible and he did them.  Life is filled with tasks, responsibilities, and challenges that seem impossible.  Sometimes we have the energy to keep pressing on, but often we feel like quitting.  David would say, “Keep doing the thing you can’t; that’s how you get to do them.”  When your school won’t provide the services your child needs, keep on pressing on.  When your marriage seems crunchy or stale or broken, keep on doing the marriage thing and remind each other you are on the same team.  David wasn’t the only one who would encourage you to keep pressing on:

 “We would accomplish many more things if we did not think of them as impossible.” Vince Lombardi (GO PACKERS!)

“It always seems impossible until its done.” Nelson Mandela

“No one gets very far unless he accomplishes the impossible at least once a day.”  Elbert Hubbard

I’m not sure what you are facing that you think is impossible today but I hope you take the words of a wise young man and keep doing it until it happens.  Maybe you need to find a Donna in your life who can be your champion… someone who believes in you, someone who can be taught by you but you can also learn from them.  Maybe it’s a family member, or someone in your church or synagogue, or an aid that “gets it.”  Be bold and ask them, “Will you be my champion?”

Never give up!  Fight the good fight!  Don’t quit!  You can do it. 

Read Full Post »

Thinking about David


I’m often asked by our guests if it is hard to talk about David over and over again.  His life and death is an integral part of David’s Refuge.  There isn’t a day that goes by that I don’t mention his name, tell his story, or think about the privilege I had to be his father.  As I show people the sitting room, once his bedroom, memories of watching Yankee games together, listening to Adventures in Odyssey, or quietly lying with him in his bed to comfort him during a storm flood my mind.  I miss him.  But I love talking about him; his faith, his love of life, his impish grin and sense of humor, and his determination to squeeze as much out of life as possible.  Talking about David and sharing our story over and over again allows me to press on and through grief so that I can experience joy and contentment and purpose despite his absence.

October 22nd will mark four years since his death.  So much has happened in those four years.  Chris has been married to his beautiful bride, Brittney, for two years and moved from Boston to Manlius.  Dan finished his studies, got engaged to the love of his life, Katie, and moved to Binghamton, NY to find work as a welder.  I resigned from my role as pastor and with Brenda we started David’s Refuge.  I wonder if I took one of those stress tests what score I would get?

As time marches forward we are meeting and serving more and more people who have never met David.  In fact the majority of folks who stay with us only know what they have read about him on our website or what we share as we get together.  How I wished they could have met him and been challenged by his passion for life.

So today as I think about David I want to share with you a photo montage that we played at his memorial service.  As you watch it join with me in thinking about David.  If you are reading this as a post in facebook you may have to click the link and go to the actual wordpress site to watch the video.

Make sure you watch all the way to the end!

Read Full Post »

A Lesson from Yams

yamsLast week I met with an incredible group of parents who were part of a pilot project called CHAT, Communication Hope through Assistive Technology. Its mission is to assist youth with disabilities who communicate using technology to open their voices to the world. The kids attended a camp and the parents all met together to learn from each other and other professionals. They asked me to come and talk about David’s Refuge and the importance of self care as a caregiver. Somehow my presentation ended up talking about yams!
Now I have to be honest I am not a yam lover. Every time Brenda cooks up a batch of yams I always think, Oh no, not yams again! Why can’t we have home fries or Trader Joe’s rice or baked potatoes? There is always something better than yams.

But once I get the yams on my plate, all mashed up with several tablespoons of butter and lots of salt and pepper I actually find myself enjoying them. I forget how ugly the outsides look; I start to appreciate the soft orange color, and sometimes I even start thinking of other creative ways to cook and enjoy them. I stopped focusing on all the negatives and began to embrace the good and potential wrapped up in that beautiful edible tuber!
Raising and loving and accepting and embracing a child with special needs is a lot like learning to love and accept and embrace the wonders of yams. At first we think, Oh no my child has cerebral palsy. Oh no, my daughter has Down syndrome. It’s not what we expected. We would have never ordered it. We ask the why me or why him questions? In the beginning all we can see is the cracks and brokenness and struggle.

But after awhile you begin to see the wonder and beauty and personality and abilities of your child. You stop looking or focusing on the things they can’t do and begin to celebrate and embrace the things they can do. You fan into a flame their abilities and gifts. You accept them and love them for who they are and stop trying to make them into who they will never be. When this happens both you and your child enter into a place of acceptance and perfection that brings joy and contentment and wonder.

I love how Kathy O’Connell in her book, Firewalk: Embracing Different Abilities writes,

“Embracing a challenge or a difficulty means we are really acknowledging the abilities–which have always been within us—to meet it. Many of us do not realize that when we come into this world we already have all the abilities we need to reach our highest potential.”

By embracing your child’s special need, by embracing your role as their caregiver, you release the potential that child has. Embrace your child today. Start by doing it physically. Hold them, embrace them and whisper you love them. Then take a carefully planned step towards embracing their disability and find joy in the journey as you release them to become the person they were created to be.

So you see I’m not crazy. There is a connection to my yam story and self care. If you have any good yam recipes I would love to try one. Hit reply and leave it for everyone else to try.

Read Full Post »

Be Still!

Be Still by Alison Fisher Cullen

Be Still by Alison Fisher Cullen

This is a picture of a painting that hangs in David’s Refuge.  It was painted and given to us by our dear friend, Alison Fisher Cullen the day after David passed away.  Someone else owned it, but Allison went to them, told them David’s story, and they gave it back to her so she could give it to us.

The painting is titled, “Be Still.”  It comes from Psalm 46:10 which says,

“Be still, and know that I am God!

I wished you could see the painting in person.  It oozes peace.  It whispers to your soul to chill, relax.  It reminds me that I am not alone.  Someone greater than me knows me and tells me that I can know Him.  The more I discover about Him, the more I discover “stillness.”

Psalm 46:1 reveals the secret of discovering “stillness.”  It says, “God is our refuge and strength, always ready to help in times of trouble.”  No matter what we experience, no matter how sick our child is, no matter what the diagnosis is, no matter the loss, God says I am ready to help you in your time of struggle.  I have enough strength to empower you.  I am big enough to give you refuge.  “Be still and know that I am God.”

I have discovered that living this truth out takes daily practice.  I have to rehearse truths about who I am, who God is, how much he loves me, and how much he loves my family.  When I get lazy I get anxious and overwhelmed.

I hope you are experiencing stillness no matter what is happening on your journey.  I would love to know what truth about God most helps you to find stillness.  Be brave, share it!

Read Full Post »

Hope Was Born

I want to introduce you to some new friends of mine, Mark and Bethany.  I have known them for close to two year now.  We have laughed together, cried together, ate together, sipped wine together, sang together, and poured out our stories together.  We share a common bond in that they too are parents of a child who is severely disabled.

Their daughter is 10 years old and to this day no one has been able to give them a diagnosis for her disability.  This means there are no support groups that they fit in, there are no other parents they can call to ask if something is normal or not, and they have slowly become isolated from almost everyone.  While she goes to school no one invites her to their home and no one comes to visit her.  They took her to a school concert one day and a parent of one of the other children asked them, “Why do you have to bring that to a concert.”  Can you believe the audacity and stupity of that question? What made it even worse was Mark and Bethany were just celebrating how well their daughter was doing sitting still during the concert, only to get slammed once again.

Mark and Bethany felt alone.  They realized they were in a vicious and downward spiral and determined they need to branch out and see if they could connect with someone so they decided to go to a community health fair offered by an agency called Advocates.  This is where we met them.  We listened to their story; we shared a little about ours, and gave them a brochure and invited them to check out David’s Refuge.  Mark was leery so Bethany signed them up for a two night stay at David’s Refuge without Mark knowing it.

They came wondering if there was a catch, if we were trying to sign them up for Amway, or wanted them to drink a special batch of cool aid.  What they experienced was hospitality, comfort food for the soul.  As we loved on them with unconditional love barriers began to breakdown.  Hospitality communicates unconditional love and it becomes a conduit for us to share our stories and to walk our journeys together.  Mark started to relax.  He slept on the hammock, he played his guitar, we ate dinner together, and Mark started to share his story.

A couple weeks ago Mark and Bethany had a chance to come back to David’s Refuge for a second weekend.  Once again we offered them hospitality.  This time the sharing was a little deeper.  They shared their fear of once again trying to connect with people, wondering if they would ever be able to find someone who would simply listen and accept them for who they were.  They were raw.  Mark said he has never had someone to talk with about his daughter’s disability and the effect it has had on their marriage, their faith, and on them as individuals until he came to David’s Refuge.  All we did was make ourselves available and vulnerable with our own story.  We listened.  We cried and laughed.  The more vulnerable we were them the more vulnerable they were with us.  And life change took place.  Hope was born.

Read Full Post »

%d bloggers like this: