My Words, Not Marshall’s

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Keeping him still enough to pose for a photo is like herding cats.  Here he is, in front of his photo at the See Beyond My Face photo campaign.

Early Tuesday morning this week, we made our way downtown to a civic building where a photo campaign is taking place.  See Beyond My Face is part of AboutFace’s campaign to increase awareness around living with facial differences.  Marshall’s portrait is one of many on display in the building’s foyer, and we joined other families at the launch event. Like the other photo subjects, Marshall’s has some words about his facial difference printed beneath his image (thank you to Heather Davidson-Meyn of Fun Love Photography for taking his portrait).  For Marshall, unlike his older peers, the words printed are not his, but mine.

Marshy’s caption was taken from some writing I did about him in the past, and upon reading it that morning, I was struck by the difference between my tone and that of the men and women who have written about their own experiences.

My words, though recent, are still full of anxiety and fear about how Marshall is treated by people who don’t know him.  I wrote about girding myself against pointing and teasing and protecting him.  In contrast, other subjects’ captions are more positive, confident, and hopeful.  That’s missing, still, from my daily thought processes unless I make a conscious effort not to dwell on negative experiences.

I realize that Marshall cannot yet speak for himself, and that I have taken on the role as his public advocate, but my eyes were opened Tuesday morning.  My goal as his father, and as Quinn’s father, is for my boys to grow up feeling loved, happy, and confident.  My words on behalf of Marshall don’t convey that.  Two and a half years later, I’m still thinking about many of the same things that were on my mind then.  Of course, I have fewer fears about his immediate health and well-being, fortunately – we are very fortunate in that regard – but I’m clearly still dwelling on things I need to get past.

I’m someone who holds onto things from the past and lets them have power over me instead of learning from them and moving on.  When I compare the words I have spoken on my son’s behalf, they do not sound like the words that have come straight from the minds and hearts of people who, like Marshall, are living with a craniofacial difference.

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Hams

All of this makes me wonder again whether I have should be putting Marshall out there before he can decide for himself whether or not he wants to be written about and put out there for, potentially, the world to see.  Throw in the ever-present fear that his photos will be co-opted for some awful meme, and it’s enough for me to step back from Facebook.  How do I answer him if he one day asks, “Dad, how do you know whether or not I wanted you to write about me on the internet?”, or “Is there any way to erase everything you wrote?”  On the internet?  Probably not.

I have that constant fear that I’m doing it more out of my own fears than for him.  Now that the radio piece and the magazine article from earlier in the year have happened, there is definitely no hiding that part of my personal life and separating it completely from my professional (or even just “outside-of-the-house”) life, which is what I have tried to do for two and a half years so that I could make it through each half of the day emotionally intact.

This is a long and entirely obtuse and rambling way to say that despite all the doom and gloom that gets into my words, Marshall’s life does not, ironically, reflect my words (Can someone actually tell me if that is irony?  Alanis Morissette effectively destroyed the word’s proper usage for everyone approximately my age).

He is doing well.  He is happy, healthy, and hirsute (come on – give me the alliteration, right?).  For all that I still wish life for him was different (there I go again…), I can’t imagine not having him exactly as he is – beautiful, funny, and my little boy.

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Quinn and food – the two things Marshall loves most

(I am listening to a piece on CBC Radio’s Metro Morning about the photo campaign and AboutFace as I type this.  For all of the beautiful, wonderful people who spoke about their craniofacial differences on the radio, I love you all, and you are strong – stronger than most of us will ever have to be.)

 

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A Running List of Marshall’s Medical Teams

At the annual AboutFace awareness ride

Up front, I will admit that I am completely incapable of scheduling and keeping track of Marshall’s health care. Left to me, he would miss most of his appointments. In case anyone is struggling with keeping track of what medical care your child with Apert syndrome might need, I’m going to try and keep an updated list of the facilities and professionals who are part of Marshy’s care.

If you think I might have missed an important area of care, please let me know and I will add it to the list. Note also that care and certain procedures offered differ in various parts of the world.

Hospital Services

Plastics – syndactyly release; eventual cranial and possibly facial surgery

ENT – tubes for drainage of ears; tonsils and adenoids removed; partial septumectomy; monitoring hearing along with audiologists

Orthopedics – monitoring lack of normal shoulder range

Opthalmology – monitoring vision and checking for scarring due to inability to fully close eyes at night; monitoring pressure on the eyes (an indication that skull surgery is necessary)

Respirology – sleep studies to determine severity of sleep apnea and to find possible solutions such as using a CPAP machine

Neurology – using yearly MRI scans to check for increased intracranial pressure and enlarged ventricles

Dentistry – dental and possible jaw issues being monitored

Cardiology – apparently, heart issues are common; Marshall’s echocardiogram at 9 months did not indicate any heart problems

Occupational Therapy – monitored and lead the recovery from his syndactyly release (healing from skin grafts to his hands)

Bare-chested dancing for his grandparents

Outside of the Hospital

Speech and Language Pathologists – this is key, especially since many of our children are late to hear or speak; look for courses on how to work with your child to develop language skills

Occupational Therapy – home visits to work with Marshall on using his unique and stiff fingers; strengthening his arms and shoulders

Family Therapists and Social Workers – there is no shame in taking to people who can guide you through the powerful emotions that are inevitably a part of raising your child, as well as the effect it can have on siblings

Hearing – there are many options for assistive hearing devices you may need, in addition to devices that will your child’s teachers may need in the classroom

Government Grants – there is help out there depending on where you live; Canada has a few provincial and federal aids available. If you need help filling out an application form, let me know and I’ll try to help.

Schools – As a teacher, I can tell you that some schools may try to give up on your child. Do not let them push you around. Advocate loudly until they can do it for themselves. If you ate having problems with your school board being unsupportive, send me a message with any questions and I will answer them to the best of my ability.

AboutFace – without their emotional support, I’m not certain I personally would have survived the fear of the unknown. Take a look at their website. These are beautiful parents and families who can guide you through the scariest and hardest moments.

Facebook – there are several private groups where news, questions, and tears are shared. Meeting and talking to others who have gone through what our family is going through had been enormously helpful.

A reminder of how much Marshy has grown

AboutFace

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I could look at this face forever.

Tonight, Marshall, I caught a glimpse of your future.  Of course, I can’t actually see into the future, but I think I got a bit of an idea of what life might have in store for you.  I was invited by the amazing Canadian organization AboutFace to join their volunteer committee this year.  There was a gathering downtown tonight where I had the opportunity to meet members of the board of directors, other volunteers, and most importantly, many young men and women with facial differences.

I met fathers and mothers who have been where I am now, but many years ago.  I spoke to successful adults who were where you are now, Marshall, long ago.  My heart burst with pride to hear the beautiful singing and performances from two young women who stood before the crowd with confidence and poise beyond their years.

Where was this world before you were born, Marshall?  How did I live so many years, and teach for so long, without learning about craniofacial syndromes, facial differences, syndactyly, and Apert syndrome?  Like Lucy walking through the closet and into Narnia, it is not an exaggeration to say I had a magical experience tonight.  To hear about and see a group of people who have dedicated so much time, energy, and in some cases their lives, to helping empower and embrace young people with facial differences was a powerful and emotional experience.  It is truly an honour to be joining them, to learn from them, and to try to do what I can for children like you, Marshy.

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From L to R: Quinn (is offended by the idea of shirts), Bridget (cannot believe she lives with three boys), Marshall (doesn’t care about anything, just wants to be fed).