Before You Forget

(This is a letter I wrote to myself in the early morning hours of Friday, May 30th.  The day we received our new diagnosis of Dyskeratosis Congentia- After this post, you will find a lengthy explanation of what Dyskeratosis Congentia is)

Dear Kath,

 Do you remember some 17 years ago, sitting in the CF clinic, in the GI department at Primary Children's? The sweat tests had been done, intestinal biopsies done, tubes and tubes and more tubes of blood had been drawn.  Specialists had been seen and now, it all boiled down to one single, flimsy, white sheet of copy paper.  Your trembling fingers grasped the edges of that paper as you tried to read the words of a fatal fate that seemed to slip off the page with each shake.  You were brave.  Tears never leaked from your eyes.  They tumbled back down into your heart, leaking through the cracks and crevices already forming.

"Your children have pancreatic insufficiency and neutropenia.  There are only two diseases that cause pancreatic insufficiency;  Cystic Fibrosis and Shwachman Diamond Syndrome.  Their sweat tests are negative.  Because of the abnormal blood counts we believe your children have Shwachman Diamond Syndrome, not CF.  We will wait for a couple more tests to come back and we are consulting with specialists in Toronto but in the meantime, read this.  Become familiar with it."  Casually, they handed you the thing you have cursed and loathed every moment since then yet approved of with gratitude.  Remember?

Do you remember reading those brief paragraphs outlining Shwachman Diamond Syndrome?  You still have that obscure piece of paper.  It took you all of 30 seconds to become familiar with it, they were describing what you were already well acquainted with...your own children.

It was a private moment of the most striking grief.  A grief that couldn't be shared; a grief that plunged all understanding and sense to a dark place.  It was impossible to imagine that life could go on.   Life became less engaging and whatever it use to be, was exchanged for a sideline perch on the look out for death.  Around every corner, over your shoulder, on the heels of anything happy, you looked for death to come and cast its dark shadow.

Eventually, you joined the ranks of 'normal' and 'ordinary' though far less normal and ordinary than you cared to acknowledge.

Last night, I saw you visiting those places from the past; where the path of this life you know now crossed and collided so unexpectedly into the perfect life you wanted; thought you deserved.  In just a couple of very short hours, you will be set with all the careful certainty of science on a new path, not far from the one you've been traveling but new all the same.  It is going to be hard to finally hear the words you have been fighting to find. No one will understand the striking grief you are going to feel again, yet hide so gracefully.

So, before you forget...as that flimsy, obscure report of seemingly fatal proportions is placed in your hands...

It's going to hurt.  Feel it. Acknowledge it.  Embrace it.

It's going to be big.  Bigger than you can contain.  Let it spill out around you, it's forging a new path for you and your mighty children.

Watch it.  Watch the wonder of it all in the very moment it happens.  In a few short seconds you will see the culminating works and miracles of God and His timing. You will see the pioneering strength and sacrifice of your children; their perseverance and courage.

It's going to feel impossible and nothing will seem as it should be.  The world is not going to stop for you to mark this moment.  This is your moment and yours alone.  Beyond the window where you sit, people will be carrying on, soaking up the sun, enjoying the day, celebrating, carelessly eating pizza and frozen custard cause that's what normal people do.

Life goes on.  It may feel like it has fallen off it's axis but it goes on.  Someday, in the not so distant future even, you will feel normal again and maybe even ordinary.

So how is it that you will actually survive whatever this day brings?

It's in God's Hands.  You are in God's hands.  Your children are secure in His hands.

Without a doubt and you said it yourself...there is a reason why it took 22 years to find the gene.  There is a reason, your kids are still alive.  There is a reason you needed to learn so many hard things.  There is a reason life has had to be hard for you...

That reason is Joy!  Without all this, you would have never embraced life the way you have.  You would have never known just how capable and caring you could be.  Without all this..there is so much you would have just taken for granted.  This crazy, messed up life of yours has been a gift.  God does know how to give good gifts to his children.

So, before you forget..

"His purposes will ripen fast, unfolding every hour
the bud may have a bitter taste, but sweet will be the flower."

Watch for the miracle...watch for Him...He'll be there, in the very details!

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