Monday, 1 October 2012

Busy weekend...

Earlier this year we purchased our first home... It was a scary, almost spare of the moment decision... We were being faced with our third move in three years and with a toddler, it was just too horrible to contemplate soooo we took the plunge and got into the real estate market!...

It turned out to be the best thing we ever did... Its a gorgeous, family orientated area, lots of beautiful parks and quirky playgrounds, close to my oldest friend and her babies and well it is just the best little home...

This long weekend we got stuck into the gardens and the outside make over!... My talented painter husband spent 9 long hours washing our roof, ready for a paint job later in the week while me and my step dad spent the day in the front yard building up garden beds, moving barrow loads of dirt, planting flowers, veggies and herbs and spreading mulch!...  Its starting to look really beautiful and homey and I cant wait to spend the rest of the week getting stuck into the back yard...

As well as being busy around the house, I am on holidays from school for 2 glorious weeks and have been soaking up some mummy, Ayda time... Last week was spent catching up with friends, baking, play dough, painting, craft, dress ups, tea parties and babychino dates... Ayda is now 2 1/2 and I can not believe what a fun little friend she has become!... She chatters away, telling me stories about this and that... Asks lots of questions and likes to help me do pretty much anything she can... A sweet little miss with bag loads of cheekiness and personality!...




With one week already gone I am going to savour the last one... Lots more lovin' to do yet!

Tuesday, 28 August 2012

Well, hello again!

It's been a long time since I posted.... I guess when I originally started this blog I was in a bad place emotionally with our decision not to have any more children... I wanted an outlet to process those emotions and vent about what it looked liked through our eyes... But after only a few posts, I realised I didn't want to be that person... I was sick of thinking about not having another baby everyday, getting teary whenever I heard of a pregnancy, or tried to celebrate with friends over their newborns...

So I took a step back... I reassessed my life and the choice we had made... I decided that I love my life... I love my one, precious little human and I'm excited about the life that we are going to be able to give her...

It doesn't mean it doesn't still hurt... Everyday... I still see a big pregnant belly and wish it was me growing that tiny person... I still hold my friends newborns and get tears in my eyes thinking about how I wont get to hold my own newborn again, but I'm just done feeling consumed by it...

Instead, I want this blog to be a celebration of the only child... The 3 person family... I have to, because my life isn't going to be any different, no matter how hard I try to rationalise having another baby in my head!  I will make the most of my Onederful life, and experience great things... Just me and my husband and my daughter... And we will be just fine...



Friday, 15 June 2012

It takes a village

This weekend we celebrated my Dad's 60th at the beach... The weather was terrible!  Blowing a gale and raining, but the weekend could not have been more perfect...


My relationship with my Dad has been over the years up and down... After my parents divorced when I was 9, we had many years of fun but also disconnectedness... He remarried when I was about 16 and my relationship with my step mother was interesting to say the least...  However since I have had my own daughter things have changed... I dont know if it is me that now understands the difficulty in maintaining the perfect relationship with your child, or that they now appreciate me as the mother of their grandchild... Either way the past 2 years have been a wonderful time of reconnecting and seeing just how nice it is to have a Dad to rely on...



 So this weekend was all about spending some one on one time with my Dad and step mum... Something we have not done over night since Ayda was born... I was a bit worried at first as they are the type to over ride what I say when dealing with Ayda and I wondered how I would go, gritting my teeth for 3 nights! But I could not have been more wrong...



Watching my Dad and step mum get so much joy out of Ayda was heart melting... Yes they did over ride a lot of my decisions, like when I said "no more chippys now Ayda, that's enough" they were quick to give her "just one more"... Or when she was whinging for no apparent reason and I had asked her to please stop or she would need to go to her room until she could be a fun girl, they were just there ready to bundle her in their arms and 'shhh' her into submission... And whilst I thought all these things would drive me crazy, they made me step back and realise that it really does take a village to raise a child...


During that weekend my Step Mum taught Ayda 3 new songs that I had never heard of, but that she loves and has been singing ever since... They let her have her own $2 and let her pick anything she liked from the discount shop and thought it was adorable that she picked a horrid, rubber snake!  They let her stay up late snuggling on the couch and tickled her back until she fell asleep... But best of all they held her, and showered her in love and kisses and their undivided attention.... She was the centre of their universe for those 4 days and she soaked up every second!


I realise now that sometimes what others give your child is not always what you would expect, or even want... But all those that can love your child the way you do is special and I will never deny anyone that chance to love on my daughter.... Because that would be denying Ayda some of the best kinds of love... I learnt this weekend to let down my defences and just go with it... I didnt rouse on them for spoiling her because she is the only grandchild they will ever have (in Australia, my brother has a daughter in the UK which we do not get to see very often) .... Besides, I know that the more people that have a hand in raising Ayda, the richer her life will be.... Lucky, lucky girl...









Wednesday, 30 May 2012

Hyperphosphatemia

Today Ayda had her 4 monthly appointment with her specialist... We started with the good news!  The fraying in her bones has healed, meaning all the dark spots that showed up in her xrays last time are gone!  We couldn't be happier :)  We were also told her alkaline phosphatase levels (ALP) were lower, which Dr L was pleased about...
But...
There is always a but...

There was calcium in her urine... Its the first time this test has come back positive and it means that her kidneys are not keeping up with the increasing amounts of calcium being pumped into her body because there is not enough phosphate to absorb it... To try and counteract this he has up'ed her phosphate dose and wants monthly urine tests to keep a close eye on her...

He was also concerned about how badly her legs are starting to bow... It seems that the more she puts pressure on them the more they are going to bow if we cannot get her doseages right... He is giving it 6 more months of medication experimentation before we look to other options, possibly surgery...

It appears that the bowed legs are restricting Ayda's height development but not her weight so there is now an imbalance between her height/weight ratio... He suggested being extremely careful with her diet as he wants her weight rate to slow down... This was one of the hardest pills to swallow as we do watch what we eat and have always presented her with a healthy balanced diet and to think that we have to be even more careful makes me anxious that as she gets older we will make her paranoid about her weight which is so dangerous with girls in particular... My friend is giving us the number of her daughters pediatric dietician so that gives me confidence that we can tackle this in the right way without causing Ayda to feel restricted or become obsessed with her diet...

Ayda feel asleep in the car on the way home and after a couple of phone calls to family filling them in on the appointment, I had a rare moment of silence and alone time to reflect on the afternoon... It made me cry (although I always cry after an appointment due to the overwhelming reality it gives me that this is infact our life)... I felt for the first time since Ayda's diagnosis, deflated... I realised that no matter what I do, no matter how hard I try, it will never be good enough.... I will never be able to 'fix' this, or make it go away and it was a depressing thought...

I look at my beautiful, smart, funny daughter and I forget that she is different... I forget that she is not quite the same as other 2 year olds... But when I am in that waiting room, I am reminded that for the rest of her life, she will be fighting a battle that she will never win...


But... and there is always a but!  We are blessed... because she is beautiful and smart and funny and cheeky and so much more... And she may always be a little bit different but she will be amazing while she is and that fills my heart with hope and so much love I could burst... So while I will let myself be sad and defeated tonight, I will wake up tomorrow brave, ready to keep doing all I can to make things the best that I can...



Friday, 25 May 2012

Somethings gotta give

It is crazy town in our house at the moment... My husbands work is slow and I have been picking up extra days at school to supplement the income... In doing so I have also decided to mark national exam papers for the next 2 1/2 weeks at night and on weekends... This means on the days I also teach during the day and go straight to marking, I am away from the house for 15 hours... It means that I see my daughter for 1 hour a day, and this is breaking my heart...

I never forget how fortunate we have been that I have been able to avoid working full time since having Ayda... But I have now seen the story from the other side and my heart goes out to all those mums that are forced back into work before they are ready.... It's tough... I feel tired and grumpy and overwhelmed with all the jobs that need doing... I feel disconnected from Ayda... She is going to my husband for things that she used to only come to me for... Its been such a lovely experience for my husband... He is so enjoying getting to know his daughter on a new level and bond with her the way I have been able to ... And Ayda is just thrilled to have so much Daddy time... So for that I am glad that we have been able to swap roles for a time... But I am counting down the days when things will settle and return to what was...

In saying all of that I realised yesterday that sometimes we cant do it all, that somethings have to give... So give they did!  I ignored the 4 baskets of washing, the sink load of dishes and the gritty floors and instead laid on the bed reading stories with Ayda.... We played doctors and had a tea party and finished off the morning with a trip to the park... I reconnected and made sure she knew that Mummy was still here, still present and still completely in love with her... I let her have her day sleep on our bed so I could curl up next to her and stroke her hair as she drifted off... I would leave for marking before she woke up so I wanted to breathe in every second of her...

The jobs will always be there, but time with my toddler is numbered and I don't want to wake up one day to a 16 year old and regret that I didn't soak up those early years... Today is about baking biscuits, building block towers and painting!  More fun than laundry thats for sure!

Saturday, 19 May 2012

When it all goes wrong

When my younger brother was 6 years old, and just started school he was bullied... It effected him so much he developed a nervous stutter and slowly lost confidence and his outgoing nature... Because he felt so powerless at school he in turn began to bully our youngest brother... Who really knows why, we can only speculate that it helped him to feel powerful and in control of someone because he couldn't feel this way about himself... It took 3 years for the bullying to stop and for my brother to slowly regain his sense of self, to loose the stutter... But the damage was done, and had already set off a chain of events that would come back to haunt the family 12 years later...

9 months ago my youngest brother confessed to my mum that he was suffering from depression... We had noticed his loss of appetite, lack of sleep and withdrawal from the family but isn't that common for most 16 year old boys?  He started seeing a therapist, he started taking Prozac and slowly the story has unfolded... The bullying he endured from his big brother all those years ago has had a much deeper effect on him than we could have known... He has started to talk about is lack of trust in our parents, how he feels betrayed by them that they were so busy trying to put the bullied brother back together they ignored their baby's cry for help... Of course that is not entirely true but that is how he remembers it, that is his reality and so his memories must be validated...

On Thursday morning I received a phone call from my mum to tell me that the night before my littlest brother had had a major meltdown... After a horrible fight, unforgivable words exchanged and finally a violent episode, he took off out of the house... The brother who had once been his tormentor followed him and tried to talk him round... We wont know what was said between those brothers but one came home in tears, distraught that his little brothers depression rests on his shoulders and one came home and swallowed a sleeping tablet to block out the horrible night....

I cried when I got off the phone... I watched my beautiful, bubbly, happy 2 year old pull stickers out of her sticker book and stick them to our family cat and wondered when it all goes wrong... I find it so hard to fathom how our innocent happy babies can turn into angry, hurt withdrawn teenagers... My parents are wonderful parents and have not let him down on purpose... They didn't know any better, they were trying to do the best they knew how... But I guess sometimes our best is not good enough...

What an enormous job parenting is... Maybe one child really is enough?


Tuesday, 8 May 2012

Babies and the beach

It has been a crazy week.... Not a lot of down time or chilling at home, but it's been nice catching up with friends and celebrating life...

Last week we had the pleasure of meeting our friends newborn... Ayda took to mothering like a duck to water, holding the bottle carefully, touching her little hands and feet and stroking her head gently as she drifted off to sleep...




As I watched her put her finger to her lips 'shhhh-ing' everyone around her as not to wake baby Olivia, I started to get that familiar ache in my chest.... My throat started to tighten....I felt the beginnings of tears in my eyes.... She really would have made a wonderful big sister... And oh how that saddens me to think that neither she will get the chance to dote on her own little brother or sister, or that they will ever get to know the extent of her love as a bigger sibling....



I know a few friends who are all due to have babies towards the end of the year.... Some are having their first and some are not... I feel so excited for them... The thought of holding that precious new life in your arms, breathing in that new born smell, stroking that soft skin.... But I also feel immensely jealous... I wish it was me... I wish it was my body getting sick in the mornings and heartburn in the evenings.... I wish it was us planning out nursery's and debating over names... But its not, so I have two choices that I can see... Either shut myself off and become bitter and resentful... Or I can use this as an opportunity to get my new born fix... Support my friends through those hard first weeks.... And hold their precious little babies close, whispering love into their little ears... The latter seems so much more inviting...




We finished the long weekend off at the beach...It was the perfect Australian Autumn day.... Clear blue skies, warm sun with a fresh breeze... We loaded the eskies, sand toys and swimmers and set up camp under the mangroves.... I watch Ayda be 'mothered' by our friends eldest girl, play with our other friends sons, fighting over buckets and spades and I realised that we are blessed... Ayda will not get the chance to have biological siblings, this is true... But man does she have some amazing 'family' around her... She will never miss out of that feeling of being protected by 'an older brother' at a sleazy bar, or have someone to play hairdressers with and shop for formal dresses... She will always be surrounded by our friends beautiful children and really isn't that just as good?  What a lucky girl she is...


Wednesday, 2 May 2012

The up side

Hospital day means blood tests and xrays and weight checks and height charts... It means being prodded by doctors and nurses and disputing medication doses with pharmacists.... Its traumatic for both of us!  But the reward is once we are done with the appointments, we get to walk through the parkland's and look out over the river to our gorgeous city skyline...



While walking along the river pointing out boats and water birds, Ayda discovered a bug... She is fascinated with them at the moment and shows no fear... She just picks them up and lets them crawl all over her...






I love that she is curious and fearless... Yes its just a bug, but lots of kids and well lets face it adults are scared of little bugs... The squeal and wave them off... But not my girl... She is brave... I know that she will be able to take on the world and even if she falls and bruises... She will get back up and keep going... Because she is strong... Stronger than I sometimes give her credit for I'm learning to let go of my own insecurities and let her show me what she can do... I know I will be amazed.

Saturday, 28 April 2012

Reality.... A hard place to land

Most of the time I live in this world where I parent this beautiful, smart, funny, cheeky 2 year old... Don't get me wrong, I notice that her legs don't look like other kids her age, I can see she doesn't run or climb or keep up with other kids (although she gives it a red hot go!) but because it's just us, it's easy to think that those things will not matter....


On Thursday we were driving to our weekly swimming lesson.... I noticed a mum sitting on the side of the road in a camping chair nursing a toddler on her lap, she was wearing a fluro shirt.... Then I noticed witches hats dotted along the road, and saw some kids start to make their way, running, down the path.... I realised it was the local school's cross country... I saw happy kids, running in groups with friends, being cheered along by proud parents sitting at bus stops to crowding pathways... And I felt hot tears running down my cheeks....

I don't know what our life with look like in 7 years when Ayda is expected to participate in the school cross country... She will physically find it challenging to run, with sore legs and ankles holding her back, but its how she will mentally cope that worries me more... Will she cry and beg be to keep her home from school, telling me how the kids will laugh at her and tease her for not being able to run or keep up... Or will she be resilient enough to participate anyway, happy to walk along at the back, maybe chatting to a supportive friend that doesn't care about winning... I pray that its the latter... But I wonder how I will react if its not?  Will I make her go anyway, build her confidence and support her through one of many life's challenges of disappointment and hurt, or do I give in to my sobbing child, hold her on my knee and kiss her tears away and shh her with "of course you don't have to go baby, stay here where you are safe with mummy"... How my heart aches to think about those future hurts...  When the day comes that I can no longer protect my happy girl from the cruelties of the school yard...



To move forward, I need to be conscious of how I build her confidence and resilience... There is a fine line between making her believe she can do anything and giving her the tools to cope when she cant.... The hard reality is that I want to be the kind of mother that raises her to be the girl that knows her own limits and be happy enough within her self to live with them.... I guess I have a long road ahead.

Tuesday, 24 April 2012

Have you ever had one of those days....

A day where you get up in the morning and within 20 minutes of getting out of bed your previously, almost toilet trained toddler decides to wee all over the floor.... A day when everything you ask your toddler to do ends in  'NO' and 'I NO WANT TO' and consequently ends with you trying to have a verbal confrontation with them which makes no sense at all, especially since you are a teacher and know that you will get know where in this argument... But you continue anyway until you end up in tears, and your toddler ends up in tears and you guessed it, weeing all over the floor... again....

Its been one of those days.... And really the only thing to do is put your toddler to bed, text your friend about what a crappy mother you are and get the reassurance you need with a text back simply saying "Its a hard job.  Sometimes taking it one day at a time is too much and you just need to take it one hour at a time."  The sort of friend that you drive to see and tell the complete truth of your bad parenting too because not only do they not judge you, they tell you their own parenting fails and you laugh about how crazy life has become...That's the sort of friend you need on speed dial when you are all but ready to pack your bags, get in the car and drive very, very far away...

Being a mum is the most rewarding, yet the most exhausting job I have ever had... I feel immense guilt when I have a day like today because Ayda is my only one and I don't want to waste a single moment being cranky at her or sad or crying or plonking her in front of the TV so I can get away from her for 10 minutes... But I have realised that even when your situation is that you are raising this only child and you should be completely grateful for every day, reality is that we all, whether we admit them publicly or not, have days we are not proud of with our children and I cannot beat myself up over them... I wait for my husband to get home, I cry on his shoulder and wait for him to pour me a glass of wine..... I watch him play with our beautiful daughter while I can regroup.... I kiss my baby to sleep and I will wake up tomorrow with a renewed energy and I buy a new bottle of wine for when the next hair raising day comes to town....


Saturday, 21 April 2012

It all began when

We went to our 19 week scan and told the exciting news that we were expecting a little girl! We were over the moon and went straight out for a celebratory lunch... It was then that my husband said "so she's gonna have hypophosphatemia"....

My husband has x-linked hypophosphamtemia... So we knew that it would mean our little boys would not be born with the condition and our little girls would... We didn't really give it much more thought, what would that mean?  Some medication, a few blood tests... How hard could that be?

On March 16 2010, Ayda Kathleen Ohlson was born, and we fell instantly in love...


She was little and pink and squishy.... She was beautiful and sweet and perfect... We didnt give the hypophosphatemia another thought....  Little did we know before we could even begin thinking about that we had other fish to fry...

At our 8 week check up, we were told by the pediatrician that she had a number of hemangiomas (strawberry birth marks) and he wanted us to get an ultra sound to check for any in her liver... We went to the ultra sound and yes, there were 2 in her liver... All up she had 12 over various parts of her body, face, back, arms, hands, feet, ankles, tummy, mouth and liver.... We were refered to an oncologist to seek treatment and the ones on her face were very raised and were starting to interfer with her sight...



We began medication 4 times a day and monthly check ups with the oncologist... After 6 months, the Dr decided that they had shrunk enough to go off the medication and let nature do the rest...

In the mean time we had made an appointment for Ayda to see a pediatric endocronologist about getting some blood work done to see how bad her hypophosphatemia was and whether she would need medication... Being that my husband didn't have it that bad and she had my strong x we were not expecting her levels to be that off... We were wrong... Her results showed her phosphate levels were very low and her ALP levels were extremely high.... her xrays also showed dark spots (weaknesses) in her wrists, elbows, knees and ankles... So at 10 months old she started taking phosphate 4 times a day and rocalatrol 2 times a day...

I feel like I can't explain all the emotions we went through during Ayda's first 12 months of life... It was like we were expecting to have this beautiful little baby and enjoy all the things that come with being a first time parent, and instead we were dealing with blood tests which just make me want to cry as I watch them pin my precious girl down and jab and jab until they find a vein... X rays, watching them hold her down with clear plastic boards... ultrasounds, fasting my 12 week old, denying her the only thing she knows, food... medicine after medicine, doctor after doctor, specialist after specialist... It was exhursting and at times felt like it was all too hard... But what is the alternative?  You do what you need to do to give your child the things they need...


Its been interesting also explaining our story to others... Some friends have been so empathetic in that they can imagine, having babies of their own, how harrowing the experience was for us... Some have tried telling us "it could be worse, she isnt going to die"... Some just dont really acknowledge that it is a big deal, it just vitamin defiecency... We get it... We know there are so many worse senarios... But this is our reality and so at times its hard, and sad and stressful and tiring... Ayda is amazing and shows such resilience, bouncing back from traumatic medical appointments way before I do! It's hard sometimes to think that this is for life... She will be medicated for life... poked and proded for life...

Ayda turned 2 not long ago and we are so proud of the little person she is becoming... Her legs are quite bowed giving her more of a physical disablility with each growing month... She doesnt run like other children or climb or jump or walk... She gets pains in her legs when she has had a busy day and it makes me tear up thinking about her sad little face pulling at her legs say "sore mummy, sore" and not understanding why... It will become harder and harder for her the older she gets as she works out that she is limited physically by what she can do, and how she is 'different' from other children... I drove past a school doing cross country the other day and burst into tears as Im not sure what that will look like for us in 5 years time when Ayda is at school... Im sad about the struggles she will come accross and the pains she will have to live with... It breaks my heart...

It is with this in mind that just recently my husband and I decided that Ayda will be our only child... I just cant bring another child into the world knowing that if it is another girl, she will have a life of pain and struggle like Ayda... knowing that, like Ayda, she will have the chance of passing the condition onto her own babies and having them go through the pain I have had to go through... We adore Ayda and would not swap her for anything... But now I am aware of how big of a deal hypophosphatemia is, I cant risk having another girl and watching both my children live with this condition...

By far the most heart breaking decision I have had to make in my life... Im not done... Im not even close to being done...But I need to be a parent, and make what I think is the selfless choice... I know that there are going to be people who dont get it... They will think that it is not a valid reason for not having anymore kids, or they will think that its no big deal, I mean there are people who cant even have one baby and we are so blessed to have Ayda... But in reality even if you have 4 babies, if you really wanted that 5th and you cant, it still hurts... It doesnt mean we dont feel blessed, we do, we just never thought she would be our only one...

So we will embark on this new journey of grieving the children we thought we were going to have, the siblings we so wanted to give Ayda... Of accepting that this is our new path and enjoying every minute of our time with our precious little girl...


Im not sure what I hope to get out of this blog, it may not always (or ever) be well written, but it will be honest and I guess that is all I can be...





Thursday, 19 April 2012

First Date

Well this is it, my very first blog entry... .It feels very much like a first date!  The anticipation of getting ready, making it look pretty and respectable for public viewing.... .Fumbling through awkward chit chat before settling into comfortable conversation... Unsure of how much of yourself you should reveal straight away... So I will just start by saying I have a beautiful 2 year old daughter and have recently made the heartbreaking decision to raise her as an only child.... This blog is a way of learning to embrace my wonderful life of one, and let go of the life I had imagined... This is my journey...