Monday, May 11, 2015

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.

*************************** 
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


13 comments:

  1. I really like your poem. It's great. Echoes my own sentiments for our boy, who has Autism, Receptive Language Disorder and generalised learning disabilities.

    Yesterday he and I ended up in A&E (ER?). I had to mention to each new nurse and each new doctor that he has autism so he may not understand their questions, and has a higher pain threshold than 'normal' which is why I was concerned enough to take him straight to A&E rather than our family doctor. The surgeon was eventually called because Prince couldn't keep still when they were examining him. He's very sensitive and doesn't like to be touched by anyone, least of all in a painful area! The surgeon kept asking whether the pain had come on gradually or suddenly and Prince said he couldn't remember. The surgeon scoffed and continued asking. I tried to let Prince answer for himself as much as he was able, but I had to interrupt and explain that the autism may mean that he genuinely doesn't know the answer or doesn't know how to answer. The surgeon changed tack all of a sudden and decided to do an ultrasound, which was very good thinking on his part because it meant the only thing touching Prince was the ultrasound device and he didn't mind that.

    Later, after he had determined that it was just an infection, the surgeon offered to walk me to the pharmacy while Prince sat in the waiting area. On our way we had a very strange conversation. The man asked me how my son was doing academically and how he thought that 'they grow up to be normal' (or something along those lines). I had to explain that Prince has learning disabilities and goes to special school. I nearly added that he probably won't ever have a job and will be lucky if he can live somewhat independently, but I didn't. The surgeon said he was sorry (or something similar). I was left wondering exactly who was on the spectrum... I knew he wasn't trying to be rude, but if I'd have been feeling vulnerable I may have taken what he said differently. Luckily, it was water off a duck's back. I considered *him* the odd one for having such a seemingly narrow world view as to be 'sorry' for my son being who he is. Prince is a wonderful human being and despite his difficulties, we take new steps and make new successes every day. He is not 'autism'; he's just Prince, and that's fine by us. So I claim this poem for us too, despite not knowing why Prince is the way he is. Vive la difference!

    I was trying not to cry in the car on the way there because I was worrying that he might have to have an operation and how he'd find that so traumatic, etc., etc., and I was thanking God for my wonderful, beautiful boy. It was actually a healing moment for me, because I have so often felt inadequate as his mother (guilt complex extraordinaire), but God has been showing me (repeatedly) that we're ok. Hallelujah!

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    1. Sandy, thank you SO much for this comment. Yes, this poem is absolutely yours too -- go ahead and claim it!! I know all about the guilt, all the feelings you describe. But our kids are so awesome, and we can be so thankful for them, as you are for your son. I'm so glad we're in touch via my blog and elsewhere online. I appreciate this connection with you -- let's keep it going.

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  2. I love the poem, Jeannie. Thank you so much for including me here. I've been considering those very things: Not a tragedy. And I love your answer: Another way to be. Yes. There's so much there for me to think about. Right now I'm reading Kelle Hampton's memoir Bloom (have you read it?) and feeling so frustrated with it. Because it feels like it's all about the tragedy. (Maybe that's unfair of me. Maybe it's just the place I'm in right now, where I don't want this story in my life to be a story about tragedy.) All that to say, "Another way to be" feels like the story I want. Thank you. <3

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    1. Dear Micha - that this might be what you need right now is the best thing I could hear. I think of you often. We have this game we play at home in which we make words of 3 or more letters and then tell a story with them. "Ace" is a word that comes up frequently and every time it does I say a little prayer for your family. No, I haven't read Bloom so I can't really comment but I know there are books that are just right at certain times and just wrong at others -- or just wrong for us. Thanks for taking the time to comment - God bless.

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  3. Your poetry is powerful, Jeannie. To think that God subjects himself to the limitations of time in his creation. You are so right that Jonathan expresses God's image.

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    1. Thanks, Tim. God is limitless, yet chooses to limit Himself. Such an amazing paradox.

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  4. What a beautiful poem, Jeannie. Breathtaking. I'm sorry for the difficulty that one minute chromosome has been to you, but how awesome to remember that God says, "It is good." Your son is precious. May God use these words to encourage many.

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    1. I hope for that too, Betsy. Thank you.

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  5. Jeannie, thank you so much for sharing a bit of your story and this beautiful poem. I agree when you say that when we share with each other as parents of children with exceptional needs that we have someone that "gets it". I feel at times that no one understands and then I read a blog such as yours and remember that many do understand. I love how this is truly written as a Psalm to the God of Heaven and Earth, as He gets it too!!!

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    1. I'm glad it spoke to you, Melinda. Yes, it's always so good to know we're not alone.

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  6. This poem was what I needed to hear after receiving some disturbing news. God says it is good and that his image will be reflected in it. That is peace I can rest in. Thank you for adding this link to DifferentDream.com's Tuesday special needs link up

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    1. I'm so glad to hear that, Jolene. Hoping you feel God's presence as you go forward. Thanks for getting in touch.

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