Be strong, and let your heart take courage.

These are powerful words.  How do I let my heart take courage?  So often there are times when the news is so overwhelming that we are filled with fear and trembling especially when we hear the words, “You have a tumor.”  How can we take courage in those times?

Learning to Cultivate Hope

It has taken me some time to find my voice again.  Recently I became discouraged after I received some disappointing news and I stopped writing in my blog.  I am reminded of a time 6 years ago when we heard those words, “You have a tumor.”  As pastors we are to be cultivators of hope and promise–faith and joy.  But what happens when life seems to be filled with more downs than ups?  How can we learn to cultivate hope in the midst of adversity?  

The Psalms can be of help in these trying times… Take a look at Psalm 31.

Excerpts from Psalm 31

⁹ Be gracious to me, O Lord, for I am in distress;
my eye wastes away from grief,
my soul and body also.
¹⁰ For my life is spent with sorrow,
and my years with sighing;
my strength fails because of my misery,^*

¹⁴ But I trust in you, O Lord;
I say, ‘You are my God.’
¹⁵ My times are in your hand;
deliver me

²¹ Blessed be the Lord,
for he has wondrously shown his steadfast love to me
when I was beset as a city under siege.
²² I had said in my alarm,
‘I am driven far^* from your sight.’
But you heard my supplications
when I cried out to you for help.

²³ Love the Lord, all you his saints.
The Lord preserves the faithful,
but abundantly repays the one who acts haughtily.
²⁴ Be strong, and let your heart take courage,
all you who wait for the Lord.

Our family has learned through adversity how to take courage and cultivate hope in the midst of life’s storms.  Blessings often come to us through the most challenging of circumstances.  This year we remembered that journey because of Rare Disease Day in February.

Rare Disease Day was February 29

We think of ourselves as somewhat unique but mostly normal parents.  Maybe our problems are little different but as many parents we love our kids, try hard to steer them in the right direction, and plan on living a good life with them helping them to be the best kids and adults they can.  Diseases we worried about were childhood diseases–measles, chicken pox, roto virus.  I could not have told you what a rare disease was or described one to you.  But now I know, because we are a family that is living with a rare disease.

Rare diseases are not sexy.  They do not get media attention.  They do not get funding dollars, they do not have fundraising campaigns, or telethons.  They are rare complicated medical conditions that require a team of specialists to treat and are not known about in the general public.  Because they are rare, treatment is difficult and often costly.  They affect less than 1 in a million people.

In January of 2006 a Rare Disease hit our family.

In 2006 my last semester of seminary we got some terrible news.  My husband was having double vision and I sent him straight to the eye doctor.  After some initial tests the eye doctor contacted a neurologist and ordered an MRI of his brain.  We waited for more than an hour in the waiting room until every patient left and then the news we heard would change our life forever.  The neurologist asked some strange initial questions, and then said to my husband who was 35 years old, “You have a tumor, a rather large one, growing inside your head next to your brain.”  In that moment everything in the room changed.  Time slowed way down and everything became surreal.  “You have a tumor” rang in my head over and again.

The doctor went slowly.  He showed us the MRI scans, which was very strange to see the inside of my partners head.  But then he told us something that was very empowering, he said “If you have never been a part of the medical system, this will be a dramatic change for you.  Take your time to get expert opinions from three major medical centers.  This kind of thing needs a team approach.”  He was right.  My husband was diagnosed with a rare condition called a clival chordoma.

Benign or Malignant? 

Whenever you are dealing with a tumor, the first answer you need and want is “Is it benign (loosely meaning harmless) or malignant (meaning cancerous and often life threatening)?”  Chordomas fall right in the middle–they can go both ways.  They are complicated slow growing spinal bone tumors that often recur, can metastasize, and are resistant to traditional radiation.  In short, chordomas are complicated rare conditions–they are among many conditions that are classified as rare diseases.  They require expert surgeons, latest technological advancements, and special radiation called proton beam radiation.  Because proton radiation centers are also rare, we had to move so my husband could receive treatment for three months.

So now Rare Disease Day matters to me and I hope soon it will matter to you.

A Children’s Book Contest by The MarbleRoad Foundation 

The MarbleRoad Foundation is an organization that cares about rare diseases.  A few months ago they announced a children’s book contest for a family affected by a rare disease.  I wrote a story about our family and how we turned the difficulties of this condition into an adventure for our children.  We decided to turn it into a game for our kids.  They went everywhere with us in their dad’s treatment–to the neuro-icu, the doctor visits, and ultimately when we moved for radiation we signed them up in a new school for 6 weeks.  We explained what we could about the tumor and the treatment according to their age of understanding.  We did our best to keep things as normal as possible for them and made sure to keep play as part of our every day activities.  Our kids’ routine helped to keep our days as normal as possible–we had to focus on caring for them which kept us from thinking too much about the disease.

The summer of 2007 while my husband was receiving proton beam therapy we stayed in a furnished condo across from a pool.  The children both learned how to swim that year and our daughter learned how to ride a bike.  When we ask the kids what they remember about that challenging summer, they remember the pool, the play room, and the museums.  As parents we are grateful that their lives as kids are not defined by their dad’s disease.  In short, we turned our Adversity into an Adventure for us all.

We are all are survivors–my husband is my champion.  

In honor of Rare Disease Day this past February, I wrote our story in the form of a children’s book.  It was one of 10 stories featured in the MarbleRoad Rare Story competition.

I hope you enjoy reading The Adventures of Proton Boy and his Dog Einstein !  You can see the story by following the link below.

The Adventures of Proton Boy

May you turn all your Adversities into Adventures,

Pastor Tanya

PS:  Next week we will explore “Creating Community”.