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Archive for August, 2016

diagnosis

For the past week many of us have been praying for Finn and his family.  Almost daily I think about them sitting down with the doctor and hearing the words, “Your son has cancer.”  The weight of those words are almost unbearable.  Every parent of a child with special needs or those who are struggling with a fatal disease like cancer can remember getting the diagnosis.  It is a moment seared in our heart, mind, and soul.

While it has been almost 19 years since we received David’s diagnosis I can still remember hearing the doctor say, “David has a fatal, untreatable disease.” I tried to tell a friend of mine about it just two days ago and the tears began to flow.  The following is something I wrote in a blog right after getting David’s first diagnosis:

The pit I feel in my stomach as I write these words was magnified the day the doctor gave us the diagnosis.  Something was wrong with David’s macula and there was nothing we could do.  The feeling of helplessness was overwhelming.  We walked to our car with David knowing that our lives had been forever changed.  We were numb.  We felt betrayed by God.  We didn’t want to believe the doctors.  We cried daily, if not hourly.  I would lay in bed listening to Brenda cry so hard I thought she would die.  I had no energy or knowledge as to how to help her, so I would cover my ears and pray she would stop.

During the first few weeks I wondered if I was losing my mind.  We flipped through denial, anger, grief, confusion, and fear like watching late night TV.  Our faith helped, but there were times we wondered if God had lost control.  Thankfully we had friends who reminded us we were not alone, that we had the incredible privilege to love and care for David, and that God loved us.

I know that many people wanted to help us but didn’t know what to say. It probably would have been best if they didn’t say anything and simply told us they loved us and were there for us.  I think it was hard for them to see us grieving, so they tried to help us move beyond the hurt and heartache.  They would say, “God never gives us more than we can handle” or “God must have thought you were special to give you a special needs child.”  Both of these statements are not true and unhelpful.  We knew people were trying to be helpful, so we “cut them grace” and thanked them for their thoughts.

We started to practice living one day at a time. J esus once said, “Don’t worry about tomorrow, for tomorrow will worry about itself.”  While we still struggled with anxiety and fear for the future, we learned to find joy and contentment in each day.  Some days were awesome, others simply were almost impossible to get through.  But we found contentment and joy in the privilege of caring for David and our other two boys.

We continue to pray for Finn, his brothers, and his mommy and daddy.  May they know beyond a shadow of a doubt that they are loved and not alone as they love and care for Finn.

 

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Finn Needs Our Prayers

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

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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.

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