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.
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.
(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.)
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.
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)
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.
Facebook’s reminder of your memories can be wonderful, and yet in the past few months, I have dreaded clicking on the notification each morning as I check my overnight messages on my phone. Most of the time, it’s some innocuous photo I posted about my cats, or complaining about yet another Denver Broncos playoff disappointment, or wondering why the potholes in the city are so bad.
Once in a while, it will be a photo I posted of Quinn over the last four years, and sometimes, it brings me to tears. Part of it is that I think about how quickly he has grown up and changed, but usually, it’s because I automatically start making mental comparisons between his development and Marshall’s current growth.
Quinn was already pretty late with a few things. I remember being anxious all of the time because most kids his age were crawling or walking long before him. He didn’t start to crawl until he was a year old, and took his first steps at almost fifteen months! This was all within normal ranges, but definitely on the late side. Whenever I would see a post about a friend’s child at eight months crawling or nine months and walking, I would wonder if everything was “normal” with Quinn. Turns out I had nothing to worry about. I can hardly keep up with him today.
With Marshall, the fears have started to grip me tightly, much more tightly than they did with his older brother. When he finally stopped his frequent extended hospital stays, it gave him time to catch up developmentally. He’s still changing and surprises me daily. He smiles when he sees me, he’s trying to feed himself, and I could swear that this morning he called out to our orange tabby with a crudely-formed “WALLACE!”.
I try not to get jealous, but then I’ll log onto Facebook and see updates of my friends’ toddlers who are younger but far, far ahead developmentally in comparison to Marshall, and it gets to me. These comparisons are going to be there forever – at school, in the minds of strangers, everywhere – and I need to figure out how to deal with it. I love looking at photos of friends’ kids, but the pang of jealousy still stings. And believe me, I appreciate the comments from friends who follow Marshall’s progress about how happy and cute he is when he’s in his Jolly Jumper. This is entirely in my head, and I need to stop comparing him to other kids because that will never be good for him (or, less importantly, for myself either).
Kids with Apert syndrome are always going to be different than their peers. We always talk about celebrating differences in classrooms and how uniqueness is wonderful, but I can’t help but think that it is so, so, so much easier for those of us who don’t have noticeable differences to say that. What do I say to you when you inevitably ask me one day why it you had to be different? How do I comfort you when you tell me you wish you weren’t different?
All I can think of is to say that I love you and I’m sorry – but not sorry that you are you.
Surgery Update: So, originally he was scheduled to have stents put in to ease his breathing troubles in late January, but that date was too late given his worsening sleep apnea. Fortunately, his ENT team has moved his surgery date up to December 9. He could be in the hospital for two weeks afterwards, but hopefully this makes a big difference for him breathing-wise. Maybe – just maybe – we’ll both start sleeping for longer stretches.
Another school year has started, so it’s busy times in our household. Quinn has started JK, I’ve moved to a new school, and everything is mildly controlled chaos at the moment. I’ll have plenty to write about as soon as I get more than a minute to myself.
In the meantime, I want to share a beautiful, incredible piece of writing from an amazing your woman who just happens to have Apert. Her words say things so much better than I ever could.
Update: We’re back at the hospital. It’s not nearly as bad as the last time when Marshall had the flu, but given his respiratory issues (choanal stenosis), any congestion causes big problems for him.
I read an incredible book last year that I haven’t been able to stop thinking about since I first picked it up. Andrew Solomon’s “Far From the Tree” is about people who differ from societal norms and the families of those people. Deafness, Down syndrome, exceptionally gifted thinkers, and many other topics are covered. It’s a fascinating look at small groups of our population who, when you add it all up, are all around us, struggling to manoeuvre through a world that doesn’t necessarily celebrate differences. Somewhere, maybe some time traveller knew what would happen to us this year and planted the book in my life to prepare me for what lay ahead.
When I read the book, there was a theme that was part of most of the chapters that has stayed in my mind. For many of the parents of children with profound disabilities, most of them say that even if given the opportunity to go back in time and chance the circumstances, they would not do so. Changing their child – giving them perfect health – would take away all that their child has added to their lives.
I remember reading that with incredulity. Surely, they were kidding, right? You wouldn’t wish away any suffering and pain they suffered? I couldn’t believe it.
The other day, Bridget met up with a friend of ours and her daughter. With Bridget were our two sons, Quinn and Marshall. When I asked her how it went, I could already see it in her eyes. “It was hard. There were a lot of kids there, and none of them had any differences.”
My heart broke. This must have been incredibly difficult for Bridget. As a general rule, she does not give a damn what people think of her, and she is a bold and sassy person (she’s a redhead, right?), but this was hard for her to bear. In all likelihood, most of the parents and kids were too busy playing to have noticed Marshall, but some probably did. No one asked about him, but that doesn’t matter. When I’ve been out with him, walking around with him wrapped in a sling around my chest, I have felt an intense urge to keep him cocooned next to me, protected from all prying eyes.
I don’t go on Facebook much anymore, as I mentioned in an earlier post. Besides wanting to be anti-social, I’m also intensely jealous right now. I see photos of your beautiful newborns, and I long to remember what it feels like to hold a child and not have worry be the overriding emotion. I am jealous that this time around, I have barely had the chance to hold my child without constant anxiety.
Anyway, the other day, I found myself on Facebook secretly catching up on the lives of my friends and co-workers. I noticed that Bridget had joined a new group – an Apert syndrome awareness group. She had tagged me in her first post to the group forum. I clicked on it with a not inconsiderable amount of dread. The topic concerned whether or not other parents had any warning before the birth of their child (the majority of whom said no, but this is a topic I’m not ready to talk about yet). Part way through the responses, I realized that there were a couple of posts that were completely different in tone and perspective. Instead of the usual first-person response (“I didn’t know…”, “I had no warning…”), all of a sudden a few talked about how their parents knew or didn’t know before their birth.
Although I shouldn’t have been surprised, I was not expecting someone with the actual syndrome in question to be posting a response. Why not? In my mind, I have been fearing the worst and not giving myself a chance to hope.
Bridget sent me a powerful email the other night. In it, she said that she needed to move past the hope that one day, our child would look “normal”, and the sooner this happened, the better. After reading some of the responses on the Apert syndrome forum, I wondered if my thoughts about normalcy and such were insulting to the men and women living with the syndrome. This surely must be something they’ve been subjected to their entire lives. I know I need to move past this and start thinking positively, for the sake of my child and my mental health, because I’m tired of the fear I feel.
It’s a beautiful Sunday afternoon. I’m sitting in our seventh-floor room, finishing off this post that I started in the middle of the night. Next to me, Marshall is singing to me. His cooing sounds soothe me when I should be the one singing to him. I’m going to go pick him up and try to rock him to sleep, hoping he has sweet dreams of endless milk supply and dry diapers.