Wednesday, November 13, 2013

Prepared for a Purpose~How being the Parent of a Child with Rare Disease has Changed Me

Today is my 8th day blogging for WEGO Health's National Health Blog Post 30 day Challenge.  Our assignment today is to write about how we have changed since being diagnosed, or becoming a caregiver to someone diagnosed with a chronic health condition. I wrote an article for the International WAGR Syndrome Association's newsletter, WINGS, back in 2005 about what it felt like when Evie was diagnosed with WAGR; it's called When It Hurts Like Thunder.  That's what it felt like, the WAGR diagnosis was a loud rumbling thunder inside.  A raging storm from which we could not escape.  One cannot go through a storm like this without being transformed.

As painful and lonely and scary as this life can be, however; I feel as though my life has been a long hallway that I have walked down. There are thousands of doors lining the hallway, and I have been in every single one of the doors behind me, and I will have to go through all of the doors ahead of me at some point in time.  At the time of Evie's WAGR diagnosis, I was at a teeny-tiny door with zebra striped material covering it.  There was a fuchsia colored peep hole-but as with most peep holes, I couldn't look in from the hallway, so I didn't know what was inside.  I opened the door and carefully negotiated my way in.  To my greatest surprise, I found my Grandpa Turk sitting inside. He had died nearly two years prior; but there he was smoking his corncob pipe.  "Oh, geez, kid," he said, "What the heck happened here?"  "I don't know, Grandpa."  I replied in tears.  "Is this what it felt like when Joel was born?" 

Evie and Joel on Evie's 1st Christmas
My uncle Joel had been born with Down Syndrome, and that was in the era when people would often just put the baby in an institution.  But Grandpa Turk and Grandma Joan had denied the majority and taken their baby home.  Joel isn't much older than I am, and he's one of the brightest lights of our family.  My grandma and grandma, and mom and dad had ALL been extremely active in the development and strengthening of the ARC of St. Croix Valley in MN.  I grew up going to visit and playing with the "handicapped" (as we said in the 80's) children in the room at school where my mom was a teacher's aide.  We went to all the ARC dances and picnics.  Special Needs was just another part of our life; not a foreign idea.

"Well, Kid, this is it." Grandpa said.  "You have been prepared for this.  Weren't you Summa Cum Magna or something?"  "Grandpa, this isn't what I was taught to do in school!  I don't know how to be mom let alone to a baby with rare disease."  Grandpa chuckled, clutching the pipe tight between his teeth as he sat back in his lawn chair.  "We didn't know where to start either, Kid.  We just took him home and loved him."

"Okay, okay...yes...we can do this..." I assured myself aloud.  "I love you, Grandpa," I said as I prepared to leave through the tiny door.  I looked through the peep hole.  Out in the hallway I saw TONS of people!  My mom and dad, Jeff's mom and dad, my sister, Jeff's brother and my sister-in-law...cousins, aunts, uncles, grandparents, friends, teachers....they were all crammed into the hallway of my life.  I opened the door and crawled on my hands and knees through the door which seemed to be getting smaller by the minute. 

As I stood up I realized that this crowd of people was an awfully silent bunch!  There was not a sound to be heard...the hallway screamed with silence.  My stomach turned when I stood up; the hallway was empty.  Wait a minute!  I couldn't do this alone!!!  I turned to re-enter the safe zebra-room with Grandpa, but the door was now the size of a fairy door in a knobby old trunk of a tree.  I couldn't fit back into the past from which I came.  I could only go forward. 

I found Jeff and Evie when I entered the next door down.  We were suddenly being inducted into a Rare Disease Hall of Fame as coaches for team Evie, however the future was scary and uncertain.  Cancer?  Blindness? Developmental delays?  What was Evie's life going to look like?  What was our life going to look like?  I didn't know, and I couldn't control it anyway.  But, I did start to see what Grandpa had talked about.  I had been prepared. 

The strong, solid, ivy-covered door I had walked through to my quantitative studies in grad school had seemed futile as I never really utilized research and statistics in my work as a manager of a dental office, but my research skills certainly came in handy when reading through what little research there was on WAGR.

There had always been doors covered in pencils and blank paper which had led me into rooms for writing.  I had even started taking a "mail-in" writing course during my pregnancy with Evie.  I completed the course by changing direction and, rather than writing children's stories, I started writing about our experiences with WAGR Syndrome.  Indeed, the doors to my writing had finally flung wide open.  I was inspired, focused and driven; no longer searching for my niche.  I would write about WAGR, my faith, and the world around us. 

Several more doors through which I had walked were covered in question marks, and balances of justice.  I had studied Communication; argumentation and mediation, as an under-grad and graduate student.  Now, those skills that I studied and learned have been called into practice time and time again.  I had to file appeals to get county services for Evie after she had been denied.  I had to figure out how and when to tactfully ask our doctors to seek alternate answers for some of Evie's more tricky health anomalies.  I had to figure out how best to communicate with all of Evie's teachers and therapists, and my communication needed to be clear and consistent. 

I discovered that several of the doors I'd walked through; the ones covered in clouds, stars, and a full, magnificent moon, had led to my dreams which prepared me for certain experiences.  For example, I had dreamt during my pregnancy about coming home from the hospital with a baby girl.  In my dream, I sat down in a chair in our living room, cradling the baby in my arms.  I looked down at her and saw wispy-fine hair on her head, and realized that she was a toddler actually.  Now why would my baby come home from the hospital as a toddler, and why did she have little to no hair on her head as a toddler?  The answer came two years later.  We had come home from the surgery Evie had to remove her port-a-cath after chemotherapy for her cancer was complete.  When I sat down in the recliner, cradling Evie in my arms, I looked down at her and instantly grew faint.  This was not just deja vu; this was my dream coming true.  She didn't have hair because she had been through 18 weeks of chemo.  She was a toddler coming home from the hospital, not because she was a newborn, but because she had just undergone surgery.  My dreams during Evie's pregnancy had prepared me for events that would take place during her life. 

Most of the doors I had walked through in my past were covered in crosses, Bible verses and shepherd staffs.  Time and again I have turned to God in my most desperate hours.  When I would be made fun of for hanging out with the kids who had special needs, I turned to God.  When the kids at school told me the only reason I got good grades was because I didn't have any friends, I turned to God and he said that I would be rejected because of him.  When I needed rest from all the activities I joined in college, and was trying to balance my desire for good grades with the fact that I finally felt accepted by my peers; God called me to the pasture and laid me down for rest.  And now, whenever life grows confusing, uncertain, overwhelming and chaotic; God still comes to me as my shepherd and comforts me.

So, how has life changed, how have we changed since becoming the parents of a child who has WAGR?  We have become focused on our priorities, stronger in our faith, outspoken concerning justice for those with disabilities, and more forgiving of others as we know we have to rely on mercy for our many short-comings.  I know that we are here and experiencing these heart-breaking situations that come with Evie's rare disease, because God is breaking us down and building us back up.  There's a popular analogy out there concerning God as the blacksmith and us as his metals.  The blacksmith must hold the metal in the searing fire in order to purify it until it shines so perfectly that he can see his own reflection in it. 

Then I will purify them and put them to the test, just as gold and silver are purified and tested. They will pray in my name, and I will answer them. I will say, “You are my people,” and they will reply, “You, LORD, are our God
Zechariah 13:9

I would like to see less scary doors in my future, and I'd hope the hallway contains less pain; both physical and emotional.  But that is not my decision to make.  God knows my days; the number and contents of them-He knows Evie's as well.  I will continue to open the doors he places in front of me, knowing that even when the hallway is silent, he has surrounded me with angels that will strengthen me and keep me safe. 


  1. Thank you for sharing! God's love and mercy certainly shines through your words and actions.

    1. Thank YOU, Jamie! I suffered from migraines for many, many years~including during my daughter's cancer. I'll continue to follow your blog!!!!



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