Diagnosis

As we sat in the small office of the psychologist and she told us our daughter had Autism Spectrum Disorder – mild to moderate, it wasn’t a surprise. It was what I had been expecting. But still. The reality of it, to see it in writing in the report, the knowledge that this was something our beautiful darling daughter would have to deal with for the rest of her life, broke my heart.

I’m so sad, and so angry that this is her fate. She is so amazing, so strong, born fighting. She has her whole life in front of her. I want her to have every opportunity available, I would give her the world, on a platter, if I could. She deserves the very best life has to offer.

I understand that we caught it really early. I know she will have the the best chance with early intervention. I know there are so many services, so many resources out there to help her. I get that. However, right now, right this second, I am so pissed off. It’s not fair. I don’t want her to have hurdles she needs to overcome, I don’t want her to have to struggle to ‘fit in’. I don’t want her to be in this bubble that she is in, that we have to learn to penetrate.

I worry about her future. I worry about whether she will be able to make friends, will she be picked on? Will she need an aide at school? Will it be obvious that she is different, that she thinks differently? Will she be able to live independently as an adult? Will she fall in love? Will she even understand love? So many ‘what if’s’ that no one has the answer to right now.

So I go through the motions. I contact all the different agencies that she will need to access for assistance. I fill out all the different forms; for funding, for early intervention , for wait lists. I follow all the steps that I am told, take control of the only things I have control over. I nod and agree with people when they say how great it is we got it early, how fabulous early intervention is. And I do agree. That doesn’t make it better though, it doesn’t make it easier. It doesn’t take away the worry, or the fear, or the guilt.

Just like knowing that she has ASD doesn’t make her behaviour any easier to deal with. Until we start therapies I am flying blind, metaphorically hitting my head against a brick wall as I struggle to communicate with her, to get through the copious daily meltdowns. The guilt I feel when I lose my temper is intensified, as I know she can’t help her behaviour. I struggle to get through every day, twelve hours without a break, without any help (apart from my husband, but he is at work through the week) The stress and the worry, the fear, wears me down. I love my daughter, but she is relentless, both of us frustrated that we can’t be understood. It’s overwhelming and exhausting, and most days end in tears.

I know this is not our ‘forever’. We will get through this, we will get help, we will learn. We will break down these barriers between us and our child. It has only been a week since diagnosis. We are still struggling with this new chapter in our lives. I know we will move forward, with hope and strength.

In this moment though, I am exhausted. I am sad, I am angry and I am scared.

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Not waving, drowning.

November has been a really hard month for our family.

We have been in the process of moving house, our family car died, we experienced a crisis with a family member, another family member has become quite ill.

I had further laser therapy on my eye, with the specialist admitting that it was not guaranteed to work, and could cause more damage than good.

My daughter has continued to be assessed for autism, with the final report from the psychologist next week. My impression from the last appointment is to prepare ourselves for a diagnosis.

We are exhausted, overwhelmed and anxious. Each day seems to bring a new stress. Our finances are stretched to the limit, paying double rent for the last month of our lease, and all the added costs of moving house.

I’ve had so many ideas for blog posts, but when I finally have time to myself, the urge to just lie down and close my eyes outweighs the urge to write.

We are just treading water, getting through each day.

The end is in sight, we will be completely done with the old house by the start of next week. Thanks to a very generous loan from a family member, we will have a new/old car by the end of the week. By the end of next week, we will have a better idea of what is going on with Milla, and how we can help her.

We just have to get through November, and then some of our load will lighten.

For all my moaning, there have been some happy moments in this blasted month. My husband and I celebrated our first wedding anniversary yesterday. I would be completely lost without him, he is my best friend.

I had my first post published on The Bub Hub website, so that was very exciting.

Still, the overwhelming pressure is weighing me down. It’s hard to keep my head above water, when it feels like I am drowning. I just need a moment; to catch my breath, to regroup.

It will come. Until then, I will just keep putting one foot in front of the other, doing what has to be done. Just keep walking towards the light at the end of the tunnel. xx

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Wordless Wednesday ~ My baby turns two.

Today my gorgeous girl turns two years old. Sometimes it is hard to believe that she was ever that teeny tiny little prem baby, she has come so far in two years. We are so proud of her, and love her to the moon and back xx

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Reflections Five Years On.

Five years and one day ago, I sat in a small room on my own, whilst a sonographer told me that not only was I carrying identical twins, but they had both died.

Five years ago today I walked into a hospital, with two tiny baby inside me, and woke up from a general anaesthetic empty. With a gaping hole not just where my babies had been, but also where my heart had been.

Time passed. Life went on. I finally let go of my toxic partner. I started to heal. I still carried that ache inside me, where they were missing, but it didn’t consume me anymore. I met my husband, we had our beautiful daughter. Five years later, I am living a beautiful life.

A life I wouldn’t be living, if my twins had lived. I struggle to make sense of this. How can I grieve them, miss the possibility of them, yet know if they were here, I would not have this life. I would not have my daughter.

My heart aches for all that I lost, those two little souls, my children. I was their mother, and I would have given them a beautiful life, but it wouldn’t be this life. They would not have had a father in their life. They would not have had the loving strong family unit that my daughter has. They would not have had financial security. We would have made it, the three of us, I have no doubt. None of that mattered, then. I would have fought, and struggled, and done everything in my power to give them the life that they deserved, if I had of been given the chance. I never got that chance.

And time keeps moving, and now I have this life. This life, my little family, that I wouldn’t give up for anything in the world. I try to understand how the twins fit in this life. I know that they are my daughters siblings. I believe that they delivered her to me, safely. I know that I think about them, wonder what they would have looked like, what their little personalities would have been like. I know every time I see twins, there is a twinge inside me, a tiny stab, a vision of what could have been.

People say that everything happens for a reason, but I don’t think I believe that. No matter how awful, and difficult my circumstances were, I don’t believe there was ever a good enough reason for them to have been taken from me. And even now, whilst I live happily ever after with my husband and daughter, I can’t believe that they had to die, so I could have this life.

Maybe there is no plan? Maybe sometimes really awful, shitty things happen to people, and sometimes wonderful, beautiful miracles happen to those same people? Maybe life just doesn’t make sense, and all you can do is keep getting up each morning, keep putting one foot in front of the other, and have faith that the world keeps turning, no matter what happens.

I can’t make sense of why I lost my babies.There is no sense. I did not have a choice. I do know that I am a different person because of them. I do know that I will never forget them. I do know that they will always be my children, no matter what happens, no matter how many years pass. I know that every October, the tears will flow, tears that I keep under wrap most of the time. I know that when I think of them, of the short time we had together, I will curse the universe for taking them from me.

I can’t understand how my beautiful angels could fit into the life I have now. This is what I do know ~ I can grieve for them, cry for them, wish everything was different, long to hold them in my arms. I can feel all of that, and still be grateful for all that I have now, for my husband and my daughter. One thing does not cancel out the other. Life does not make sense. The ‘what ifs’ cannot change a thing. This is my life. I am a mother to a daughter on earth and two angels in Heaven. I will love them, remember them, cherish them, until the day comes that we will be together again. That is all I know. xx

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Friend From Afar.

I’ve mentioned before about a lovely group of friends I’ve made from a forum of mums expecting bubs in December 2010.

There is one special friend I made, who ended up playing a very important role in my life.

Kirsty’s waters broke at 22 weeks, and her little miracle girl Imogen was born at 26 weeks. So teeny tiny, but such a fighter. I followed updates of how Kirsty and Imogen were going, amazed at their strength, and Immie’s progress.

Then, at 31.5 weeks, my waters broke. As we drove into the hospital, despite my pounding heart, I thought of Immie. My husband and I reassured each other. At nearly 32 weeks, we were fairly certain that our little one would be OK.

Over the next couple of days, as I spoke to family and friends about Milla’s imminent arrival, I told them about my friend, who’s beautiful bub was born at 26 weeks, and how well she was doing. Milla had eight weeks longer to ‘cook’. As much as I hated that Kirsty and Immie had to go through all of this, knowing their story gave me strength and confidence to deal with the fact that I was about to have my own little premmie. I know I would have been so much more afraid, if I had not been following their journey. I am eternally grateful for Kirsty, sharing her experience with us.

After Milla’s birth, I received so much support from Kirsty, as we discussed NICU, desats, B1′s, C-paps, all the medical jargon that you couldn’t understand unless you were living it. We understood each others highs and lows. We understood the feeling of jealousy of a ‘normal’ pregnancy; as we heard about the other mums in our group holding baby showers, going on maternity leave, growing bigger and bigger. We messaged each other to say how pissed off we were when one mum in the group told Kirsty that ‘they were jealous of her because she got to have her baby now, whilst they were still waiting’ (I mean, seriously??)

As time went on, and our babies grew, we discussed ‘secret premmie business’, that mums of term babies just couldn’t understand. The health problems, the developmental delays, the set backs. Despite never having met each other, we became firm friends.

When I was planning my surprise wedding, Kirsty was one of the few that knew about it (being in a different state, it didn’t count!) She gave me the most amazing wedding present, which I was so grateful for. She had even hoped to fly down for the wedding, but unfortunately had last minute work commitments.

I know that she has my back, and has stood up for me when so many others didn’t.

What started as a friendship based around our mutual situations with our premmie babies, has grown into a genuine, true friendship. We have shared many ups and downs together, and finally, this weekend, we will meet face to face. I am leaving hubby and toddler at home, and flying to Adelaide on Saturday for the weekend.

I am so excited to finally meet a person who has meant so much to me in the last few years. I cannot wait to meet the little miracle Imogen, and of course her gorgeous older brother. Despite being a little nervous, I know we will get on just as well in person as online, I know there will be a lot of laughter, and maybe the odd moment of ‘running amok’… And as much as I will miss my little family, it will be a nice break for me to recharge.

So bring on the weekend! I absolutely cannot wait!! xx

Things I Know ~ Fighters Keep Fighting.

I am linking up with Dorothy from Singular Insanity this week, for “Things I Know”.

I know I have an amazing daughter. She is beautiful and funny and smart. She was born fighting, at 32 weeks, and is about to turn two years old next month. She has always been slightly delayed, particularly in her gross motor and language skills, but I never doubted she would catch up. She is a whirlwind of a child, always on the go. She can switch from happy to sad and back to happy again within minutes. She has little quirky behaviours, some of which make me laugh and some that make me tear my hair out. She charms everyone who meets her, and she knows it. She is perfect, to me.

I know that last month the paediatrician told us that she can see autistic traits in our daughter. That we should get her assessed, sooner rather than later. Last week we took her to the speech pathologist. I was worried, nervous, but I think deep down I really thought we would get told not to worry, that it was just a language delay. Instead we were given a referral to take her to a psychologist, for further assessment.

I know that I am really pissed off. I’m angry at the world, and I want to rage, to scream, DON’T TOUCH MY DAUGHTER, LEAVE HER ALONE. I have fought so damn hard to be a better person, to get my shit together, to give my daughter a normal life. I want her to have every opportunity in the world. I want her to grow up believing in herself, I never want her to feel small, and not worthy, like I did for so much of my life. I want to protect her, to take all of life’s punches in her place. Take my sight, take my ability to have more children, tie that bloody Black Dog to my front gate. I’ll fight it all, but leave her alone.

I know that we have a long road ahead of us. Specialists, assessments, reports. A diagnosis probably wont be made for at least a year. It could be argued that at two years old, she is too young to come to any definitive conclusion. So we just take each day as it comes, put one foot in front of the other, try to ignore the ‘What if’s’ and just focus on the ‘Today’.

I know that whatever the future brings, she will always be my baby girl, my Mooie. She will always be perfect to me. I will love her fiercely, adore her, be in awe of the miracle she is. I know whatever hurdles we are faced with, we will fight them. We are fighters, and fighters never stop fighting.

These are the things I know.

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Wordless Wednesday ~ The Little Girl That Could.

Originally this post was going to about my daughter, her developmental delays, and the fact that our paediatrician wants her to be assessed for autism.

The trouble is, I don’t know what to write. I don’t know how I feel. Some days I’m convinced that nothing is wrong, other days I’m certain the paediatrician is right. We are seeing a speech pathologist next week, maybe that will provide more clarity. Maybe after that, I can succinctly describe my thoughts, my feelings.

For today though, I just want to share what an amazing little girl my daughter is, and how far she has come after her unexpected entrance into the world at 32 weeks. No matter what the future brings, I know she will always remain the strongest, smartest, funniest, cheekiest, cutest girl in the world to me.

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Finding Jane ~ Part Three

After nearly two years of feeling frumpy, of neglecting myself, of disappearing into the role of a ‘mother’, a ‘wife’, I knew it was time for a change. I owed it to my family; my husband and my daughter, to be the best ‘Me’ I could be. But more importantly, I owed it to myself. Thanks to Justine, from Total Image Solutions, I took the plunge, I put myself out there, and I said “This is not OK. I want to be better than this.”

clothesI made the decision to “Find Jane”. It is a work in progress. Discovering who I am now, post baby, is not going to happen over night, it will take more than a shiny new look. But damn, this shiny new look has given me the confidence I need to start respecting myself again. To remind me that I am more than “Milla’s mum”.

So here we go ~

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My comfy ‘at home’ clothes.

My comfy ‘at home’ clothes.

Replacing the baggy track pants, and my husbands hoodie!

Jacket ~ Kmart, $15

Singlet ~ Face Off, $7.50

(Already owned the leggings)

clothes2Blazer ~ Target $35.08 (on special, RRP $39.20)

Singlet ~ Face Off $7.50

Jeans ~ Target $25 (on special, RRP $30)

clothes3Cardigan ~ Kmart $15

Shoes ~ Rubi $19.95 (2 pairs for $30)

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Green shirt ~ Target $25.06 (on special, RRP $28.00)

Jeans ~ Target $25 (on special, RRP $30)

clothesSleeveless top ~ Kmart $15

Jeans ~ Kmart $7.00

All in all, I spent $263.40, on a total of fourteen ‘mix and match’ outfits.

clothes(Not shown; a new bra, and two pairs of high waisted knickers)

On Sunday, I went out to the shops with the family. Nothing special, just to pick up Milla’s birthday present of lay buy, and do a bit of grocery shopping. Before my makeover, I would have worn track pants and a hoodie. Embracing the new ‘me’, I wore green pants, a blue shirt, blue shoes, mascara and tinted moisturiser. And, do you know what? I felt great. I don’t think I actually realised how invisible I felt before, until I didn’t feel invisible anymore. I felt like “Me”. I felt like “Jane”. WOW.

To be honest, when I started all this, I really didn’t expect to feel so different. I honestly didn’t realise how crap I felt about myself, until I starting feeling good instead.

I know so many of you have been feeling the same way as me, lost, searching for your identity. I think these posts have received the most feedback of anything I’ve ever written. Believe me when I tell you, that once you start respecting yourself, you will start to realise that you deserve that respect.

Changing what is on the outside, doesn’t necessarily change what is on the inside. One of my favorite quotes, is “Fake it until you make it.” Some things are out of our control. Depression, the “Black Dog”, sometimes these are things we can’t control. But confidence, self esteem, and most importantly self respect, these are all weapons against the negative ‘self talk’ that fuels these issues.

I would like to say a huge thank you to Justine from Total Image Solutions. She has truly helped me to find a style that suits who I am now. Yes, I’m a mother, but I am also still Jane. I can, in all honestly, vouch for her passion and commitment to working with women to rediscover their ‘mojo’, their style, their confidence.

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If you are interested in finding out more about the services Justine from Total Image Solutions can provide, you can visit her website www.totalimagesolutions.com.au , ‘like’ Total Image Solutions on Facebook , or give her a call on 0438 271948. Another service that is coming soon to Total Image Solutions is “Girls Night In” where a group of friends can get together and Justine will come to you for a fun and informative styling session. I should have the details of this within the next few days!

If you take nothing else from these posts, please take this ~ You are worth it. You deserve to feel amazing, to feel confident. What do you need to do to feel good about yourself? Do it.  xx

Wordless Wednesday ~ Winter on the Peninsula

I really hate Winter. I hate the cold, I hate the rain, I hate dark afternoons.

12 months ago, my family and I, on a complete whim really, packed up our little unit in suburbia and made the sea change to the Peninsula. You can see the ocean from the top of our road. The beach has always been my ‘happy place’, and this is where I spent the first day of Winter this year.

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Living the dream.

Counting My Blessings.

There is really very little I can say in this post, that I haven’t already written about in Baby Baby Baby and One Pink Line. Since developing Proliferative diabetic retinopathy during pregnancy, and losing a lot of my sight, it has appeared unlikely that I would be able to have another pregnancy without risking complete blindness.

However, earlier this year, my husband and I made the decision that we would like to try and have another baby. It is something that we both want, and it appeared that perhaps my condition was improving. My left eye that had been operated on last year appeared stable, and although there was still residual blood spots in my right eye, we were hopeful that if the same operation was performed on that eye, there was a chance that the risk of blindness from a susequent pregnancy may be much lower than originally thought.

If we prepared for this pregnancy, knowing all the risks, under strict monitoring, we really believed it could be done. Perhaps even start trying towards the end of the year. We were excited, hopeful.

Just over a week ago, I went back to the eye specialist, all prepared to talk to him about our plans to try and conceive, and the possibility of scheduling an operation on my right eye. We went through the usual process, drops in my eyes, testing the sight, then he looks in them with his fancy medical equipment. He sits back in his chair, and writes his notes. And he tells me that there are further hemorrhages in my left eye, on the outer sides, that’s why I can’t see them yet, and I will need further laser to try and prevent more bleeds. My left, operated on eye.  My right eye has grown more abnormal blood vessels, in the centre of my retina, despite the copious amounts of laser therapy I have had. They just keep growing. The Dr explains that there is only so much laser he is willing to do, as every round of laser causes scarring to the retina. It’s a balancing act, between the laser getting rid of the abnormal blood vessels and trying to minimise the damage the laser itself is doing to my eyes. He tells me that if the vessels are not hemorrhaging then it might be safer to leave some of them there, as opposed to risking permanent damage from the laser.

And I know.  I ask anyway- “So, if I was to get pregnant again, the vessels would hemorrhage?”   Without a doubt. And I know.  The time has come that I need to be realistic. My body, my eyes, will not handle another pregnancy. My condition has deteriorated even without the stress of pregnancy. The specialist is not sure how much more laser my eyes will take. Hopefully, enough that I will regain enough sight back to be able to drive. Enough sight to be able to lead a normal life, to be able to see my daughter grow up.

As much as I want to wallow, and cry, and lament about how unfair it is, (and trust me, I have already, a little!) I need to count my blessings. I have a beautiful, healthy daughter. I am a mother. I am more blessed than many women, who are desperate for a child and are unable to conceive, or who have carried a child, but not been able to bring them home.

I am not blind, despite it having been a real possibility when I was pregnant. In fact one specialist said that I probably would have lost my sight if my daughter hadn’t have been born two months early. Now there was a real blessing in disguise!

I am sad, desperately sad, that I will never carry another child, that I will never have another baby. However the only way I can move forward, is to not let the sadness blind me (pardon the pun!) from the fact that I am truly blessed. Not let the sadness be stronger than the gratefulness I feel for all that I have in my life. I will count my blessings every day, every time I look at my daughter. xx

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