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.
(I have barely slept in two days as I write this, so it’s a bit of a mess. I just read it over after finishing it, and it’s disjointed and not ready to put on the blog, but right now, I just want to get the thoughts out there and I’m too tired to edit it. Sorry!)
I used to play a ridiculous game to pass the time on the subway as a teenager. I was so good at it, once I knew my relationship with Bridget was pretty solid, I told her about it and made her play it with me. The game was simple – look at a random passenger and immediately come up with a celebrity look-alike. I couldn’t figure out how to do any of my Calculus homework, but I’ll be damned if I didn’t once see a dead ringer for Dan Akroyd’s character from Spies Like Us once upon a time.
When I take Marshall to an appointment at The Hospital for Sick Children in Toronto, my demeanor is the exact opposite of the subway game. In waiting rooms – especially at Sick Kids – I’m consumed with stress, back sweating, pacing back and forth with Marshall in my arms, trying to keep my eyes down, because looking up means knowing who’s watching the patients.
Let me give you an example. Today, we had an ophthalmology appointment at 1:00 p.m. This is the worst time to have an appointment, and the worst appointment to have. It’s right after lunch, so some of the staff have probably been taking their much-deserved breaks, during which time appointments have backed up. And whereas needing to see the craniofacial team is not something most parents, thankfully, need to do, a lot of children have issues with their eyes and vision. So, it’s always a madhouse in the eye clinic waiting room. You can actually taste the desperation of the parents. You would probably be able to hear it too if not for the generally unsuccessful attempt by the staff to distract families with Toopi and Binoo on the television, and more significantly, the frustrated wailing of a dozen tired and uncomfortable children. I’m scared of flying, but I would rather fly over the Pacific Ocean with the crew from Lost than go to the eye clinic.
When I walked in with Marshall in the stroller, the chaos was in full swing. The hierarchy was already established, but with each new family that walked in, it became more apparent. I am still very conscious of the fact that Marshall looks different, but usually people don’t give him more than a passing glance (their loss!). At the eye clinic, though, everyone looks around. Because it’s such a commonly used clinic, you get the full spectrum of children and their conditions there.
A few people look carefully at everyone who walks in. Typically, it’s children who are not used to seeing so many other children with differences, but today there were definitely a few parents who spent a little much time staring, although I’m not sure they’re aware of it. There was a sweet little girl who did a subtle double-take when she noticed Marshall’s fused fingers.
Then, there are some, like me, who are parents of children with differences. I was simultaneously trying to avoid noticing some stares while also taking in the chaos around me. I’m always wondering what’s going on in the minds of parents of children with challenges. I want to ask them how they’re doing, how they’re feeling, and how they make it through each day without wanting to scream and cry at least six times. This line of thinking always leads me to an unhealthy place, wondering if other parents see me with Marshall and breath a sigh of relief that their child doesn’t “have it as bad”.
Today, there was one family that got a lot of looks from the rest of the room. It was hard not to look up when they walked in because the son – probably about twelve years old – was having a hard time walking without bumping into tables and chairs, and was making loud noises. His mother held his hand and guided him around the room with the most beautiful patience. For a moment, I felt pity for her and how hard her life must be, but then I realized that she didn’t need the pity. It did nothing for her. I was in awe of her calmness and how little she noticed the people watching her and the chaos in the waiting room. The father soon entered and together, the three of them sat down together by the touch screen game in a corner of the room. I watched the father embrace his son at one point, kiss him on his forehead, and tell him how proud he was of him and how much he loved him. It was a humbling lesson in how to not give a shit about what people see or think of your child. They were the calm in the centre of the eye clinic storm.
I’d like to say that this experience will make future visits to the hospital less stressful. The reality is that I’ll probably still walk out of the hospital soaked in sweat and exhausted, but hopefully I’ll spend more time enjoying having Marshall in my arms instead of worrying about what everyone else thinks.
I had surgery once, about eighteen years ago, when I broke me leg. I remember waking up and being on a morphine drip and feeling euphoric. Unfortunately, I thought I was a tough guy and insisted on checking myself out of the hospital despite the doctors’ warnings that they weren’t going to give me morphine to take at home. My friend Steve picked me up, and I proceeded to spend the next week in a sweaty, delirious agony. I was definitely not tough.
Marshall has been on morphine since coming out of surgery Wednesday evening. He’s being weaned off it slowly, but I can’t imagine how painful it must be for him when it wears off now that he’s taking it orally and not on a continuous drip. They drilled into his head through his mouth to widen his nasal passages. The thought of that gives me shivers. He’s sleeping next to me in a constant observation room (he’s out of Intensive Care), probably dreaming about cats, vats of breast milk, and board games (I, too, dream about two of those three items).
His appetite is still poor; I can’t blame him for not wanting to eat with a swollen mouth full of stitches and a swollen throat from having his tonsils and adenoids removed. The poor guy fell asleep while I was feeding him in a high chair last night.
Other than an overnight stay for a sleep study last month, we haven’t had to spend any nights at the hospital since June. I had forgotten a lot of what that’s like. The noises. The lights. The constant crying and moaning from patients in pain. The slippery vinyl of the armchairs that fold out into a makeshift bed. Waking up and going to work but not being sure what day of the week it is.
I listened to an incredible episode of the podcast Death, Sex & Money yesterday. The episode focused on a mother of two teenaged boys with autism. The episode opens with her saying that if she had known what it was going to be like, she would never have had children. I got choked up hearing that line; in the early days after Marshall’s birth, the same thought selfishly crept into my mind. Another incredibly heartbreaking sentiment from the father was that he says he would have been a great father, even though his partner says he is an incredible dad. The reasoning behind that line is that there are so many things they thought they would get to do as parents, and none of it has happened like they expected.
Life is so fickle and random. We were so, so close to having an average two-child family, but instead, this is the path we’re on. I’ve spent so much time with Marshall that there’s no way I would wish him – as he is – away even if I could, but I’m looking at my little fluff next to me with bloody foam crammed up his nose and it makes me angry and sad still. I’m definitely more hopeful for the future than I was nine months ago, but I’m not sure I’m any less scared. This was the first surgery of his life, and unfortunately, not the last. With every procedure, though, I know it gives him a better quality of life and a better future, so I hold on to that.
Again, thank you to everyone for your support this week. Thanks to the surprise meal drop-offs, I’ve gained about ten pounds and can no longer fit into my pants, but then again, I’ve always liked the look of hospital gowns.
Here’s to a bright future of cats and board games.
Restless night last night with the surgery today. We both took the day off from work to be here with Marshy. Keeping him occupied from 9:00 a.m. until 1:00 p.m. without any food or liquids was easier than I thought it would be. We just took turns lugging the turkey around the waiting area. I was probably more difficult than he was.
It’s 2:30 p.m. now, which means he has been in surgery for about an hour. He probably spent much of that time with the anesthesiologists, so surgery is probably just beginning now. It was hard to pass him over to the doctor. He looked so cute in his little hospital gown. We gave him big kisses and now, it’s a waiting game. Thank you, everyone, for the messages of support and love.
Thank goodness for free Wifi in the hospital and the Ronald McDonald room. I’ve spent more time in this room (for families of patients in certain wards) than I have in my own basement the last nine months. It really is a refuge for parents who are too tired to think and need a place to heat up food, take a nap, watch some television, or, in today’s case, resist eating some treats that someone has brought in:
FINALLY – after months of asking, Bridget has agreed to write down some thoughts:
“How are you guys doing? Are you ok? Do you need anything?”
These are the 3 most common questions we have received since Marshall’s crazy entrance into this world on February 21st, 2015. So I thought I’d take the time to actually answer those questions now.
How are you guys doing?
I can only speak for myself but, honestly, it depends on the time of day you ask me. On a weekday morning, when I’m running 40 mins late and trying to get two kids out the door, I’m not ok. At that time, I feel like an epic failure who can’t do anything right and indignant at the same time, that I don’t have full-time domestic help. Fast-forward to the minute I sit down at my desk at work and I feel like a superwoman who should have THUNDERSTRUCK played loudly on the school PA as I enter the building because, hot damn, I am DOING IT ALL!! At dinner time, I’m back to being a failure and then when the kids are both in bed, Marshall snoring loudly and Quinn barely making a sound, I’m mostly anxious to get in bed and figure out what I’m going to watch on Netflix for a few minutes to turn the day off and gear up to do it all over again tmrw.
Wait, did you mean “how are you guys doing now that you have, what the Ontario government refers to as a “severely disabled” child?”
Ah yes, that *is* what you meant.
It’s hard to answer that question because it’s like asking me how I feel about not having feathers or not being able to breathe under water or climb a tree like a squirrel. Marshall is Marshall and he is as much a part of me as my own arm. I don’t know how I feel about my arm but I know that it’s a pretty darn important part of me and if I didn’t have it, life would be very different than it is now.
Are you ok?
Our family (Team Ku) has experienced some pretty incredible acts of selflessness and generosity these last 9.5 months. In our darkest, most heartbreaking days, friends and family have put their own lives on hold to drag us up from the sorrowful pits of despair. I’ve written about the Ronald MacDonald House Lounge on the 4th floor of Sick Kids a few times but this place is something else. Here, Dennis and I are able to spend anxious hours together with homecooked food from friends and neighbours waiting for Marshall to wake up or have a procedure or, like today, come out of surgery. It allows us to catch a nap in a comfortable place, turn off our brains with a bad cooking competition reality show or catch up on the blog.
There were some pretty significant times I can remember where I was definitely not ok. When Dennis and Marshall went by ambulance to the hospital the day he was born and left me sobbing in a puddle of afterbirth, alone in my basement with the midwives buzzing around doing midwife-y things, I was definitely not ok. When we brought Marshall back to the emergency room and his O2 saturations dropped down to 30% and the team called an “emergency response” for neonatal respiratory/cardiac failure and 20 nurses and doctors came running full speed into Marshall sick bay and he was surrounded 3-people-thick on all sides and I was so far away from him, frozen in fear with no voice to speak up, I was definitely not ok. When the geneticist told us that we’d be lucky if Marshall’s cognitive abilities allowed him to be able to “count money and use cooking equipment” in order to live independently, I was absolutely not ok.
Now? Now, when I come to Sick Kids, I feel like I did when I was in high school in Grade 12. I know all the good spots to hang out and I’m not afraid of the big kids anymore. The emergency room is old hat now. Marshall’s doctors and nurses don’t have the “final say” in his care. We do. His parents. And there is something awesome about finding your voice with healthcare professionals. As for Marshall being “lucky” to live independently, after connecting with other people in the Apert community, we now know how very uninformed that diagnosis was. In fact, not two days after we had that talk with the geneticist, I got a message from a woman with Apert who is in the process of completing her PhD. Just like with Quinn, there is no bar, no limit and no ceiling as to what Marshall is going to do in his life.
Do you need anything?
If you don’t know my husband, his mood is directly related to how close he is to food. Food is close by = happy Dennis. Food is not available = look out, everyone. So, let it be known that we will never say no to food. In all seriousness, those food drop off and deliveries baffle me. I don’t understand, for the life of me, how you people do it. I can BARELY feed my own family let alone cook up delicious food for another family. You are all an anomaly to me. Thank you. THANK YOU from the bottom of our stomachs and hearts!
4:45 p.m. – He’s out of surgery a bit early. His ENT surgeon Dr. Probst said it went very well. Tubes in the ears, took out his apparently huge adenoids as well as his tonsils, and opened up his nasal passageways. He’s going to have foam in his nostrils for the next week, so it’ll be mouth-breathing for the next while. Marshall will be in ICU tonight with a nurse monitoring him. Waiting to see him in about half an hour.
He’s spending the night in the ICU with Bridget checking on him periodically. I’ve gone home for the evening, hopeful that the surgery will make a huge difference in his breathing. This was the first of, unfortunately, many surgeries for Marshall, but I suppose it went as smoothly as we could have possibly hoped. He will probably be in the hospital for a week or so before they take the foam gauze/stent thingies (very medical term, I know) out of his nose. Thank you, everyone, for your support. Here’s a photo of the poor little muffin in his ICU bed. Goodnight!
It’s 7:20 on a Friday morning as I type this. Marshall and I spent the night at the hospital doing a sleep study. The hospital wanted to try some sort of high-flow oxygen machine to see if it would alleviate some of his sleep apnea between now and whenever he gets his surgery to have stents put in (at the moment, in January). I don’t know how Marshall feels as he can’t talk yet, but I feel like I’ve been hit with a sledgehammer in the head. I don’t think the therapy worked, but we’ll have to wait for the results. He sure as hell didn’t sleep better with all of those wires attached to him, and it must have been tough for him to have the continuous stream of air forced into his nose. I managed to get a bit of sleep, but I also feel like I could sleep for another twelve hours straight. Thank goodness for coffee, right?
After Marshall was born, a lot of people told me that Marshall would teach all the people who are in his life so much. That made me really, really angry. Why should MY CHILD be the one who has to carry the burden of teaching people lessons about life? What kind of responsibility is that to give my child? I still feel like that. I HATE the thought that sure, some people are going to become more empathetic or caring because of their interactions with Marshall, while Marshall is going to have to put up with people staring and pointing at him because he’s different. Bridget has already had a little girl come up to her at a playground where Quinn was playing and ask why Marshall’s head looked different. She was asking innocently and without any hint of malice, but when I heard the story, I started crying anyway. I should get a job in soap operas.
The truth, though, is that this experience of raising Marshall and learning about Apert syndrome has taught me a lot about myself and the world.
I’ve learned to be a better father to Quinn. I think Marshall’s rocky start to life has made me appreciate Quinn’s good fortune and health. Oh, don’t get me wrong – it’s not all roses between me and Quinn (see below!), but in those times when I get to devote all of my energy and attention to Quinn, we’ve had some amazingly tender moments.While I’m on this point, I want to thank the woman on the College streetcar on Wednesday night at 6:30 who said something to be quickly before getting off at her stop. Quinn and I were talking about his day at school, what it meant to buy a birthday present for someone, and how it didn’t mean we had to get things when it comes to our birthdays. I was just following what I really believe and having a great talk with Quinn. The stranger, who I guess was sitting behind us, leaned over and said, “Wow, you are an amazing dad.” Whoever you are, thank you for your compliment. It was a surprise and touched me so, so deeply. I have been thinking about your words and holding on to them during the tough moments for the last few days, and will continue to use them as encouragement.
Quinn is going to be an amazing and protective big brother. Hey, you never know how sibling are going to be. I know plenty of people who don’t talk to their brothers or sisters. It’s still early days, but Quinn already knows Marshall is different from other kids. He loves holding his little mitten hands. He starts and ends each day with a loving hug and kiss for Marshall. He gets upset when he thinks about Marshall going to the hospital, and wants to spend time with him.
I cannot look ahead to the future right now – tomorrow is too far away. Taking it one day at a time is such a cliche, but that’s all I can handle at the present. Every day for me has turned into a battle to make it through the day and to bed. I definitely don’t spend enough time with Quinn and Bridget because I’m so tired all the time. I was never a particularly patient person, and being around me now is like walking on eggshells for the rest of the family. Thank goodness for grandparents who have been so invaluable in helping with cleaning, cooking, and childcare whenever everything gets too crazy.
There has to be hope. Even with the struggle mentally to make it through each day and night, there has to be some hope for the future. Out of the hospital for a long stretch between June and November, Marshall is slowly catching up in his development. Nothing feels better than coming home after a tiring day to find him in his Jolly Jumper near the front door. He hears me and jumps to turn himself around. And then there’s the smile and twinkle in his eyes when he recognizes me.
The school system is moving in the wrong direction. Class sizes getting bigger, special education programs folding, and labour negotiations taking forever every few years in Ontario. As a society, whether or not you have kids, you have a vested interest in children getting the best education possible. This is not the area to save money. These are the future leaders and citizens of our world. I fear for Marshall’s entry into the school system if he needs extra support. If you are a parent of a child with special needs, do not let the school system push you around. Speak up and get your son or daughter the education he or she deserves.
Just as I’m about to post this, I’ve received an email from Bridget that the results from last night’s study are in: it didn’t work, and his sleep apnea is worse than it was a few months ago. Hopefully, the surgery date is pushed up from January and we get Marshy more of what we all need – air.
I’ve been sleeping on the floor in Marshall’s room each night. Sleeping is, of course, something that doesn’t happen much when you are the parent of most seven month-olds, although by this point Quinn was starting to sleep for most of the night, waking up once on average. Once I can handle. Add Marshall’s difficulty breathing and sleep apnea, and it’s a recipe for midnight disaster. Between 7 p.m. and 7 a.m., he’ll wheeze and gasp for breath frequently, wake himself up with his breathing troubles, and need to be soothed back to sleep with either a bottle or some rhythmic bum-tapping up to half a dozen times.
It was getting to be all too much to drag myself out of bed in the middle of the night to make the ten-step walk to his room, pick him up, and rock him back to sleep. I just couldn’t do it anymore. So, I did what ever desperate father with a wish for sleep deprivation-caused heart failure would do – I moved myself into his room.
As I type this post, Marshall is in his crib next to me in his small room, wheezing like an old pickup truck. He snores not unlike an old dog might (or even his old man), but with each little whine, I tense up, ready to prop myself up, reach my hand over the railing, and start patting his diaper-clad bottom. If that doesn’t work (and at least once or twice a night it doesn’t), I resort to the precious breast milk that Bridget is still pumping out a few times a day.
The first few nights of this were great. It was like camping out in the woods. I’m on the floor with my invaluable CPAP machine, a couple of books, there’s a little reading light next to me, and there were even a few times when I had the Blue Jays baseball game on the computer (sound muted, of course). But just like the overnight stays at the hospital followed by days of work earlier this year, it’s starting to catch up to me. I’m so tense with each sound he makes that I might as well not sleep at all most nights. If it weren’t for the massive coffee each morning, I’d be in trouble. Boy, when the caffeine kicks in just as the morning bell rings, I’m raring to go! As an added bonus, my students have enjoyed the spontaneous dancing that happens as the coffee hits my system hard.
Marshall is scheduled to have stents put in to hopefully ease his sleep apnea symptoms. This is supposed to happen within the next few months, and for now, we’re trying to stay positive until it happens. Me, I’m just trying to hold off the inevitable nervous breakdown until the winter holidays when I can at least curl up on the couch and sob to myself while holding my cats and watching ’80s teen movies. Every time he gasps for breath, I think of the harm it might be doing to his brain development. This surgery, while it will worry me to no end when it happens, can’t come soon enough for my liking.
The euphoria of all the recent good news from his ophthalmology tests, his MRI, and his CT scans is hard to remember when it’s 2:48 a.m., and I’ve managed to squeeze in only an hour of sleep since the last stirring. Thankfully, the warm feeling I get when I hold his fat, sweaty body in my arms calms me down. Sure, sometimes I cry out of frustration, but when he reaches for my fingers with his little mitten hands, all is good again.
Tonight, no one in ward 4C at the Hospital for Sick Children will sleep, because I am here for an overnight stay with Marshall. I have, as one sleep lab technician called it, one of the worst cases of sleep apnea he has seen. I don’t think this was a compliment, but I’ll take it. For the past year, I’ve had a CPAP machine, and it has changed my life. If I had to choose between Bridget and my CPAP, it would be a close call.
Marshall is staying overnight for a sleep study of his own, and I am here with him. I had too much stuff to bring with me, so I have left my CPAP at home. I miss her already.
We’re here to determine the severity of his probable sleep apnea, a very common thing for children with craniofacial anomalies. In some cases, children need to have their tonsils removed to ease their breathing. If he was older, Marshall might undergo mid-face surgery to increase the size of his respiratory passages. In my nightmare scenario (please, please, please no!), a tracheotomy is performed. I know it happens a lot in children with Apert, and I’m hoping he doesn’t need it.
When we’re done with the sleep study tomorrow, we’ll head right on over for at least two more appointments in the hospital, including an ultrasound on his brain to help determine a timetable for surgery.
From my perspective, Marshall has changed so much for the better over the past few weeks. He’s rolling around constantly, he’s vocalizing, and he seems much more attentive and alert. However, when the doctors see him, so many question marks are still there for them. It’s hard to stay positive when the medical professionals need to look at what’s “wrong” and figure out the best course of action.
That’s all for now. Thank you, again, to everyone who has been reading and following along with Marshall’s progress. Many people have sent us messages of support, and I encourage you to ask us if you have questions about Marshall’s condition. I may not have the answers, but I promise, I can make up something really interesting.