Cold milk, warm cookies, & magic.

Every evening after supper, my son and I take the dog for a walk. And every evening on our walk, we have the same conversation – one of us will ask the other, “If you were at Disney right now, what would you be doing?”

No matter how hard his day was at school, or how intense his anxiety and depression, talking about Disney brightens Puck’s mood. His face animates as he tells me which park he’d be in, and which ride or attraction he’d visit. We talk about which restaurants we’d go to, and which treats we wish we could eat right now (Mickey bars and Mickey waffles are two of our favourites). We imagine which resort we’d be staying at, in which type of room. We even reminisce fondly about the Orlando airport, or the beautiful boat ride from Port Orleans French Quarters to Disney Springs. By the time the walk is over, we’re both feeling happier and have planned out a whole day’s activities for a vacation we aren’t even planning to take any time soon. And we’ll do it all over again the next night.

IMG_0170Yes, we are one of *those* families. We’ve been to Disney – a lot. We’ve been on a Disney cruise. We’ve gone on other vacations as a family, too, but it’s Disney that holds our hearts.  I’ve been fortunate to travel a fair bit. I’ve been (and lived) from coast to coast in Canada, and I’ve traveled throughout the United States. I’ve traveled to several islands in the Caribbean, and several countries in Europe. But it’s Disney that we keep returning to as a family. Some people don’t get it, and question why we go back over and over. It certainly wasn’t what I had planned. I was going to show my kids the whole world. But for us, Disney provides a dependable happiness and a retreat from reality that we haven’t found anywhere else. The rest of the world can wait. We’re searching for a world of magic.

Don’t get me wrong: my history of vacationing at Disney is not one of perfect family time or unbridled joy. We are not the happy family you see in commercials. Each trip has come with its own challenges, but also lessons. As a teen, I traveled with a mother who actually didn’t like Disney at all, and a father who wasn’t keen on most rides. I learned to appreciate everything else the parks have to offer. My first trip with children of my own was as an extended family. At the time, my father-in-law was in the early stages of dementia and was confused and prone to getting lost. My mother-in-law was recovering from a hip replacement but in her typical no-nonsense fashion, refused any help. I learned to slow down and not try to do everything. 

Other trips have been planned to balance my daughter’s “let’s do everything!” style with the ups and downs of Puck’s constellation of challenges. Sometimes, sounds were a problem for him, so we learned which attractions or places to avoid. On other trips, it was the crowds, so we learned where to watch fireworks in a less intense setting.

P1000457
Tinkerbell and Daisy in a deep fairy discussion.

Although we used a travel agent for our first two trips, I quickly became an expert at doing the planning on my own, focussing on my family’s special needs. I learned what Disney had available to help us, and created detailed itineraries that helped Puck understand what was going to happen each day, while still giving us the flexibility to have fun. I learned how to help Daisy do the things that would make magical memories while keeping Puck happy and calm.

We go back because even though Disney can be a non-stop, intense destination, it actually does a lot to cater to families like ours. Never was this more clear than on our last trip. My father-in-law’s dementia has worsened to the point where it is impossible for him and my mother-in-law to travel on their own. We knew it would be hard, but we wanted to take one last big trip together, as a family. 

I was so hesitant. I knew caring for him and my mother-in-law (who is game for anything, although frailer than she’d admit) on a cruise and then at Walt Disney World was going to be a challenge. On top of that, we had our own kids to think about – including Puck, who would turn 12 on the trip, and who had been having a terrible year with clinical depression and anxiety. I honestly didn’t know what to expect. Even though a dear friend and Disney travel specialist helped plan the details of the trip for us, I had very low expectations.

We didn’t get off to a good start. Puck’s anxiety about leaving his routine kicked in at the airport, and he was in the bathroom being sick right up until our flight boarded. My father-in-law had no idea why we were on a plane or where we were going. We spent the five hours of travel explaining to him, every ten minutes or so, that we were all going on a vacation together. 

Everyone was tense.  I was sure we’d made a big mistake.

We were leaving on a cruise the next day. But first, we’d have a night at a Disney resort. We got settled in our rooms and headed to the Magic Kingdom for the evening. My father-in-law had been agitated and confused, asking repeatedly where we were. Puck was weak and anxious from being sick and was popping ginger tablets like candy. The rest of us were tired and a bit defeated, feeling certain the trip was going to be a disaster. 

But when we got off the bus, got everyone through security, and walked onto Main Street, everything changed.

My father-in-law stopped and stared at the castle in the distance. “Oh!” he said, a big smile spreading across his face. “We’re at Disney!”. And he proceeded to tell us stories from visits 40 years earlier, when he’d gone there with his young children. He could remember those trips in detail, and while sitting on Pirates of the Caribbean, he marveled at how things were just as he’d remembered. He grabbed Puck’s arm and said, “Oh, the jail scene with the dog is coming up next!”

He couldn’t remember how we got to Florida or why, exactly, we were there, but somehow, he remembered what scene was coming up in a ride he hadn’t been on in years. He was smiling and relaxed and having fun — something that happens too little, these days. 

Puck, too, changed as soon as we were in the Magic Kingdom. The anxiety melted as he saw familiar sites he loves. Puck’s challenges make him a bit less mature than his age would suggest, but that doesn’t matter at Disney. Everyone – even me, who was just turning 49 — can be a child. There is no pressure to be mature, and no one judges you for acting like an excited child. He can act younger than his age. I (a grown woman) can get excited to the point of tears over hugging Eeyore. It’s all good.

10505510_10152192182686471_4534765150992812887_n
You’re never too old to hug Pooh bear.

Later that night, when we got back to our resort, my father-in-law wanted a ‘bed snack’. We went to the quick service restaurant, and my mother-in-law chose some cookies for him. At the cash register, my father-in-law became distraught: he couldn’t eat cookies without milk, he wailed. He was on the verge of tears. My mother-in-law panicked; she didn’t know where the milk was, and she couldn’t leave my father-in-law to go look. She was worried about him making a scene, and not being able to calm him down. The cashier came to the rescue.

“Of course you need milk!” she assured him. “You can’t eat cookies without milk! Let me get you some.” 

My mother-in-law was fretting, though, because she hadn’t brought enough cash for milk (and didn’t understand she could charge things to her room).  The cashier waved off her concern.

“Don’t worry about the milk,” she told her. “It’s a gift from Mickey. He wants Mister to enjoy his milk and cookies.”

When my mother-in-law told me this,  we both cried. She didn’t remember the name of the cashier, so I went to the front desk and thanked asked them to thank the restaurant staff for their kindness.

When we got on the cruise, warm cookies and a glass of milk were magically brought to my in-laws’ room every night at bedtime. Screen Shot 2018-09-29 at 11.52.44 AM.png

THAT’s why we keep going back to Disney. 

Yes, it can be a crazy, overwhelming place, but even for a family like ours (with proper planning) it can be the best vacation you’ve ever had, with people who work so hard to make magic for you. For families like mine — with parents exhausted from trying to manage and micro-manage every detail of the day, who have come to expect that people will not understand, will judge, or will let you down — this is amazing. That’s why my son and I talk about it every night when we’re walking the dog. It’s an escape, to be sure, but it’s also familiar and warm. It’s a place where burdened adults can be children, even just for a while, and where children who sometimes don’t feel confident can discover they are actually brave enough to ride Splash Mountain. 

Even though we talk and plan every day, it’s not likely we’ll be going back anytime soon (our finances don’t stretch to that, at the moment). But still, we dream. We talk. I help other people plan their vacations and live vicariously through them. In fact, I’ve actually thought about becoming a Disney vacation planner, so that I can help other families with special needs realize that spending time together on such a trip is not logistically impossible. I’ve done a lot of work in my life to improve services for people with special needs and mental health issues on a policy level. Maybe I could also create some magic for people at a family level. 

Families like mine need some cold milk, warm cookies, and a heaping serving of magic to keep going. Really, these days, we all do.

Advertisements

The wolf and the trail of breadcrumbs

Over the past two years, I’ve shared a story at a few national conferences on digital health and patient engagement. It’s the story of how we first learned that Puck has Tourette Syndrome (TS), and the first time I realized how much energy and know-how it would take to navigate our health care system. It was a disempowering experience, but looking back, it pales in comparison to the messes we’ve encountered in trying to access care in the mental health system.

When Puck was eight, he started having severe headaches. He’d already been diagnosed with severe learning disabilities a year earlier, but he’d never really had any physical health issues. Our family doctor believed his headaches were migraines. She recommended getting some blood tests, and she suggested a CT scan just to rule out anything else.

We got the CT scan within a week. A few days later, on the Thursday afternoon before Easter, my doctor phoned me. (You know that’s never good: it’s usually the office manager or receptionist who phones, not the actual doctor.) She told me that  ‘something suspicious’ had shown up on the scan of Puck’s brain, and that while we shouldn’t assume the worst, we should prepare for it. 

There have been few times in my life when I felt as weak as at that moment.

The doctor said she’d send a requisition for the next available MRI, so that we could get a better idea of what was on Puck’s brain. All we could do was wait.

Weeks went by. Every time Puck got a headache, I imagined a ticking bomb in his head. I waited to hear about our MRI appointment. At work, I phoned my home answering machine every hour, hoping there’d be a message. There was nothing. After almost three weeks, I phoned my doctor’s office. The receptionist put me on hold for a long time, and then came back and said, “Oh sorry – we actually forgot to send that requisition. We’ll do it right now.”

And so, we waited some more. 

At the time this was happening, I’d recently finished working as the senior policy advisor to Nova Scotia’s Minister of Health and Wellness. I knew first-hand about the challenges with the health system. I read the frustrated letters from people who couldn’t access the care they needed in a timely manner. Almost weekly, the Minister and I spoke with people who were upset they couldn’t access specialized treatments or drugs they needed (or believed would help). I had thought that most people’s frustration with our health care system came from needing something extra; something more than our health system could reasonably offer. But now, going through this myself, I knew it was about the whole system: the lack of coordination, the lack of empathy, the lack of timely access to even the most routine care. 

Don’t get me wrong: I am a huge supporter of our Canadian health care system. But I believe many of the problems we face are not a Canada-only problem. So much of people’s frustration with any health system comes from the complete lack of compassion and information – the lack of patient connection to the decisions and communication about our care. Those are problems found in most systems, whether universal or insurance-based. Information IS power. It gives you a sense of control over a very out-of-control situation, and that goes a long way to giving someone peace of mind. Not knowing where we were in the system, or if anyone was even paying attention, was a horrible, powerless feeling that only compounded the powerlessness you feel when dealing with a sick child. 

Around this time, I complained about the whole MRI situation to a physician I knew through my work. She told me she might be able to help. She said her clinic used a personal health record, and that she’d be willing to take Puck on as a patient. I didn’t see how a health record on a computer could possibly help, but I was willing to try anything. So she helped me set up Puck’s record, sent him for loads more blood tests, and sent an MRI requisition to all of Nova Scotia’s then nine health districts to try to get us in faster, somewhere.

Puck had the blood tests the next day. Two days after that, I got a notification on my phone that the test results had arrived. I could go online and see all of them, in detail. I’m not a medical professional, and I can’t interpret medical tests. But each result came with an indication of what was considered a normal range, so I could see where Puck’s results fell. The doctor had also sent a note explaining which test results indicated a need for follow-up. Finally, I had information. It might not be the ‘smoking gun’ that would tell us what was causing Puck’s headaches, but it was, at least, a piece of the puzzle. I could look at those test results, and know what things I could STOP worrying about. For a parent with a vivid imagination and not a lot of information, that was powerful. Being able to access health information online was a huge step in addressing the power imbalance that exists between health professionals and patients.

We managed to get an MRI in another part of the province with a shorter wait. The doctor had also arranged an appointment with a neurologist at the children’s hospital (in a brighter, far more cheery part of the hospital than the mental health ER we later became too acquainted with). The neurologist was a delight. He played soccer with Puck in the hallway, put him at ease, and told us, happily, that the ‘suspicious thing’ on Puck’s brain was nothing to be concerned about – it was just an enlarged space between blood vessels. The headaches were, indeed, migraines. 

However, through all the testing and family history he did, he discovered that Puck has Tourette Syndrome. Incidentally, I was diagnosed with OCD at the same time – the two often go hand-in-hand, and I’d been living with manageable symptoms at the lower end of a spectrum my whole life. (My partner told the neurologist my symptoms made me ‘mildly annoying to live with’. I told him they made me ‘quirky’.)

 As it turns out, these things were all part of a long trail of breadcrumbs that we’re still following for Puck – a trail that now includes learning disabilities and severe mood disorders. I suspect we’ll soon be adding new breadcrumbs to the trail. Every time I think I’ve got the trail figured out, the signposts disappear, or the trail stops altogether – or the Big Bad Wolf, in the guise of the health care system, comes along and gobbles up the trail, leaving us lost and alone.

There is no easy way for parents to navigate complex health systems. Throw in both physical and mental health systems — which, after all, are not integrated and are two completely different experiences — and it’s twice as confusing and time-consuming to navigate. As a parent, you have to know who to talk to, and you need to know how to speak their language. 

I know how lucky I am. I had connections I could call on for help. I knew the language. Most parents don’t have that. I remember sitting and waiting, as Puck was motionless inside the MRI machine. I was so anxious, so terrified of what they might find. Seeing him stuck in there broke my heart, and I had a premonition that it was only the beginning of many such heartbreaks, as our journey through the health system unfolded. I remember, too, thinking of all the parents who couldn’t follow the breadcrumbs. Maybe they didn’t know who to turn to for answers, or they didn’t even think you should question your doctor. My heart broke for those parents…the ones who are still waiting by the phone, waiting for an appointment for a test that might give them answers, even though the requisition was lost weeks ago or sent to the wrong fax number. 

We have a right to expect that our information will be handled in the most efficient and compassionate way possible (are fax machines really that efficient, these days?). Parents with children experiencing a health crisis – whether that’s physical or mental – are in crisis, too. The system shouldn’t add further burden to these families asking them to create their own trails, alone.

We’ll never get back where we were before we started on this journey. And with this huge wolf following behind, eating the breadcrumbs…how will we ever find the trail that takes us where we need to go?