The Skin He’s In

The gifts had all been opened and the last of the Christmas bows rolled to a stop like a tumbleweed in the old west.  I sat with a steaming hot cup of coffee, gazing at the lights on the tree, counting my blessings.  Garrett and Luke were setting up their new gaming system, each taking his turn creating avatars to use in their games. They laughed as they chose body types, hairstyles, clothing styles, facial hair styles, and face shapes.  Lastly, they got to choose a skin tone for the online versions of themselves.  There were 24 choices, up from 6 in the past gaming system they’d had.  Progress.

Luke clicked through them once, twice, again.  He then exclaimed, “mom, there are no choices with birthmarks!”  I glanced into the playroom, but I didn’t have to say anything:  he was glaring at the screen.  “I’m going to write them a letter,” he said, “they should have more real faces on this thing.”

That's my boy.

That’s my boy.

 

For those who don’t know, Luke was born with a port wine stain which covers about 1/3 of the left side of his face.  He was also born with tremendous help from a gigantic suction apparatus and didn’t breathe for the first two minutes of his life.  So, when the doctor, after being in full panic mode, had helped Luke to breathe, and had then brought him over to us, gently breaking the news that he had a birthmark, a large, noticeable one on his face, Guy and I were confused, not sad or upset.  We were confused because we were indescribably delighted.  I remember saying “is that ALL?  He didn’t BREATHE for two minutes! Is that IT?!”

There were several months in which doctors were not sure.  They explained that most children born with a port wine stain on their foreheads also have Sturge-Weber Syndrome, that it affects their learning abilities, their speech, their IQ.  They were still unsure just why some babies are born with their veins too close to the surface of their skin, and still unsure as to why when that occurs on the head, the brain is affected. Luke’s birthmark reached only slightly onto his forehead, so we watched and waited. We met several children with Sturge-Weber Syndrome in the offices of Doctor Tan, the leading specialist for port wine stain removal on the East coast, located in Boston. We learned all we could about this condition as Luke was very busy sleeping his way through the first days of infancy.  It turns out we worried unnecessarily.  Within a year we knew Luke was learning and growing normally.

We began the process to remove Luke’s birthmark when he was 3 months old, on the strong recommendation of Dr. Tan.  This is not an easy decision to make for another human being.  Guy and I were both perfectly fine with leaving Luke’s birthmark on his beautiful face (I mean, LOOK AT HIM.) but Dr. Tan, and others, were quick to point out that starting the removal process early meant greater success, and that if we waited until Luke was old enough to make the decision for himself, not only would it be harder to remove, but more painful as well. We learned that untreated, port wine stains darken with age, and that they also begin to raise, become bumpy, in puberty, which is difficult for men who want to stay clean-shaven.  We wanted what was best for our boy.

What it meant for us was making a trip to Boston every six weeks.  On the way, we would stop at a rest area to apply a topical numbing anesthesia that we would then cover with saran wrap.  The earliest days of this were not a big deal, except for the fear of getting the lotion in Luke’s eye, but as he grew, he would spend the remainder of the trip trying to remove the plastic wrap in any way he could.  If you don’t think babies are strong little creatures, I share with you that we called Luke “BamBam” in his earliest years because of his muscle structure and strength.  I urge you to picture Guy driving through Boston traffic near the end of the Big Dig.  Picture Garrett, age 2 singing at the top of his lungs, and me, trying to hold the arms of an Iron Manchild as he wiggled and struggled and cried.  We generally made this trip in one day because of finances.  We spent 8 hours in the van to spend 15 minutes in a doctor’s office.  It was a high stress trip.

Worse still, was that the laser removal device was painful for my child.  People say it’s like being snapped with an elastic at close range.  For Luke, it always appeared more like being shot with a BB gun.  Repeatedly.  This is not an easy thing to watch as a young, trusting, vulnerable, protective mother.  I would sob all the way through his treatment, which lasted but a few minutes, after which we were offered a baggie of ice to hold on his burning face.  This too, caused Luke stress, so I would snuggle him and we would cry together as the pain dissipated.

But this story is not mine.  So let me tell you about things on Luke’s end.  We went to Dr. Tan for two years, almost never missing a treatment.  We had been told in the start that it would take 10-12 treatments to fully remove Luke’s birthmark.  Dr. Tan was flummoxed about Luke’s case.  When it became clear that the treatments were doing almost nothing to change the look of the birthmark, we stopped going.  We stayed out of Boston for another three years.

Then came school and new friends – people who had never met Luke nor seen a birthmark like his.  He became self-aware because others were pointing out his difference to him.  In late fall of his kindergarten year, in his little red sneakers and lime green backpack, Luke came home one day and asked if there was something we could do to remove the birthmark on his face.

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After sitting and talking about it, we decided to give the treatments another shot.  This time, it was life changing, and not because the laser did anything at all to change the birthmark on Luke’s face.  It didn’t.  But this was when we could see, and Luke could communicate, what the treatment did to him.  He didn’t yet have, or couldn’t form the words, but he communicated clearly enough.

First came the wringing of his hands.  Then the rocking of his body.  Then the counting.  Luke began to count things.  Steps it took to get to the kitchen.  The number of telephone poles between home and school.  The tiles on the living room ceiling.  Not all the time, not so that he couldn’t leave the house or go to sleep or anything.  Besides, the counting thing was all in his head, and he only rarely mentioned it, so we thought little of it. But then came the thing that was happening all the time:  the blinking.  Luke was developing, had developed, tics.  The tics were in direct correlation with one of two things.  One, mentioning Dr. Tan’s name.  Two, having a treatment.

What we would do was this:  we would have an appointment scheduled, and two days before – we would tell Luke about it.  For those two days we watched our son sort of turn inside himself, wringing hands, rocking, counting, blinking.  He kept telling us that he wanted to go to Dr. Tan, he wanted his birthmark off his face.  So we kept going.  I want to say we went another 3-4 times. At these appointments, I stayed in the waiting room.  I was no longer able to watch him in pain.  Guy said he had all he could do to hold Luke’s arms at his sides.

In April of his kindergarten year, we made another appointment in Boston.  Two days prior, we told Luke about it.  The fear was immediate.  Though he had chosen to continue treatment, Luke was clearly adversely effected by them.  He stood in the living room as we told him we were heading to Boston, rocking his body front to back, twisting his fingers and blinking non-stop.  When he went to bed that night, I sat with Guy and sobbed.  I had had enough.  I went upstairs, awoke my beautiful boy, brought him downstairs and told him we were all done going to see Dr. Tan.  And just like that.  The wringing, the rocking, the blinking – ceased.  (In all fairness, the counting and other compulsive behaviors continue — but that’s a story for another day.)

We never returned to the offices of Dr. Tan.

I won’t pretend to make you think I believe that Luke doesn’t sometimes wish the birthmark could have been treated into disappearing, maybe he does.  He probably does.  I have spent more time worrying about it than is healthy because I actually do not see his birthmark on his face and often have to stop to even remember what side it is on.  It is an absolute non-factor in my love for and relationship with – indeed, in my seeing my son. Close friends say the exact same thing.

This also reminds me of the first thing Garrett said about his brother when he came into Pen Bay Medical Center to see us after Luke was born, mere hours after the not-breathing debacle.  Garrett sprinted into the room, as he always did, and came to a complete stop when he saw his “Lukie Lukie Lukie” as he’d been calling him when I was pregnant.  “Oh!”  Garrett declared, age 2.  “His face is red!”  “It is,” Guy answered.  And that was that.

It’s others who hurt him, people outside his circle of normal daily living.  I am forced to remember this when we are out in public, typically somewhere out of Belfast, say, the mall in Portland, or the water park in Saco.  (Being gone for a year to Asia was particularly hard on Luke, and I’m sure this is why.)  People gawk. They do double takes.  They do that thing where they turn their heads away, but keep their eyes on him, like we won’t notice their lizard-like staring.  Luke, for his part, won’t make eye contact, puts his head down and moves to stand slightly behind me in these situations.  It’s probably subconscious.  I am completely conscious when I make certain to meet the eyes of whoever is staring at him, widening them ever so slightly when they see me, as if to ask “what?!”

Luke was 13 years old this past Christmas when he discovered the limitations of his avatar on his new XBox.  He wanted that birthmark on his face, even on a screen version of himself. It was such a non-moment moment I didn’t think about it until very recently.  Age 13 is arguably the hardest time to be in your skin, but in this very small way, Luke seemed to be saying that he’s alright in his.  There is nothing I want more for my child than this.

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Cousins

 

 

And On

I am sitting at a tiny black writing desk while the morning sun streams in the oversized window of my room at the Harraseeket Inn in Freeport, Maine.  Greeting me is one of the most beautiful recurring winter skylines, white near the horizon and ever bluer as my eyes rise above the bare, reaching trees.  Outside, it is -3 degrees.  Inside, my coffee is burning my tongue.  I have half an hour before I drive the winding, snowy roads back to the Stone House, on Wolf’s Neck Peninsula, for my graduate classes. For those who know the town, take Bow Road, across the street from LL Bean, out past tightly packed Capes and Colonials, out to where the road begins to narrow, further still.  Take a right at Wolf’s Neck Road, and drive on.  Continue past the big white barn to where the road forks, stay right.  You have arrived. images

Our stone house, our gathering place, our school building, past this day, is no more.  That is to say, it has been sold out from under us, or will be.  The University of Southern Maine, in case you’ve missed it, is in financial distress.  Selling our beloved house which neighbors Wolf’s Neck State Park, and sits beautifully surrounded by the Atlantic Ocean from the front and back, is one attempt to set things straight.  Others include firing beloved professors and omitting entire degree programs (so things could certainly be worse for me.)

In any case, I’m headed to the house for my last day of workshop.  Though I will never again look down over these snow-covered fields watching eagles circle over the ocean while I ponder the nuances of my writing craft, and though I am grateful to have ever had this unique opportunity in the first place, I’m ready to move forward.  It is not the stone house itself, but those who teach and learn there, that make the Stonecoast program what it is.

I’m heading into my 2nd semester of the best learning I have ever done:  learning that means something to me, for which I am not simply memorizing or rushing to get done so I can do what I truly want to do. This is what I truly want to do, and always have.  Yes, it took me a long time to get here, but the things I’ve done in the meantime give me something, too, to write about.  Here’s to the next five months of utter bliss.  May they be a wild and unruly parade that leads me past a thousand brightly painted doors.  May I summon the courage to knock on every single one.

Goodbye to 2014

My son Garrett had just turned 2.  It was late summer, and since he was securely strapped into his car seat in the back of our old green minivan, and since I was always about to throw up whatever I had recently eaten (being that I was about 17 months pregnant with Luke) I had put the windows all the way down, rather than the air conditioning all the way up. The fresh air felt amazing.  We were on a short drive to get gas, if memory serves, and were swept up in the quick traffic that is Belfast’s in the summer months. At that time, Garrett had very few full sentences he could string together, but was surprising us daily with new ones. “Get me more” was common, “Silly mommy” was another.  It was around that time I said, “Oh, Garrett, I love you so,” and he answered, “And I love the Rugrats!” which made me both laugh and cry.

His vocabulary, then, was growing normally, which is to say by leaps and bounds, and, as I’ve mentioned here numerous times before, his actual leaping and bounding was endless (and still is).  This was the same summer he hit me in the head with a rock when he was trying to hit the ocean. His body did not stop moving from morning ’til night, and naps were a distant memory. So, back to the window.  I put it down.  I looked at Garrett in the rear-view mirror.  When the breeze hit him, he closed his eyes, tipped his chin into it and sighed lightly.  He turned his head, rested it on the side of the car seat, and leaned slightly into the warm air.  “Mmm, mommy” he said, “slow down so I can see the wind.”

And we’ve been trying to slow the pace of life ever since.

2014 is over in a breath.  I would love to be able to review it month by month, but I don’t remember it that way.  I remember that Garrett turned 15, Luke 13 and Natalie 9. I remember I let my hair go gray.  I remember we invited a young man from Vietnam to share our life for the year.  I went back to graduate school to fulfill a lifelong dream of being a writer, and kept my job as teacher so the bills could keep getting paid.  Guy continued working for CIEE, along with coaching and teaching, because, you know BILLS.  I remember we had a few days together in Island Falls with my brother’s entire family, our family and my mother – and that it was wonderful.  My mother turned 70 and we celebrated with a lobster feast.  We got our first family dog and named him Reuben, and he has been, to me at least, a great joy.  It seems counter intuitive with all we have going on, but there it is.  It was the year we discovered a high rope swing at the local resevoir, the year Guy and I went away together without kids for the first time since Garrett was a toddler, and the year I finally began physical therapy for whatever makes me unable to run.  The kids continued to be excellent student athletes and stayed healthy.  There is nothing for which I could fairly or in good conscience wish for that would not deem me in damned poor taste.  There is no other life for me.

I say farewell to 2014, knowing and understanding in a way I can honestly say I never did before, that this time is gone, and it is never coming back.  Garrett is sophomore, and it feels very much like he’s got one size 12 foot out the door already. He starts driver ed in two months and I will rarely be driving him around after that.  If I could blink my eyes and live every moment over, I would do so without hesitation.  But life is to be lived forwards, not back.  We must take the lessons we learn and bring them forward with us. My lessons from 2014 are these:  love with an open heart, listen to your kids and give them your full attention when they talk to you, let go of whatever brings out the worst in you, follow your bliss and live life out loud.  Do it now.  There is no other time.  images

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