7 Days

                                                                7 Days
By Sara Boult.
The Angel of Death came to my door today.
“It is time to go,” he said beneath his faceless cloak.
“No, I’m not ready, I need more time” Shying away from his unwelcoming hand.
“My child, I have given you 30 years. Why would you need more time than you’ve already had?”
I couldn’t think of any reason, how could I persuade him.
“I’ll give you anything” I pleaded, pulling at his shadowy, blackened cloak.
“I do not work like that my child. I am simply here to comfort and guide you to the other side.”
Collapsing to my knees, I cried. And with a last grasp at desperation, I prayed. I prayed to my Archangel for protection. Please be my saviour. I need you now, more than ever.
My closed eyes filled with white light and I felt encapsulated in warmth.
“I am here,” the angel said cupping my face and pulling it toward theirs.
“Thank you angel, I need your help. Death has come to take me away,” I protested.
“I will give you one week,” Death replied.
“Thank you.” Angel of life replied, taking Death’s hand.

*          *           *           *           *           *            *           *

A week later Angel and Death returned.
“It is time,” Death said.
“Are you ready?” Asked Life.
“Yes.” I said with certainty. Though I am sad to be leaving Earth, I am happy I got to live one week like this – I could’ve even had just one day.”
“Tell me what you’ve done with your last week child,” replied Death.
“It must’ve been extraordinary for you to be ready now. A week would not usually be enough for many.” said Life curiously.
“Nothing. I didn’t do anything different.”
Death and Life both gasped. “You wasted another week!?”
“Oh, quite the opposite. You see, after your visit last week Death, I started appreciating and living.” Death and Life, looked at me smugly. “You have found the meaning of life.”
“I did not recognize the full worth of my life. Life’s not about bucket lists, picket fences, and to-dos. It’s about cherishing and relishing in the moment. Once I started actually noticing, I realised how blessed my life already was.”
Death and Life both put out their hands, “You are ready.”
I took their hands, feeling peace and comfort knowing that it’s never too late to start living.

Night (1)


Mum Goals



Hey there Mum goals, why so stressed? Racing, pacing, head’s a mess.

Living life out on the edge – if only you could, just care less.

House is tidy and chores are done.

Then after that, some pre-planned fun!

Hands are clean, clothes never a mess.

“Can’t I just play outside, without having to be redressed?”


Tank’s on E light, your mind’s busy and up all night.

You won’t let the world see you, if your not alright.

Picture perfect smiles, posted on Instagram.

You wouldn’t post your struggles, they couldn’t understand.

Never raise your hand for help, that’s not what ‘good Mums do.’

Not allowing yourself to be the best authentic, version of you.


Who are you? Where did she go?

I’m a stay at home Mum. “Oh, that’s all that you do?”

The pressures on, time to get a job.

Even though that’s not what you want to do.

This is what society expects of you.

Just another arm added to your Vitruvian Woman.


Running around but still not skinny.

Maybe this why you refuse to go swimming.

Ashamed of your body and the new weight that you carry.

Why can’t you just wear a bikini and be happy?


Hey there Mum goals, sit down, relax.

Take a minute for you, declutter your mind.

Love the life that you live and the body you’re in.

I know it’s hard to do.


You have a little human, that is looking up to you.

So don’t strive for Mum goals, who is she anyway?

Nobody’s that perfect, but to someone you are.

In every single way.

Night (1)


Life Lessons


I can’t believe it’s nearly been 1 whole year since I’ve spilled my guts on here! Truth be told, I’ve been living it rather than documenting it.

So much has happened in the past year; Family cancer, milestones, gaining the best friends and then losing some, first Christmases, career changes and cannot forget the big first birthday! One thing that hasn’t changed is: I’m still a mumma, learning to adapt with a child with Alpha-1 and coming to terms with the fact that I too, also have it.

Life sure is different from the newborn, capsule carrying, antenatal coffee catchups – that once were last year. I miss it. Some days I beat myself up for having more down-days than ups – rather than ‘not sweating the small stuff’. Naturally being a people-pleaser and perfectionist, my focus had switched from my career of beauty therapy to full-time mum. I channeled a lot of that old energy into perfecting my home life and mum life. I unintentionally forgot to just enjoy the journey and was too obsessed with the destination.

Last year has been the best year of my life, there’s no denying that. The growth I’ve experienced as a person is undeniable. There’s nothing like a little mini human to put life into perspective. I think my biggest hurdle was my career change away from beauty; I was always having an internal battle to force myself to love what I was doing. It felt like I was in a relationship that had run its course. I couldn’t even bring myself to say it out loud. I felt like a failure, that I’d wasted all those years of studying beauty therapy. But once I finally admitted to myself that I was no longer ‘in love’ with my career, life just fell into place.

It’s the small things. Now I can drink my coffee hot, wear beautiful clothes at work, and at home, I can sport my mum bun and unexercised-in lululemons. Life’s all about balance, right?

But last year was also my worst year.  Life gave me the big middle finger, when I was already down. Having a sick baby, while coming to grips with a fairly unknown genetic disorder. Adjusting back into a somewhat normal life, after our whirlwind beginning. I had started my new job, we had a 6 month old on the mend – life was good again. Then I got the dreaded phone call from my mum that every daughter dreads – “I’ve got cancer”.

And in the blink of a eye, it was like I had hit the rewind button.

Everything all happened so quickly, from diagnosis to surgery and now recovery. Beating cancer like the warrior my mum is!  I feel so blessed that we have made it into 2018 as a family, stronger.

We are apart of many Alpha-1 groups all over the world. Which really makes me realise just how bad it could of been for us. Seeing young babies having to undergo liver transplants because they are in end stage liver failure, or elderly people with emphysema who’re not diagnosed until they are in need of a lung transplant. It’s frustrating to know that this disease has to get to a life or death situation before diagnosis is made. I fear for the future – for Bobby, Tom and myself. But without the bad days, we can never appreciate the good ones and there are so many good days coming our way!

So many firsts have happened – there’s something so special about seeing your baby’s firsts. It often reminds me how lucky and precious this life of ours is. Previously, our Christmases had often been us spending it at our extended families’ houses, slotting into their day and traditions. But last year, Bobby’s first Christmas was just magical. We had our first tree up, started our own traditions and Christmas felt like how it did when I was growing up. It was nothing but perfect.

Then Bobby’s first birthday was not far behind and just like that we had survived one year of being parents. While that first year was a lot tougher than what some parents endure, that’s not to say other parents haven’t had their own set of difficulties and challenges. We made it. We got through it as a team, and with the help of our friends and family. I think once the dust had settled, we realised just how strong and resilient we are when we need to be for our Bobby.  To see the love in one room on Bobby’s special day, celebrating his first year of life was out of this world! Fittingly, his theme for his party was outer space. I have to admit I got a little to much enjoyment from creating his little dream party. It was fun to let my inner child creativity run wild.

Then there were the first days of daycare and surprisingly not a lot of tears from either of us. We were both ready. I often get mum guilt that I’m enjoying going to work so much, but I need to remember that he’s learning things that I can’t teach him. Some drop offs are not easy and I some days I do have to ‘drop and dash’ because he’s clinging to me crying, not in the mood for daycare. But the pickups are always the same. Once he spots me his little face lights up, all smiles as he’s weaving in between the other kids towards his mum.

I recently also had my first night away from Bobby, a weekend away in Martinborough with my mumma friends. It was just what I needed – I think we all needed it. I love these ladies, they are my people. Each one as special as the next in their own unique way. We are safe with each other, we don’t ‘mum shame’ and we can all have a laugh at our bad mum moments. I’m truly lucky to have these super woman and their babies in our lives.

What I’ve learnt is my success isn’t measured in my status of my career. All I’ve ever truly desired is to be happy and I finally feel like I’m living my purpose.

I will try not to leave it so long until my next blog, as I love writing. Looking forward to popping the champers, and tuning in to the royal wedding tonight.

Love and light,

Night (1)


Tis’ the season

Nothing makes me feel more uninspired than being riddled with the flu. Apart from your baby experiencing his first “common cold.”  Having to deal with your own sick ass and then care for your mucus-vomiting, grumpy, snot monster.  Ah motherhood.

So while myself and Bobby dwelled in our cesspit of germs and tissue towers, I thought it was fitting I write about life being an Alpha mumma.

Nothing is worse than seeing your baby sick. Especially when something as normal as a common cold is causing accumulative damage to his lungs. Alpha-1 Antitrypsin has been a curse, as unfortunately it is the disease that keeps on ‘giving’. Everyday has a new challenge or hurdle I’m faced with, and it’s always in the forefront of my mind. On the flip-side, I try to think of it as a blessing; that without Bobby, we wouldn’t be on the path of leading healthier lives.

AAT (Alpha-1 Antitrypsin) deficiency is an uncommonly-diagnosed condition. It usually isn’t even diagnosed until it presents an actual issue, such as when affected people start suffering from emphysema, chronic obstructive pulmonary disease (COPD) and liver disease, the latter of which often leaves transplant as the only option. This is why we take the measures we do to protect Bobby, because as scary as it is to say, the type of AAT gene he carries he has a 80-100% chance of developing emphysema at some point.

Confused? Yeah, me too.

Unfortunately with AAT deficiency, it’s hard to find a doctor, GP, specialist that actually knows about it. And as many times as I have explained it myself to others, I often stumble over my own words. It feels like some fictional sci-fi, horror film. I’m going to give it a crack in my own words to explain in a ‘non-medical, brain-hurting way’.

AAT deficiency is a genetically passed down condition. Alpha-1 occurs when there is a lack of the Alpha-1 Antitrypsin protein, which is produced in the liver. The main function of AAT is to protect the lungs from inflammation caused by infections and inhaled irritants; smoke of any kind, dust, chemicals, aerosols and pollutants. The low levels of AAT in the blood occur because it is abnormal and cannot be released properly by the liver. A build up of the AAT in the liver occurs that can cause liver damage.

Below I’ve sourced a diagram to help explain how Alpha-1 is passed down from parent to child. Myself and Tom are still waiting on our genetic testing results, but one thing that we do know for certain is that we have it to some degree. So I’m just going to explain a “hypothetical” example. A healthy person would have a MM gene, myself or Tom could be a MZ, MS or even as severe as Bobby who is a ZZ. There are many variants of the gene combinations. Say I was a ZZ and Tom was a MZ, Bobby has inherited one Z gene from myself and of Z gene from Tom.


Screen Shot 2017-06-29 at 9.49.31 pm

Now there has been conflicting advice from different doctors that say if I was a MZ, it means I was just a carrier of the gene and may not experience any of the symptoms. But since being in touch with other Alphas around the world, it seems there is still a good chance we will develop related health issues later down the track.
I honestly try not to think to hard about my own health at this point, it’s like I’m almost waiting for that “diagnosis” to fully accept it – even though I already know the outcome.
Despite flipping our worlds upside down, I’ve really started to take my own health seriously – because I need to be here for Bobby. And we need to be making it easier for Bobby so he’s not having to adapt to a new way of life when he’s older, in the hope that we give him the tools to make the right choices for his own health when he needs to.
Sometimes I feel like withdrawing into our bubble, our safe haven at home, so I can protect him. People often say how strong I am – for everything we have been through.
But sometimes I’m not, sometimes I am dead scared of the world.
But Tom said something, while I was shitting bricks that Bobby had his first cold. “He’s a kid, kids get sick. You can’t avoid it, it’s going to happen.” Huh, how blatantly in your face true is that? But it’s just what I needed to hear.
I still struggle with wrapping my mind around Alpha-1. I don’t need people to fully understand it, or even try to.
Motherhood, parenthood, adulthood. It’s all hard at some point, but it’s never not worth it.
Night (1)

Mum’s Club

Mum’s Club

By Sara Boult

Unintentional regrowth: “Looks like balayage”.
Mum bun is perfected,
there really is no secret.

Daggy clothes, with spew on those.
And don’t forget,
those swamp monster toes.

2 minute showers, with one leg out the door.
While I bounce my bundle of joy –
who’s crying on the floor.

White noise, shushing sounds.
Sleeping sacks and
$20 Merino Baby Socks.

4 month sleep regression! What the F is that?
I didn’t know how hard it could be,
to take a fucking nap?

Cold coffees & 2pm breakfast
Micro fashion; Bobby looks great.
Meanwhile Mummy’s looking like
Britney Spears’ ‘07 state.

Pram envy is not a myth,
‘Phil & Teds dash’
is on every first-time mum’s wish-list.

Expressing milk for 2 weeks straight,
Could Mum & Dad squeeze in a date?
Doubt it!
Did you forget? “I don’t like the bottle!”

Saturday nights at A&E;
This is what a social weekend
looks like for me.

Friends like family,
thanks for bringing that delicious coffee.
And for simply loving Bobby.

Late night feeds, just me and him.
Throwing me the cheekiest grin.
You falling asleep on my chest,
Really is the best.

Tummy time and rolling over,
I really am one smitten mother.
My best friend and now a son,
I’m so lucky to have two number ones.


Ironic. I bought this cardigan today and now it’s milk sodden.

Black Dog.

Sale lasts until May 31, 2020.Don't miss your chance!

Last Monday I was greeted with post drinking blues. Does anyone else suffer from a bit of FML after a night out? It starts with the hangover, obviously. Then the hangover spills over into another day. It’s the washing that’s been sitting in the machine for two days. It’s the load of dishes. It’s the coffee that didn’t plunge properly. It’s the poonami right before you walk out the door.

I’ve never been ashamed of having anxiety or depression. I’m always quite open about my feelings and emotions. So while I was pregnant, I was hyper aware that I needed to be on the ball with not letting my black abyss, that is my depression consume me. But it did- and last week it was very different.

I was diagnosed when Bobby was just a week old, with a type of post natal depression. I was proud of myself for being so self aware; I have a great hands on partner, loving friends and family, a very open relationship with my GP. But something about last week was different, I can’t exactly put my finger on it. I have to admit I get a bit of brain fog after hanging out with my black dog for too long. Each day took its toll on me and each day I was wearing my depression more and more.

My love and care didn’t alter for Bobby at all, and I feel so lucky that I have such a kind natured, calm baby. When I would look at him, I felt waves of guilt that I was feeling this way. We had our genetics counselling appointment last week and I think talking more in depth about the condition, shook me a bit. I was really feeling the pressure to protect Bobby. Am I protecting him enough? Having flashes of images, of when I should of walked faster past that person smoking on the street, was it too cold when I went out yesterday? Did I vacuum enough? This sent me into my OCD cleaning state, I wasn’t leaving the house – I was cleaning the house. I was my own worst enemy. I admit I wasn’t even trying to help myself out of the darkness. I let it swallow me.

Being a Mum can really be a lonely place if you let it, I was on the verge of a breakdown. I knew my black dog was now my shadow and I had to see my doctor. She signed me up for some subsidised exercise classes – you can apply through your GP for a range of different classes you can do with bubs, like swimming or gym sessions. I had no idea your GP could refer you; this has given me something to look forward to.

Today I woke up and enjoyed my morning coffee. Today I washed my hair and brushed out that dread. Today I rung up Plunket to join a PIN group. Today I rung my mum and reached out to her. Today I went into the city and had lunch with Tom. Today was a beautiful day.

Last week taught me a lot about myself – it’s ok to not be ok. But now I will ALWAYS reach out. It’s not about the coffee but about the friend you’re having the coffee with. I will throw on another layer and go for a walk if it’s cold.

I will not let this condition define us.

I’m so glad we are now in a world where the stigma around mental illness is more talked about. I will always want Bobby to feel that he can come to us if he’s feeling sad. I thought the short cartoon Black Dog is a really good explanation of how depression works. The movie Inside Out is the perfect movie for young ones to be able to recognise what different emotions are – not to mention it’s a feel good movie!

I’m looking forward to this week and I can’t wait to update my blog with more happiness 🙂

Night (1)




Wake & Caffeinate

This weekend we got to stay out at our friends family’s beach house, out in Raumati Beach. It was perfect just what out little family needed- a home away from home.


Today I’ve had a severe case of brain fog. Self inflicted of course, I indulged in few to many cheeky reds before bed yesterday. Luckily in my younger days one of my favourite things to do was being hungover and eating, if that counts for a skill? I think Bobby telepathically understood how ill I was. Which made my day as less sufferable as possible and with the hands-on help of Tom with the nappy changes!

Did I mention I’m hungover off 4 glasses of red? Yikes.

This week I feel like I’ve been chasing the baby sales. This mum thing is like on a whole other playing field of bargain hunting! I mean where has anyone been at a sale where you’re standing at a table of second hand clothes, with one mum fossicking in between your arms like she’s a pro ventriloquist, then another diving through your legs to the freshly filled bucket of newborn shoes? This was my first experience at a baby sale frenzy- it almost resembled something you would see in the states on a black Friday sale.

These days I’m more on the ball, I feel. Even though I’m only 4 months into this mum thing, I’ve got street smarts. This week myself and Tom decided to get Bobby a new capsule, as the one we had was hired it wasn’t that great, to say the least. Not to mention it was the most hideous shade of lime green out. So to any first time mums out there I’d definitely recommend not scrimping on a capsule.

Here are a few of my tips for getting the most bang for your buck:

  • Shop around.
  • Look online and have a good idea of what you’re after; it can be quite easy to be swayed to something else and end up unhappy with your purchase (especially being a FTM you think you NEED everything when in reality you don’t).
  • Ask other mums, we are the most easy and approachable people around- it gives us a chance to “adult” and swoon over each others babies and you might just bag yourself a new friend for coffee dates?!
  • When you finally walk through the golden gates of a baby store don’t be afraid to ask when the next sale is going to be- you never know it could be tomorrow? In my case it was!
  • Haggle- Even though it can be awkward ASF, they might just throw you a bone.
  • If the sale is coming soon ask for the said item to be put aside.
  • Sign up for those annoying mailers and “bub club” points systems.

We opted for the Phil and Ted’s  Alpha capsule; original price $249. I ended up scoring it for $179 with the sale, plus we had a $20 bonus on our baby city card! FYI next baby city sale is Queens Birthday weekend mummas!

I also wanted to touch base on my ever growing she-hulk capsule carrying right arm. This arm is toned, with a popping bicep. While the other arm- is a limp, soggy crusket. I’m hoping I have enough time up my sleeve of Bobby in the capsule to get my left arm up to speed!

This week I also got to spend my Mother’s Day voucher from David Jones. I found some apparently on trend boots, but I was thinking; these look waterproof, I’m sold.

As some of you know, I’m a Beauty Therapist by trade and skin is my passion. But unfortunately being out of the industry for over four months, I’ve now scraped the sides and cut the tubes of every moisturiser I own. So I had to go on the search for something more in my mummy budget, but still actually being beneficial for my skin. Well anything’s going to be better than using my SPF as a moisturiser – oops!

I did a bit of online research and found that Frank’s are now doing a skincare line, with its main ingredient being coffee beans. While coffee is usually the devils drink, wreaking havoc on my insides, it is actually really beneficial for topical use; it helps to get that circulation going which in turn is bringing oxygen and nutrients to the skin surface. This results in firm, supple and tight skin. Also, now I don’t have the time to be able to wear makeup as much as I would like to, my skin’s gotten a lot more sensitive being exposed to the harsh Wellington weather. Frank’s everyday moisturiser aids in the calming and de-sensitising of a fragile skin. It also contains Vit E which is naturally found in your skin, aiding in the healing process. Along with other yummy ingredients which help to smooth and re-hydrate your skin. I need all the hydration I can get with my caffeine consumption. It’s all locally sourced natural products in Oz, and get this: ” is only tested on babes.” It was super affordable being $24 a 80ml tube- it also gave me the perfect excuse to go into the new Mecca Maxima store in Wellington.


To end my ever so perfect day I grabbed a Starbucks and like the walking cliche’ I am I went and grabbed myself some much deserved sushi, whilst wearing my active wear that hasn’t had a drop of sweat in them ;).

I still have so many more things I want to write about; Like the time myself and Bobby went to a physic and how that’s kick started my love and need for indoor plants. But I’ll save that for next time!

Until next time,

Night (1)

Mother’s DayzzZZzz…

I’m going to try and put up a new blog weekly, it gives me a chance to reflect on the past weeks highs and lows.

This week I’ve been pretty pumped for my first Mother’s Day, to say the least. I’ve had my mum hustle on; I’ve entered every online competition on Facebook. I mean who doesn’t love free stuff? I have to admit, I get a bit of a high with every entry at just the thought of winning – and what do ya know it paid off! I received a family photo shoot with free prints! Now to be honest I wasn’t to sure what to expect. I was feeling optimistic but there was a touch of raining on my own parade.

The shoot was on Mother’s Day. I liked this, it made my first Mother’s Day that bit extra special. I didn’t sleep-in like the norm; instead I got up nice and early and started off my day while my two boys were tucked in bed sound asleep.  I was excited to be honest – I was putting my face on, washing and straightening my hair; this used to be my usual routine. I had my Sara sparkle.

The team from Duo photography turned up – this was another bonus as we didn’t have to go anywhere. They had all the bells and whistles and within minutes our little Broadmeadows lounge looked like a studio! We had so much fun and Bobby’s now looking into modelling for his career 😉


This week has been full of highs, mostly coffee dates with other mummies. We have this almost unspoken challenge of who’s going to find the “next best” lunching and brunching spot.

I also got to have a mid week girls night out which I was in dire need of, which consisted of wine, food, Amy Schumer oh and free wine. Even though I had to pump for 2 weeks every day to be able to go out for one evening it was well worth it!

I’ve also started making gradual changes to my diet; I’ve been in a pretty reluctant denial about my body’s unwillingness to be able to process dairy. Tom would tell me everyday while I was in my full blown diary hangover that I was intolerant, but CHEESE. I finally bit the bullet and purchased my very first Soy milk and um yum! Total convert, goat cheese on the other hand for my nightly cheese platter is not quite the same so I’m still on the hunt for that dairy-free camembert. I also found an avocado “butter” which is 100% dairy-free, I’ve definitely noticed a difference and I’ve accepted what it is.

I’ve been looking into alternatives for my caffeine hit; for anyone who knows me, you’ll agree a coffee would be my action figure accessory! I was reading up on dandelions being a excellent detoxifier for the liver and I found some dandelion root tea at my local organics store. They taste like what they are – weeds… but I’ll persevere.

Now, this week I learnt a very important lesson: nipple cream is not lip balm.

That stuff was like crack for my lips they literally got addicted to the stuff and as soon as I stopped using it my lips turned into retired lifeguard’s lips. Apparently your lips get lazy and they can forget to rehydrate themselves if somethings doing it for them. Great. On the plus side though, for my makeup-free days I literally just had to gloss and go because they were so red it gave the impression I had lipstick on. Lesson well and truly learnt.

This week has really been a good week, I’ve been gathering information and talking to other Alpha mummas which has helped me to understand and come to terms with Alpha-1, we also have our genetics appointment soon which I’m not 100% on what to expect but I’m glad things are progressing in the right direction.

I’m looking forward to cuddling up on the couch with my two main squeezes and indulging in The Batchelor to finish off my first Mother’s Day.

Love and light,

Night (1)

This is us.

I wanted to create a blog to document the journey I’m about to embark on, to be able to look back and see the struggle and the strength I’ve gained and endured.

It all started with a stock standard trip to Thailand with my partner Tom, little to our knowledge carrying an extra passenger on our return home!

I hated pregnancy I don’t mean just a loathe I mean a hate-HATE (just ask Tom for confirmation) I didn’t have the smoothest of rides, one of the many with the peak of Zeka virus in Thailand and other Northern Hemisphere countries at the time, followed by a very drawn out screening test which eventually lead to having a amniocentesis, everything of course came back perfect- and then all of a sudden I’m in the third trimester and I’m actually having a baby soon WTF.

Birth plan whats that? I wanted freedom, water, minimal intervention/pain relief and as less clinical medical feely as it could get- what did I get? Induction, strapped to a bed, legs in stirrups with my F$&#ING epidural wearing off right in active labour because I was being to slap happy with the trigger.

Fast forward and we have a beautiful baby boy named Bobby and myself and Tom are in absolute chaotic love with our little man, up until 3 weeks.

It all started with a poo. Yes a poo you will hear that word a lot, I was just lucky enough I had not one but TWO midwives on my team which picked up on the oddness of Bobby’s mid morning bowel motions.

His poo was grey, yip grey. Any mum knows babies poo comes in all weird shapes and colours right? I mean what mum didn’t get a anxiety attack when they first laid eyes on that black meconium nugget when they are merely a day old?! So heres me thinking this grey poo was just one of those phases. My ever so calm and collected midwife sent off a poo picture which in turn started the next series of events.

We spent a week here in Wellington hospital, daily tests, blood test after blood test and a lot of hospital jargon was been thrown around- first semi diagnosis was biliary atresia; he was jaundice, his poo was pale which meant the bile in his liver wasn’t filtering.

So up to Starship we go, I was in full blown denial this kind of stuff isn’t real this is what happens to other people. Our poor Bobby under went a few tests and a liver biopsy which they needed to preform under a general to take samples from his liver, the doctors were really preparing us for the worst if it talks like a duck and walks like a duck chances are it’s probably a duck. It was unquestionably the worst time of my life I cannot even begin to describe the pain I felt for Bobby, for our family I can feel my throat tighten and my eyes welling as I’m typing this now.

Then there was the wait. The wait for the biopsy, I’ve never felt so out of place and emotionless waiting days for that result, the buildup was unbearable but we finally got the answer we needed- Bobby doesn’t have biliary atresia! We really dodged a bullet with that one we were literally staring down the barrel of a liver transplant, I really needed the doctors to be wrong on that one.

But it left us in that awful place of limbo all over again- what is wrong with Bobby?

They were confident that it would be one of those things that “hopefully he will just grow out of it “type scenarios, Bobby has and is very well looked after by the Starship team and our paediatrician, they decided we would follow up with regular blood tests and would re group in a months time as he wasn’t causing any immediate damage to his liver.

That month was full of highs and very low, lows.

I felt normal, like we were a family again and then the guilt swallowed me whole because Bobby was still sick.

Finally the day arrived where we were to meet again with a specialist from Starship, and still I was in full blown denial. He went over Bobby’s results and had picked up on low levels of Alpha 1 Antitripsin, Toms always the forward thinker asking the need to know questions then theres me silently sitting in my shadow of denial, he wanted to be 100% that this was the cause so sent Bobby for a routine blood that specifically tests for Alpha 1- but you know that look, yeah the look of truth and sadness and I knew deep in the depths of my being that this was it.

Diagnosis day- I remember hearing the words, and yet denial still wanted to stick around my ears were ringing, my throat was so tight I could hardly catch a breathe, looking down at my son through tear filled eyes and it was for a spilt second I nearly lost all self control and it was then when I realised I was no longer in denial.

Alpha 1- let me try and explain it in a nutshell, It is genetic- yip so to some degree myself and Tom carry the gene, with this condition it literally takes two to tango. Our body naturally produces Alpha 1 this helps us fight and protect or lungs and liver from inflammation but in Bobby’s case he has inherited one abnormal gene each from myself and Tom, Bobby is a type ZZ which means he has little to no tolerance of being able to protecting himself it sounds far-fetched doesn’t it? almost unbelievable.

What it means is; Bobby physically cannot protect himself from any sort of smoke or passive smoke, pollution, dust, chemicals, sprays, common colds and of course 0 alcohol, now I’m having flash backs to my heavy partying ways when I was younger but in true Sara style I’m going to sweep that one under the rug until next time.

Sure this all sounds easily avoidable? I remember coming home from that appointment, Fireplace- now we need new heating, damp Wellington house- now we need a dehumidifier, all the cleaning products how am I going to clean- with water?! my usual mum bun with half a can of hairspray or that 3/4 full YLS black opium perfume? forget about using them again literally 😦 

The list goes on he is my bubble boy, I still struggle with where to draw the line of excessiveness I want him to be happy AND healthy- So this is me Sara, first time mum learning the ropes of a infant, sleep dep, the milestones while learning to live with a rare genetic condition.

Until next time,

Night (1)