Sweet Saraya – The Blog » A mum with a camera, keeping her loved ones in the frame.

March 9, 2012 – Notes from a Dragon Mum.

When James was diagnosed with his disease over 5 years ago, we hid from the world for weeks. We weren’t ready to cope with the reactions from family and friends, we were emotionally unable to answer all their questions. And we weren’t ready for their “harmless” comments.

It’s funny how tact and sensitivity in others go out the window when you find yourself in this situation, in a situation where you have a child diagnosed with a serious or terminal illness, or you find out your child’s life will be compromised due to their “special needs”.

After breaking the devastating news to my husband that our 2 year old son has a terminal muscle-wasting disease, and watching him dissolve into tears, helpless in my arms, came the realisation that we would have to tell our family and friends.

And that is when we realised that tact and sensitivity are not universally practiced. It seems we are not alone in having thoughtless comments about our child’s diagnosis and future thrown in our faces, even if it is with the best intent.

I thought I would list the Top 20 comments that have been thrown around by “well-meaning” family and friends, and hopefully those of you who read this will remember to NEVER say this to anyone whose child, or husband, or wife, has been diagnosed with a serious illness.

1. “God gives special children to special parents”

As a non-believer myself, I was astounded when my mother (who also knew I was not a believer) uttered this upon hearing our son had Muscular Dystrophy, and that there was no cure. I hung up on her. I was speechless. Because this particular line of thinking is complete and utter crap. God doesn’t give special kids to special parents. There are so many special kids out there, and I can tell you now that not all their parents are special. In fact, there are many parents who desert their sick children, who feel the “burden” of a sick child is too much for them to handle.

2. “Get a second opinion, maybe the doctor is wrong”

I wish that was the case, but blood tests and muscle biopsies don’t lie. And nor do the physical signs.

3. “There are men with Duchenne in their 60’s, still walking”

This is one of my alltime favourites. This was uttered to me by my son’s own GP, the doctor he was supposedly registered to. This man then had the nerve, when I told him he was wrong and he was talking about men with Becker Muscular Dystrophy (and not Duchenne), to ask me “Who’s the doctor here?”. Um, you are, you jackass, but you specialise in ear aches and sore throats whereas I live and breathe this disease, and I keep up to date on all the research. I’m probably more knowledgeable in my son’s disease than most GPs combined, and I bet most other parents of special needs/chronically ill kids are as well.

4. “Oh wow, now you can get a free trip to Disneyland!”

I kid you not, one of my friends had this comment thrown at her. Personally, I believe she showed incredible restraint in not smacking the “friend” in the mouth. A free trip to Disneyland? I’d much rather go hiking, or snowskiing, or surfing. But instead, I can apparently get a free trip to Disneyland. Bonus!

5. “Chin up, things could be worse!”

Yes, things could be worse, but this is not the comment a newly diagnosed parent wants to hear. In their world, what their child has been diagnosed with is the absolute worst thing they have, or will, ever go through. So in their world, things couldn’t get much worse. And the actual fact is, their dream of living a normal, happy, healthy life has just been given the boot. If anyone ever says this to me, they will be the one with the “chin up”, from my well-placed left hook.

6. “Now you can park disabled and never worry about trying to get a parking spot again”

I would rather walk a mile, in the pouring rain, with my healthy child than have the need to use a disabled parking space. And not only that but, in using the disabled parking space for my enormous wheelchair-accessible bus, I get to enjoy the inconsiderate bastards who don’t give a hoot about rules, and park their cute little sports cars there, or the mums with bubs who complain that all the Mother & Baby spots are taken so they park in the disabled spots instead. In cases like this, a nice strong Phillips Head screwdriver comes in very handy, stuck hard into the tyres of their cute little sportscars. They can learn the hard way that disabled parking permits aren’t handed out to wankers or spoilt princesses.

7. “I know someone who had that (disease/illness) – they died so young”

Thank you. You have just made me feel so much better about my child’s future.

8. “It is what it is”.

Sorry? What is what what is? It is tragic? It is funny? It is justified? It is what??? One of the worst throw-away lines of all.

9. “It’s all part of God’s great plan”

Come on, give me a break! God planned for my child to suffer? He planned for us to go into debt trying to provide the best life we can for our child, trying to give him the equipment to make his life easier, trying to attend the many medical and specialist appointments that go hand-in-hand with this diagnosis? If this is God’s plan, then I’m glad I don’t believe in him, because I’d be dialling him up bedside every night and telling him he’s a jerk.

10. “His life is in God’s hands”

No, his life is in my hands. God gave him this disease, apparently. So why would I trust God to save him? I am going to do all I can to save him from it, and from God.

11. “God is testing your strength”

I’m seeing a pattern here with all these God comments, and I’m seeing a definite pattern in my reaction to them. Our child has been diagnosed with a terminal illness, so do you think we are going to be happy with God? Do you think that making reference to God is going to make us feel any better, when so many of us actually BLAME God and are angry with him? Not me, of course, as I don’t even believe, but I know that many of my friends feel this way.

12. “You are so strong, I could never be as strong as you are”

So if your child is diagnosed with a serious illness, would you walk away? Would you just give up? This is your child, and your child needs you. Most of us parents don’t WANT to be strong, we actually HAVE to be strong. We can’t just sit by and watch our child get worse, or die, without a fight. And we certainly won’t let life pass our child by without doing all we can to ensure they live the best life possible. Our strength comes from our love. That is the only place that true strength can come from.

13. “I have a good feeling about him”

Face it, he’s been diagnosed with a terminal disease, a disease that has no known cure. What kind of “good feeling” could you possible have? That he will suddenly wake up one day and will be cured? That the doctors got it wrong? (Go back to comment #2 for my reply to that one). Telling me you have a good feeling does nothing to make ME or my child feel good. It only serves to make YOU feel good. And this isn’t about making YOU feel good, this is about comforting ME and MY CHILD.

14. “Be positive”

Ha!! Easier said than done. Considering I cry myself to sleep most nights, considering I watch my child struggle every day, and each day it gets harder and harder for him, it’s not easy to stay positive. I can be positive on the outside, but that’s only my mask that I put on when I’m in public. In private, I’m a mess. Nothing positive to report on this comment.

15. “Look to the future”

Unfortunately, the future is pretty grim, so why would I want to look towards it?

16. “God did this because you are a non-believer”

And THERE is a truly great reason for not believing, if this is the actual truth. And, if God is so angry with me for not believing he exists, then why not punish me, instead of my beautiful and innocent little boy? Unfortunately, it seems the people who make this comment the most, those so-called Christians, are actually the complete opposite of what Christians are supposed to be. It seems hypocrisy rules with many “Christians” out there.

17. “I will pray for you”

Really? You’ll pray for me? And what is that going to do? It’s not going to save my son, it will just make you feel better for doing NOTHING. I’d rather you not pray for me at all, if praying for me is all that you can do. Give me a hug, tell me you are there for me, but don’t just tell me you’ll pray for me. Praying won’t do anything. And if you are praying for me so I might be “saved” by your God because I don’t believe in him, then you can stop wasting your breath. I don’t need saving. It’s my boy who needs saving, and your God gave him this disease.

18. “Will your son be home? I don’t want my child to see him and get scared”

As parents, we should be breeding tolerance and acceptance in our kids, whether they are able-bodied, in a wheelchair, have Cerebral Palsy, is connected to wires and monitors, or can’t talk properly. We shouldn’t be encouraging them to be scared of things that aren’t “normal”. Our kids still want to meet other kids, to be considered “normal”, even if they don’t look like the textbook example of normal. Our children don’t want to be “special”. No child wants to be special, they all want to fit in. So if you don’t want your child to see my child, then I’d rather you just didn’t come around at all. Ever.

19. “Look at his strong muscular legs, he’ll make a great rugby player! He’s doing so well!”

His disease is progressive, so he’s going to have good days and bad days, but bit by bit the bad days will outnumber the good days, until they “good days” are a thing of the past. As for his legs, the muscular look of them is one of the first signs of the disease. To comment on them is to say his disease is obvious. And the fact we always hoped our son would play rugby, and will never be able to, makes this comment all the more heartbreaking.

20. “Your son is lucky to have you”

My son would consider himself luckier if his legs worked properly, and if he wasn’t bullied at school for being in a wheelchair. And for the record, I am the lucky one. My son has taught me so much about compassion for others in this same situation, he has helped me to reassess my priorities, to show love to those that deserve it, and to always think before I speak to anyone going through a hard time. I am the luckier one, because I am more thoughtful and caring and considerate and have much more empathy than most. And let’s face it, that makes me a much better mother and friend.

These comments are only a few of the comments I, and my many friends with sick/special needs kids, have heard since diagnosis from well-meaning family and friends. And even though their comments are most likely well intended, they don’t make me feel better at all. They make me feel worse. I have lost many family members and friends due to the thoughtlessness of their ill-timed comments, and my reaction to them. If everyone could just spend a little extra time thinking about what they said before they said it, there would be fewer relationship/friendship breakdowns over communication gone wrong. As parents of special needs kids, all we ask for is a little bit of tact, a degree of thought, and a little bit of compassion when making comments. Why not try to make US feel better, instead of YOURSELVES?

We need support, we need a hug, we need to hear that you will be there for us. And if you can’t think of anything to say, if you can’t find the words, then just a simple “I don’t know what to say to make you feel better” will suffice.

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