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Finn Schafran

Cancer. Just typing the word makes me feel sick. Sadly our dear friends, Dan and BrandiLee Schafran’s little boy, Finn was just diagnosed with a rare malignant cancer called rhabdomyosarcosis. The battle has begun. Finn needs our prayers.

Who are the Schafrans you ask? They are: Our friends. Wonderful parents. Followers of Christ. Guests of David’s Refuge. Hosts of David’s Refuge. The parent of a child with special needs. Committed husband and wife. A family who needs our prayers. Scared. Faithful. Physically and emotionally exhausted. Overwhelmed. And now the parents of a child with cancer. The battle has begun. Finn needs our prayers.

The journey before them is going to be long and exhausting. It will include forty two weeks of chemo with radiation added in around week thirteen. There will be sleepless nights, blood transfusions, impaired immune system, nausea and diarrhea, loss of hair, and relational stress. The battle has begun. Finn needs our prayers.

Amazingly Dan and BrandiLee’s faith in a loving God despite the brokenness of the world we live in has remained rock solid. The following is from an email I got from Dan,

 We feel very drained – physically, mentally, and emotionally.  And yet through the entire process (from start to now) we have felt the underlying peace that comes only from God and have tangibly felt God sustaining us.  Psalm 46 says that God is our refuge and our ever present help.  Psalm 91 says that “he who dwells in the shelter of the most high will rest under the wings of the Almighty.  I will say of the Lord, He is my refuge and fortress, my God in whom I trust.”  Christ commanded those who are weary and heavy laden to come to him for his yoke is easy and his burden is light.  This is not just literary encouragement, but the very word of God which physically upholds us.  This is what helps us in the face of hardship from becoming myopic or despairing.”

The battle has begun. Finn needs our prayers.

I’m not sure where you are in your own faith journey, but would you please stop and say a short prayer for Finn and his family? Pray for his healing. Pray for his family. Pray that they would not feel alone and that they would find refuge in the extravagant love of God. Yes, the battle has begun. Finn needs our prayers.

PS: Please take a moment and write a word of encouragement to Dan and BrandiLee on this blog

stress

I took a stress test online today and scored 443!  When I looked up what this meant it said, “You have a high or very high risk of becoming ill in the near future.”  Some of the biggies for me were the death of two close family members, retirement, and a change in residence.  Thankfully pregnancy and a jail term were not on my list or I would probably be writing this in the back of a stretcher on my way to the hospital.

Richard S. Lazarus, the psychologist who developed the test I mentioned above defines stress as “a condition or feeling experienced when a person perceives that “demands exceed the personal and social resources the individual is able to mobilize.”

In less formal terms, we feel stressed when we feel that “things are out of control.”  There is no doubt that as the parent of a child with special needs you often feel “things are out of control.”  The aid doesn’t show up, the seizures won’t stop, your child can’t communicate what is hurting them, the school won’t give you services, and your child is once again not included.   There were many days when we were caring for David that I woke up with stress and went to bed with stress.  It was my ever present companion.

One of the reasons we started David’s Refuge was to provide a resource to offer parents who were just like us, families who were overwhelmed and stressed out by their role as caregivers.  We recognized the importance of self-care and respite, the need to unplug even for an hour to recharge our batteries.  On David’s Refuge website you will find the following quote from Suzanne Mintz, the President and Co-Founder of the National Family Caregivers Association:

 “It isn’t possible to talk about self-care for family caregivers without talking about respite. More than any other service, respite or a break is what family caregivers want most.  The primary purpose of respite care is to provide relief from the extraordinary and intensive demands of ongoing care to someone with special needs, thereby strengthening the family’s ability to provide care. Respite care is planned and proactive.”

So my question for you is how are you being proactive in creating a moment of respite for yourself?  I know you are stressed!  I know you need a break!  So what is your plan to find a moment of respite so you can care for yourself?  It may simply be curling up and watching a thirty minute show on TV with a cup of coffee and bowl of popcorn (sure a glass of wine is OK as well!.)  It could be a weekend away with David’s Refuge.  My encouragement is to do something.  Start small but be proactive.  If you want some encouragement give David’s Refuge a call (315-682-4204) and we can help you be creative.

If you are willing please share with us some of the ways you squeeze in a little respite.  We would love to hear from you.

Because of you…

board of directorsI’m sorry but I have to boast about something today.  David’s Refuge is where it is today “Because Of” the support, hard work, and dedication of our Board of Directors.  This week Brenda and I had the privilege of taking our board out for a nice dinner at the Brae Loch to say thanks and celebrate a very successful year.  The following is what I read to them.   If you know Adam Mastroleo, Kent Gillis, Brenda Pfohl, Donna Richards, Maryann Pfohl, or Rich Wilkinson please thank them for their service and dedication to helping families know they are not alone, what they do matters, and that God loves them.

Because of you…

Because of you… David’s Refuge has changed the lives of over 150 families touched by disability or illness.

Because of you… these families have discovered that they are not alone, what they do matters, and God loves them.

Because of you… Brenda and I have seen our dream of David’s Refuge turn into a reality.

Because of you… Brenda and I have never given up.

Because of you… individuals, businesses, and foundations have had the privilege of partnering with us.

Because of you… David’s story continues to teach us that it is never over, that beauty can come from the most broken.

Because of you… David’s Refuge is now known as an organization that is making a difference in central New York.

Because of you… we are becoming known as a significant and important part of our community.

Because of you… we are not satisfied to serve only 100 families.

Because of you… we are dreaming of how to one day grow from New York to California.

Because of you… our little 501c3 operates with the excellence of some of the best nonprofits in the world.

Because of you… Brenda and I don’t feel alone, we believe that what we do matters, and that we are loved by God.

Because of you… I have grown as a leader and Executive Director.

Because of you… we are looking for an Executive Director that will take our organization to the next level of excellence.

Because of you… Brenda and I have the privilege of saying Thank You!

Marys meadowHave you ever walked into someones house and thought, “I feel like I’m home?” It smells like home. The stairs creek just like home. The way the table is set makes you feel like home. The nick knacks on the book shelves remind you of home. The pictures of past family members, grandchildren, parties, and past vacations make you yearn for home. But more importantly the love you feel as you walk in the door makes you feel like you are home. That is how I felt when I first walked in the doors of Mary’s Meadow Bed & Breakfast in Cazenovia, NY.

Howard and Ginny Krumsiek, the Inn Keepers and hosts of Mary’s Meadow have mastered the art of hospitality. They have loved on Brenda and me, our hosts, but more importantly our guests as if we were a part of their family. As their guests you are greeted at the door, given a tour of their beautiful home built around 1810, and invited to unpack your bags and relax. Their faith, life experiences, and love for people make them the perfect hosts. If you look on their website you will find the following verse found in the New Testament;

“Do not neglect to show hospitality to strangers, for by this some have entertained angels without knowing it.” Hebrews 13:2

As their guest you will be treated as if you were an angel!

Mary’s Meadow was the first B&B to partner with David’s Refuge. They understood our mission and were excited to join us in serving moms and dads of special needs children. They support our organization not only as inn keepers but also financially. Thank you Howard and Ginny for believing in our mission!

Kristin and David (1)Years ago our son David was given a tour of Mary’s Meadow even before the Krumsieks owned it. Our friends Bill and Kristin Morrow owned the house which was once a part of the underground railroad. David climbed a ladder to see where the fugitive slaves were hidden. Years later Brenda and I were telling Howard and Ginny about how David loved their house and had climbed the ladder to see the secret compartment. They asked us to send them a picture if it. When we gave them the picture they looked at us in shock. They went to get a notebook they had collected on the history of the house and in it was that very picture of David. Little did we or they know how David’s Refuge at Mary’s Meadow would grow from the life and death of this incredible boy who had an interest in the underground railroad.

So the next time you need some rest, relaxation, and refuge give Howard and Ginny a call and tell them David’s Refuge sent you!

10 fitch10 Fitch understands.  They get it.  Everyone needs a little elegance, tranquility, and romance.  Ask any guest who has stayed at this beautiful bed and breakfast and they will tell you 10 Fitch understand the importance of getting away, of unplugging, of respite.  They have mastered the art of hospitality.  On their homepage you will find the following description of what they offer:

“The comfortable and private atmosphere of this inn offers the hospitality, personal attention, and warm charm of a bed and breakfast perfectly blended with the luxurious, unique style and modern amenities of a boutique hotel, sure to please even the most discerning of guests.”

Home made fresh baked cookies, candle light and rose petals, gourmet breakfasts, and in room massages all become the canvas where the art of restoration takes place for our guests as they are pampered and loved by our hosts and the inn keepers at 10 Fitch.  Our guests leave knowing they are not alone, what they do matters, and that they are loved by God.

Cheryl Barber, the Inn Keeper wrote an incredible blog about how our partnership started.  I hope you take a few minutes to read her blog: http://blog.10fitch.com/2014/05/davids-refuge-at-10-fitch-caring-for.html#gpluscomments.

If you are looking for a wonderful place to get a little respite yourself don’t hesitate to give them a call or check out their webpage.  You will not be disappointed.

PS:  Next week I will share with you an incredible bed and breakfast in Cazenovia that has mentored and partnered with David’s Refuge from the very beginning of our organization.

 

lemonadeHave you ever wondered why it is some people can walk through adversity and actually use it to become better, while others go through a trial and they become bitter?  One person takes the lemons handed them in life and turns them into lemonade.   Another person gets the same bag of lemons and they allow them to sour everything in their life.  Same bag of lemons, yet two different responses.

Last week I was introduced to two incredible organizations started by people who were handed a bag of lemons every parent fears, the death of a child.  There is nothing sweet about having to bury your own child.  It is bitter, acrid, sour, gut wrenching and painful.   Yet these two families took this horrible bag of suffering and pain and started “lemonade stands” that are now serving and caring for others who need to know life can still be sweet despite the challenges of raising and caring for a child with special needs.

99 Balloons was started by Matt and Ginny Mooney.  Their beautiful son Elliot lived for 99 days.  At his funeral they released 99 balloons to celebrate each day they had the privilege to love and care for their son.  Matt and Ginny started 99 Balloons to provide respite to families who have children with special needs, believing that if they care for the parents, the parent can better care for their child.

Nathaniel’s Hope was started by Tim and Marie Kuck.  Their son, Nathaniel, was born prematurely with multiple and severe disabilities.  He fought hard and brought joy to everyone he met.  Nathaniel died at the age of 4 ½.  Tim and Marie learned from Nathaniel that what may appear to be imperfect in the eyes of humans, really is perfect in the sight of God.  Nathaniel’s Hope comes along side families to share hope, encouragement, respite, and resources.

I’m not completely sure why Matt and Ginny and Tim and Marie were able to become better and not bitter, but here are three observations I made:

  1. Both the Mooneys and the Kucks have a strong and vibrant belief in God.  Their faith in Jesus gave them the ability to find peace in the midst of their pain and hope for the future.
  2. The Mooneys and the Kucks chose not to wrap up their pain and suffering and hide it in a closet.  They share their story openly with others.
  3. The Mooneys and the Kucks are actively engaged with others in community.  They chose not to isolate themselves but to stay intentionally connected to others.

I’m not sure what lemons you have been handed, but I do know you have a choice in how you will respond to them.  I hope as you look at what the Mooneys and the Kucks did with their bag of lemons that it will motivate you to make your own pitcher of lemonade!  I would love to sit down with you some day and enjoy a glass of your lemonade.

 

stinking thinkingThis past weekend I was privileged to be a part of a panel discussion on “Caring for the Caregiver” at the 2014 Accessibility Summit.   This is an annual conference that joins families, caregivers, faith based organizations, service providers and teachers who care for and support those with disabilities.  We enjoyed meeting others who have a similar heart as we do for these amazing people.

During the panel discussion I touched on the power of our thought life and the tendency we all have to believe lies about ourselves, our children, and about God.   The following are the notes I brought with me.  I hope if you are struggling with Stinking Thinking that this will help you!

The Power of Stinking Thinking

One of the pitfalls caregivers have to be aware of is the power of “Stinking Thinking.”  You know the phrase, you are what you eat.  Well the same is true with your thought life.  What you choose to think about and dwell on in this life will make or break you as to what type of person you will end up becoming in this life.  Stinking Thinking is the result of not paying attention to your thought life and getting set up for failure by the enemy.

What are some examples of stinking thinking?  Here are some Brenda and I struggled with as we traveled the journey of caring for David:  We are all alone.   God obviously doesn’t love us, if he did he would have prevented David’s disease or at least healed him.  What impact can we have on this world if our whole life is made up of feeding, showering, dressing, and caring for David.  And the more we allowed stinking thinking to rule our thoughts, the more we felt alone, the more distant God felt, and the worse we felt about “being stuck” caring for David.

So how do you stop stinking thinking?  You have to become an expert at smelling lies.  Now I don’t want anyone to raise their hands, but how many of you after wearing a t-shirt all day take it off, look around you to make sure no one is looking, and do the sniff test to see if you can fold the t-shirt and put it away for another day, or does it immediate have to go into the laundry basket?   Come on, don’t look at me like I’m a freak!  There isn’t a person in this room who hasn’t done that!

We have to learn to do the same thing with the thoughts that attempt to take root in our minds.  The Apostle Paul encourages us to renew our minds in Romans 12:2 he says, Do not conform to the pattern of this world, but be transformed by the renewing of your mind.  I like how the NLT translates this verse.  It says, “but let God transform you into a new person by changing the way you think.”

So how do we do renew our minds so stinking thinking doesn’t rob us of the life changing work God wants to do in your life as a caregiver?  Here is a little tool I use that I robbed from the phrase we taught our children if they ever got caught in a fire: Stop, Drop, and Role.  I’m going to change it to: Smell it, Drop it, and Roll into the Truth

The first thing you need to do is train yourself to smell the lie, to give it the sniff test.   What are some of the lies we wrestle with as caregivers?  Just shout them out.  You need to become aware of the ones you are vulnerable to.  If you don’t know if a thought you are wrestling with is a lie, ask a good friends or a pastor or a counselor what they think.  You smell it!

Then you drop it.  As soon as you realize you are engaged in stinking thinking you need to stop it and drop the thought.  Simply say out loud or in your mind: I will no longer entertain this thought.  I am going to drop it out of my mind.”

And then you roll into the truth.  This is where you replace the lie with what is true.  Thankfully God has given us his word, the Bible to tell us what is true.  So for example when you wrestle with the lie, “I don’t think God loves me”, you smell it as a lie, you drop it, and your roll into the truth where for example in John 3:16 where it says,For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life.”   You smell it, you drop it, and you roll into the truth.

Every time we have a family stay at David’s Refuge we tell them we want them to leave knowing three things; that they are not alone, that what they do as they care for their child is the most important thing in the world, and that God loves them.  I hope you know this is true for you today!

(If you would like a list of verses Brenda and I use to remind us we are not alone, what we do matters, and that God loves me email me at davidsrefuge@gmail.com and I will send it to you.)

 

 

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