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...