What Map Do You Use?

We watch a lot of Dora the Explorer in this house.  My girls are permitted 30 minutes of Tube Time daily, for their entertainment and my sanity.  Dora’s usually Sara’s selection, and since she’s the oldest, she usually gets first choice, although the older (and louder and more opinionated, if that’s even possible) that my littlest gets the more likely we’ll be watching Go Diego Go more often.

Within the first few minutes of Dora, for you unlucky folks who’ve never had the privilege of meeting her, she sets off on an exciting adventure to a fantastic destination (like a fairy-tale castle or a treehouse party) and realizes she’s lost.

“Who do we ask when we don’t know which way to go?” says Dora.

(Jesus, I usually say out loud, but of course that’s not what my girls say).


And out comes this rolled-up scroll of a happy map, singing it’s happy “I’m the map” song (do you have it in your head yet?).  And this happy map navigates for them the very adventurous, dangerous-but-only-in-a-toddler-friendly-way path to their destination.

Oh, if it were only so easy.

Seems to me that we are all on our own personal quest to some unknown destination, and that happy little map in Dora?  He doesn’t usually show up on our radar.  Sometimes we don’t really (seem to) need a navigator; the little boat of our lives floats us along the tranquil waters of a great career, or an easy loving, or a circle of fabulous friends.  But at other times it’s like our little boat has been thrust into tumultuous waters and we really don’t know which way to go.

The first time I white-water rafted down the Nile (doesn’t that sound smashing?) proved one of the most thrilling rides of my life.  I had triple-thick blond Amazon Woman extension-braids in my hair, a dark Ugandan tan, and a ton of courage…before I saw the white water.  Um.  Do I have to get in that little rubber dingy???  But I did, with 8 other scared passengers, and we paid excessively close attention to the instructor and his instructions before we headed downstream.  Now, white-water rafting (which may be boring to kayakers but is a wild-ride for we-who-dare-only-in-our-imaginations) on the Nile is a mighty different thing than white-water rafting on a Canadian river, largely because a Canadian river is full of rocks (that’s why the water’s so bubbly) and freezing cold.  You don’t want to fall in.  They tell you not to fall in.  But on the Nile, the white-water comes from the incredible depth of the water and the convergence of rivers, and the water is balmy and full of alligators.  Supposedly.

And the first rapid we came to, our guide said, “So, do you want to stay in the boat or fall out?”

What?  My boat of chickens voted to stay in the boat.  Which the guide honored.  The first time.

The second time, we thought the guide had listened to us when we said we wanted to stay in the boat.  He told us to paddle left.  Paddle hard!  And we did!  But those bubbly, churning, frothing waves just kept coming closer!  And suddenly our boat was vertical on the horizontal and we were flung into that mass of water.

It was like being in a washing machine.  I did not appreciate my extensions at that particular moment.

Later when we climbed into the boat, we actually thanked our guide.  It was terrifying…but enormously fun!  When it was over, that is.

Navigation of this life sometimes feels like that…like the guide knows where we’re going, and has instructed us for various situations, but we are headed in blind and don’t appreciate the ride until it’s over.

So often when we’re charting these waters we feel alone.  We know so few who have rare diseases or conditions!  Did you know that a rare disease is typically classified as one that affects less than 1 in 2000?  That means that a rare disease affects 18,000 or fewer in Canada.  Cystinosis affects approximately 50 people in Canada.  Talk about a lonely boat!  And I live in this lonely boat as a parent of a child with cystinosis, and not as a person with cystinosis myself.

There are a lot of things that make living with a rare disease/condition difficult, frustrating, frightening, and lonely, don’t get me wrong.  We struggle with questions that parents shouldn’t have to struggle with:

How will our daughter cope with foul-tasting medications?
How long will she have muscle strength?
Will she ever be able to have biological children?
Will she feel nauseated for most of her life?
How will she cope with “being different”?  Even when others don’t know she is?
Who, when so few are affected, will contribute to the research for better treatment and, dear God, please, a cure?

And others that I can’t even bring myself to write.

Eight months ago, when we boarded this lonely boat, our Guide seemed oddly silent, not giving us “fair” warning when we were tossed into the waves of heartache, disappointment, fear, and aloneness.  And yet, we had been prepared.  Words of encouragement, guidance and instruction permeate our Map.  Things like

“Be strong and of good courage, for the Lord your God is with you wherever you go.” (Joshua 1:9)

“Be strong and take heart, and wait for the Lord.” (Psalm 27:14).

“…we also glory in our sufferings, because we know that suffering produces character; and character, hope” (Romans 5:4)

“In this world you will have trouble.  But take heart!  I have overcome the world!” (John 16:33)

Such words glimmer like little stars on the pages of Scripture.  Verses that speak of hope inside of despair, love destroying fear, life breaking free from death.  We have a Navigator.  He left us a Map.

It is so easy to forget.


3 Comments (+add yours?)

  1. beth@redandhoney
    Feb 04, 2012 @ 04:59:31

    Being flung into a washing machine is entirely accurate. It was so much fun though. Thanks for sharing your thoughts here – I loved it, and as always, you are quite the inspiration…


  2. Crystal
    Feb 04, 2012 @ 06:59:47

    Why, thank you, Beth. It’s easy to be an inspiration when you can edit before you express… (:


  3. Gail Daniels
    Mar 19, 2012 @ 21:02:58

    Crystal, thank you for sharing your journey with cystinosis. You have a wonderful gift expressing yourself with words. Aliyah is gorgeous and very fortunate to have godly parents. May you continue to grow in your faith as you trust the Lord to guide you.

    With admiration.


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