Tag: gratitude

Once Upon a Time…

Once upon a time there was a Mum whose baby just didn’t seem quite right. He wasn’t doing the baby stuff that all the other parents said their babies were doing, he hated being fed, he loathed sleep and he cried a lot. Like screamed, all the time, way more than babies usually do. His Mum had never been a parent before, but deep down inside she knew that something wasn’t right, so she visited doctor after doctor trying to explain that she felt in the pit of her stomach that her baby’s body wasn’t happy and perhaps it had something to do with what she was feeding him. Only to be told, that what she was experiencing was normal. After a long time, someone finally listened and perhaps agreed that he might be reacting to what he was being fed, but only because his weight on the chart now reflected that he should be investigated further. From then on the Mum decided to listen to her gut more often and follow her instincts, and mostly, they lived happily ever after.

Twice upon a time there was a Mum who had learned to listen to her gut for the health of her baby. She gave birth to her second baby, who very quickly became unwell and in a lot of pain. She visited the doctor, again, even though she had very broken trust from past experiences and suggested that she knew her baby was reacting to food she had eaten. The doctor completely squandered her suggestion and told her that it was rubbish, and to eat whatever she liked and sent her on her way. The mum knew herself, she knew her baby, and she followed her instincts. And it turns out, she was right (again!). For two years she fought for the health of her son, and not only was she heard in the end, but she lifted his health above and beyond what was ever expected and used her experience to help inspire and empower other Mums who were also fighting to be heard. And for the most part, they lived happily ever after.

Thrice upon a time, there was a Mum who could tune in to that quiet inner voice, deep within her gut, the one full of doubt, but reason, despite being broken over and over. She trusted herself and her baby to lead them through the right path to health and happiness. When her third baby was a few weeks old, covered in fiery, sore skin, on her face, all over her back and down her arms. she ignored the suggestions of hormone rash and cradle cap, and she found a strange suggestion in the voice in her gut. (The voice told her that her baby was reacting to coconut, which really sucked because she was already dairy free and all the yummy treats were made from coconut!) She listened to it, and within three days her babies skin was miraculously clear. She continued to tune in to her most inner Mum voice and her baby has been the happiest and healthiest of all the children, and in fact at two years old has never needed to visit the doctor. And so far, they lived happily ever after.

The moral of the story? That voice inside your gut is there to be listened to, it knows more than you could ever imagine. No one is more expert on your child than you are. If someone tries to tell you it is normal, and you know it’s not, tune in to that voice and search for the answers you are looking for. If you are going to trust anything, trust that voice that holds your Mum instincts. Sometimes you might need to gently peel away layers of fear, or pride, or anxiety, to hear it properly, then when you get that niggling message, make sure you don’t ignore it, it’s trying to tell you something important.

Kayla2 Comments

Why we left behind our quarter acre dream

While most people tend to outgrow their houses when they add to the tribe, our family of five has just downsized! We have left behind a quarter acre land with chickens, bees, fruit trees, berry bushes, veggie garden, outdoor kitchen area and plenty of (neglected) grass and sheds, and large 1920s bungalow. Instead we have downsized to a section half the size and a nice tidy little house across town (that’s five minutes away, for you city folk!)

While leaving behind a lifestyle that enabled us to supply our own eggs, honey, fruit and veggies was a little sad, while we were there we were left with little time to focus on the things we love most. Our house was enormous but cold, drafty and old. we spent a lot of time sorting fire wood to heat the place and it took ages to clean and tidy even after we decluttered nearly half our possessions. I am often home alone with the kids, for sometimes weeks at a time with little notice, I just didn’t have time to upkeep such a big section, all the pets, and the house, let alone keep the kids alive and make sure they have allergy friendly food made for each meal. It was really stressful trying to juggle everything.

Our new house still has enough backyard for the kids and dog to play, for a small veggie garden and a green house (and maybe a couple chooks if I can convince Chef Dad 😆). The neighbors behind us have land with fejoa trees along our whole fence line 🙌. Our house is warm and dry and easy to heat and set out so i can watch the kids play outside while I’m in the kitchen. Really hoping less space means less maintenance and upkeep and therefore more time to do the things that we love. Which for me is blogging, cooking and writing! And of course spending time with the kids without having to worry about the wall that needs painting and the fence that’s going to fall down.

In our case, bigger isn’t always better. Sometimes it might sound like someone is living the dream, but you just don’t know, behind the scenes what sort of stress is being created to upkeep that life. It was a huge decision to admit that we were in too deep, and there was blood sweat and tears involved in the buying, selling and moving process. In fact I think I’m still in fight or flight, but Just in this short week post move, I’m realising how much of a valuable decision we have made. So here’s to onwards and upwards, moving on to bigger (but actually smaller) and better things, and hopefully more free time to do the things that matter to us most.

Kayla

Confessions of a Healthy Food Blogger

I share a fairly popular recipe for zucchini cheese – but I never make it myself, and always buy that super expensive vegan cheese from the supermarket.

I don’t like Brussel sprouts, I think they taste like farts. I live with three males (five including the cat and the dog) yes, I know what farts taste like.

My kids won’t eat frozen peas, in fact they won’t eat frozen mixed veggies either. Purely to make my life difficult. Except this one time I told my friend that my kids don’t eat peas and my 1 year old then stole and ate all the peas from her sons lunchbox.

Ashton, just Ashton. Ashton is incredibly fussy. He has the most ginormous list of foods he won’t eat, and bunch of finicky food preferences that I often comply with because I hate the moaning at the dinner table. If you want a winge-fest serve roast chicken (unless it’s a supermarket rotisserie basted in all sorts of non allergy friendly crap that he shouldn’t eat), or potatoes, especially mashed, roasted is marginally acceptable but only if they are cut into 1cm cubes, and crisp, but not too crisp, heaven forbid. Or try soup – if it’s soup, it’s inedible. Make sure you have you best gag face at the ready to make a performance at the table on soup night. Also if its marginally spicy, it may as well be poisonous. Someone save me from this kid he is a healthy food bloggers worst nightmare.

My kids won’t eat my homemade hummus, the two little ones just straight up won’t touch the stuff while Ashton will only eat “Lisa’s” hummus original flavour.

Sometimes I eat proper crisps for breakfast … and let the baby join me.

None of my kids eat raw carrot sticks, but I put them in their lunchboxes all the time because they look good in photos.

When I was a kid I used to steal meal mates crackers from the pantry and eat raro juice sachets like it was sherbet.

My mum buys the kids allergy friendly biscuits and chocolate and I eat it all myself.

Our children are allowed pudding once a week. But every night when they go to bed we eat chips and chocolate and mug cakes.

Most of my blog photos are taken on our bed covered in white sheets, or on the floor of our snail infested sunroom (best lighting in the house 😆)- I peg an upside down piece of scrap vinyl to a portable clothes rack to bounce the light off. Once I spilled a milkshake all through the bed during a photo shoot.

Sometimes I lie to the kids about what they are allergic to, so they don’t eat too much sugar, because I can’t handle the meltdowns.

Anyone else got anything to confess?!

Kayla

Allergies, Trauma and baked beans

When I was in my second year at university someone brought us this huge tin of baked beans. It was beyond massive, 3kg or something of baked beans in this colossal tin. It was so big no one wanted to open it. It had so many baked beans in it, once the tin was open, no one knew what we would do with them, how we would eat them, or how we would organise and store them. So the tin sat unopened in the cupboard of our grubby Wellington flat. It was carefully tucked away and it didn’t bother anyone, sitting nicely in storage for the duration of the year.

Recently I thought back to this tin of baked beans, and to what might have happened if we decided to open the tin. Now, after some recent events, I think I might know how that may have unfolded.

As many parents of children with allergies will agree, that this diagnosis comes with some degree of trauma. Whether this is a traumatic flash back to a horrible allergic reaction – witnessing instant hives & swelling take over your child’s body or face, vomiting repeatedly until limp and lethargic, a trip to the hospital while breaking the speed limit, or worse yet in an ambulance or helicopter! Or sometimes it’s a flashback to moments in time – weeks of rubbing creams on inflamed, red itchy skin and soothing a child who lives constantly in pain, on the inside, or outside. While we are living in these moments our bodies go into fight or flight, we just want to get through each minute, or each day.

But when the dust settles down, what do we do? Some of us breakdown, worn thin by the event we finally crumble and find an outlet for the shock, worry, anxiety and trauma. Some express their worry, or grief in the only ways they know how. Some feel gratitude and relief.

But what happens when you live in a state of angst and worry for weeks, or months, or years? As many parents of allergy sufferers do, because often, advocating for these kids isn’t a one time event. Some probably find a regular outlet, a safe person or group to express or share, family to fall on. Some might seek professional help, counselling. Some might delve into self care to negate all the time and energy spent on traumatic events. And some, cant face up to those emotions right now, so they take their experiences, cram them into the worlds biggest can of baked beans and pop them away in the back of the cupboard.

Except there’s one problem. As I mentioned earlier, when when the neglected tin is suddenly discovered, sometime later, no one wants to open the baked bean monstrosity, because if you open such a big tin all at one time you are going to need a fuck load of friends to share it with! And in this day and age we just don’t seem to have ten mates turn up, all on the same day, ready to help us eat a massive portion of baked beans, even if they don’t like them, or weren’t prepared for them before they arrived.

I ‘spose you can probably guess how I dealt with the years of food allergy angst we experienced with Felix. Except the crazy thing is, I didn’t even realise that I tucked those feeling up for safe keeping, because when I popped them away, I replaced them with gratitude, greatfulness and happiness that our journey was making so many positive leaps. I had tucked the tin of baked beans so far back that there was heaps of room in front so I filled the space close to the door with everything great about life, despite all our struggles. And then, there was no place for grief, anxiety or sadness, they made the cupboard messy so they got pushed to the back. (Can anyone else’s linen cupboard relate to this!?) Ive noticed that, as humans, we have come to quite like the look of order and organisation and not so much a big pile of mess out for days or weeks, while we make spaces and sort it back into its places properly.

So, at some point all the well organised feelings at the front of the cupboard are all being used, usually during big changes or life events. Kind of like when you have a new baby. You might find the linen cupboard bare at times as you find time to adjust to life and catch up on all the washing. You also might find your emotional cupboard a little scarce as you pour everything you have into late nights, little sleep, and caring for a little being 24 hours around the clock. In fact, this year when we had our third baby, the cupboard got pretty bare and the old, somewhat rusty can of baked beans sat exposed, naked and glaring out.

At some point, each of us will experience a repeat of some of the events and feelings tucked away in the baked beans can. For me, it was a replay of baby rashes and eczema after something I’d eaten. Even though it was no where near as severe as with Felix it felt like ripping a plaster off an old wound that just won’t heal. When you haven’t properly put the past away, you spiral straight back into the feelings of distress and fear, of hopelessness and knowing the journey that we have to travel all over again. The feelings are tripled, and compounded, even though you are now equipped with experience and knowledge. It doesn’t feel very helpful because there is a huge mess you made two years ago piled underneath all the linen that fell out of the cupboard just now.

While I was very tempted to leave it be, I decided it’s time to open the (metaphorical) can of baked beans. I don’t even like baked beans, not to mention some of them aren’t even gluten free! Anyway they spilled out all over the floor, like everywhere, overflowed and made a huge mess that I wasn’t really prepared for. Each bean is smothered in bitter memories and unpleasant emotions that got sealed up inside and here I am amongst the huge mess trying to find a way to tidy it up. Some days I make a good dent and manage to file away some of the mess nicely and other days the tin tips over and makes a bigger mess than there was before.

The lesson here is, when they are happening (or soon after) feel all the feels. ALL the the feelings, even the real shit ones. Don’t be a Harry the Hero and soldier on. I should have let myself break down and ugly cry, and taken more time to acknowledge that yes, while I was grateful things weren’t worse, they were actually pretty shit. And that’s ok, because life is a bit shit sometimes. If it was good all the time then that would be boring and we probably wouldn’t learn any deep lessons or gain better morals and values. I was so busy trying to live life like an inspirational quote, I forgot to realise that it’s ok to be sad about all this.

I just know that there must be others out there, other parents who have experienced a traumatic situation, which may or may not have been to do with their children’s allergies, that have probably done what I’ve done and shoved their feelings in a great big tin. Perhaps you are yet to discover them, perhaps you have and you totally understand where I’m coming from right now (I’d love to hear how you tidied up the mess?) or maybe you are in the middle of the discovery of stale old feelings and ripping plasters from open wounds. Or perhaps you are in the eye of the storm, and I might have just prevented you from dealing with these feelings in three years time, instead of embracing them, right now.

Wherever you’re at, or however you relate just know that you are not alone. It’s ok, ideal even, to feel sad, grief, ripped off, exposed, traumatised. It’s ok to not be strong – sometimes being strong is allowing yourself to hurt and feel pain. And then to seek out support, or let others give you hand to get back up. Be kind to yourself while you sort your feelings out and take time to sort through them and file them away in the best place you can manage. Before continuing on your kick ass way. Now, if you excuse me, I’m off to follow my own advice.

**If you are like me and writing provides a good outlet for expressing and organising your feelings, I’d love to hear your story. I’m thinking of opening a page on my blog, a place for you to share your story to help and inspire others, and let them know that there is hope on the other side.

Kayla

What it feels like to eat only 10 foods, for 10 months.

Watching your baby break out in hives while he is still laying on you, actively feeding is a bit of a life changing experience. This is how I came to eat only 10 foods, for ten months, to keep our son safe.

You might have read on Felix’s story, that he reacted to many, many foods. I think I stopped counting when the list went past 20. Every. Single. Thing. I ate seemed to pass through into my breastmilk and the effects on him were sometimes instant.

It all started when he was about 2 days old, after every feed he seemed to break out into little hives. I googled it and asked the midwife, but in a bit of denial I just hoped they were the ‘newborn rash’ I read about in my online search, after all, whose baby shows signs of allergy at two days old! Deep down though, I knew something was not right. By 10 days old Felix was having reflux, uncomfortable bouts of colic like screaming, little to no weight gain, and dark green and mucous filled stools. While we could attribute the low weight gain to a tongue tie issue we were working through, when I showed the midwife one of his nappies she agreed that it looked like he might be having a reaction to something I was eating, so I cut dairy and soy out of my diet.

After 2 weeks, I saw a small improvement, in that he would sometimes have a normal newborn mustard coloured poo. How exciting! Poos – colour, texture, smell …  a common topic of conversation in our household! Something that can make one happy, relieved, excited, or worried and anxious around here, who would have known poo could have so much influence. Anyway, he was still having reflux, colic, rashes and after two ‘normal’ poos he would then produce an intergalactic green frothy number or something that resembled a tissue after you have blown your nose! Not good. I noticed particularly after I ate eggs, things went downhill. So when he was about 3 weeks old I decided to eliminate eggs, nuts, fish, wheat and peanuts from my diet. When you are used to bread as an easy go to staple and rely on things like nuts and eggs for a quick snack, a total and immediate ban of all of the above really rocks your world. I would have 5 mins to quickly run to the kitchen to make a snack and would find myself frying up some broccoli and bacon! Even though I had heaps of experience with label reading from Ashton’s allergies, doing it for myself was a whole different ball game. Should I avoid traces of? Packed in a facility with? Where the heck is dairy in this – it is not in the ingredients list but it’s in the allergen warning! Heads up – usually it’s in the ‘colour’ or ‘flavour’ description on the label. Now I thought I had a pretty healthy diet before, but it was surprising how many times I used to reach for toast as a snack or grab some sort of chocolate bar at the supermarket, or get a muffin with my coffee. You don’t realise until you can’t do it anymore! It was quite an eye opener.

About 1 week into the new can’t eat anything diet it was becoming apparent that we were not seeing improvements like we had hoped. Plus, Chris and I were getting quite wary with taking turns to hold Felix for over 6 hours every night while he screamed inconsolably. I’ve never prayed so hard for a baby to take a dummy. He didn’t, by the way. He just gagged on it and spat it out. Then resumed screaming. I remember feeling good that we were trying something, because what did we have to lose. But the feelings of overwhelm, loneliness, and confusion are still so raw. Why him, why us? So much of our culture revolves around food, if I wanted to associate with other adults then I had to face the disappointment of not being able to join in at morning tea, no shared biscuits, no sorry you can’t make me a coffee. And so many people just don’t understand, ‘surely one egg won’t hurt?’ or, ‘It’s only got a little bit of dairy in it?’ Even health professionals had varying opinions, some of them adamant that food proteins cannot get to baby through breastmilk, most of the ones who understood were the people who have experienced it themselves. Honestly – who sits there and tells a mama whose baby has clearly had a reaction to something she ate, that it’s impossible – here is the baby, here is his rash, here is his screaming, here is his weight gain (or lack of), and if you don’t take me seriously in a minute I will have to show you a picture of his shit, yep I have a photo of that too, several actually, just incase people like you thought he might be reacting to thin air!

After about two weeks on the can’t eat anything diet it was time to take drastic measures. I cut my diet down to rice, pumpkin, bok choi, carrots, kumara and lamb, plus salt and pepper. This is what I referred to as my Total Elimination Diet (TED) sounds about as exciting as it was.  If I thought that the first attempt was hard this was level twelve hundred. What on earth goes up to level twelve hundred, nothing, because it’s so extreme! Breastfeeding is hard work, and hungry work, I was hungry all the time and found myself needing to eat huge amounts of food. Which totally sucks when you only have about 6 foods to eat. I would be at the supermarket every few days stocking up the trolley with huge amounts of my 6 safe foods. Lamb mince, lamb chops, lamb loin, lamb shoulder, lamb shanks – how many ways can you eat lamb! Some of the things I found myself creating was pumpkin risotto, pumpkin soup, lamb broth with safe veggies, roast meat and roast veg, fried veggies and meatballs, meat patties, lamb chops with rice and steamed veg, kumara chips with pumpkin puree for dipping, lamb meatballs, grated carrot and kumara fritters. I rendered lamb fat off the meat and used it to fry and roast in. During this extreme elimination phase we had to travel up to Hamilton to have Felix’s tongue tie lasered a second time as it had reattached. I had to cook myself enough food for the two day trip there and back, it was just so time consuming. All with a 3 year old and new baby to look after too. But I trucked on because what else was I going to do!

It’s crazy, really, when you see someone walking down the street or strike up small talk in the shopping queue, you just have no idea what they are going through. They might have just lost their Mum to cancer, or divorced their husband or wife of twenty years. They might have a child in hospital, or they might be doing it tough fighting with mental illness. They might also have a very sick baby that seems to be allergic to pretty much every food and the only way to keep them alive is to live off hardly anything to feed them safe breastmilk. You just don’t know the internal struggles. To the outside world I just looked like another Mum to a new baby, doing it tough with some sleep deprivation and colicky baby. People would say – ‘oh I know, i’ve been there too, it’s so hard. Yes my baby used to scream when I ate chocolate.’ The outside of me would smile and nod – yes that bloody chocolate, I bet it was tough avoiding chocolate for a few weeks. The inside of me would dive onto the floor and roll around laughing an uncontrollable, loud and rude cackle, slapping my hands to floor and snorting “Fucking chocolate, oh you poor thing, I just can’t begin to imagine all the extra work, the worry, the pain, the suffering, all the extra food prep and same food day after day, not being able to eat anything outside the house”. Then id scoop up my dignity and smile and nod some more. By the way, If you were someone who said this to me, in no way, shape or form did I judge you for this (i only laughed at you internally while I wallowed in my own self pity) because I actually do understand. It doesn’t matter if we are avoiding one food, or ten (or seven hundred and forty six) the change in routine, the move away from the known, the need to be cautious, careful and a little bit different, is still the same. Having to turn down food at every corner and the lack of understanding and support from the people surrounding you. The worry over the happiness and health of our babies is still the same. Though there are not too many people out there who can truly relate to the extent of what I went through, I can relate to them, to you, the ones who lived a snippet of our lives.

About 1 week into the new diet we started seeing some really positive improvements with Felix, he was content and happy sometimes, and was only crying for a short time in the evening then settling off to sleep. Hallelujah! It was so, so difficult for Chris to watch me go through the torture of a 6 food diet but once he saw the change we both knew it was the right thing to do. After two weeks I was pretty damn sick of eating the same food, the smell of lamb cooking nearly made me gag. It was time to branch out and try some new food! First I tried potatoes, solely for the purpose of if we were out I might be able to order some hot chips! It seemed to be a success. Next I thought I might try oats (looking back now this was a stupid choice, but if anything, it helped to seal the deal in letting us know there was actually something quite wrong with Felix!) So I ate oats for breakfast and then I breastfed Felix about 30 mins later. As he was laying on me feeding I saw his body begin to break out in hives right before my eyes. They started on his face and around his mouth and by the end of the feed were spread around his entire body. He then proceeded to scream inconsolably for 3 days straight. Never again! So I was stuck on my 7 food diet for another week while we waited for him to come right again. In the 4 weeks of my drastic diet I managed to lose 15kg with the scales moving down every day. I gained about 20kg during pregnancy so this was okay and I was at least feeling good to be back in my old jeans so soon!

Next I tried some chicken, please someone give me anything but lamb! Chicken also seemed to be successful and when I was alternating chicken and lamb the green nappies became less common. So using my newly found detective skills I decided to remove lamb and just eat chicken. Because naturally when you have just added a new food into a 7 food diet you should probably up the anti and take another one out, right? This became the start of my follow your gut mantra. Because it turns out he was reacting to lamb and life after chicken was just perfect!

Next I ate avocado and coconut which were a roaring success. Especially coconut. It was probably the most exciting thing to happen to me that year! Coconut oil, coconut cream, coconut milk, coconut flour, coconut butter, coconut flakes, desiccated coconut, oh the possibilities! Best day of my sad little 8 food existence. And fat, oh glorious fat, I was still losing weight really rapidly so I had to eat a spoonful of coconut oil at every meal. I stayed on this diet for another two weeks just to relish in this new baby we now had, too scared to upset the apple cart after all the hard work. It was salad season, and I remember cucumber and lettuce also being exciting introductions (yep, exciting life I lived at that point). I also drank chamomile tea and it was so nice to have a hot drink. I had to take a tea bag with me everywhere because the certain brand of organic chamomile was the only one we knew was safe, it wasn’t worth risking trying another. There is just something so humbling about being able to enjoy a hot cuppa with other people. It’s what we are made for! To eat and drink together, and that was taken away from me. It’s really hard, harder than you’d ever imagine, knowing that you cannot join in because it will make your baby really sick if you do, and trying to explain to people every time, he has allergies and I can only eat 8 foods. It did make for an interesting conversation starter though!

So as the seasons changed and different foods came in and out of season, i’d swap out the cucumber for asparagus and lettuce for courgette. So over the year the veggies were varied a bit, but generally my diet didn’t include more than 10 different foods at a time. When avocadoes became $8 each then I swapped them with olive oil. Generally I served the whole family the same dinner as me, i’d just add extras into theirs like a different meat, eggs, nuts or seeds, so it wasn’t too much extra work, because constantly having to prepare my food relentlessly, every day was really tiring. I couldn’t have any fruit, oh how I longed to just eat a banana, all the foods in my diet had to be cooked or prepared in some way first. My one treat of ready made food was Proper Crisps potato chips – mostly because they are delicious but Felix seemed to have no adverse affects if I ate a bag of these whereas if I ate a bag of standard potato chips he’d become a bit fussy – the only difference is Proper Crisps are not cooked in canola oil like the others. I remember coming home on playcentre day, starving, not having had anything to eat for hours and I would eat an entire family sized bag of Proper Crisps just to get me through putting Felix down for a nap then preparing myself some lunch. I totally justified by saying it might stop me from losing another kilo! And they were delicious.

At various times, I tried eating apples, bananas and pears which all caused horrific acid-burn-everything-it-immediately-touches-nappy rash and body rashes. I gave up on fruit after that. And I tried a couple of nuts (almonds, cashew and walnuts) all of which caused varying degrees of hives, gastro upset, fussiness and rashes. He reacted when I ate hummus, I was never sure if it was the tahini or the chickpeas so easier just to avoid them both! In fact he reacted to anything that wasn’t the 10 safe foods. 

During this time, I was training to be a breastfeeding peer support person, and every week we would have a lesson and then lunch. Instead of buying in the usual affair of pre-made sandwiches and slices etc, the two lactation consultants running the program would bring in a hot roast chicken and salad items and buns for a build your own sandwich lunch so I could join in and eat the chicken and salad stuff. I don’t think I will ever forget gestures like that. When you are living in a world where you pretty much cannot eat a single thing outside of your own home, going to a meal once a week that I didn’t have to prepare was the stuff dreams were made of! I looked forward to wednesday every week! If you know someone who is on a limited diet, please don’t be scared to help out by making something, ask them what they can eat, or for a copy of a recipe they make (make sure you specify oils etc with them!) and make them a meal or cut up or prep some safe veggies or meat so it’s easy for them to prepare something for themselves. If YOU are on a limited diet and in need of some help, don’t be afraid to trust someone, be specific, and ask for help! I think everyone got too scared to help out because they didn’t want to make Felix sick, but in the end I gave out some recipes I had been making and my Mum cooked some food for me, and it was such a sanity saver, I just wish I had asked for help sooner.

By the time Felix was 5 months old, I had lost 25kg. All my pants were loose, I look back now, on photos of me around that time and cringe at how gaunt and bony I looked. I would try really hard to eat enough, but sometimes there was nothing in the house safe for me to eat! Or we were out and it was difficult to find safe food. Those days were definitely down days, the days that I was so hungry, and nearly wasting away, but there was nothing substantial to eat, or Felix was grizzly and I would find it difficult to find time to prepare myself something or finish a meal. Those days I just wished the food fairy would show up on my doorstep with a hot, safe meal. Luckily after another month or so, my body started to adjust to its new diet and I stopped losing weight.

When Felix was 8 months old we finally got to see the allergy specialist, who diagnosed him with FPIES, – an allergy that presents in the gut, and he said that even though all the literature suggests that babies with FPIES don’t usually react through breastmilk, most of them actually did. I had suspected FPIES for quite a while because when I had searched and asked around this seemed like the common diagnosis for babies who react to all sorts of strange foods like kumara, banana, chia seeds and most commonly, oats and rice.  And it turns out there is a whole network of Mum’s out there who are living off ten foods (and sometimes less – up to 3 foods) to try and provide their babies with safe breastmilk. Some here in NZ, others in Australia, and an abundance over in the US! I was not alone, which was humbling, but scary to know so many other parents and babies were sharing my reality. There were some Mum’s in the US, with FPIES babies, living off 3 foods! I got to meet some of the NZ Mums when I went down to Wellington, and being in the same room with people who actually know first hand what you are going through is something words struggle to describe. Through this i’ve also met a bunch of other mums who have eliminated foods for the sake of their babies, and even though they harp on about how well i’ve done, I take my hat off to every single one of them. They are all truly amazing, dedicated and strong in every way. We share a strong sense of drive, determination and a hunger for knowledge, always looking for what else we can do, and searching for answers beyond the standard information given to us. Like I said, it doesn’t matter if you are avoiding one thing, or only eating ten, a special bond can be shared between the mum’s who have sacrificed food for the sake of their children’s health. Food is life! It’s a big sacrifice, and one that takes true dedication and drive.

Just before Felix turned one, our breastfeeding journey came to an end. With no end (so to speak) in sight for me being able to expand my diet anymore, and him not being able to tolerate any solid food, a lack of weight gain, and one exhausted Muma, it was time to call it quits. I tried my very, very best and could not have done any better if I tried. Felix was waking every 3 hours around the clock to feed and despite me producing over a litre of breastmilk a day, he was not gaining any weight, a blood panel also showed he was lacking all sorts of important nutrients, I guess because of my limited diet for so long, and his inability to absorb nutrients due to probably reacting to one of my ten foods.  So we tried a hypoallergenic formula (which is a bit of a story in itself – but we got there in the end) and just like that we were done. We are so lucky that the formula is safe for him, because some FPIES children cannot tolerate any formula and the mothers have no choice but to keep eating 3 foods, to produce a safe nutritional source for their little ones. We are lucky, and I am grateful. There were days where I cried into my chamomile tea, and hated the world because I couldn’t eat an apple or a banana. There were heartbreaking moments of watching our little boy suffer when I ate something he reacted to. There were many moments, when I stared into blue eyes that reflected pure love, and I was so proud that I was able to nourish my son, though my hard work and dedication. Breastfeeding a baby with allergies is probably one of the most challenging things I’ve ever done, but I would not change this experience for the world. 

 

On a side note, if i still have you here, you are probably wondering, ‘what on earth lady – why didn’t you just give him the formula sooner!’ There are many, many reasons why, some physical, some emotional, and some scientific. For a start i have read a large number of research papers on the role breastfeeding plays in allergies, the gut microbiome and the immune system and knowing how seriously beneficial and how amazingly complex breastmilk is for a babies gut, i just couldn’t not try! Reactions or not, there are studies that reveal the microbes present in breastmilk play a very important role in the way digestion is formed and how the gut works, allergies, essentially all lie in the gut and if I could do something to help promote good gut microbes and bacteria, then that is what I would do! Breastfeeding was addictive, the surge of oxytocin at every feed was intoxicating, despite all the struggles. I did not experience this with Ashton, as i didn’t breastfeed him, and i have developed a very special bond with Felix through feeding him. Knowing what I know, and even after what we have been through, I’d do it all again in a heartbeat.

 

Kayla

Why i’m so grateful for having kids with food allergies

It did take me about 4 years to realise it. But having kids with food allergies is one of the best things that has ever happened to me.

They say every person that comes into your life does so for a reason. My boys have taught me more in these 5 short years than I learned in my entire life time. They have taught me love and dedication like I never thought possible. They have taught me compassion and empathy.
They have taught me gratitude and mindfulness. They have shown me I am a powerful force to be reckoned with, fierce with strength, courage, determination and passion. They have taught me patience and persistence. I thought I had it all figured out, but they have changed me in ways I never imagined. They have taught me that perfection is just a word, not something to strive for. That there is beauty, peace and love in every day, and it is our job to find this, be it within our environment, or ourselves. I have learned that the universe doesn’t owe us anything and being happy is our responsibility.

I spent a long time after the birth of Ashton, trying to find myself again, I searched in all sorts of places and I realised later that I would never find what I was looking for. Having a child changes you, but having a child with extra challenges also changes you.

I had this beautiful premonition as I set up the baby’s room, 8 months pregnant, of what life will look like. I would will feed the baby calmly and quietly to sleep in the rocking chair. I would go for picturesque sunset walks along the beach with the baby and the dog. Life will be hard and I will be tired but being a parent will be so rewarding. Fast forward two months, I am taking the baby for a walk but it’s 9am and he has been screaming for 6 hours straight, he has done nothing but scream for the last week. He is covered in rashes and vomits up all his feeds. I’m pretty sure the dog hasn’t been fed in two days and i’m not sure when I last had a shower. I’m very seriously considering which house to drop the baby off at (like actually, this was a legit plan, my mum had to come and rescue him!) I haven’t slept in 10 days. Unfortunately it didn’t get much better for about 6 months! At which point the doctors said that I was only partially crazy, and Ashton actually had food allergies. Parenting was not rewarding. I was all “why me, why us, why him”, “what did we do to deserve this?” Everything was always about poor Ashton and how he couldn’t have this or that. There was a lot of moping around about how we missed out on the first year of his life because I couldn’t get a doctor to diagnose his allergies sooner. He was on all sorts of medications for reflux and stomach issues and it was all quite a sad state of affairs.

The days were long but the years were short, the fog of depression lifted and as I slowly gained more knowledge I began to realise that we were not helpless onlookers to some video game. We had the controls, and we could control the present and the future. We could control our actions, but most importantly our thoughts and feelings. This is what was missing, I fought for Ashton from the day he was born, everyday I was doing things to try and better our situation. But I wasn’t happy about the hand we had been dealt.

When Felix was born we were dealt a similar hand, but a change in thinking can really change your life. Felix also did nothing but scream for the first 8 weeks of his life, I got 4 blocks of 45 minute sleep a night – by the time I had pumped breastmilk for him, cleaned the equipment, breastfed and bottle fed him, then got him back to sleep. I’d then get up and look after 2 kids for the day. Tired and weary I would say things like ‘it won’t always be like this’ and ‘at least he doesn’t vomit all the time’, ‘he’s so cute when he sleeps’, ‘ these days will pass quickly’, and ‘how lucky are we to have two boys’. I never wanted to put him back and I certainly could not fathom dropping him off on someone’s doorstep! This kid has taught me resilience like no other. I could have given up the feeding routine, we could have put him on a bunch of medication, we could have loathed the countless hours we spent walking his screaming body up and down the dark hallway. While I wouldn’t volunteer to go back to that time (or for round 3!), i’m glad that it happened to us. It has made me appreciate every minute that a baby is asleep and without pain, every second that our children spend happy and content and every day that they are alive and well, because sadly, some people are not so lucky.

Having kids with food allergies has taught me empathy and compassion. During the 10 months I breastfed Felix, 9 of those months I lived off 10 foods (sometimes less and that was counting salt and pepper!) It taught me empathy for these kids of ours who can’t have a piece of birthday cake, who sit and watch their classmates eat christmas chocolates, or watch everyone eat cheese and crackers at the family lunch. That was me, for nearly a year I got to be that kid. And at times it sucked. There is no feeling quite like it. Knowing this, I make sure the boys don’t miss out on anything. They always have homemade safe versions of most things, and I usually one up them by making it healthier. It has given me the opportunity to explain to them, that though they can’t have what everyone else has got, they don’t want it, because for the most part it’s full of processed ingredients that are going to make them feel like crap. It has given me the understanding and self control to model the behavior by avoiding the foods alongside them. I also took on the mindset of, instead of us missing out, everyone else was really missing out on the opportunity to put real, nourishing food into their bodies. Today I appreciate food more than ever, I don’t want the cake and that’s my choice. What I’ve learned from having such a limited diet has changed all our eating habits for the better and made me realise what it feels like to be truly healthy, happy and energized, and I am so grateful for that!

This experience has taught me that there are some truly wonderful, kind and just generally kickass-amazing human beings out there. Some of these people were complete strangers and they have given me advice and knowledge that has changed the course of our life. Some helped us see specialists for Felix and one lady gave me personal advice on how to pursue a total elimination diet, which was the start to us ending Felix’s pain and suffering. From that, we have never looked back. I am so glad I have met some of these people and experienced how kind and caring our human race can really be. I endeavor to pay this forward whenever I can, to be that kind human being that reached out to help another fellow mum in need.

When I am up late preparing safe snacks for the boys to take to a birthday party, I am grateful. I am grateful they are not filling their bodies with junk. I am grateful they are learning about what they can and can’t eat and how to manage their allergies responsibly. I am grateful that I love to cook and can use this opportunity to do so. I am grateful that we are aware of how different foods can affect our bodies and can make healthy choices based on this. I am grateful we are not filling our bodies with chemicals, fake foods, colours or preservatives.

When I open the fridge to get ‘starving Felix’ a snack and there is nothing right there, he can eat, I am grateful. I am grateful that the kid who was once fed through a tube down his nose is asking for food. I am grateful that I can find any fruit or vegetable and prepare this for him to eat, 5 months ago he could only eat 4 foods. I’m so grateful for that. I am grateful that though I often have to spend time preparing him something, rather than grab it off a shelf, I am teaching him patience, as he watches me find something and helps me cook it. Don’t be fooled there is often squealing involved and it ends in pots and pans pulled out all over the kitchen floor! But that’s ok because he has also taught me that perfect isn’t having organised cupboards or clean floors. Perfect is that moment right now, because life is happening and we are all OK.

I have learned that we all have problems and challenges. Sitting next to my child, limp and lethargic in the emergency room after he has vomited until he is passed out because of something he ate, is not much fun. But neither is sitting in the doctor’s waiting room, waiting to have your child’s 5th ear infection that month, diagnosed. Neither is dealing with major scream-cry-and-throw-shit temper tantrums all day. Nor is getting up every.single.hour overnight to an unsettled baby. I am no more super than the rest of you. You can have your unsettled baby and your ear infections, and i’ll have my children with food allergies, because that’s what I do best.

So last year I found something, I discovered this resourceful, passionate, driven, strong, truly blessed woman. She wasn’t quite what I had been looking for, she was better. I have food allergies to thank for that. The experience has helped shape me into the person I am today and this, I am so grateful for.

 

Kayla