11 tips for talking to children about your illness.

(source)

To talk to your kids about your illness, or to not talk to your kids about your illness? This is the question that faces every parent living with chronic illness. Do you tell them? If you do, what do you tell them? Is it better to shield them? Is it better to ply them with chocolate and give them a new Xbox game and pretend this question never came up? Or alternately, ply yourself with chocolate and hide in your bedroom watching repeats of The Walking Dead on your laptop, and pretending that the question never came up?

The reality is that for the most part your kids, no matter how old, already know something isn't right. And in all likelihood they will be creating all sorts of scary scenarios in their head. Kids will fill in the blanks if you don't. And often the filler they create is negative. It's one of those times a kids imagination and creativity can be quite unhelpful. Just because you aren't discussing your illness, doesn't mean they aren't still thinking and worrying about what is going on.

My kids were young when I first became ill. My youngest was 8 and my eldest 11. It was a hard and scary time. I had no idea what was wrong initially. Dealing with the stress of the unknown and my own over-active imagination was consuming most of my waking moments. I thought I was doing a good job of protecting them from my worries and my failing health. What I didn't realise is that kids are always watching and are way more in tune to what is happening around them, than we ever give them credit. Saying "mum's just a bit unwell", and generally minimising things, really wasn't working. But in my own distress, I was simply oblivious to that fact.

Problem was, that whilst I was doing this, my kids had convinced themselves I was dying. Worst of all they didn't want to share their fears with me for fear of stressing me out. Instead, they were quietly worrying themselves sick that I would soon be dead.

When they finally told me, it ripped my heart out. Here was I, thinking that I had protected them from what was going on. But instead they had born a huge burden alone for a long time. If I have ever truly felt like the world's worst mum, it was in that instant. From that moment on I decided to talk openly with my kids about my health. Well okay, that moment may have been preceded by much in the way of tears and gut-wrenching guilt, but once that passed I decided that I wouldn't hide things from my kids again.

Now admittedly, there are aspect of this illness that you can't hide. Passing out for example is pretty hard to cover up. But there is a huge difference between your children being witness to the event and actually discussing what happens and why. If not dealt with, the uncertainty and the unknown feed fear. When it comes down to it, it really is true that knowledge is power.

So what are my main tips?

1.  Be prepared: Working out how to explain your illness and what it means, before the discussion occurs will help greatly. For a complex disorder like Dysautonomia it can be hard to explain at the best of times. If stumped, ask fellow patients how they explain their disorder. There is bound to be an explanation you can use for your situation.

2.  Tailor the information to the age and maturity of your child: The information a child needs, and can process, at 8 is very different to 15 (as my youngest is now). But whatever their age, or level of maturity, there are ways to talk to them. Early on we basically told my kids that I had a heart problem, but the doctors were trying to work out how to make me better. Over the years this has evolved as they have matured. Now at 15 and 18, they want more detail. They know about the autonomic system and the problems I face. They know about my meds and the types of doctors I see and why. We are now open about the whole situation. But it is a process. It is easy to discuss these things now as we have been discussing them in some form or another for 7 years. Each conversation building on the previous ones.

3.  Answer the questions they ask: don't overwhelm them with details unless they ask for them. Take it step by step. Some kids only want simple answers. Others are a sucker for detail. You don't need to overwhelm them with bucket loads of technical information, unless they ask. It can be a weird mindset as a parent, but you have to step back and let them lead the conversation.

4.  Be honest: My two asked me to promise to tell them if something serious was happening. My first reaction as a mum was to protect them. But in agreeing, I gave them a sense of reassurance. They no longer had to lay awake at night worrying if I was hiding bad news from them. If we weren't discussing it, it clearly wasn't an issue.

5.  Conversations can happen anywhere: if there are big issues to discuss, a specific family meeting can be great. But I've have found that most conversations begin when you least expect them. Questions are asked whilst you're making tea, whilst driving, at the checkout, waiting for a movie to start, late at night (mine are big on this, and many discussions have happened at 11pm or later). The important thing is to take the opportunity you are given whenever it happens, and go with it. The timing may be weird or inconvenient, but it is the time your child is finally comfortable and ready to discuss difficult issues. You simply have to go with the flow.

6.  Empower them with solutions: teach your kids what to do if something happens eg what to do if you pass out. This can be a scary time, but if kids know what to do it can alleviate much of the stress for them. Teach them them how to dial 000, 911,999 or whatever the emergency number in your country. Give them a contact person they can trust to ring in an emergency or if they are scared. Simply knowing to bring you water, or a salty snack when you are starting to fade gives them a sense of control.

7.  Include them in the process: Sit down and work out a plan with them. Eg if mum is on the floor and she wont wake up ring 000. If mum wakes up, bring her water, salty snacks, a blanket, keep the dogs off her (a necessity in our house).

8.  Empower them with knowledge: When an illness is chronic there are symptoms which are simply part of your day-to-day. My kids are pretty attuned to what is normal for me now. They know the cues for when I need to sit or lie down and it is all handled with minimal fuss. If I'm cooking tea and getting pale or starting to sway, they grab me a chair and a drink straight away. It's normal. It also means that they can detect when something more serious is going on (eg when I collapsed  last week). When every day is punctuated with symptoms that can be scary and confronting (something I really notice when we have visitors who aren't used to my health issues) knowing what is white noise and what is time for action relieves a lot of tension.

9.  Lead by example: learning how to deal with your own stress and choosing how to live your life, part of which is illness, is vital. Kids learn by example, and as parents we are still the main influence on their lives. If we are consumed by illness and not managing our stress they will also be consumed by our illness and stressed. As mother's we are often taught to put ourselves last. But the reality is that in taking care of ourselves, we are in turn taking care of them. If our kids see us managing in healthy ways they will learn these skills simply by being with us.

10.  Utilise support services for kids: If you are worried that your child isn't telling you what they are feeling or you don't feel confident to discuss these issues there are services available. In Australia, Kids Helpline 1800 55 1800, is a fantastic free telephone and web counselling service for children. Similar services exist in most Western countries. You can provide your children with information about these services and let them ring at need. Family counselling can also be valuable if you want some professional direction and support as to how to discuss these issues. Letting your child's school know about the situation can also be useful. For example, they can provide counselling if needed, or simply alert you to changes in your child's behaviour. We met with our children's teachers and let them know what was going on. Whilst no major issues arose, the teachers appreciated being told and it definitely gave me some peace of mind.

11.  Kids are resilient: This is the final, and in many ways, the most important point. We often underestimate how resilient our kids are. But the one thing I have learnt over the last 7 years is that kids can show an incredible amount of strength and empathy. They surprise me everyday. If they feel loved and supported it is possible to make it through. We can't always protect them from the stressors of life, but we can provide them with the tools to manage them as best as possible.

We have had many ups and downs over the last few years. I wont say that at times it hasn't been stressful or tough. They still worry. I still make mistakes. And things go pear-shaped at times. But overall we are maintaining a reasonable balance in difficult circumstances. Being open with our children has been confronting and hard at times. But that's not unlike many of the issues we have to discuss with our kids as parents. But we can do it. And our children will be the better for it.

Cheers

Michelle :)

Okay I couldn't think of a song about talking I liked, but I do like Talking Heads and my kids love this song and it's parody Psycho Chicken.

Processing

To  post, or not to post?  That is the question.  It's hard some days to decide what to write about.  How much of yourself do you share?  Are there topics that simply shouldn't be put out there?  I need a Blogging for Dummies, that sets out neatly, the okay and not okay topics.  Not that I'd probably read it.  It would just end up sitting on the table collecting dust and coffee cup stains.  Or end up as another brick in my fall back plan for fame, ie to get onto Hoarders.

I'm pretty much of the school that says sharing stories makes them more bearable.  Blogging as therapy.  I think it works, and it's way cheaper than the regular types.  So often we hide what we think is shameful, or too personal.  I know for myself at times, pushing the 'publish post' button, feels like I'm standing naked in the middle of the crowded room.  Exposing yourself can be a strange melange of pee your pants terrifying and exhilarating.  It can be freeing, as you find others who have shared your experiences and support that comes form unexpected quarters.  And finally those mountains can be seen for the molehills they truly are.  So I'm going to take that plunge once more and hope that if nothing else, it helps me sort through and organise my personal maelstrom of thoughts and emotions.

We all have fears.  Over the last few years I've had new ones crop up.  Ones I never thought I'd have to confront.  I don't usually voice them as, illogically, it feels that to give them voice you give them power and that increases the chance they will become manifest.  Stupid I know.  My practical science background laughs derisively at my foolish illogical side.  But the reality is that voiced or unvoiced they sometimes come true.   Sometimes life is simply completely out of your control and you have to find a way to deal with what comes your way.

As my own health issues have progressed over the past few years a new fear has crept into my mind.  Although Bob is not currently thought of as a genetic disorder, except in very specific forms, it can run in families, as can some of my other health issues, and there is an increased risk of yet other cluster illnesses.  I have spent many a sleepless night worried that some part of my defective genes will be passed onto my children. 

As a mother you have an instinctive drive to protect your children from harm.  Every tear, every disappointment, every hurt, rips out your heart.  Knowing that you may be the cause of that hurt, is more painful than words can describe, and there is no salve.  And that is the path I am now treading.  Over the past year my youngest has been on the doctor roundabout as his young body has started to have problems.  Over the past year I have come to the realization that my broken genes have been passed down to those I hold dearest.

I've had a little pit of fear stewing in my belly.  Every time he has felt nauseous.  Every time he has run to the loo.  Every time he looked pale.  Every time I have seen him limping along.  I have seen a little still from my own teenage movie.  And it has scared me.

Even without a doctors diagnosis I've known for some time that he has developed the same gastric issues I had as a teenager.  The same food intolerances, which are now confirmed by recent tests.  Similarly, I've know that his poor little joints are like my own.  I know the pain he is feeling only to well.  Yet despite all the evidence I have held onto a little glimmer of hope that I was wrong.  That it was indeed "all in my head".  But it was not to be.   And I know that what he (and to a lesser extent my eldest) is experiencing is due to my own faulty DNA.  And the guilt is overwhelming.

I've been good at stuffing those pesky emotions down.  But sitting in the phsyio's office listening to words like "sublaxation" and "bad collagen" has hit me harder than I ever thought possible.  I was totally unprepared.  Those words said out loud about my child, were like a clarion bell.  It was real.  More real than I have allowed myself to believe and it's like I'm now standing under a never ending waterfall of guilt.

I know it's not truly my fault.  As my best friend pointed out (and I am so glad I have her voice of sanity in this matter) it's not like I decided to pass this onto my children.  But it doesn't stop the feelings of guilt, rational or not.  In my good moments I know the truth, but in those other times........ 

A mother's job is to protect her children, and this feels like I have failed on the highest level. I know only too well what it's like to be a teenager with health issues.  What it means physically, socially, and emotionally.  And I think in many ways it makes it better, and conversely, far far worse.  It's a challenge to keep perspective and stop my own baggage from interfering with what I need to do now.  To not transfer my own emotional memories onto his little shoulders.

Last night I strapped his ankles in a vain attempt to keep them in place for his cricket training, knowing full well that it was more placebo than panacea.  I spent the drive back home bawling my eyes out as grief and guilt took turns at beating the crap out of me.

I am in that horrible acute phase, where the the roar of my emotions is deafening.  I have argued irrationally with Mr Grumpy, as my own insecurities and baggage have taken control.  I  have yelled at the dogs and screamed abuse at the washing machine for not washing quickly enough.  Even the discovery of the empty coffee container feels like a deliberate personal attack.  It's my irrational side in all it's glory. 

I want to punch something.  To yell and scream.  Or grab a bottle of tequila and hide under the covers until I can view the world through the same beer goggles that transform the world to hilarity and beauty.  But I'm a mum, and mums don't have that luxury.  We have to hold our shit together.  Stuff down our fears, put on our calm faces and tell them it's going to be alright, even when it's not, even when that little voice inside is screaming in our ear.

There is a creeping fear that this may be indicating the arrival of Bob in his life, but I can't face that just yet.  I'm going to put that one in a box, tie it up in chains, and bury it deep down.  I'm not ready to tread that path.  Though I know that if the time comes, I will.  But until that time I shall say a prayer to every deity known to man that he will not have to take that journey, that I can spare him from at least that burden. 

I know that logically, at the least, I can now find him the help he needs.  I can give him the gift of believing him when he says he is in pain.  I can support him in the multitude of ways that I didn't have as a child, when these disorders were not recognized and the title of hypochondriac was readily bestowed by the medical profession and family alike.  I know the power of a diagnosis.  I am glad that it gives us a starting point from which to tackle these issues.  But none of that changes the fact that I cannot give him the gift of good health.

My own health issues mean nothing in the face of those of my child.  I want to have the magic wand I had when he was little.  Where I could make the monsters disappear with my miraculous mummy super powers.  Where I could kiss his bumps and scratches better.  Where he knew without doubt that I would keep him safe and protect him from the harms of the world. I want to wrap him up in joy and peace, and let him live in a pain-free world. 

So I will take a breath.  I will dry my tears and patch my heart.  I will put on my practical hat.  I will book the appointments.  I will take the steps.  I will don my armor and fight for him.  I will help him find the path to acceptance of his physical limitations.  I will help him discover that his true gifts are not the ability to kick a ball, but lie within his spirit and generous heart.  I will do all in my power to heal and soothe.

And I will try to find that place where I can be okay with all of this.  But at this stage I am still processing.

Michelle

I'm Sure Even Mother Teresa Thought School Concerts Should Always Have A Bar.

I'm not a kiddy person despite having popped out a couple of rug rats of my own. Babies don't make me clucky.  I'm not overly impressed when they can roll over or get thier first tooth.  I prefer my kids speaking and toilet trained and perferably with a decent return policy, as in not mine so I can give them back to their parents.  On second thoughts scrap the speaking part.  I now have two argumentative, hormonal timebombs, otherwise known as teenagers, and I would do anything to install a mute button on their foreheads right now.

Now I'm not saying I don't love my kids, cause I do (just after you give birth, when your senses are dulled by pain and exhaustion, they put a chip in your brain to ensure this), and if anyone hurt them in any way, I would rip their head off and beat them senseless and dispose of their bodies in a wood chipper, Fargo style.  I also think they are kinda special, but I maintain a carefully crafted air of nonchelance regarding their evident brilliance.  (Crap, I hope they don't read that.  I have been working hard on my "your the world's worst mum", "you're so unfair", "you just don't understand", "everyone else's mum would say yes", "you suck", persona).   But I also have many days where I think that woman in The States who stopped her car, shoved her wingy and fighting kids out the door, and drove off, was a genius.  Truth is, I have come to believe that the whole mummy gene appears to be missing, or at least not quite right, from my repertoire.

I enjoy time away from my children.  I want time away from my chldren.  I NEED time away from my children.  When they go to the grandparents for a week I do  a dance of joy.  If they don't ring I don't mind.  The best part of the school holidays is the Sunday right before the Monday they go back.  Its a toss up if I was more impressed when they learnt to use the coffee machine or when they finally learnt how to hold a note on the trombone (now that was an excrutiating, paracetamol filled, few weeks).  I have also been informed by said children that I have been known to do a fair impersonation of the mum on Malcolm in the Middle.  I fear I have failed on the mumminess test.

When the big guy (or girl, or spirit dude/dudette, universe or however you swing) was handing out the mummy vibe, I was obviously out having a glass of wine and spending my lifesavings on the perfect pair of shoes.  Incidently I was also MIA when he handed out the co-ordination skills and technical know how, much to the amusement of my husband. 

I'm sorry people, but all children aren't inherently cute and many should come with a warning sign stappled to their forehead.  I will admit occasionally one will do something to deserve being called cute but these are very few and far between, and I generally require that they be related to me by blood.  And even then if they jump on my couch with their shoes on ( I don't care if they are showing me their dance moves) or draw on my walls (this is not them expressing their artistic talent) I have to restrain myself from picking them up by their ears and threatening to feed them to sharks.  Yes I know, I'm a bad bad person.  But hey at least I don't actually do it, I just play it over and over in my head.

I loathe school concerts, where 80,000 grades of 20 five to 12-years-olds are forced to sing some schmaltzy song in bad costumes.  There's little in the way of singing and much in the way of nostril exploration, dress lifting, pants investigating and screaming.  And why must they go on for hours?  Primary school-aged kids are really upleasant at 11pm.  Especially after hours of waiting, not touching their makeup and too much sugar.  We popped a celebratory bottle of bubbly when the youngest was finally out of primary school and the torture was over.  At least at the high school level there is a chance that one or more of the kids can hold a tune, though I'm enough of a realist to not expect Glee level tunefulness.  I can sit through my own kids' efforts but I do not find other kids cute and I most certainly do not get clucky.  I pray for the day when you're not looked at like the spawn of Satan because you suggested to the other mums that you all make a run for it and head to the nearest bar; or, at the very least, put some vodka in that special mummy juice box. 

I have sat through years of excutiating instrumental soirees.  Hour after hour after mind-numbing hour of Three Blind Mice, played by tone deaf offspring, on everything from a glockenspeil to a tuba.  My eldest played trombone for many years and let me tell you trombone practice/concerts makes Chinese water torture feel like a day at the beach.  Yeah it's great that little Johnny is giving it his all and that he has the guts to get up on stage, but he is tone deaf, not a child prodigy and I don't want to be subjected to an impromptu concert every time I come over for coffee.  A couple of years ago the organisers started selling alcohol at these events.  A wise move by the fundraisers who know that the ability to endure these events and maintain sanity is reliant upon the ingestion of large amounts of fermented grape juice.

I want to throttle people who live vicariously through their children (and yes I mean you Band Nazi woman).  Who put Little Johnny in 15 after school activities just so they can tell you that Little Johnny is in 15 afterschool activities.  Who spend every second of dinner regailing you with every single aspect of little Johnny's achievements.  Who make you feel like the shite parent because your kids only do two afterschool activities and spend the rest of the time using their imagination to entertain themselves or learning social skills.  (Mind you I can't help thinking that if Little Johnny was such a genius he would've learnt the words 'please' and 'thank you' (no doubt in 12 languages) and the concept of sharing).   I really don't want to hear about breast pumps, toilet training or be hit up to buy chocolate bars for Scouts.  There is a time and a place people.  Don't these people realise that you go out to dinner to get away from your kids?

I want to whack the children in supermarkets, restaurants, meetings, movies, planes etc who scream and run around and kick your chair and throw food and....  This is not cute. Your child is not learning by exploring the world.  Your child will not end up in years of therapy or sitting in the corner sucking their thumb rocking because you told them 'no' or made them use the increasingly foreign words 'please' and 'thank you'.  Your child is not a mini-adult and does not need to be included in adult conversations.  If I am paying good money and getting out of the house for the first time in a year, to eat food that I don't have to prepare and clean up after, I don't want to listen to Little Johnny scream and throw his plate across the room becasue he didn't like the shape of his potatos (true story). 

However, every now and then the little buggers do something and I am overwhelmed with a big case of "Awwww", and my best laid plans to be the rational woman who just happens to have kids are thwarted.  I've tried to raise my kids to have a social conscience and not care or define a person by their religion, race, sexual orientation etc, and to instead focus on whether a person's behaviour reflects a heart of truth and love.  Shock horror, I find that despite repeatedly getting the look of "here she goes again, time to bring out her soap box", they have actually listened.

My youngest has decided he is going to save the world one inch at a time.  When he heard that our elderly neighbour's kids didn't bother to visit her for Easter (all five live within 10 minutes) he offered to help her and is now sweeping her steps and front path and spending time chatting with her.  When he was on camp he gave all his left over money to the Salvation Army, as they needed it more than he needed more lollies.  When his friend (the only Asian child at his school) was surrounded and being bullied he was the only kid to stand up for her and tell them to stop.  How can you fight that stuff.  It brings out the mummy pride and awwwwness in spades.  It makes you feel like putting a full page ad in the newspaper and putting it on the loudspeaker for all to hear.  

(Yes it's a girl but hey it was late, I was tired, and well damn it it's close enough)

I should probably add, before I get another course of "you love him more than me", that my eldest also does these things.  When I'm ill he brings me drinks or makes me snacks.  He doesn't complain if I can't drive him somewhere due to dizziness and will often say "sit down and I'll make dinner" (he makes a great spaghetti carbonara).  He sticks up for the kids with challenges at school and is always ready to help someone in need.  When it comes to girlfriend's birthdays he searches to get something personal, including many hours shopping to find the perfect stuffed elephant, for the one who liked elephants (I never want to see another stuffed elephant as long as I live).  For me that kind of caring heart is far more important than a top grade in math, or getting into the state sports team.

Now having said that I will continue to loathe kiddy concerts.  I will continue to buy a glass of wine to make it through every ear splitting violin solo, un-co dance routine and voice-breaking version of Leonard Cohen's Halleluja.  I will continue to want to throttle the "look at my kids" parents.  And I will continue to sit back and be very grateful for my two offspring and the fact they haven't turned out too bad despite getting the mum from the shop-soiled seconds sale.

Cheers
Lois Michelle :)

Mother, Mother, Tracy Bonham (1996).  A touchy feely interlude. Well touchy feely for me.