September 4th is a day I’ll never forget. The anniversary of D-Day.
It was on this day, Australian Father’s Day in 2006, that we were told our 2 year old son had an incurable and terminal muscle wasting disease called Duchenne muscular dystrophy. It was on this day our world fell apart. Each year, this date is difficult for us. Because each year, we are a little closer to where we don’t want to be. Each year our son loses more of his physical ability. Each year is another year without a cure. And eventually, the year will come when he is no longer with us. Nine years is a long time in the life of a child, particularly a child with a disease like Duchenne (or any other chronic/terminal illness). The past nine years have been filled with many ups and downs. And many lessons have been learnt, lessons that I would never have learnt had we not ended up travelling down this road.
30 Lessons that having a child diagnosed with a chronic/terminal illness has taught me.
1. It’s harder than I thought it would be. Much. Much. Much Harder.
2. Blood isn’t always thicker than water. In most cases it is, but just because someone is family doesn’t mean you have to like or respect them. Life is too short to bother with people like that.
3. Sometimes it’s the people who mean the most to you that understand the least, or run away the fastest. And sometimes the people you least expect end up being your biggest supporters.
4. Your partner is your ally, not your enemy. They are going through this as well, they are struggling with watching their child endure such difficulty. It’s just as hard for them as it is for you. So don’t take it out on them just because they are the closest person to you. Remember, it’s not their fault either.
5. There are crazy people out there who think it’s not fair that you get to take your family on a holiday with Make A Wish or Starlight Foundation. Some are even resentful of the fact you can park closer to the shops using a disabled parking permit. Insane, I know.
6. Just because it’s marked as a Disabled Parking Bay doesn’t mean that only disabled people will park there. Selfish people will as well. And apparently, when the Mums & Bubs parking is full, it’s okay to simply use the disabled bays. So I’ve been told.
7. Every time a friend posts a photo of their son winning Man of the Match or MVP or their daughter in a dancing recital, it breaks your heart. Because you know your child would have been a natural at any sport or activity if it wasn’t for their disease.
8. Hope is a heartbreaking thing to cling to. Each time I hope for something, and get let down, it’s like D-Day all over again. I can’t keep putting myself through that, so I don’t aim high on the hope scale. But, just because you no longer hope does not mean that you can no longer live. Living without hope of a cure should be incentive enough to make every damn day count!
9. Get out with your kids. Every weekend. See the world. Breathe the fresh air. Feel sand between your toes and the rain on your face. Eat strange foods and take in foreign sites, both in your own country and overseas (if possible). Just live life. Together.
10. Don’t allow anyone to make you feel guilty about doing what you feel is right or needed. Whether it’s a much needed holiday or a piece of equipment that will make life easier, or even a day at a day spa, you should never be made to feel guilty about it. Besides, it’s no one else’s business.
11. Take time out, every opportunity you have. This road is exhausting, allow yourself to recharge. Even if it’s only an hour in a coffee shop every Monday morning, after dropping the kids to school. Grab yourself a magazine or a book and enjoy the peace.
12. Take photos. Thousands of photos. And print them or make them into books. Before you know it, this time will have flown by. Make memories, record them, and DISPLAY THEM.
13. Don’t EVER feel like your child isn’t sick enough to qualify for Make A Wish. They are. Believe me.
14. Ask for help. Don’t try to do it by yourself.
15. Cry. As much as you need to. In fact, SCREAM!!! It can be quite cathartic and does wonders for your sanity.
16. Some people will tell you that it’s not their fault your child has a terminal/chronic illness. What they seem to forget is that it’s not your fault either. And it certainly isn’t your child’s fault. But it somehow makes them feel better to utter those words. I’m so glad THEY get to feel better.
17. Find a community of people going through the same thing as you. The friendships you make, and the support & advice you will receive, cannot be replicated by others that have not traveled the same road as you. They will become your second family.
18. Unless they are (or have been) in your shoes or something similar, people who say they understand actually don’t. It’s not personal, it’s just a fact.
19. There will be days when that smile you usually have plastered on your face will slip, and the truly overwhelmed you will be visible. Some people will run when they see what you are like behind the facade – they can’t cope with the pain of others. And there will be those who dare to remark “chin up”, simply because they won’t allow you that particular moment to be vulnerable and distressed. You don’t need those people in your life. If they can’t deal with you when you need them most, then they have to go. You should be allowed to have your moment, a moment to scream or cry or wail or hit a wall or just quietly sit. We all NEED those moments, we need to let it all out. And no one should ever make such comments or act in such a way as to trivialise your pain.
20. Just because they are a doctor, doesn’t mean they know the answers. It doesn’t mean they know everything about the disease your child has. Arm yourself with knowledge, either through your community of others living with the same disease or via the internet. Don’t take a doctor’s word for everything. You will end up living and breathing this disease, and all the associated research that is ongoing. Knowledge is power, education is paramount.
21. Don’t forget your other children. Whilst one might demand all your attention, don’t neglect the others. They need you just as much. After all, they don’t have a normal upbringing and they will end up losing their sibling. It’s hard on everyone in the immediate family. Period.
22. Talk. With each other. Never lie. If your child asks a question, tell them the truth (unless, of course, they ask whether Santa Claus is real). But only answer the question and nothing more. Don’t go into detail if the hard truth is more than they can handle.
23. It’s not all about research. Fund-raising money is needed in other places as well. Families are mortgaging their homes and going into debt to pay for renovations, vehicle modifications, medical bills, equipment and many other things that regular families don’t have to worry about. Marriages are falling apart because of the financial, emotional and physical stress of having a child with a chronic/terminal disease. Depression is a major factor, with the entire family. Holidays become a thing of the past as it’s way too expensive and difficult for many families to take a bed-bound or wheelchair-bound child away, or a child hooked up to machines or living with a compromised immune system that prevents them from going out in public. But these families actually need a holiday more than most other families. They need “time out”. Before they have a breakdown or their marriages break down.
24. It’s fine to make plans. But expect them to change. Many, many times.
25. Most friends who run to the fire to help will eventually fatigue, because this is a marathon and not a sprint. As parents, we are utterly fatigued, and this is only the beginning. But we don’t have a choice. This is our child and we can never run away. They take up our time, they take up so much of our energy. And the care we provide for them often affects relationships with friends as they have no understanding of how exhausted we really are, or how little time we have. We have to listen to people around us complain about the most trivial of things, about how annoying their kids are or how much work it is to run them around from one place to another. And I know that their problems are relative, because you only know what you know. But if only their “problems” were our problems. If only they realised how simple and “unproblem-like” their complaints really are.
26. Life goes on for everyone else. And that’s hard to accept.
27. When the medical profession says there’ll be a viable treatment in 5-10 years, don’t take their word for it. And don’t get your hopes up. Nothing is ever certain.
28. Be present. Be visible. Be engaged. Because one day they may be gone, and you will grieve the moments that you weren’t there. And that goes for all your children.
29. Dance. And sing. And laugh. Loudly. Dancing and singing and laughing are good for the soul, and great at helping to overcome sadness. The endorphins are good for mild depression. The more you dance and sing and laugh, the better you will feel.
30. Live to be happy. Live to ensure your children are happy. If your child becomes a doctor, a palaeontologist, a supermodel, an artist, a cleaner, or an actor, be happy for them. It shouldn’t matter if they marry a woman OR a man – if they are happy then be happy for them. Let your children be whom they are meant to be, not whom you want them to be. Be thankful that they will even live to make those choices, as many children will never have that luxury. If you can’t be happy for your child’s happiness, then I’m sorry to say but you have failed as a parent.
It’s difficult to understand for some, but every single day we survive is a gift. Every single day we have our children is a gift. Every single day we can take a breath is a gift. Every day still has something good in it, even when the day as a whole is bad. And every day that goes by creates a lasting memory, a memory that will join the countless other memories and flood our heads with pictures and moments. It’s all part of life. And whilst life can truly suck, it’s also pretty darn beautiful. I hate the disease my son has, but I consider myself lucky when I look at who I have in my immediate life. And I wouldn’t trade them, or the memories we have created together, for a single thing.
This is our life, a life completely different to what we envisioned over 9 years ago. But this is how we’ve learnt to live with it, and these are the lessons we’ve learnt. Just remember – think slowly, breathe deeply, love greatly, laugh loudly, and take it one step at a time.