Help.

I can’t believe I’m writing this blog.

It’s hard to stomach. Honestly, I’m in knots, my hands are shaking and I feel nervous.

Because this blog is really sharing what our lives our like. It’s the ‘heart’ of the matter.

It’s not the black cloud or fog that constantly follows us… the unknowns about Chloe’s life or health. It’s not the future that plagues us about whether she’ll be in our care for the rest of our lives or hers.

It’s not even the lack of sleep, the meltdowns… the therapies.

I mean, amongst all that is some positives.

Yesterday we sat with the psychologist, a speechie, OT and physiotherapist. We reviewed the goals from last year with Chloe’s therapies.

The biggest one that stood out was –

– Chloe will gain stability on her legs and start to take steps independently.

In conjunction with that was get her new AFOs, build her strength and then there were some feeding goals and find motor goals.

– Chloe will gain functionality with using two hands to play with toys unsupported.

She achieved those goals and so much more. Things to be celebrated. Chloe’s been walking now for almost a year! Tonight we played where she stood at the end of the hallway, I called out ‘ready, steady, go!’ and she runs as fast as she can towards my arms! Runs! Just so incredible.

This post isn’t about that.

This is about how our lives are impacted daily by a child with a disability.

I precursor this to say that Mike and I aren’t perfect. Sometimes we make short term decisions that impact us negatively long term. We have often felt that we no choice and could do little more than to alleviate the stress in those trapped moments.

And here we are.

In the last 12 months we’ve lost jobs…our home. OUR HOME! We worked hard for that home. And when finances got tough… we appealed and had early releases of our Super in order to fund our mortgage to keep our roof over our heads.

We loved that house.

It was our first home together. We decorated it together… we brought Chloe home there. We made her ‘ark’ there. Our friends loved that home. Everyone was welcome.

I know, I know… it’s just a building… four walls and all that. But it was our security.

And when Mike was made redundant we decided we couldn’t hang on tooth and nail anymore, and we sold it. Creating a buffer of money to get us through about 5 months if it took that long for Mike to find a new job.

I mean, I had a new job. Life was looking up.

Then it came crashing down.

I lost my job too.

We’ve approached debt agencies, but it would seem that because we literally have no income, they can’t help us. Bankruptcy is coming. We can’t meet our financial commitments. The government continues to fight us at every turn when we apply for help, but we continue to try.

It’s okay. I’m surrendered to it.

But the hits keep on coming.

You see finding work is just not that easy. You can’t just pick up and get another job. Your either under qualified, over qualified… and companies won’t hire you because they know you will move on to something better. Mike is doing it tough. 7 months and counting with no job. Rejection after rejection. And yet he soldiers on.

To say I’m proud of his stamina in adversity is an understatement. This man stands up for his family and keeps trying. Each day. I’m proud to say I’m his wife.

I’m proud we are a little family.

But the reality is, that both of us working just won’t work. Chloe has had over 36 sick days from January to June. 36!!! If we were both working and sharing that load it would not make a good impression. That’s 15 days off each in 6 months.

And that’s not even adding in….

rushing to therapies…speech…OT…physio…psych…cardioglogy…sleep specialists…dieticians..paediatrician…the list goes on.

You know what? You can’t have it all.

We.

Can’t.

Have.

It.

All.

Where does this leave us… between broke and broke.

We feel that we need to move…perhaps to a better opportunity for me as it seems that I can pick up worker faster than Mike. We’re just not sure.

But the reality is that I need to swallow my pride. I need to wipe the cheery smile from my face and get down the nitty gritty. We are broken. Really broken. We are exhausted. And yes…

We actually want to give up.

We won’t. I won’t. Chloe needs us to soldier on.

I’ve set up a gofundme page. I’m asking…I guess…begging would be the best word. We need help to keep us afloat.

http://www.gofundme.com/4m9s79s8mc

There’s something that else that keeps us going. Restores our souls. And that’s the kindness of our friends. You know who you are.

There are the friends that set up a dinner date for us, paid for in full… to enjoy a rare night out together. These times are precious and few and far in between.

There are the friends who popped over with a lasanga and wine, and shared a meal and I know they pray for us.

There are the December Girls… you know who you are… who sent a life saving package in the post. I was overwhelmed by your generosity.

There are the long lost friends who sent us encouraging messages, and also those who already donated to help us buy food… or Chloe’s nutrition.

I’d be lost without you.

Seriously.

You have no idea what your encouragements and generosity do for our souls.

I hope one day to look back on this and think of it as just a hiccup along with the way. And I pray, that I may be in a position to help someone else doing it tough like we are now.

Raising a child with a disability is not easy.

And even though we are blessed with one crazy little miracle called Chloe in our presence, what we really need right now is another miracle to tide us over.

I also hope that one day in the not to distant future, these last few blogs that are laced with negativity and pain will once again turn to focusing on the positives and celebrations.

Soon.

I hope.

Very soon.

xx

As I sit here….

I’m sitting in our bedroom. Door closed. Typing. It’s peaceful here.

BUT… I can hear Mike giving Chloe dinner! Before that I could hear him playing with her and I have to say the laughing, the giggles and singing I heard was the most adorable thing ever!

‘Round and round the garden, like a teddy bear….1 step…2 step…tickle me under there!’

This is just about Chloe’s favourite thing to ‘sing’! She even gets her little bendy index finger and does circles on the palm of your hand. She gets impatient though, she likes the tickle bit and often can’t wait for that part so just starts trying to tickle anyone nearby…herself…daddy..her dolls!

Seriously the cute factor is just crazy.

I can hear Mike, while trying to give her dinner…

‘Good job!’

‘Good eating Chloe!’

And I hear the odd frustration, ‘No! Chloe!’ I assume she tried to throw the bowl of spaghetti across the room.

I hear, ‘Do you want more or are you finished?’

I assume Chloe signed ‘more’ at him because the next words I hear from Mike are ‘more strawberry?’

Mealtimes in our house are often a constant source of frustration or amazement! Frustration when the lounge/table/us/floor all wear the food, amazement when Chloe eats food, signs ‘more’ and finishes everything in front of her. It’s a hugely unpredictable process.

At the moment though, our lives are really in a limbo state. I have no idea what is around the corner or over the hill. I was told by a well-meaning person today on the phone, ‘Well you guys really just need a miracle.’

Never a truer word has been said.

This week the new school term started. Usually for me, as a teacher, the night before brings about feelings of anxiety and excitement, I usually can’t turn my brain off from everything I have planned for school, new and exciting things to challenge the kids.

Well, I didn’t have that this term. My return to work only last 6 months and now I’m in a place where I’m really unsure what to do.

The only thing I know for sure is Chloe needs me. And I must turn my mindset and thinking around.

The first two years of Chloe’s life I was at home with her. In the initial phase that was by choice, with maternity leave and so on. After that, it was more that ‘life’ chose it for me. You see, Chloe needed the therapies, the time, the attention. The lack of sleep in itself would have made work unbearable.

I surrendered to Chloe’s needs and worked hard to help her develop. I did everything the therapists and doctor’s suggested. I believe without this time Chloe would not be where she is today. I honestly, truly believe that.

But in a lot of ways I did that with the knowledge that at some point I would return to my love of teaching, and I would be able to balance my career and ambition with the needs of Chloe.

Now, I’m not sure that is true! I’m not sure these can ever be balanced.

And I’m in a place where, I’m not choosing again, but I must surrender to it. And then I must turn the lemons in lemonade. So to speak.

On Monday, the first day of the school term, I spent time with a friend at a play centre. To see Chloe wander off and explore and play was extraordinary. She has NEVER done this before. Usually she sits on my lap, holds my hand, I have to be right near her for her to play. And OFTEN, going somewhere new, with lots of sensory input cause meltdowns and tantrums.

The only tantrum that occurred that day was the one she did when she had to leave!

Later, I was home and put her down for a sleep. Unfortunately the nap in her cot didn’t last long.

And I ended up… on the couch, with 20% battery left in my phone, with Chloe’s little warm snuggly body in my arms. Snoring. Too scared to move I spent time playing Candy Crush (that game is always beside me!)

She slept for 1 and half hours on me.

Now in the first part of this time, I was frustrated. I had things to do! Cleaning, cooking, laundry.

And probably, I was still frustrated by this at the end.

But I sat there and contemplated what I would have been doing that day instead. Teaching, playground duty, marking, photocopying. Who knows? But I certainly wouldn’t have been here, on the couch, memorising each and every feature of my little sleepy toddler.

I know her face like I know good coffee places (this is a big deal if you know me). I know her sweet imperfections. Her little curl in her lips that I’m told is due to low muscle tone. Her flattened nasal bridge…I prefer to think of her nose as a little upturned button. The veins on her face, which are quite prominent, I don’t know why. But they are very noticeable across her eyelids. Her eyelashes, ever so damp from the tears that happened before she calmed down next to my heartbeat. Her blonde hair that has absolutely no style or curl (so disappointed she didn’t get my hair!) flops backwards. Her fair eyebrows that frame her little eyes. She has this tiny freckle on her cheek. Her little chin. Her left hand reaches out a few times and rests on my chest. Those fingers! Short, slightly clubbed… so sweet.

I sat there and thought, I’m lucky. She is not the cuddliest of kids. And right now I get over an hour of her sweetness uninterrupted. My left leg fell asleep, my other foot had pins and needs and the pool of sweat under her head on my arm was very uncomfortable.

Not to mention the slow dwindling of my phone battery and the ever-present frustration of being stuck on a level and running out of lives (Candy Crush addicts you know what I’m talking about!)

But I decided then and there, that I would turn this unfortunate change in circumstances into something that I could delight in. I’ll take the lemonade. Forget the lemons.

I might not be working. We might not know how we will pay rent next week. There might be stresses on us that I’d rather not think about.

But I get to be with her. I get to see her grow and flourish. This is what this time is for now. I’ll turn the bad into the good. I’ll surrender to the situation and just be with her. Because that is being present in the moment. Living in the now.

Sometimes the days are very long with Chloe. But moments like that one make it worthwhile. Makes the tantrums and meltdowns that happened before seem long gone. Makes having no job more bearable. Because I get to be with her.

Of course, I’ll enjoy her days at daycare too – because all of us need respite sometimes from the craziness!

Sleeping

Who would have thought?

Happy 4th of July! For us, July 4th is our wedding anniversary! Today, well, 6 years ago today I stood before my now husband and made promises.

We celebrated with friends, we had an absolutely wonderful wedding. We were excited about heading off on our honeymoon. Where we dreamed and talked of what the future would look like.

Honestly, we had no idea. But I write this blog today because I’m proud of us. I am. And I want to put it out there. 6 years isn’t much really, it goes in the blink of an eye. But we’ve been through so much in that 6 years and I’m proud we’re still standing. Together.

6 years ago we were both working. DINKS…. Double Income No Kids. We spent money, Owned a home… and we weren’t really sure if we would have children. We both were quite happy it just being us. And although, like most people who get married we got asked the question often, ‘when are you having kids?’

In the last six years we’ve lost jobs, well, Mike had been made redundant three times! Yes, three times! We’ve been through lots of work issues, health issues.

But no experience could have prepared us for parenthood. A special kind of parenthood.

The kind of parenthood that pushes a marriage to it’s limits. To the brink. Did you know that 80-90% of marriages, when there is a special needs child in the mix fail? That means that only 1 in every 10 or so marriages actually pass muster when it comes to special needs parenting!

The odds, really, are not on our side!

I can see why this is the case. Parenting a child with special needs pushes you to the very brink of insanity! It’s true, it does. And I know what most people are thinking, so does ‘regular’ parenting, but just bear with me for a minute. I’m going to tell you a cold hard truth.

It is different. It is harder. It is challenging.

I’m not looking for sympathy. I’m just getting it out there. It’s the truth.

Marriages break down all the time, over the same issues.

You see, parenting a child with special needs isn’t just a challenge sometimes, it’s a challenge all the time. There’s a normal you both come to accept and it’s a different normal to what others would accept.

You accept that sleep is possibly a thing of the past. I know I know, lots of parents accept that. BUT, with a child like Chloe, sleep is really a thing of the past. Sleep is so vital for being able to function normally.

You accept that you will be tired, often emotional and irrational and that your partner is going to get the brunt of that a lot of the time.

You accept that although you might try to run away from your special needs world at times, it follows you. Like a few weeks ago, Mike and I decided to take Chloe to a local wildlife park. Just be a normal family for the day. Forget about the stresses of our lives. Well special needs parenting came to hit full force when we got to the entrance of the park. Because Chloe saw the entrance, and backed away and sat on the ground. There was no way she was walking through that entrance. She didn’t like the rocks, or the darkness (It’s like a cave you walk through) or perhaps the people (although there was no crowd). So I had to pick her up and persevere that she would brighten up.

It took about 2 hours for her to start looking like she was enjoying herself. And that’s without discussing trying to get her to eat or drink while we were there, or walk around…or … well…

You accept that your lives are changed. For the better. But also sometimes for the worse. There I said it. The worse for us? Gone is our double income. Our house that we worked for so hard. Gone is our job security. In the place of these things are fear and worries about our financial future, a rental house. And the constant hunt to find a job that will support our family and work for us.

Intolerant

Last week I sat in therapy (yes I do go to therapy) and the psychologist told me that I seem intolerant.

It is not the first time I’ve been told this. Even my mum tells me sometimes. My therapist asks me if my intolerance is a new thing.

I ponder this for a minute. I think it is. I’m impatient. I don’t suffer ‘fools’.

She asks me why.

The cold hard truth is that I am just broken. Not so broken I can’t be fixed. But honestly, just broken.

The life we dreamed with Chloe, together as a couple has been tough. Mike and I have weathered some storms. Some real doozies if you will.

And now, these storms make me intolerant. I just don’t have time for it.

I don’t have time for people who are fake, insincere, or just don’t want to get it.

If that makes me intolerant, then so be it.

The thing is, intolerance of ‘things’ for me comes from a place of constantly feeling like I need to fight. As a parent of Chloe, I do live in this world where I fight constantly. I fight for her, I fight for us, and honestly, I do fight for others.

Fighting conjures up negative responses in most people, but this is where I live. Always knowing that I need to get on the phone, write another letter or plead my case to someone so that I can achieve the best results for my daughter and what she needs.

The first two years of her life were like that. There was a lot of fighting.

There was also a lot of surrendering.

And I’m learning. There’s much to fight for, but there’s a lot to let go. This is a work in progress.

At the beginning of this year I blogged about the fog lifting, but unfortunately the fog is back. Thicker than ever. I don’t know what is around the corner or right in front of me. It’s just easier to pull over and wait for daylight, the fog to lift or someone to show me the way.

I spent those first two years in a fog, and I’m afraid I’m back there in a lot of ways. This year was supposed to bring much excitement, new job opportunities, professional growth and yes, Chloe being a toddler.

But life likes to throw you curve balls, and with Mike still looking for work, I’m now in the same boat but not by choice.

Those first years with Chloe I put my career aside and concentrated on her, getting her to therapy, getting her well, keeping her safe and fighting for intervention. I got her to eat! I’m proud of that one!

This year was supposed to balance out those parts of life, work and Chloe. But here I am, a victim of things beyond my control and stuck in the fog. Lies, manipulation and the implication that perhaps I can’t work (and Mike too) because I have a child with a disability. This one hurts me to my core.

If you think I’m talking in circles, you’re probably right. I’ve been sitting on what to say or how to say it now for over a month. And I still can’t figure it out!

But here we are. I feel broken at times, but I know I’ll pick myself up and dust myself and soldier on. Why?

Chloe.

She needs me. She needs us. And so I tackle this new unwanted chapter head on. We’re already heading back to occupational therapy, feeding therapy, physio, speech and early intervention playgroup. All these things I know will only benefit Chloe.

Financially this leaves us in ruin. Seriously. I don’t even know how we will pay rent next fortnight. Haven’t got a clue.

But I have to know that somehow we will make it through.

Enjoying dress ups!

Because Chloe needs us too! She’s doing phenomenal! She’s eating up a storm, running around. Talking so much more. She’s a real little girl. She loves her dog. Loves dolls! (She can spend a considerable amount of time putting her dolls to sleep with blankets after feeding and changing their nappies! It’s seriously cute!) Her cardiac checkup was excellent. She even probably has about 30 words in her repetoire now. She craves routine and loves to be out and about. Chloe loves babycinos and has acquired a recent love of cupcakes (since a hospital stay a few weeks ago and an ng insertion she seems to have decided to eat!)

There’s so much to be thankful for.

We are lucky with her, Mike and I, that she reminds us daily (and pushes all our buttons as you would expect any toddler too) that we can fight on. Just like her. Intolerance to people who don’t care? Whatever!

We have a little miracle living within our house, a constant reminder that things can get better, and they will get better.

Surely they will? Right?