The Rollercoaster that I call 'Life'

 

 

Rollercoasters.. They are funny things.  You either love them or you hate them.  You either sit down, strap yourself in and enjoy the ride.. Or you look at them from a distance and think 'Hell No'.

 

Im one of those 'Hell No' kinda girls.  I look from a distance and my stomach drops just watching them.  The thought of actually going on one makes my palms go sweaty and my heart race.  But the funny thing is I absolutely love watching them with Jackson on YouTube.  Its the thing I find calms him the best.  Something about the crazy up's and downs, twists and turns soothes him when his head is all over the place and he cant find his centre.

 

It's a bit ironic to me that he is obsessed watching rollercoasters - because his life is parallel to one.  Ups and downs, twists and turns are all too common in this household.  Its something that is normal to him, but, for me like watching a rollercoaster in real life, I find myself with my heart racing, my palms sweaty and a very uneasy feeling.

 

I like the predictable.  I like the constant.  I like things to run smoothy.  I need to plan.  I need to organise.  Im not a huge fan of spur of the moment.  I get nervous around change.  I need warning. 

 

By no means am I a control freak, quite the opposite really.. I just struggle with the unknown.  I've always been like from when I was a small child.  I would worry about anything and everything.  From things that were far too mature for my little brain to actually comprehend, to things that were too out of my control to predict.  Im not as bad as I used to be but I still think far too much.

 

So fast forward to 2013, I have a life that is totally and utterly unpredictable.  I have no clue what each day may bring, heck I have no idea what each hour.. each minute may bring.

 

Everything is changing constantly. 

 

I watch my gorgeous little man struggle day in and day out.  I want to help him but the only thing I can really do is try and be the best mum I can be and be on my game 24/7.  Which is hard day in day out, year after year.  For me its more so because I never feel like I can do enough.  I watch the seizures and know there's not a real lot I can do - just watch, time, make observations and be there for him.  I then deal with the behaviour's afterwards (thats a whole new post!).  Its not fair, but then again sometimes life just isn't. 

 

I do feel totally blessed even through the haze, when we have moments of utter perfection.  When day's run so smoothly and nights go according to plan.  Even with all the ups and downs, twists and turns.. I still will forever look for the good in each day.  Take in the sunshine, breathe the fresh air, take a breath and know I really am one of the lucky ones.

 

That's the rollercoaster that is life.

 

 

 

 

 

 

 

A Letter to 3 and a half year old Charlotte

Charlotte,

It feels like only yesterday I was looking at the ultrasound screen and hearing the words 'its a girl'..  They were such precious happy moments for both daddy and I, moments we'll never forget.  I always always wanted a girl.. and here you are!

You are everything I imagined you to be - from your green eyes to your long blonde hair.  You are the sweet, special and 100% girly girl I had pictured.

You are petite but that doesn't hold you back.  You are by far the smallest in your preschool class but that's part of your charm.  You are a little shy - especially around boys.  To be honest you really don't like boys all that much, but of course - this will all change when you are bigger!  Daddy will need a shot gun to keep them away.  You often tell me you don't like this boy or that.. and often that boys are 'yucky'.

You have a smile that lights up the room.  You sound a lot like Jackson when you laugh, its so cute to hear you both together!  It makes my heart so happy.  You are wise beyond your years - thats been evident right from the start.  You would always 'observe' people - you still do.  You take everything in.

You love Jackson to bits and both of you play so wonderfully.  Some times its hard cause he can be a little rough, but you definitely can stand up for yourself.  You have overtaken him in most things but you will always play at his level.  You love pretend play at the moment.  Every spare moment you are playing 'you be the sister and I'll be the mum' or 'you be the grandma and i'll be the baby' etc.. The combinations you come up with are hillarous.  Had to laugh the other day when you had daddy crawling around the house being a 'doggy'.  You are so nurturing and caring.. forever caring for someone or something.  You will be the most amazing mother.  I can picture you already with a few kids, one hanging off your hip - helping out whenever you can.

You love dolls - especially princess dolls and 'punzel' is by far your favourite.  Its funny because she looks a lot like you, maybe that's why you love her so much.  You do not like barbie dolls and this makes me smile and giggle inside.   You have 2 favourite at the moment - A cute little sleeping monkey that Oma and Poppa gave you and also a unicorn 'pony' - a toy I bought you at seaworld.

You tell me at least 3 times a day that you love me.  You say it in such a manner that I know that you really do understand exactly what it means.. And I love you to the moon and back.  Daddy and I say at least once a day to each other, every day 'she's just so cute!'.. and you are.  We couldn't love you more even if we tried.

You are better at eating, every day isn't a massive struggle like it used to be when you were tiny.  Toast with 'bedgimite' is the hit at the moment.. it has to be in little squares.  Whatever you want baby girl!  You are FINALLY starting to eat little bits of veggies.. I hope that you grow to love them and eat all the yummy vegetarian dishes daddy and I love.

You have definite tastes in clothes - if you don't like something.. you sure let mummy know about it.  Mummy often has to bribe to you just to get you to wear pants or a jumper you aren't too fond of.  You love dresses and skirts and aren't impressed its winter at the moment.  Not enough prettiness! 

You have the longest hair at the moment - the very back touches the line of your undies!  You need a trim but both you and I don't want to go to the hairdresser.  One day I keep saying.. Mummy will do it one day!

You aren't keen on animals - especially cats.. oma's cats!  Even tiny kittens and puppy have you frightened.  You love puff though, but have lost interest of late.

You are funny - you always crack me up all the faces and little things you say.  You have so much character and personality.. everyone says that once they get to know you.  You are like mummy and take a little while to let people in.

You don't like day sleeps - you verbalise this often.. 'I don't sleep today do I mum Nooooo'..

You are funny going to bed - you NEED things.  Not want.. no you need them.  You need a bottle, this consists of 90% warm water and 10% milk.  I know its time for you to give it up, but I don't give two hoots.  You love it and in my eyes there's no problem with it.  You need 2 'blues' (dummies) - they have to be newish otherwise you wont have a bar of it.  You need a toy or two and these change depending on your mood.  Last week it was iggle piggle from Kane and Laura, also Minnie mouse - this week monkey and pony.  You also need 'nice and warms' - a wheatie warmer on your toes, nowhere else.. but toes!  Then lastly 'fluffy tucks' - a pink fluffy blanket.  Once you have these things you have the biggest smile on your face - you look up at me and say 'non-night mum.. i love you sooo much'..

I love you so much my dear baby girl.  You are one of the best things that's ever happened to me - and i'll always always be here for you.. No matter what.

Mummy xx

Music Lesson 101

 

 

Today I took a big step out of my comfort zone.

I had heard about a music class that was in my local area and the moment I heard about it I knew I wanted in. But how? Its on a morning that my children are wrecked, im wrecked and to be totally honest.. I enjoy my one day a week I stay in my pj's as long as I care to. Could I be bothered?

But today I really thought long and hard about going. You see my little mister is a rock star. He struggles with being able to do a lot of activities kids do easily.. but not music. NEVER music. Ever since he was a toddler he had impeccable timing, he could clap along to any beat (something my father in law struggles to do at 60!) and always get it right. He adores music and songs always bring a massive smile to his face. They have helped him to learn and form words. He struggles to get a sentence out but sing.. he does wonderfully.

I knew it would mean the world to him, so I packed us all up.. dragged us into the freezing cold and you know what - it was the best thing I have done in a long time.

We introduced ourselves to the very small group of mums with kids. After that we met the teacher.. who was warm and friendly. I spent a little time explaining to her about Jackson and she was pleased to let me know that her class was very routine so he'd fit right in (she obviously knew a tiny bit about autism).

So we sat down and not even a minute later all eyes were on him. Big infectious grin, clapping along and giggling. He fit right in. Through the lesson he giggled, he smiled, he played musical instruments and he made each and every mum fall in love with him.

Three quarters of the way through he seemed to get a little overwhelmed and hid in a little cubby house that was situated at the back of the class. Another child followed, as did the mother. The mother pursuaded her child out and asked jackson to come along too. He didnt. I explained to the mum about jackson and that he just needs a little time out because he's overwhelmed. She looked at me, thought about it for a second and said

'I would have never thought he has a form of autism - he seems too happy and bubbly'

I was at a loss for words, but Jackson promptly got back up and joined the group. Merrily enjoying the rest of the class. The other mums continued to glow, looking at him and that great big infectious grin. He laughed, they laughed, he laughed harder and so on.

At one point they lay down and the teacher blew bubbles over the children to calm them before singing a soft sleeping song. Jackson got up, lay on the teachers lap and snuggled in. It was such a beautiful moment between 2 strangers.

Today I thought I was going to the music class to help Jackson.. but it got me thinking... Maybe at the end of the day it helped me. I was a little nervous about all the 'what ifs'.. what if he runs around the room and wont participate, what if he gets too hyped up and cant come down, what if he has a seizure, what if the other mums look at us funny etc etc.

But at the end of the day, those mums got to experience the precious little boy that I call 'mine'. They only saw all the wonderful beautiful positive things that he is so blessed with.

And that made my heart happy. Because its been so sad.

Thank you - my precious little rock star :)

Its been a while..

It feels like forever since I've written an entry - and it has been.  12 months.  12 long months in which so much has happened.

I remember starting 2012 and feeling like 'yes this is my year' .. things hadn't been the best for the last few years and I felt like this was going to be it.  The year of me.  The year of hopes and dreams.  The year things finally, after many years of hoping, fell into place.

But sadly, 12 months after I've written my last blog entry so much has changed.. Including me.

Im exhausted. emotionally. mentally. physically.
Im a size I have never been before and that depresses me.  big time
I feel I have no inner strength.
I feel borderline depressed.
I feel out of touch and disconnected with everyone.
I have lost all sense of 'me'.

This year is starting to break me.. and im not the type of person that gets broken.. ever.
I am not the type that will ever admit to struggling.. but I have to.

The last 12 months i've witnessed more seizures than any mum should ever have to.  Day in, day out.  They aren't big ones.. but each and every one of them breaks my heart just a little.  And all those fragments that get broken every day/every few days and starting to take a toll.  My heart is crumbling.  Seeing this happen to my baby boy - it sucks.. big time.

Im a mum to 2 beautiful children that I love dearly.  But its hard work.  Really really hard.  And often I feel very alone in my journey.  I have a wonderful, loving supportive hubby - but its just the life of a stay-at-home mum.

My beautiful mum had bowel cancer - thank goodness it was removed before it spread or she needed chemo.. but it was a very scary time.  A long operation that went hours over.  I had a month of palpatations because of all the stress.  Scary, but thankfully.. it all ended up ok.  I would die if anything ever happened to her.

My dad was diagnosed with emphasemia.  Scary - my step mum died 3 years ago from it.  I dont want to see him suffer.  I know he's scared, but just cannot give up those darn ciggies.

I know that I can keep chugging along, im just doing my best to keep my head above water.  I dont want to go under.

So I have decided that I have to find the real me.  I need to do something.  I feel that blogging may help.

I have always been a writer but buried it when I got married.. I dont know why, I just did.  I would always write poems and express hurt/anger/emotion that way but for some reason buried it all instead.  Its a big part of me, so I have decided that I need to get back into it.

So here goes.  My journey.  July 2012 onwards.
A mother to 2.
A wife to 1.
A woman
     x

Remember the important things..

This morning I spent an hour just with Jackson.. Charlotte was crashed and I just really soaked in his big squeezy cuddles, his big smile and his gorgeous nature. I looked at him and felt so thankful for such a gorgeous, precious little man. I was thinking about my darling daughter, how she always cracks me up with her cheeky funny personality. How she always brings a smile to my face. I thought about how much I love her and how much I just love my family.

It wasnt long after I was thinking about how lucky I am that I got a text, letting me know that a family we know has lost yet another family member in again tragic circumstances :(

It made me realise, even more than ever.. that life is so precious. You need to enjoy every moment - you need to really enjoy your children, love them and tell them at every chance that you do.

You need to never go to bed angry. You need to forgive.

You need to set a good example and be a good person.

You just need to make this world a better place by being in it.

20's Yesterday, 30's Today

Its funny last night I was lying in bed thinking about how i'll be thirty in a few minutes. I remember a few months ago thinking how scary this is and how I wasn't at all keen on it. But you know what - last night as I watched the clock turn to 12 I couldn't help but smile. Turning 30 made me feel happy!

20's had its up's and downs - I had such high high's and such low low's.

At the beginning of 20 I was a new(ish) married girl working full time but wasn't overly happy, at the end of 20 I was a woman, a fully qualified wife and also a mother of 2 precious children working 24 hrs a day!

I have travelled, not as much as i'd like but I still have. I have seen places i've dreamed of seeing since I was a child. I've seen the bright lights of vegas and the photographed the hollywood sign. I've taken in the beauty of yosemite national park and driven over the golden gate bridge in a leaky bus. I've been in the crowd watching the ice hockey where the mighty ducks won a game they weren't expected to and i've yelled 'quack quack quack'.. i've cheered on the lakers. I've spotted Denzel Washington in a crowd of thousands.

I've been in labour for 30 hours, pregnant for 20 months and have changed more nappies than I could ever count. I've met more specialists than i'd ever care to, but at the same time met the most beautiful people I wouldn't otherwise meet.

I've had my heart broken into a million pieces and managed to pick them all back up.. on more than one occassion.
I've smiled and laughed when I wanted to scream, and kept going when everyone else wouldn't blame me if I gave up.

I've watched 2 precious babies grow inside my tummy, i've watched them take their first breaths, take their first steps and say their first words.

I've grown more in love with my gorgeous husband, each and every single day.

I've lost friends, i've gained friends.. I've had friends stick by me, and others get up and leave.

I've been involved with church, i've left 2 churches and i've been hurt deeply by church members.. heck i've even hung up on the pastor!

I've grown, inside and out. (shame not up!)

I've lost weight, i've gained weight. I've had long hair and short. I've had dark, blonde and red hair - all over the past 12 months!

But in the end everything that has happened has made me .. me.

So the last 10 years have shaped me to who and what I am today..

I am stronger
I am able
I am me

What gets me through tough times

Lately, more than ever I seem to be going through some pretty tough times. I find myself at night unable to sleep simply because my head keeps spinning around.. thinking.. wondering.. trying to understand.. Why is this happening? What could the diagnosis be? What will the future hold?

Sometimes I just need a gentle reminder that things are going to be ok, its not always going to be this hard and hopefully in years to come things will be much better.

One thing helping me through is a great website called 'Hopelights'.. Its made for parents like me, with special needs kids that need some hope and some light in our day. For those days where we need some encouragement, need some strength to go on.

A few posts that have helped me lately:

I am a parent of a child with special needs. I try really hard sometimes not to let things get to me, its my job to be strong - its my job to lead. Some days though can pull me right in two, and the strong one here is not me at all.. It is you. What I have to cope with, is just a fraction of what you overcome. I am your biggest fan my dear, especially when my world feels like its come undone.

My life isn't glamorous and it is full of hard work everyday. I go weeks before I realise I need a break. But in the end, the gifts of joy I receive with just an inch of progress - are quite extraordinary and in these moments I know we can do anything.

Today I have 10,000 reasons to sit down and cry. But I will focus on the one reason I have to stand back up and keep going - the love I have for my children