Once upon a time, there was a girl. She was bright and pretty and happy and came from a loving family. She worked hard and was loved by many. She loved to sing to the birds and animals.
One day she met a prince and they started courting. After moving to a foreign kingdom, they were betrothed and then wed. Before long, they welcomed their first-born, a baby boy, into their lives, followed shortly after by a baby girl.
Their lives seemed perfect. As the story goes, they were supposed to live happily ever after.
And that’s where the fairytale ends.
It’s funny how you never think anything bad will happen to you or your family. It always happens to other people, but not you. I mean, we grow up reading fairy tales, where everyone lives happily ever after. No one ever tells you that life isn’t like that. Fairy tales are a part of our education, and so we naturally assume that life will work out perfectly, and that once we meet our prince we have nothing to worry about.
So, when something bad DOES happen to you, or something goes wrong, it’s a shock. A great big, horrible, overwhelming shock. Because you are not “other people”, and bad things don’t happen in fairy tales, so they most definitely are not supposed to happen to you.
I used to be one of those people who thought everything would work out fine. I used to cruise through life, taking whatever came my way. And some of those things that came my way were HUGE, or at least I thought they were at the time. I remember discovering my boyfriend had cheated on me throughout our entire four-year relationship. I remember not getting the mark I wanted on my Higher School Certificate. I didn’t get the pay increase I was so sure I deserved. My parents moved to a smaller house and so I had to move out (I was only 24 at the time). My best friend and I stopped talking and drifted apart. My beloved grandfather died.
At the time all these things seemed huge, and I remember feeling completely overwhelmed. On occasion I even dwelled on how unlucky I was. Unlucky? Ha! But I still thought that things would all work out right, and that my life would still turn out a fairy tale.
I met my husband when I was 28. It certainly wasn’t love at first sight, but I knew before long that I didn’t ever want to be with anyone else. Only 12 months had gone by before we were moving to Tokyo, and 12 months later we were engaged (and secretly married). Three years after we got together, we were married in front of family and friends (none of whom knew we were already married) in a chapel in Manly, overlooking the beach and ocean. It was perfect. Everything about that day was unbelievably perfect. And to follow it up by getting pregnant on our wedding night was the icing on the (wedding) cake. I remember thinking, just days after our wedding, that things were going so perfectly and how lucky we were. I just didn’t realise that something big was going to happen, and it would be so big and change everything. And nothing would ever be the same again.
No matter how much you imagine your reaction in your mind, nothing ever prepares you for the news that your child is not only sick but is, in fact, terminally ill. This news was our “something” that changed everything. There was a moment of complete devastation and hopelessness, just after diagnosis, when my husband and I were in such a state of grief and despair that the thought crossed our minds to lie down as a family, take sleeping pills, and just leave this world together. They were very dark days. We couldn’t see into the future, we didn’t want to see. Instead of looking forward to a future that was exciting and perhaps spontaneous, we had to now plan ahead and do things much earlier than we’d expected. Suddenly there was an urgency to see and do things before it was too late.
Decision-making changed, and we realised that the decisions were made for us. Everything, from where we lived, to the house and car we bought, the holidays we went on, the food we ate, the schools we looked into, weekend plans, birthday parties, christmas presents, and the jobs that we took on were decided by our son’s disease. We no longer seemed to have options like everyone else. If we bought a house, it had to be on one level, with wheelchair access, wide hallways, large bedrooms and living areas, and close to good medical services and support. Our car had to be a mini-bus, able to be converted into a wheelchair-accessible vehicle. No SUV or sedans/wagons for us. I suddenly became a bus-driver. As for holidays, the more adventurous the less able we were to go. Ski trips are becoming a thing of the past, as are surfing holidays and camping out. Even a trip to the shops to buy groceries is difficult, as I have to push him around in his buggy and can’t take a trolley as well. Even those everyday things that we all take for granted can be difficult.
It’s also a well-known fact that over 70% of marriages end in divorce when there is a child with a serious illness or special needs. It is so hard on both partners. There is so much pressure to provide for your family, but there is extra pressure to ensure you don’t have to work long hours because time is precious and you’d rather spend it with your kids than holed up in an office. There’s constant appointments and consults, and therapy. There’s the behavioural issues that a child goes through, trying to deal with a disease ravaging their body, and taking out their frustration and anger on those closest to them. And then there’s that overwhelming sadness, and the anger that goes hand-in-hand with that sadness, that tears couples apart, that destroys much-needed intimacy and familiarity.
Males and females deal with grief differently, and that makes things even more difficult. Whereas females need to talk, and be comforted and occasionally become so absorbed in their grief and self-blame that they become emotionally detached from their partner, the male tends to keep a lid on things and let it build up inside until the day comes when they just can’t take anymore, and they explode. Or perhaps they don’t explode, but they have trouble dealing with those emotions. It festers and eats away at them, because they are supposed to be in control and they are supposed to protect their family, and they can’t. It’s all been taken out of their hands. And often that’s when marriages become strained, with a knock-on effect resulting in separation and divorce.
However, it’s not just marriages that suffer under these circumstances. Family relationships and friendships often struggle to survive. Upon diagnosis, most family and friends will reel in shock, and come to the aid of their loved ones. And that can often last for a few years. And then many of them seem to falter and “lose interest”, or bury their heads in the sand. I’m not saying they all do this, but it does seem to be pretty common amongst those I have spoken to. Some would argue that our expectations from family and friends are too high, but it’s no less than what I (and most others) would give in return if they were in the same situation. I guess it’s easy for them to “detach” as they don’t have to live with what we live with, day after day. They don’t understand our grief is so overwhelming that we sometimes have trouble making everyday decisions, and our thinking is occasionally anything but rational. They can go about their lives, whereas ours practically comes to a standstill. In simple terms, they can move on and we can’t. We can’t move on emotionally, mentally, or physically, and more often than not we are unable to move on financially. Whereas they can take their mind off the fact that their family member/friend is suffering, we can’t. It is in our face every single day, and moving on is not an option. Not until the day our child dies, and that’s not a day we want to think about.
The end result of this is that family becomes estranged, as do many friends. It’s hard work having any sort of relationship with a person in our shoes, so for many it’s easier to just cut ties. Or even to live in denial. Because then they don’t have to see what we see, hear what we hear, and feel what we feel. And then they don’t have us bringing them down, and they don’t have to understand or translate why we do what we do, or say what we say. The simplest thing is to cut ties, and who can blame them?
There’s a well-known essay called Welcome to Holland. When my son was first diagnosed with his disease, I was introduced to this essay. It talks about going on a holiday to Italy, preparing for it, and then finding yourself on the wrong plane, and going to Holland instead. I have included the essay below.
“When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting.
After several months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!” “Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place. So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around.
You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.”
When I first read it, it gave me a little bit of comfort. It was an analogy of what our life had become. And I used to recite this essay to others who found themselves in a similar boat to ours. But, truth be told, I hate Holland. I wanted to go to Italy, and I still do. But instead I am stuck in this country full of water, canals, and windmills. And my passport has been revoked so I can’t leave. And whilst I love tulips and windmills, and the canals are beautiful to look at, I still want to see the Sistine Chapel and Rome and the Amalfi Coast and Tuscany. And I never will, because I’m stuck in Holland. Forever.
So how did the girl from the fairy tale fare through all of this?
She tried to maintain her beautiful and gracious composure, but grief and anger were eating her up on the inside. She blamed herself for “giving” her son a poisoned apple, even though the medical reports indicated that wasn’t the case. But as a mum, you always blame yourself when something happens to your child. The girl from the fairy tale secretly hoped she’d prick her finger on a spinning wheel and go to sleep, so that she wouldn’t have to cope with watching her son deteriorate, and eventually die. And the girl from the fairy tale no longer laughed or resembled that happy, pretty, bright girl. In her place, there was a sad, frumpy, angry person, completely unrecognisable from the girl she used to be.
She lost her family, and she barely had a prince. Gone was her enthusiasm for life. She no longer sang to the birds, and she found that the sweet animals who used to keep her company now avoided her.
To this day, I don’t even know if there’s any flicker of her inside anymore, not even in her dreams. I think she’s dead. I think the evil witch finally killed her.
And I miss her.
There’s no happy ever after here, I’m afraid.