Giving up gluten

We have been gluten-free for two months. It's been a long time coming, for me personally. But it was some reading I stumbled across that linked a gluten-free diet with improvements in childhood hypotonia that made me sit up and listen once and for all.

It's well known that for some people, gluten inflames their digestive system. There's now a school of thought that believes gluten may inflame more than just the gut, affecting muscles, joints, and the brain. Hamish's hypotonia affects his muscles and is neurological in origin (we believe). Avoiding inflammation of his muscles, joints and neural pathways can only be a good thing, so, we decided to cut gluten out and see if it makes any difference.

And there is most definitely a difference.

Of course, it's impossible to attribute it solely to a gluten-free diet, because he may very well be going through a developmental growth spurt too, but both T and I have seen a discernible change in him.

He seems to have more energy. He is talking a lot more confidently. He is moving with better balance and riding his balance bike with gusto. He has started working out how to take his own t-shirts on and off. And he is climbing more and with less fear.

His kindy teachers have noticed an increased attention span, and an ability to stay upright and maintain posture for longer.

A coincidence? Possibly. But I too have noticed a dramatic change in my body. 

Abdominal bloating has almost disappeared along with headaches.My sinuses are clear. I'm sleeping better, and I feel more energised during the day. Before, I was lethargic in the mornings and exhausted by evening (although admittedly that could be parenting!) but, excruciatingly, unable to sleep enough to recover. The dermatitis I have had on my hands my whole life has disappeared and my fingers have stopped swelling, which means I can sleep with my wedding rings on. A little re-introduction test saw me swell like a balloon within minutes after a gluten-free fortnight.

It was a light-bulb moment for me, as someone who, on occasion, felt the need to undo a button after eating just to feel like I could breathe. Mostly, I feel simply lighter - like I don't have a brick sitting in my stomach.

The transition hasn't been as difficult as I thought it might be. This year, we have consciously shifted our diet to include more whole ingredients and exclude preservatives, colours and flavours. Gluten-free recipes are all over the internet and I was already milling grains, lentils and pulses into flour at home. I am still baking, just using a combination of brown rice flour and corn flour instead. 

Kindy lunches have probably been the biggest change, but I've been making batches of gluten-free zucchini slice and savoury muffins, which have gone down a treat. I'll need to come up with a few more options though, or I'll put them off those foods for life.

Weekend eating is a little more challenging, but we're getting there.

And for now, we'll keep it up. 

A letter to my boys: Four

Darling boys, you are four years old. Four. FOUR. In some ways, it feels like the blink of an eye. In others, motherhood feels like all I've ever known.

You have grown - of course you have. It's inevitable. In many ways you have changed so much. But, yet, you remain the same. Your essence, your you-ness, is resolute and unwavering. You are as you always have been - since the moment of your birth - and as you always will be, too, I suspect.

Since having you two, there is no doubt in my mind that we are all born with our personalities imprinted firmly, deeply in our souls. Our job as your parents is to shape your values, your beliefs, and to teach you how to respond, react and moderate. But we have realised there is no shaping of your personalities in our job description. They are far stronger and deeper than our influence.

Roc, you have started to show some remarkable self-control. Of course, you're still a four-year-old, who freaks out at random stuff like dropping your water bottle in the car, but in other ways, you are mature beyond your years. You take deep breaths to calm down. You can snap yourself out of moods. You make decisions about how you will react to a situation. You sing gentle songs to calm Hamish down if he needs it (and me, too, if truth be told!).

You love your family deeply and intensely. You aren't afraid to tell us how much you love us, and you are an incredibly affectionate little boy. You need kisses and cuddles - they right your world. 

You're a bit of a kooky little thing. Things have to be 'just so'. Everything has to be buttoned all the way up, socks perfectly straight, trousers pulled up, laces evenly laced. You have uniforms, or 'outfits' as you call them, for everything, and your clothes have rules. Your blue waffle long sleeve shirt is only worn with your red vest. Your green stripy shirt with the red elbow patches is only for parties. Your skinny jeans are for 'good', and your 'work' shirts are for weekend breakfasts. Underpants and socks must match. Precision in all things. Even your dancing.

You are razor sharp, and super smart. Which isn't surprising; your daddy is the smartest person I have ever met. You do everything yourself, and I'm guilty of treating you as a child much older than four. You are just so independent. I can't remember the last time I had to help you get dressed, or put the toothpaste on your brush, or wash you in the bath. You set the table. Pack the dishwasher. Make your bed, even. You've even started doing up your own carseat seatbelt (which of course I check once you've had your go). 

I sometimes wonder how on earth I'm going to keep up with you, and I certainly wonder how we're going to keep you entertained and stimulated for another 18 months before you start Prep. 

You are capable beyond your years, and I think I forget that actually, you're still a toddler. Still a baby, really. My baby.

I love you darling one. Adore you, in fact. I'm so intensely proud of you. And I am in awe of you, too. I'm so lucky to be your mama. Thank you for making me a mum. It's the biggest privilege of my life.

And my darling Hamey-bear. I am SO proud of you. You have taken this year in your stride. You've been dragged from physio, to paediatrician, to neurologist, to speech pathologist. You charm all of them the second you meet them. I was reading the letter from your neurologist just tonight, and in it he said "Hamish is a delightful 3.5 year old boy". And you are. You are so delightful. And delighted. And enamoured of life.

But aside from all the hypotonia stuff (which, thankfully, will be just a minor consideration in your daily life), you are hilarious. And beautiful. You see the world for its beauty.

We sometimes play 'doctors'. Whenever you stick the pretend thermometer in my ear, you withdraw it, shake it, have a look and announce cheerfully, "You're healthy mama!" You're an optimist. You're not melodramatic. I love that about you.

You're our funny one. The joker. Our little comedian. You're always pulling crazy faces, hiding, pretend-falling, making up silly words to songs, making up crazy dances, putting things in odd places to await our reaction, and generally making us burst into laughter. 

You are so gentle, too, and full of love. You kiss me constantly and call me "pwetty mama, breutiful mama." Sometimes, you are just so overwhelmed with love and happiness that you squeak! We call them your love squeaks, and they are the cutest things in the world.

Despite being the less-talkative twin (make no mistake, you still talk a LOT, but Roc is a force to be reckoned with), you are quietly confident. You aren't shy in front of strangers, and you thrust your arm out to 'shake hands' when you meet new people. I love that you seem to take each new interaction as an opportunity to make a new friend. 

Everyone who meets you loves you. You are the sweetest little boy, with the softest little cheeks. Your eyes are gentle, kind and deep. They reflect love. And people are drawn to you. They always have been. You are one of this world's treasures.

I love you, darling boy. So so much my heart swells up and my chest gets tight, and my throat starts to hurt and my eyes well. It's physical, this parenting thing. I didn't know it would be this beautiful.

As always, my darling ones, all the love in the universe,
Your mama

And time stood still

Everyone has those moments in life - you know, when time stands still and reality crashes into view.

Time has stood still for me a few times in my life, but this? I think this takes the cake.

Hamish, our beautiful boy, has been diagnosed with hypotonia.

T and I feel a little bit like our hearts have been broken. No parent ever wants their child to have to deal with anything that might make their days more difficult.

Perhaps, on the surface, hypotonia - low muscle tone - doesn't sound particularly serious.  Our world is littered with references to tone, toning up, getting toned, building tone. It sounds easy to fix. Just hit the gym, right?

It's rather more complicated than that, and we're still reeling I think.

The truth is that the amount of tone your muscles have is the amount they will always have. It can't be fixed. It's got nothing to do with strength. People with low muscle tone don't have as much natural tension in their muscles, so they're harder to engage and harder to control. Low muscle tone also comes with extra-long connective tissue between the body's joints, so limbs and joints are generally a bit floppier, a bit softer and more prone to injury.

Hame tires easily. He gets sore legs. He is prone to chest infections. When he was a baby he had trouble with tummy time and holding his head up for periods of time. His body starts to slump as the hours go by. He falls, and he's not able to fully support his body weight. He doesn't complain. Each individual symptom is barely discernible, but we, of course, have noticed.

We've done everything for this beautiful baby of ours for his whole life so far. There's nothing we wouldn't do. But we can't do anything to change the cellular construction of his muscles. We can't change the length of his connective tissue. We can't accelerate the time it takes for messages from his brain to reach his muscles, and we can't change the fact that it takes him 22 times the effort to engage his muscles, or stop them wavering when it all gets too much.

And as heartwrenching as it was to hear that his condition wasn't something that could just be 'fixed' and 'he'd be right', it was like someone switched on a light bulb. Everything fell into place; it all made sense. In our heart of hearts, we knew there was something.

In Hame's case, it is most likely to be prematurity that caused his hypotonia. While born at 33weeks and 5 days gestation, my babies suffered from intrauterine growth restriction and were born at the size of a typical 28-29 weeker. The brutal truth is that he missed all those vital extra months of growing - time when his tiny little body would have developed fully, and made all the connections it needed to.

But strangely, amongst the sadness, I feel incredibly grateful. We are so lucky. Hamish is so lucky. We have access to so much medical knowledge, expertise, and early intervention therapies. We are resourceful, and dedicated. We will do whatever he needs and whatever it takes.

Above all, we have love. That little boy is so so loved. So cherished. And he is so happy. This brilliant, joyous, delighted little boy shows us each day how lucky we are.

He says that when he grows up he is going to be a superhero. I think, just maybe, he already is. He is remarkable.

We are blessed.