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

All In the Family


It’s been a while since the last post.  Sometimes, no news is good news, and in this case, that is exactly how it has been.  With his syndactyly release done, Marshall has no major surgeries scheduled in the near future.  His hands continue to go through the healing process, and while he screams and fights me when I massage his fingers to break down the scar tissue, he is slowly learning to use his hands.  It was pretty amazing to see what he was able to do with just his thumb and his four fused fingers, but now he is grabbing things, dumping toys on the floor, and just the other day held my hand while we went for a short stroll.

Yes, that’s right – he’s walking.  About two weeks ago, he finally took the plunge and let go of the walls and furniture and since then, he has been unstoppable.  He’s already quite steady on his feet, and of course he’s fearless (what’s a few falls when you’ve had three surgeries, right?), all of which means the cats are in trouble.  As soon as he sees Wallace or Indie, he makes a beeline for them, hoping to pet their soft coats and give them a sloppy kiss.  The cats, on the other hand, don’t seem to be quite ready yet for the saliva bath.

And as usual, Marshall continues to be just about the happiest kid I’ve ever met.  Laughing, smiling, and looking at us with those twinkling eyes – it keeps me going on tough days.


A few days ago, Bridget repeated something she has said a few times in the past twenty months, but I never gave it much thought until this week: “It makes me sad that he doesn’t look like his family.  He looks like the other kids with Apert, but not like his brother.”

It’s undeniable.  For one thing, he has the hair I’ve always wanted – crazy curls going in all directions.  I would kill for hair like that (and yes, I know that’s something only people with straight hair generally say).  Bridget used to have very curly hair, and Quinn had it briefly as an infant until we cut it and it never grew back the same way, but now both of them have fairly straight hair.  And despite a couple of relatives that have oddly curly hair, I sport the standard East Asian head of dark, straight strands.  Marshall has the standard Apert eyes – slightly protruding because of the shallow mid-face, which makes his eyes appear very large.  His brother’s eyes look more like mine.  It is true that in family photos, Marshall looks very different than Quinn, and I never processed that until now.


It’s probably due to the fact that I knew he looked different than the average child because of his syndrome, but I never thought about that difference in comparison to the rest of his family.  He’s adorable and sometimes, when I let go of my anxiety, I know he gets looks because of his cuteness rather than his differences.  One day, I wonder if he’ll ask why he looks so different than us.  It’s inevitable, I assume, and I hope we’re able to answer with facts, compassion, love, and empathy.

There is certainly a “look” to children with Apert syndrome.  There are certain physical features that most – if not all – share, so on Facebook, when someone new to the Apert group posts an introductory message, Bridget and I often share a knowing glance or nod.  The fingers.  The eyes.  The shape of the head.  The mouth.  This happened to me once months ago at the Hospital for Sick Children when a mother approached me to ask if my son had a craniofacial syndrome.  She was there with her slightly older son, who had a related syndrome.  She knew immediately that Marshall had one of a couple possible syndromes.

I’ll go back to something I posted at the very beginning, something I’ve brought up once or twice since – would I wish away his health complications if I had that power?  If he didn’t have Apert syndrome, Marshall would likely look like Quinn.  He would look more like a combination of Bridget and me.  He wouldn’t, however, have his perfect Marshall smile and his perfectly mischievous little glances at me.  It’s certainly selfish of me to think this because he would also not have to endure more surgeries in two years than I’ve had in forty, but since I don’t have magic powers and a time machine, I’ll take this Marshall any day of the year, thank you very much.

Through this blog, a few readers have told me they randomly found it and shared some experiences with me.  In some cases, they tell me about relatives or friends who were born with Apert syndrome decades ago, and others share their very recent experiences.  To all of them I say thank you opening up to me, and for sharing your stories of hope and love with me and my family.  The world is a scary place – scary enough without worrying how and if it will welcome your child who looks different, but all of you make it a bit less scary and a filled with a little more love.



Wearing his new hearing aid

I’m an elementary school teacher.  It’s a good job, I know, and one that is valued by a lot of members of society, even if the government tries its damnedest to make us think otherwise.  I spend the day entrusted with the care of other peoples’ children, and at night, I have my own two kids.  I try to keep my two worlds separate – no work comes home if I can help it, and my family life is kept out of my classroom.  That isn’t always easy, especially when I have a rough night with a lot of wake ups, but generally, I’ve been successful in separating the two halves.  For all my students know, I could have been a model in a previous life (I was, you know).


For perhaps the first time, I’m allowing the line between home and work to blur.  I’ve started reading R.J. Palacio’s now-famous teen novel Wonder to my class.  I don’t know why I waited until now to start, but now feels like the right time.  My students are loving it.  They ride the same waves of emotion and anger as me, and I think it’s genuine.  We’re still fairly early in the book, but their hearts are already breaking for Auggie as he starts at a school for the first time.  They’re cheering for his new friends, and the anger is palpable in the classroom when someone makes fun of his facial difference.

I’ve had to choke back tears a few times already.  I haven’t let them know yet just how personal this story is to me.  It’s amazing how much of a parallel I can draw between our lives and the book.  The same worries.  The same thoughts.  The same guilt and sadness. The same small victories.

At some point – maybe before we finish the book, maybe afterwards – I’m going to bring Marshall with me.  As much empathy as they have for Auggie, and as amazing as our conversations and discussions have been, I want to put a face to the story for them.  I want them to know how much it means to me that they care about treating everyone with dignity and respect, no matter the differences.  In this small way, maybe one day they’ll stop someone from teasing a classmate who is different, or they’ll tell a friend about their experience meeting someone with a craniofacial syndrome.  Maybe this is the one thing they take with them from our year together.

With March Break upon us, I’ve been reading ahead so that I can think about how I want to introduce them to Marshall, why I want to do this, and where to go with it after they’ve met him.  I have to be careful where I read the book, because my fists clench, I weep out of frustration and fear, and I often close my eyes to thank Auggie’s friends for being his friends.  For those of you reading this blog and following Marshall’s life, Wonder gives a surprisingly accurate glimpse into the lives of families with children who have a facial difference.  Do yourself a favour – actually, do us a favour – and read Wonder.  It’s beautiful.


Quinn in his great-grandmother’s arms

The people I held dearest in my heart have always been my grandparents.  As a child, I didn’t realize just how much I loved them, but once I hit my teenage years and I became intolerable just about anywhere else, their home was always a safe place for me to go and let my guard down.  When I was away for three years living in Vancouver, I missed them more than anyone else, and they were a major reason why I moved back to Toronto despite having started my teaching career on the other side of the country.

My fondest memories are of my grandmother cooking me incredible meals, and then sitting across from me watching me enjoy her work.  If not for her, I might have been twenty pounds lighter with more moderate eating habits.

When Quinn was born, my heart burst with happiness to see them holding their great-grandson.  I felt so fortunate to still have them around.  Three years ago, when they moved back to Taiwan after spending the previous thirty-five years in Toronto, I sat Quinn in their arms and took photo after photo, aware of the fact that this might be the last time I would see them, and the last time my family would span four generations.

My dear grandmother passed away a year ago, and last month, my grandfather died just short of a full one hundred years of age.  I never made it to Taiwan to see them after they moved back.  It was always the cost, the time, the fact I had my own family to take care of now.  It breaks my heart to know that Marshall never had the chance to lie in his great-grandparents’ arms, because if there’s one thing I can be sure of, it’s that they would have loved him unconditionally and would have looked past all of his differences without hesitation.

At night – sometimes ten times a night now that his teeth are starting to come in – when I go into his room to comfort Marshall, give him a bottle, or pat his bum, I whisper to him about my PoPo, his great-grandmother.  I run my fingers through his curly hair and tell him PoPo would have loved him, would be proud of him, and would look after him.  I am about as staunchly atheist as can be, but the urge to hold on to her and feel her around me makes me wonder sometimes if maybe she is in some afterlife looking down on Marshall and Quinn with her usual smile and carefree laugh.

Happy Birthday, Marshall

It’s hard to believe it has been one year.  In many ways, it was the longest year of our lives, but because of the learning we’ve had to do at lightspeed, the year has been a blur as well.  On that cold, rainy/snowy February day last year, I carried my little newborn boy into the back of an ambulance to be whisked away to Toronto East General.  Wrapped in several blankets, little Marshall Han Ku lay in my arms as the paramedics gave him oxygen through a mask, checked his vitals, and congratulated me on our beautiful addition to our family.  I sat in stunned silence, more worried and sad than I had ever been.  In one morning, our lives were turned upside down.  That night, our neighbour Neil knocked on our door, and without saying anything he gave me a hug and told me everything would be alright.  I’m not sure I believed him at the time.

Stretching at the hospital

A full year later, upside down has meant a lot more appreciation for the fragility of life, and I can’t speak for Bridget, Quinn, and the cats, but it has also meant a great deal of joy and love.  Despite the nights of crying (that still happen sometimes), the days and nights at the hospital, and the constant worry for the future, there has been nothing more wonderful than to lie in bed on weekend mornings with my two boys snuggling with me and laughing.  I have had the privilege of watching Quinn be an amazing and tender big brother, as well as Marshall’s biggest fan.  Marshall looks at him with his big eyes full of nothing but love and happiness.

From the early days

I’ve watched Bridget go from superstar mother to mother of the year as she juggles myriad appointment-making, all with her chin up and hope in her heart.  She has been a rock for our family.

We’ve had family and friends rally behind Marshall and give us more love and support than I thought possible.  We’ve wanted for nothing, especially not encouragement.

And most importantly, Marshall is doing well, perhaps even thriving.  He laughs, he smiles, he has started babbling (of course, “Daddy” was his first word!!!), he plays with us, and he has taught me what true toughness means.  He has endured more in his one year of life than I have gone through in thirty-nine years.  He is, in a word, my hero.  I rankle at the thought still that he will have to carry the burden of teaching compassion and empathy, but who better to do so than my little hero?  When I look into his sparkling eyes, I see a boy that doesn’t yet know or care that he is different, but instead looks at me with the one thing any father would wish for – love.

Pre-Superbowl pep talk

Because that’s the point of family, isn’t it?  There is love in this household – enough, I think, to carry us through the hard times and the surgery he had and the surgeries to come, as well as anything that might be coming in the future.  I have to think this way.  To look at it any other way would make it too hard to go on.

That first night, Neil was the first of many to tell me everything would be okay, and gradually, I came to embrace that thought.  It HAS to be okay, because it just has to be.  It will be.  Each day, it gets a little bit easier and more comfortable to think that, as Marshall has developed and grown.  Things have gone much better than I imagined it would since that first scary, unknown day.

Always ready with a smile

Thank you to all of our neighbours, who have done nothing but embrace Marshall each day with the same love they have shown Quinn.  Thank you to all of our friends, near and far, who have made sure we our lives have been as stress-free as possible.  Thank you our families for rushing to our aid at the drop of our hat, for letting us cry on your shoulders, and for loving Marshall and the rest of our family with tenderness and kindness.

We have not been alone in this difficult journey.  There have been a lot of other families raising children with Apert syndrome that Facebook and the internet has allowed us to communicate with and share our fears and questions.  Each day, I watch their struggles and triumphs too.  Sometimes, my heart breaks, but it also bursts with pride as I watch young men and women succeed and thrive around the world, all of them overcoming much more than most of us have had to face.

All of those children and adults are my heroes.  It is a community I did not know about one year ago, but now consider myself lucky to be part of it.

Finally, thanks for reading this blog and coming along for the ride.  One day, I hope Marshall will be able to tell you his own thoughts.  Until then, it’s my pleasure to speak on behalf of him.

Dear 2015…

…you were the hardest year of my life.  I’m not going to sugarcoat it.  2015 was not an easy year.  In many ways, I hated it.  I’m happy it’s in the rearview mirror at this point, and I hope I never have a year as difficult as the last one for the rest of my life.

My favourite part of Marshy – his unique little toes.

It hurt.  That’s the best way I can put it.  It hurt physically, emotionally, mentally, and any other -ally words you can think of.  It started off with Quinn, Bridget, and me eagerly awaiting the arrival of a bundle of joy, and before we knew it, we were thrown into a whole new world (cue Peabo Bryson), one we never expected to encounter.

It hurts and shames me deeply to think about some of my first thoughts and feelings when Marshall was born.  The overwhelming feeling of shock was understandable, especially since there had been no indications that anything was different, but the feeling of disappointment that lingered for weeks still makes me want to crawl into a hole.  And all around us at Sick Kids were other parents who cried in the NICU rooms while they held their fragile babies, wondering (as I did) about their child’s future.

For the first few weeks, I gave up, in every way.  It was truly too hard to bear.  And with each discharge from and then subsequent quick return to the hospital for extended stays, the despair grew.

But somewhere around July, as Marshall settled into his longest stretch out of the hospital, I started to see a point to living again.  It was a small glimmer, but it was there.  How could I not love this little guy, who was randomly dealt this tough start to life?

How cute does he look in that hat?!?

The toll that 2015 took on our family was heavy.  I stopped taking care of myself as soon as I stopped caring about myself.  I ate whatever I wanted, put on a bunch of weight, and fell apart more times than I could count.  I was a less-than-stellar husband and father much of the time as I cocooned myself in my singular task of protecting Marshall.

A friend recently asked me what my problem was with making plans weeks in the future, suggesting that I had no good excuse for not being able to set a date to get together with good friends.  At the time, I couldn’t answer when he wanted to know what my barrier was to not being able to do this.  I’ve been thinking about today, and I’ve realized that, other than my fairly anti-social preference, I have still not started thinking ahead to the future.  It still scares me.  Each night, sleep is either scarce or fitful, and some nights there is little to no sleep at all.  Then I wake up, go to work after a large coffee, and give my students everything I have.  By the time I get home, I’ve taken care of children all day, and then I want to give my children whatever energy I have left.  Sometimes, there is nothing left, but what can you do?  You start running on a deficit of emotional energy, there isn’t enough sleep to replenish it, and before you know it, it’s morning again.  Every day has been a struggle to make it to the next.  If I start thinking two or three days ahead, it becomes overwhelming.  I know I’ve been harder to reach than usual (and that’s REALLY saying something if you’ve known me for a while), and for that I am sorry.  I’m trying to change that.

Reading his new book – thanks Uncle Derek and Aunt Vikki!

2016 has to be a better year, if not an easier one.  We’re about three weeks removed from his most recent hospital stay, when he underwent his first surgery.  His breathing has improved a lot, he is sleeping for slightly longer stretches, and I might be imagining it or it might be random babbling, but we’re pretty sure he’s calling to me when he says, “Dadadada” while looking at me.  I still treasure that new baby smell that he has, and love the way he holds me fingers or puts his hands up to my face when he’s in my arms.

Finally, I want to think everyone who has supported us through this difficult year.  Our parents have been invaluable in their help with childcare, words of support, and feeding us when we were too upset or tired to cook.  To our friends who have offered us encouragement, listened to us cry, or dropped off surprise meals, thank you.  And to everyone who is reading and following along as we go down this uncertain but exciting road of life, we feel your support through the comments you have left for us here, on Facebook, through email, text messages, and cards.

Thank you.

I love how much Quinn and Marshall love each other.

Marshall meets Dad’s old friend


I wrote this three days ago and have hesitated to publish it because I know I come off sounding full of regrets and wishing that things were different – AGAIN.  I’m going to publish it anyway because, I suppose, I need to own those feelings and let myself know that maybe it’s ok for me to feel that way.

In addition, it’s Friday night right now and we’re back in the hospital for the first time since early-June.  Marshall has some sort of virus and has enough trouble breathing that he can’t stay asleep for more than a few minutes at a time.  So, that means he’s going to spend some time back at Sick Kids to be monitored and to make sure it’s nothing more than a cold.  Bridget’s there tonight, and then I take over tomorrow morning.

I met Pat when I was six years-old and a new student at the Catholic elementary school I attended in Scarborough, Ontario.  I didn’t know it at the time, but that was the start of a lifelong friendship.  We’ve done a lot of stupid things together.  If you’re bored, I wrote about one of those adventures in a newspaper a number of years ago.

I still remember being a fairly new student at the school, entering a class where many of the kids knew each other from their Kindergarten class the year before, and being nervous about meeting new people.  Pat handed me a birthday party invitation some time halfway through the year – my first birthday party invite!  I can still remember the party, the house, his black dog, and the fun we had that day.

I changed schools for my grade 7 year, but we still lived in the same neighbourhood, so there was still a lot of time spent together playing basketball or hanging out.  That summer, to mark the end of an era at the same school, Pat, our friend Jerry, and I spent an entire night watching really bad movies and drinking our way through FORTY-EIGHT cans of orange and grape Crush. Unsurprisingly, Jerry spent the next morning vomiting streams of purple liquid.

Before you knew it, we were adults and living in different cities.  I moved back to Toronto after a few years away, but we were never to live in the same neighbourhood again.  Pat now lives in the west end of the city, and I live in the east.  Toronto’s a big city, and with busy work lives and busy home lives, our get-togethers have grown progressively less frequent.

I last saw Pat on my birthday in September of last year.  Bridget had organized a surprise for me at a Mystery Room, where I was met by a group of good friends.  Afterwards, a few of us went out for a dinner of Korean BBQ.  Bridget was four months pregnant then, and we were blissfully unaware of how different our lives were about to become.  We parted that night with Pat and Christine the same way we always parted – with promises to get together again soon.

Marshall’s birth and the accompanying surprises have been like an episode of X-Files where time has been lost and all memory erased.  It seems unbelievable that I have not seen Pat since that day over one year ago.

This past weekend, I wanted to change that, so I packed Marshy into the car and we made the quick drive out to the west end of the city for a visit.  It’s been a while since I’ve had to introduce Marshall to someone who hasn’t seen him yet.  I still get anxious when I’m out with him in the stroller, but I’m starting to have times when I forget that people might notice something’s different and stare.  I had that briefly on Saturday, but soon it felt like old times again.  Things were clearly different.  I felt about ten years older than the last time I had sat in their living room.  I was happy to see them, but I definitely felt a sadness as I thought of how different my life is now compared to what I thought it would be when we were teenagers.

I love Marshall with all of my heart.  I wouldn’t change a thing now, mostly because wishing for that would be futile.  That much needs to be made clear first of all, but when you’re young, and you’re in class with your third grade teacher, no one tells you how hard life might be.  You believe that you can be anything and anyone you want to be – Prime Minister, an astronaut, a lawyer, a doctor, a professional basketball player (I’m still hopeful for that), a teacher – but no one tells you of the times when you’ll be sleepless, or desperate for a medical miracle, or you’ll wonder if there’s a light at the end of the tunnel.

I tell my students what my teachers told me thirty years ago – you really can be anything you want to be.  I tell them that because everyone needs to dream and to have hope.  Life would be too unbearable and crushingly daunting without dreams.  In many ways, I do believe that they can be anything and anyone they want to be.  I cling to that hope for them, much like I hoped for wild futures for myself when I was their age.  But really, all I would really hope for if I could go back in time would be for an easy life of happiness.

Pat and Marshy

I’m happy I took Marshall to see Pat.  Marshall is starting to be a little fussy when strangers hold him, but when Pat sat him on his lap, Marshall was calm, looking up at this new person inquisitively.  I left the visit feeling happier than when I arrived.  It felt like old times, sort of, but with some complications and challenges thrown in.  I think someone like Pat would have handled the changes we’ve had at home differently.  He’s much more laid back, and I doubt he would have gone to the dark places I’ve been to mentally since Marshall’s birth.  It was pretty neat to see Marshy in his arms.  I felt like I was introducing Marshall to two people who will be in his life in the future, two more safe people he will be able to be himself around in case life ever gets too crazy, two people I’m sure he’ll be comfortable being around as he grows older.

Marshall’s still a few years away from school.  When he finally takes his first steps into grade one, I hope he meets his version of Pat like I did thirty-three years ago.

Getting ready for bath time.
Getting ready for bath time.  Note the delicious and tender knee fat.

The Difficulty of Staying Positive

Quinn holding his little brother.
Quinn holding his little brother.

I can still vividly remember Nikolai Borschevsky scoring the most important Toronto Maple Leafs goal of my lifetime.  I was still optimistic at the age of seventeen that I would soon see my Leafs win the Stanley Cup.  He scored the series-winner against the favoured Detroit Red Wings, and the city went wild.  Disregard the fact that they didn’t end up winning the Cup that year or any year since; for at least one night, the city believed anything was possible.

In the years since, we’ve learned to adjust our expectations.  The team has very occasionally been decent, but it has mostly been filled with disgust and disappointment.  In mid-90s, after Borschevsky scored his goal, hopes ran high each year.  Steadily, expectations have been eroded so much that some seasons, I’m surprised they can find twenty guys that can skate.  I’ve learned expect little, and hope to be surprised.

This is the opposite of how I want to be with Marshall.  I have been telling myself that he is going to surprise people, he’s going to surpass all expectations.  To be clear, I don’t know yet what those expectations are, and doctors have cautioned us that it’s still too early to tell what’s going to take longer to develop or what’s going to be a challenge in the coming years.  Regardless, I have refused to treat him differently than I treated Quinn.  I take him out in the stroller every day for long walks and we sit on benches and have a bottle of milk in the warm, sunny weather.  We’ve been reading books together each day, and I see his eyes darting from page to page, animal to animal, colour to colour.  We roll around on the floor and cuddle, we sing songs, and I tell him how much I love him.

Yet through it all, I still find it so, so hard to ignore the voice in the back of my head that cautions me to be guarded in my optimism.  Personally, I’ve spent my life expecting little of myself and just coasting.  I’m tired of being pessimistic all the damn time.  I want to pour my optimism into Marshall’s life and dream of all the incredible things he’s going to do, just like I have hopes and dreams for Quinn.

So, it’s been a good, if tiring, few weeks since the school year ended.  I’ve been home with the boys, taking Quinn to his half-day summer camp in the mornings and picking him up at noon, spending the intervening couple of hours strolling around the neighbourhood with Marshall, and then keeping them both happy and fed each afternoon.  I had almost stopped thinking about the nightmarish start to Marshall’s life in February.

Today, we took Marshy to Sick Kids for his first appointment with his neurosurgeon.  Eventually – likely in the next half year or so – he will have his first cranial surgery.  Today was a chance for his neurosurgeon to meet him and do a quick check on his growth and progress.  (For any doctors reading this, I want to implore you to remember that parents that are seeing you are probably incredibly anxious and worried.  Please, please try and throw something positive into the conversation.  Anything.  Tell me he has a cute chin, or that his fat cheeks are delightful.)  Anyway, the doctor confirmed a worry we have had (I’ve actually been avoiding thinking about it or hoping it’s not true) about Marshall’s apparently lack of focus on our faces.  So many things could be causing this, and now we’ve got another ultrasound lined up, and an MRI which will require sedation.  His condition has so many factors that it could be a lot of things, and I suppose it could be nothing.  Still, the appointment crushed me.

Tonight I gave my little Marshy his bath.  I always get in the tub with him, as I did with his brother, and he has slowly begun to enjoy (I think) his baths.  I held him to me and cried tonight, sorry that I couldn’t protect him from all of his hardships, sorry that he would have to add another few procedures to his growing list of hospital visits.  He leaned his head against mine calmly, and I found comfort in his pillowy cheek as it rubbed up against my wet face.  I still weep and scream about the unfairness of the situation; why him?  why anyone?  But I know it does no good.

There are a couple of groups on Facebook – closed to the public for good reason lest the trolls begin commenting on the photographs – open to individuals with Apert Syndrome and families who are raising an Apert child.  I’m amazed at the number of members in the groups; in the larger one there are over 1500 members, quite a number given the rarity of the syndrome.  I’ve mentioned before that I find it hard to read updates posted to the group.  I’m still too much of a coward to read the posts without periodically crying or despairing, even though many of the messages are beautiful.

There are people with Apert syndrome who frequently post in the group, and one in particular reached out recently to Bridget after reading about our experiences.  Her message was one of success, triumph, and independence.  She has achieved more than I have in far fewer years, and that gives me something to hold on to.  I am so grateful for her unsolicited sharing of her understandably private life.

Perhaps my expectations need to change a little given what Marshall is facing.  It will probably take him longer to hit milestones such as crawling and sitting up, although I still don’t want to believe it.  I need to find a balance between my hopes and reality.  I know it’s not my life that he’s living, and my job is to be there for him and to show him love and support.  It’s just so hard to watch it all unfold feeling so powerless.

Marshy, I’m not giving up on you, and I’m sorry if you ever see me looking sad.  Sometimes, I just need to let out all of my fears so that I can be strong for you.  I believe in you – far more than I believe in the Leafs.

I love you my little boy.
I love, you my little boy.