The fearful and wonderful journey: a psalm for special needs parents

One of my interests as a blogger, and as a follower of other blogs, is the issue of special needs.  

I read the blog Not Alone: Finding Faith and Friendship on the Special Needs Journey daily.  

And some of the individual writers I follow write about -- among other things, of course -- their personal and parenting experiences with disability and special needs:  autism (Sarah Broady, Carrie Cariello, Sandra Peoples, Nish Weiseth, and my own friend from church, Melinda Benn); Down Syndrome (Amy Julia Becker and Ellen Stumbo); and less well-known disorders like osteogenesis imperfecta (Ellen Painter Dollar).  

As they write about their struggles and successes, I feel like part of a little community of people walking a different path from that of the majority.  It's encouraging and comforting to be part of that community.  We all need to know that someone else out there "gets it."

In the last couple of weeks I've also read posts from young parents who have told us about their newborn or not-yet-born babies with special needs.  As they move forward so uncertainly and bravely, my heart goes out to them, and I admire them for sharing their stories with the world.  It takes courage and grace to go public and allow other people, including strangers, into their lives -- knowing that amid all the comfort and encouragement they receive there'll also be cliches, easy advice, and pat answers.  (Contrary to popular opinion, God often does, in fact, give us more than we can handle.  Just saying.)

Now here's a little bit of our story.  A few years ago Jonathan's neurologist recommended that we have some genetic testing done; because of Jonathan's multiple issues -- autism spectrum, developmental disability, and seizure disorder -- she thought this might yield some insights.  

So Richard and I had blood work done on Jonathan and on ourselves, and we met with a geneticist, who asked many questions about our family and did all kinds of measurements (head size, distance between eyes, height of ears).  He commented thoughtfully, "Jonathan looks just like the two of you"; this seemed a little self-evident, but his point was that he didn't see any physical attributes that would immediately suggest a genetic problem.  We left the appointment thinking that while this testing was an interesting process, it probably wouldn't reveal anything abnormal.

But it did.  When we returned for our follow-up visit, the test results showed that Jonathan had extra (duplicated) material on his 16th chromosome.  "Even five years ago the technology wouldn't have caught this," the geneticist remarked.  What this abnormality actually meant, practically speaking, was not really clear, though.  He said this was probably an explanation for some or all of Jonathan's issues, but there was little literature about duplications on that particular region of that chromosome.  He gave us a photocopy of one case study that was slightly similar, but not really.  So the results didn't change anything.  They were just ... interesting.

A few days after we'd had this appointment I sat down to write my thoughts and feelings about the experience.  What did it mean for something to go wrong on one part of one chromosome during the early minutes? hours? days? of a child's formation?  And if I believe in God as Creator of all things, which I do, then what was He doing at that time?  Did He notice?  Was it a mistake?  The poem below, "duplication on chromosome 16," was the result of my meditations that day.  

I want to emphasize that this poem isn't meant to be an explanation or argument or answer for anything, nor is it meant to express anyone's ideas but my own.  The way I'd describe it is that it's not science, and it's not a sermon -- it's a psalm.  I'm publishing it today for the special-needs parents and writers out there -- the ones mentioned above, and all the others.  God sees, God hears, God knows; and He can handle all our questions and feelings.  May He continue to give us the grace to trust Him on this fearful and wonderful journey.

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duplication on chromosome 16

As secret

            as silence

as quiet

            as midnight

at the eternal core of creation

Your fingers knit invisible fibers

something from nothing

life from the void

and You say it is good.

Your voice sings filaments of vitality

into sequence

                meticulous

                musical

and You say it is good.

In the depths of design

unseen, unheard

dark material

                on hidden strands

duplicates

                like a knot in the thread

                like a dissonant note

                                in the harmonious fabric

aberration

mutation

stretching

                splitting

                                extending

to every

single

inmost

cell.

Too late to reverse the process.

Too late to start again.

You, the Timeless

One,

submit to time

                letting Your work continue

                letting the loom weave

                letting the song play to its end.

And You say this, too, is good:

                not a mistake

                not a flicker of inattention

                not a tragedy

but another way

                to be

                to be Your image

                to replicate

                                Your wonder

                                Your weakness

                                Your ineffable joy.

Author of Being

Locus of Life

Father

                Mother

                                Maker

                                                Mystery

You say it is good.

***************************

poem by Jeannie Prinsen 2010

photo by Richard Prinsen August 2014