“Why do they have to pity him when he’s happy?”

“Why do they have to pity him when he’s happy?”

A friend of mine asked me this the other day. We were watching his son making his way along the hospital corridor, trying out his new walking frame, wearing the biggest grin I have ever seen on his face. His left leg was doing most of the work and his little arms were shaking with the effort but he was so proud of himself. 

It's harder than this dolly makes it look.
(Spider walker by Timo)

We were proud of him too because, in the two years he had been in the world, this was the furthest he had ever walked. And yet, there was sadness in that moment. 

As nurses, doctors, physios, patients and visitors passed him in the hall, there was smiles and adoring looks from some, but there were

 looks of pity from many others. Looks that said, “that poor child, he can barely walk.”

But my friend didn’t want pity for his son. 

“Why do they have look at him like that?” he asked. “Why can’t they look at him and say, ‘Wow! He’s actually walking!’?”

So, here’s my question for the week?

Why can’t you?

Because when you see a child with a limp, with a walking aid, with splints or AFOs, with a wheelchair, with a prosthetic, with a deformity or other obvious disability, what you’re probably feeling is pity. And what you’re thinking is, “poor thing.”

But you don’t need to. 

Because, when my daughter manages to shift her weight while sitting without falling, I’m proud of her, I’m excited. It’s a tiny thing, yeah, I know, but to me it’s wonderful and I think we should throw a party to celebrate how much we love her and how well she’s doing. 

When my son manages to control his fear or anxiety or frustration and actually calms himself down, I want to ring every member of my family to brag about how clever he is.

When my friend’s son manages to lift his right leg, we cheer!

You don’t need to pity us. 

You don’t need to pity our children.

What you can do is try to understand.

You can look up some blogs about what it’s like for parents and their children living with conditions like Muscular Distrophy, Cerebral Palsy, Spina Bifida, Down Syndrome, Autism, Sensory Processing Disorder and Spinal Muscular Atrophy just to name some obvious ones. 

It’s not morbid to read about what our lives are like, it’s an eye opener. 

You’ll learn more about the community you live in, even if it is a part of your community you don’t see every much.

And (and this is a big, important and) you will grow in your compassion, respect for others and empathy. And that is what we are trying to teach our kids is it not? What better way to teach them those things than to be ever striving to learn thetm better ourselves?

Here’s another thing you can do too. 

I’ve mentioned before on this blog that you don’t need to be afraid to ask about my kids if there is something you would like to learn more about and I’ll say it again: Don’t wonder, don’t stare, don’t point: just ask.

The much loved Bunny Boots.

My daughter wears AFOs (that stands for Ankle Foot Orthotics) to help her lower legs keep their shape and stop her ankle joints from contracting too much. Theoretically they help with standing and walking too but in her case that just isn’t on the cards. I know that a lot of people have seen them on her and silently wondered about them but so few people have actually asked why she wears them.

About two weeks ago I overheard a bit of a conversation that made me really sad and more than a little bit angry.

I was talking to my daughter about her AFOs, which we call her Bunny Boots because they have pictures of bunny rabbits on them. I was asking her if one was a bit too tight because she seemed uncomfortable. 

She said yes, I adjusted it. 

It was a simple thing, but at the next table, three women were watching us. 

A few minutes later my son came running up, asking me to chase him and my daughter squealed: “Run! Run!”

So, I picked her up and ran with her, holding her under her arms and letting her feet bounce on the ground a little. It’s a bit awkward but she loves to believe that she’s running and I will happily do anything for her when she giggles so adorably and we had a lovely run until I ran right out of energy.

As we were getting ready to go and I overheard the following snippets of conversation:

“...poor thing...”

“....leg splints...”

“...disabled...”

“...handicapped...”

“...Forest Gump...”

“...Isn’t it sad...”

It seems that for some people the only experience they have of splints is the film Forest Gump, but let me just say, the medical profession has moved on since then.

Oh, and if you really feel the need to whisper about my daughter, could you at least wait until we’ve gone?

Because that sort of thing really puts a downer on my day and, trust me, I don’t need any additional downers.

So there you go. Please don’t feel you have to look on us with pity. Understanding is always welcome, sensitivity is a must (I don’t hold with comedians who make fun of people with different abilities. Bullying behind a microphone is still bullying.) but pity isn’t needed.

You don’t need to pity us. 

You don’t need to pity our children.

Especially when we’re happy.

The Dangers of Attachment Parenting (I’m sure there must be some).

There has been quite a lot of contentious debate lately, and a fair bit of name calling, on the topic of Controlled Crying and whether or not it is damaging for the infants and children who are left to cry themselves to sleep at night. Some call it Baby Torture while others call it Salvation and people can’t seem to agree to disagree.

I personally am not an advocate of CC, it makes me cringe, but I’m not going to assume those who do it are negligent parents. Some kids fall asleep within minutes of being put down in their cot and never feel any sense of abandonment (which I think is the parenting equivalent of winning the lottery). 

I myself am an AP or, Attachment Parent, which means (in our family) that: 

- I baby wear using a sling or pouch; 

- breast feed on demand for as long as my child wants to; 

- bed share with my children and allow my babies to feed to sleep at night; 

- follow the principles of Baby Led Solids; 

- make use of cloth nappies to reduce our financial strain and the strain of disposable nappies on the environment; 

- parent as gently as possible without yelling, spanking or other physical punishment. 

I can’t imagine life any other way.

Unfortunately, several CC parents, in defensive mode, have suggested that Attachment Parenting should be investigated and reported on to see what damage it causes because, surely, if CC causes children to feel abandoned and isolated, AP must make them overly dependent and demanding. It’s complete hogswash obviously, a little immature and reminiscent of antiquated Victorian thinking if I’m brutally honest, but I thought, why not? What are the dangers of Attachment Parenting?

(Sarcasm and Tongue-in-cheek warning! Read on at your own risk!)

One of the biggest dangers of AP is of course that you will become a lazy parent. 

Yep, I am a totally lazy parent. Here’s why:

Breastfeeding means no measuring out formula, no sterilizing bottles, no checking water temperature, nothing. You never forget to pack baby’s milk when you leave the house because you aren’t likely to forget your boobs, no matter how badly you’re affected by baby brain.

Bed sharing means you don’t need to get up over night and in the morning you know exactly when your kids have woken up in the morning. You have the excuse to take naps during the day because you feed baby to sleep lying down. With fewer beds in the house there is less bedding to change and wash and you never have to worry about baby being too hot or too cold because your body will help to regulate  their temperature.

If you’re out and about when baby gets tired and needs a sleep you don’t have to rush off home because you have your trusty sling in which bubs will happy sleep in for an hour or two which means that your mothering duties don’t have to affect your social life.

And Baby Led Solids means that you don’t have to waste time steaming and pureeing that carrot. All you need to do it cut it into sticks and place it in front of them. (And if they throw it on the floor you just pick it up and give it straight back to them because every baby will tell you - albeit in baby talk - that floor food tastes way better than plate food and highchair food.)

You may end up becoming obsessed with wraps, slings and gorgeous cloth nappies.

This is a serious danger to the bank balance and collecting cloth wraps is particularly addictive. Before long you’ll be finding excuses to put bubs in a sling and may even take up walking as an excuse to show off your mastery of the ruck wrap. 

The expensive pram which was bought for you by well-meaning relatives will still be used, of course, to transport shopping at the markets or the towels and buckets at the beach. On days when my back is playing up my daughter actually sits in her pram but likes to have her sling across her legs for reassurance. We had a particularly unfortunate pram once which was converted into a wheelbarrow when we were doing up the backyard. It never fully recovered.

Cloth nappies are similarly dangerous because if you aren’t careful you may find yourself actually enjoying washing and hanging out nappies. From here it’s only a short step to a descent into complete domesticity and you’ll find yourself wearing a pinnie, house slippers and curlers while you cheerfully scrub floors and wash windows.  And, because you’ll have your baby, and possibly your toddler too, in wraps on your chest and back, you’ll be able to do it!

(Which will be confusing for you because you are, at the same time, a lazy parent, as explained above.)

You’ll discover that you can have meaningful conversations with the older generation of ladies at church for whom cloth nappies were a way of life and they will be so impressed by your return to ‘The Old Ways’ that before you know it they’ll start bringing casseroles, soups and cakes around to the house and offering to help with the housework!

Your kids run the risk of becoming too independent.

I was warned by many people (mostly people behind me in the check-out line at the super market or at the bus stop) that carrying my baby all the time and not leaving him in a childcare while I went to uni would only make him super clingy and overly dependent on me. I was “pandering” to him, apparently, and that was a bad thing, apparently. In truth, this didn’t bother me. I loved my baby cuddles and the fact that my son never ran off in a car park and actually wanted to hold my hand when crossing the road. I tried to explain to people that he was of a certain disposition and that he needed the reassurance of my presence in order to feel safe. I tried to explain that I had started baby wearing because he required it, rather than because I wanted to stifle his curiosity and prevent him from walking. I tried, in vain, to explain that I didn’t think my son would still be sleeping in my bed when he was a teenager, and that I was sure he would sleep in his own bed one day. Still, I was told a lot that I was doing my son a disservice and that my son was missing out on learning the all important Independence which is apparently the most crucial thing a child can learn these days. 

My son was fairly attached to me in the first year or two of his life. He likes to assess a situation before he dives in, and because of his Sensory Processing Disorder he finds it hard to calm down on his own when faced with sensory overload, yet has known instinctively from birth that being held close by someone he trusts will help him settle. 

Sadly, when he was about two and half years old he discovered his independence. He chose to sleep in his own bed, chose what he wanted to eat, chose to wean from breastfeeding and chose to leave my side and go off to play with the other children on his own. I have to say I was devastated. He had discovered independence in spite of my efforts and without anyone forcing it upon him. Now he runs everywhere, often while pretending to be an aeroplane, and will only stop if I pretend to be Air Traffic Control giving him permission to land.

I have been informed that this tends to be the way with AP raised kids. They decide for themselves when they are ready to climb out of the sling and then you’d best beware because there will be no stopping them. They can be dangerously independent. They of course know that if they hurt themselves or get scared they can come back to the adults they trust for reassurance but their new found confidence may just mean that you’ll have a hard time stopping them from socialising, exploring and getting up to mischief. 

They take their time and make the decision as to when they are ready for independence and it is, therefore, a genuine and joyful independence, which is of course, a dangerous thing (it may lead to independent thought).

You feel the urge to run over and pick up crying babies and cuddle them, especially when their mums seem to be ignoring them.

Once your own kids are busy - one having run off to climb a tree to get a closer look at an interesting beetle, the other to sit under said tree eating bark chips - you will, sadly, be left standing in the playground looking rather lonely and forlorn. You’ll be looking for a small person to cuddle because your single heartbeat is just not enough, not complete without a little one beating in unison against your chest. This may lead you to over-respond to the cries of other people’s babies. You’ll turn at every cry and, if you’re a lactating mum, you’ll probably feel that tell-tale tingle that signals your milk let-down. A baby is crying and your body is telling you to feed it. This is dangerous because, obviously, you can’t run off with other people’s children and, less obviously, because it could lead your child to ask why some mummies and daddies don’t understand that they should carry their kids and feed on demand. While I have learnt to restrain my desire to pick up strangers’ babies my son will, upon hearing a baby cry, rush over and tell the mum to, “give that baby some booby quick!”

And the most dangerous thing of all... 

Your child may not fit in with our modern, stressed, self-centered society.

Yup, without the early exposure to stress that CC gives your kids they won’t be acquainted with it and will struggle in competitive classrooms and with their mounds of nightly homework. This is turn leads to dangerous ideas and crazy notions and before you know it you’ll decide that homeschooling is a legitimate option because you now have an independent learner on your hands who doesn’t understand why they should obey adults for no better reason than that they’re older, bigger and uglier. They will be too sensitive and won’t understand that bullying is just a part of life. You may even start to doubt the validity of bullying yourself.

I meet so many AP raised kids who just don’t seem to understand that they should put themselves first. They cart their younger siblings around in pouches and slings - because they want to! - have an over-developed sense of empathy and, at the tender age of 18 months, will fetch toys for a friend who can’t walk and offer her kisses and pats on the head. They just aren’t normal and if we aren’t careful, our whole Western way of life will be challenged by these children who have been coddled in the name of nurturing and bonding.

Attachment Parenting is truly a dangerous thing after all. Who knows what impact it will have on our society and our values. 

I hope I’ve set the record straight.

(I think I should emphasize that this post is extremely tongue-in-cheek and the result of a day in bed with a suspected kidney infection. Most of it was written while breastfeeding my 18-month-old while my 4-year-old  fetched me drinks of water and stories to read. It’s another danger of AP - your children start trying to nurture you.)

Anxiety anyone?

Do you ever get anxious? I do. 

In fact, anxiety has been part of my life for a really long time.

Most days it’s just a background noise, a little buzzing in my head but other days it becomes like the roar of the ocean in my ears and makes it impossible to focus on anything other than the fear.

This isn’t a blog post about how I’ve overcome my anxiety because I don’t think I ever will overcome it, it’s part of who I am, my temperament.  What I want to write about here is living with anxiety because so many people who do are too embarrassed or ashamed to talk about it, because even in our modern age where depression and anxiety are not automatically equated with ‘madness’ there is still a prejudice. Inside, when people hear a person with an anxiety disorder talk about what they go through, they are thinking: “Just snap out of it”, “think positive”, “you’re just being melodramatic”. They think anxiety is simple, they think it’s something I can stop whenever I choose. 

Anxiety isn’t a choice.

And it isn’t just confined to my thoughts. It gets physical and is more than mildly uncomfortable. The best description I can give is that it’s like motion sickness. When anxiety sets in the roaring of the waves fills my ears and I find myself in a little boat in the middle of a choppy sea. I can’t concentrate and begin to feel physically sick because everything is moving around me, going up and down and pounding in my head. I don’t just feel uncomfortable or worried. I feel ill and on a few occasions it has been so bad that I’ve vomited or nearly fainted.

That, for me, is what an anxiety attack is like. And while talking myself through it helps a bit, a drink of cold water  and a few breaths of fresh air help just as much. The thing is, once it’s in full swing I can’t actually stop it through sheer force of will. It takes time and occasionally, anxiety attacks just happen, regardless of my attempts to keep them at bay.

As well as telling you what an anxiety attack feels like, I’d also like to let you know that having an anxiety disorder does not mean I’m neurotic of paranoid. My fears aren’t unfounded and they aren’t phobias. Yes, throughout my life I’ve struggled with self esteem issues, mostly due to bullying in school, and self esteem plays a big part in anxiety, but even on a good day, when I feel good about myself, it’s there. 

These days most of the anxiety is focused around the physical health of my daughter and the mental and emotional health of my son. I know he has inherited my nature and that he is prone to anxiety. Even though I refuse to lose it, refuse to let my anxiety show in front of my kids (even if it has meant running off to be sick in the toilet on one occasion), which can cause me a whole lot of physical discomfort, I know that he experiences anxiety and that he has inherited that from me. 

I don’t think that the anxiety I feel with regard to my children in unfounded. My son has Sensory Processing Disorder and my daughter has Spinal Muscular Atrophy. Life for them can be really hard sometimes and no one can tell me what the future will be like, or even how long my daughter will be with us. Unfortunately anxiety is how my body deals with the stresses in my life. Some people get violent, or swear, or drink, or smoke, or exercise, or binge eat, or sleep a lot, or cry, or bottle things up or get really pro-active. My body gets the jitters - it gets anxious.

I also get anxious about pain. I deal with pain every single day, from when I wake up in the morning until I struggle to sleep at night and it isn’t just from my crushed vertebrae and badly healed hip fracture. I have Ehlers Danlos Syndrome. Everything hurts. And so I get anxious about being in pain, about not wanting to be in more pain and about the possibility that what I do during the day will lead to a whole lot of pain at night. I have to plan and judge what I’m going to be able to do so as not to become overtired or physically overworked. With two young kids with special needs that isn’t always an easy task.

And I’m rubbish at asking for help and admitting that I’m struggling.

So there you have it. This may seem all a bit too revealing, like posting a photo of myself in my underwear. It is a bit.

But I’m sick of having to pretend that I’m not on anti-anxiety medication. I am. And I’m sick of people not understanding what anxiety is and what it feels like. I figure if we want more people to understand this disorder then we have to tell them about it, because they won’t learn any other way.

I wrote this post because I was appalled when I was told that my son needed to toughen up and that I needed to stop worrying about him. I was told to toughen up too many times as I grew up and it had the opposite affect. If it weren’t for my fantastic family I’d be a right mess. So I am determined that being of an anxious disposition should no longer have a stigma attached to it and that my son and I should not be seen as weak because of it, because we’re not.

We just get anxious. We, like every human being, are in need of compassion from those around us.

And if you tell me you never feel anxious, you’re lying.

Blowing bubbles and other simple things.

I’m a bit of a fan of the simple things in life.

I like sitting in the sun with a cup of tea and good book.

Nothing makes me happier than the sound of my children giggling.

I love the smell of freshly baked ANZAC biscuits.

Rainbows make me smile.

It’s a bit kitsch, I know but it is true and I like to encourage this love for the simple things, the little things, in my children. I have found, over the last few years that doing simple things can help my son regain his calm, help me regain my sanity and help us all appreciate our world a little bit more.

The other night my son and I lay out on the lawn and just stared at the stars. I felt the tension melt out of both of us as we lay side by side and took in the vastness and brilliance of the night sky.

Simple touch activities are also calming and when the day has been a series of medical appointments and physio exercises and bus trips we all benefit from a bit of time with our hands in the split pea bucket, or making patterns in shaving foam, sifting sand in the sand-pit or rolling play-dough. I’ve noticed that quite often at playgroups it’s the mums who really enjoy the play-dough and painting. It’s calming and gives you a chance to let your mind wander while your hands fiddle.

One of the things I love most about appreciating the simple things is that it tends to be quiet too. Both my kids work best when it’s quiet. In the absence of background noise they will both start humming and singing their own little songs or chatting away to me and at those times I feel like we are most strongly connected.

My son will ask me about God and the universe and all manner of things and I am constantly amazed at his curiosity and depth of wonder. My daughter will take in everything around her and I can see on her tiny face that she is savouring sensations and learning and growing all the time.

When we have quiet outside time my son will watch a line of ants for what seems an impossibly long time for a four-year-old. My daughter will sit and examine a flower before finally deciding to try and eat it.

And when I bring out the bubbles their faces light up.

My daughter, at fifteen months old, bounces up and down on her little bottom, chanting “bubbles! bubbles!” and as I begin to blow we all settle in to watch this simple wonder.

Bubbles always make me smile. They’re like a little bit of magic, yet a magic that is so easy to do. Sometimes, on really hot summer days, we lie on my bed in front of the fan and blow bubbles there. They swirl around in the air and look like they’re dancing.

Yeah, bubbles make me happy.

They're small and simple and pretty and they keep us all calm in a busy world. And there are so many simple things out there to experience, so many ways to take time out, to relax, and to teach our kids to relax too.

So here's a mission, if you read this. Find a simple idea. Do it. Connect with your kids.

Then tell me about it so I can do it too.

Cheers.

Maybe he has SPD?

Today, as we watched our son attempting to keep up with the other kids as they ran across the church lawn, all dressed in various super hero costumes, my husband leaned in close to me and whispered: “I love our boy. He’s so special.”

I had to agree. Our little boy, just turned four, is incredibly special and is determined to have fun despite the things in life that hold him back.

My last post touched on the fact that my one year old daughter has been diagnosed with Spinal Muscular Atrophy (SMA). She cannot walk, or crawl, or do most of the things we all take for granted. She is determined to live life despite the odds as well.

My son can walk and even run, albeit rather slowly and awkwardly. He is a really cute looking kid and very intelligent. At a glance he looks completely “normal”. His battle happens out of sight for the most part.

My little boy has something called Sensory Processing Disorder (SPD), a condition related to his Ehlers-Danlos Syndrome (EDS). EDS makes his joints loose and his muscle tone low, hence running, jumping and generally keeping up with the other kids is hard for him. We cope with this, and we generally cope with it quite well. He wears orthotics and we see an Occupational Therapist each week to work on his fine motor skills like cutting with scissors, writing and drawing. SPD is the real struggle and it’s a disorder that doesn’t get a lot of press.  

SPD Australia writes that, “people with SPD misinterpret everyday sensory information, such as touch, sound and movement. They may feel overwhelmed by sensory information, may seek out sensory experiences or may avoid certain experiences.”

For my son, the world is a very full-on place. He can’t cope with loud noises like the vacuum cleaner and he freaks out at the sound of a dog barking. He can’t stand anything he considers “hot”, so food has to be basically room temperature and his bath water needs to be tepid so that he doesn’t freak out. It took a long time for him to be able to go into water at all and he is still very nervous of the beach and can’t cope with water on his face. He struggles with toilet training and with knowing when he’s hungry and thirsty. Overly bright rooms make him freak out and parties send him into sensory overdrive. 

Some days can be really tough.

He’s an emotional kid too and the smallest things can set off a melt down because he perceives the emotions of others and interprets their actions and then his brain magnifies them and he experiences all of that emotion and has no way to let it all out. 

I have to remind myself quite often that despite his intelligence he is only four years old, which is very young, and that he needs to be treated with a great deal of empathy and gentleness. 

Now, this isn’t a blog of self-pity, it’s a blog of ideas and I am on a mission to raise awareness of SPD. I’m not necessarily a fan of labels but I’m definitely not a fan of people interpreting my son’s behaviour as “naughty” or “acting up” when really he’s in sensory overload and can’t regulate his behaviour due to unwelcome stimulation. 

So, how do I do it? How do make people more aware of what life is like when you have SPD?

My first idea is to simply tell people, up front, that his behaviour is due to SPD. I think I need to make a pamphlet to give out, informing people of SPD and what it means for my child. Of course sometimes it isn’t appropriate to go around telling people all that information and then forcing a pamphlet on them so my second idea is for a couple of t-shirts with the words Sensory Processing Disorder printed on them in big letters. That way people can ask me about it and then go away and do their own research.

My third idea was write this post, letting people know a little more of what life is like for people who live each day in the sensory minefield of SPD. Check out the website www.spdaustralia.com.au for more info and feel free to ask questions.

My final thought for the night is that raising a child with this condition has made me more aware and understanding of the behaviours of others. Some days my son can be very challenging and if I am not at my best I can lose my patience with him. On those days I need to give myself a time out with a cup of tea and a sweet biscuit. 

Before I had kids I thought that ratty kids were the result of bad parents or were just bad eggs. I thought the parent who lost patience was just an angry person who needed to remember to put their child first. I thought the kid who collapsed into a “tantrum” at the shops or a party was undisciplined or being manipulative. Now I know better. Now I think, “maybe they have SPD too.” 

I don’t use the word tantrum anymore because my son isn’t “throwing a tantrum” he’s having a melt down and he can’t help it and I find that if  I treat the “tantrums” of others, children and adults alike, I don’t get as annoyed with people and I have more empathy.

My son eventually caught up with the other kids, his superhero cape streaming out behind him and his winning smile lighting up the garden. He didn’t come in first but there’s  a good chance that he was the happiest kid out there. He felt the wind on his cheeks more strongly, the thrill of the race more fiercely, the desire to reach the finish more powerfully. He felt the joy of running with a keenness that many people never will.

My son has Sensory Processing Disorder and it does cause a fair amount of disorder in our lives but it’s also one of the things that makes our little boy special.

And I feel that his empathy is his greatest asset. 

Diagnosis Day.

On Thursday June 7th, this year, my daughter was diagnosed with Spinal Muscular Atrophy. 

I’ve been meaning to write this post for the last month. I wanted to put this out in the world so that when other parents get the same diagnosis for their children they can read about how we felt and know that the way they feel is ok. I have found it incredibly hard to find the right words to describe the experience, have written it out in my head a couple of times but have never gotten to the point of typing it out.

Here goes.

When your child is diagnosed with a condition that is not only degenerative but will likely shorten their life and, before it takes their life will take their ability to sit, move, eat and even breathe, it’s ok to grieve.

It’s ok to grieve for dreams that must be given up. It’s ok to grieve for what will never be. It’s ok to grieve for what will be and for what may be. 

I have grieved for the dream of my daughter's wedding, of watching her walk down the aisle on my husband's arm. I know that marriage may not happen for her, for so many reasons, and that grandchildren are very unlikely, and this hurt deeply in ways I wasn't expecting. I kept my wedding dress in case she wanted to wear it some day. I kept home made baby clothes for her children to wear one day. I keep them still but for different reasons now. I hope that even as old hopes die, new ones may be born.

It’s ok to grieve, and it's ok to grieve multiple times, for new things and old things and in different ways. Your child’s disability and the consequences of their condition are something that you will carry around with you for the rest of your life. It won’t go away, it may or may not get easier with time. It’s ok to return to grief when you need to and for grief to resurface as circumstances change.

But you can’t live in grief.

Because you have in your life, a living, breathing, smiling child who wants you and needs you and loves you.

The necessary companion to grief might therefore be joy.

Joy is different to happiness. There can be joy in pain, joy in struggle. It is a deeper, more long-lasting emotion than happiness. 

There is intense joy in watching my daughter do the things she does well. I watch her scribble with textas and note how well she grips. I watch her stack blocks. I watch her pretend to feed her doll. I watch her drink for a toy teacup. I marvel at how dextrous she is.

She babbles away and points at things she sees follows simple instructions like “put the block in the box” and I marvel at how connected she is with her world and how much her bright little mind is processing. 

I marvel at the love she displays for her family and friends. She is affectionate and open and charming. 

There are a lot of things that she will never be able to do and I think about those things a lot. We spend a good portion of the day doing gentle physio and exercises to keep what muscle tone she has and in my head I have a check list of activities which will each target a specific area, like leg strength, standing, torso strength, range of motion, arm strength, reach, rolling, posture, joint straightening, head control, and more, while trying to incorporate imaginative play, art, outside play, exploration and the puzzles and building games she favours. That’s all in my head, and sometimes I worry that we aren’t doing enough, or worse, that I’m pushing her too hard, but when I am interacting with her, my focus is on praising her and letting her see the joy I feel at her achievements, at her joy.

Joy and grief.

If I could add one final thing it would be: don’t forget your other children. My son is a sensitive and intense boy. He picks up on the emotions of others even at the best of times and he magnifies them. This last month has been a roller coaster for him and despite my attempts to shield him from my grief, my husband’s grief and the emotions of our families, he has felt it, and at times it has left him bewildered, scared and down right angry. He has needed me this month (and in the months leading up to the diagnosis) to show the joy and love I feel for him too. He has needed me as a safe place to fall, as a safe place to crash into and rage against, as a safe place to come back to when the rage is finally spent.

As focused as I am on providing the highest quality of life possible for my daughter, I refuse to let my son feel that he less loved, less noticed or less important.

It’s a hard task.

You need to be kind with yourself. You need to go at a marathon pace rather than at a sprint and you need to be aware that the race track could change direction at any time.

I have really only just begun this journey but these are some of the things I have learned so far, in the wake of the diagnosis, the D-day that changed our world forever. 

I will love you... unless. Sermon on John 15:12-17

I wanted to share a sermon I gave last Friday. It got more criticism than some of the others I've given but I feel like I needed to say it anyway.
Because here's the truth: I'm a Christian. I support marriage equality. I believe that ALL people are made in the image of God and that homosexuality is part of the natural variation on our (and many other) species.
I've lost friends over this issue and that has hurt but then, I also lost friends when I said I felt called to ordained ministry so this is nothing new really.
So here's my sermon, imperfect as it is, a laying bare of a bit of my soul: I Will Love You... Unless.

On one of the happiest days of my dad’s life he stood at the front of his local church, and he waited. He saw a glimpse of white and the cheeky smile of a flower girl and he nodded to his mate Stan who hit the play button on the stereo. 

My mum, the bride, entered the church and everyone stood as the music began, the song she loved more than any other.

(French National Anthem begins)

Now, my mum’s parents had driven out to Port Pirie for this wedding, their first trip up to their daughter’s new home town. They were supposed to have come earlier but my grandmother had broken her ankle two weeks before and so they hadn’t arrived until the day before the wedding. They and my dad’s parents had never met before that day.

As those notes rang out through the church I am told that both the parents of the bride and the groom looked at one another and thought, “Oh no. They’re marrying a Frenchy.” But the next thing they said to each other, so I’m told, was, “We can love a Frenchy.”

Of course my mother wasn’t really walking down the aisle to the French national anthem. It was All you need is Love, by the Beatles. And while both sets of in-laws may have sighed with relief, that doesn’t change the fact that they had made a split second decision to love no matter what.

As it turns out they all get along really well, my two grandmothers take holidays to the beach together and spend the whole time completely sozzled. They were best mates by the end of the reception. That doesn’t change the fact that they made a decision to love regardless of cultural difference and social stigma. 

I like to think that it wasn’t just the bride and groom making a promise that day, it was two families. A church full of people. A church full of people promising to obey God’s command. To love.

Its funny, because I feel like today’s gospel reading is so self-explanatory. Christ tells us to love. To love even to death. To sacrifice. That this is the greatest thing. That it is a command, not an option. 

It should be straight forward. But we just don’t seem to get it. 

We say, “I will love you, unless...” 

I will love you, unless if you vote against me at parish council. 

I will love you unless if your kids are disruptive in church, 

I will love you, unless you’re an evangelical, 

I will love you unless you’re an atheist or a muslim or a Catholic, 

I will love you, unless you’re gay, lesbian, bisexual or transgender. 

I will love you unless you’re disabled, or mentally ill. 

I will love you unless you’re a refugee, or an Aboriginal. 

I might pity you. I might feel obliged to help you, I might not. But I won’t love you because the label I have given you somehow makes you less human than me.

We say “I will love you, unless...” to people every day, in so many ways. Usually when we just pretend they don’t exist. Sometimes in a way that is a lot more confrontational than that. It always hurts them. It always hurts God.

Because it’s a command. It isn’t a serving suggestion. It has no provisos, no clauses. Jesus commands us to love one another “as I have loved you.” 

Jesus loved his disciples, his friends, knowing that they would fall asleep when he had asked them to pray with him on the eve of his death. Jesus loved Peter, knowing he would deny knowing him. He loved Thomas, knowing he would doubt. Jesus loved his friends genuinely and to the point of death even though they so often missed the point of the parables, and squabbled, and asked silly questions. Jesus loved them knowing they would argue over how to run the early church, over what to allow and not allow. Jesus loved them, fully, generously for who they were. Warts and all.

And he told us to do the same.

Even if it meant death.

There are many people these days who talk wistfully of the greatness of laying down one’s life for one’s friend. It is an amazing thing but in 21st century Australia it just isn’t part of our world. 

We’ve romanticized it. 

But what if we said that there was no greater love than laying down your career or reputation for a friend. What would happen if we decided to risk our good standing and stand up for the people we love, or to leave behind our prejudices and publicly try to love those who we once considered unlovable?

I have two friends who some years ago took a stand against homophobic jokes in their workplace. They challenged the fear that lay behind the supposedly “light hearted” taunts even though they weren’t being aimed at them. 

It eventually cost them their jobs. 

They were shunted from department to department, passed over for promotion and eventually their positions were made redundant. They weren’t provided with good references and it took them several years to rebuild their careers. 

It wasn’t laying down their lives perhaps, but it was a sacrifice. And it was done for love.

Love’s a funny word. Our society has really sexualised the word love. Love is kissing and passion and your heart skipping a beat when they enter the room. And it is, it can be. 

But love is also the overwhelming feeling you get when you hold your baby for the first time and the overwhelming feeling when you realise they’re all grown up. 

Love is standing by a friend as they face their demons, accepting someone for who they are, waking up to the same person and the same morning breath every day for twenty, forty, sixty years. 

Sometimes love is letting go.

Love is hugging someone and forgiving them even when they’ve tried to make themself unlovable. 

But love is more than that. 

It’s helping someone who falls in the street, stopping for a chat with someone you know is lonely, letting personality quirks slide because you know they can’t help it, saying sorry first. 

Standing up for someone, speaking on their behalf, advocating for them. 

Because they are a fellow human being. 

Love is more than that too. But I’m supposed to keep this sermon short.

There is a word I’ve been hearing, the last couple of weeks, here at St Richards, and it’s a word which I haven’t heard much of since I left high school. At school we had a verse in our school song which went “Integrity and loyalty are part of our tradition, to walk the ways of Jesus and fulfill our Christian mission.”

Integrity. 

Intergrity means being honest, upright, moral, virtuous. A person with integrity gives up their life for their friend. Integrity is love.

And it seems to me that when we talk about “Proper immigration procedure” or “Human sexuality”  or any of the other “issues” of the day, we’re missing the point. We should be talking about having relationships of integrity. We should be talking about love. 

God came to earth, became human, walked among us and said, “You are my friends, I love you.” 

There was no unless. 

My pop once told me that “Love is the easiest thing in the world and really bloody difficult” but he was willing to love, really genuinely love as a daughter, a French person, if that was the person who made his son happy. 

My grandparents are now all perfectly ok with French people, I should add. It turns out that they’d never really met one before. They have now. They got over their prejudices through relationship.

It’s funny how we build up false ideas of what people are like though, isn’t it, based on the labels we give them. 

But when we actually make the decision to enter into relationship with them, to engage with them honestly, with integrity, when we become friends, when we decide to love, Suddenly, then, we see them as human, the way we are human. 

Just the way God wants us to.