A Valentine’s Message for my Husband

I have been blessed to marry my childhood sweetheart, my best friend.

We used to dream of our future – what it would be like, what jobs we would have, where we would travel and what our babies would be like.

Fast forward to now and we have 2 boys – one with SMA and one about to be diagnosed with autism.

I stay at home to look after our boys while my husband goes out to work to pay our bills.

It’s far from the life we had planned – we didn’t plan for our lives to revolve around hospitals and meltdowns but we did plan to be a team, to laugh together, to cry together to face challenges together.

Our boys have made us stronger and I love my husband for the daddy he’s become.

So here’s a valentines message for him:

I saw your face on diagnosis day; I saw your heart break and I saw your dreams crushed.

I saw your pain at the situation that couldn’t be fixed and I saw your fear at the uncertainty of the future.

But then I watched as you made different dreams, you adapted your plans and you changed your priorities.

I saw you researching, I saw you figuring it out and I watched you become a totally awesome daddy.

I see you going to work every day and going through the daily grind, I see you coming home tired, I see you doing all you can to provide for us.

I see you when you’d rather be chilling but instead you’re taking over physio routines or you’re doing meds so I can take a shower or you’re helping me sort dinner when an appointment has run late.

I see you driving from hospital to hospital to be with us when there are treatments or tests.

I see you run to the supermarket because I haven’t been able to get out that day.

I see you diffuse meltdowns, I see you type up social stories, I see you make cool down areas and I see you trying to find solutions.

I see you turn down nights out, I see you miss your team playing. I see you.

I see you laughing and having nonsense with our boys, I see your sense of pride when our boys reach a milestone, I see you celebrate when our boys achieve a miracle.

I am so grateful to you for all you do and please know I see you totally smashing this different kind of normal life.

This Valentine’s Day I see you and I love you for all of it.

What You Don’t See

My oldest son is about to be diagnosed with autism.

I guess I’ve always known he was different, a bit quirky and he’s always done some odd things but these things are about to be given an official name and that name is autism.

You might not always see it but it is there and so here’s a few things about my son that you don’t see:

You might see my son playing happily at the park but what you don’t see is that he’s going down the slide over and over again in a repetitive way, you don’t see the clock inside his head that he’s keeping his time with, you don’t see that he’s trying to beat his record every time.

You don’t see that the other children have tried to get him to join their game but actually he’s happier playing his own game and you don’t see me warning him every few minutes that we will be leaving the park soon because the transition will be difficult for him to handle.

You might come into my home and see my son watching a cartoon on his tablet but what you don’t see is that for the past few weeks he’s watched every season and every episode of that particular cartoon, you don’t see him quoting chunks of language from one of the characters…

You don’t see the big deal it is if I suggest we watch something else.

You might see my son playing with his trains like any other boy but what you don’t see is he has each of his trains placed strategically and if someone moves them it will cause chaos in his world.

You might see him looking at his globe of the world but what you don’t see is that he knows the temperatures in a lot of the countries he’s looking at and he knows how many hours it will take to fly there.

You might look through my kitchen window and catch a glimpse of me and my son at the dinner table but what you don’t see is the battle I’ve had to even get him to sit down because he is not interested in eating, you don’t see that he’s asked me for fish fingers for the 100th night in a row and you don’t see the melt down that will occur if some of that spaghetti bolognese spills onto his skin.

You might see my son sitting in the class, behaving well and carrying out his tasks but what you don’t see is the effort he’s putting in just to be able to get through the school day.

You don’t see him struggle to understand all these different conversations going on around him and you don’t see him taking every lesson very literal.

You might see my son come racing out of school at 3pm and running straight to me but what you don’t see are the hours we’ve spent going over social stories and the preparation we’ve gone through to get him to do this. You don’t see the burst of emotion he’s having at the school day finally being over.

You might see my son in the supermarket, you might think he’s being rude or naughty, you might even comment on it but what you don’t see is him struggling to process the lights, the noise, the busyness, you don’t see all this information flooding his brain so that he cannot cope with it.

You might not always see it, but I do.

The professionals have seen it and they’re about to tick boxes, add up score sheets and give my son an autism diagnosis.

You might then just see autism but I see a boy whose mind works in an incredible way, a boy who notices things others don’t, a boy who amazes me every day and a boy who fills my world with awesomeness!!

An Open Letter to my Wonderful Parents

Life with my two boys is very full on; one of my boys has SMA and the other is on the autistic spectrum.

My days require planning, organisation, a sense of humour and an extra pair of hands!

Most days this extra pair of hands is the hands of my wonderful parents so here’s my open letter of thanks for all they do to get us through the everyday:

To Mum and Dad,

Thank you for being there for me and my boys day and night, for the making mad dashes to our house in the middle of the night so we can rush off to hospital in emergencies and for helping out in the mornings with the school run.

For the afternoons where you keep me company so I’ve not had to spend the day in the house by myself and for the evenings you spend with the boys so me and Craig can actually go out and remember who we are.

Thank you for answering the phone any time with “We’ll be there in two minutes” and for cancelling your own plans to help us when our schedule has been thrown into turmoil.

Thank you for the dinners that are cooked when our hospital appointments run late, the basket of ironing that has been done while I’m busy doing physio routines, the floors that are mopped when I’m answering the dozens of phone calls and the washing that is sorted when we have a sickie day.

Thank you for learning how to do tube feeding so that I can have a break sometimes, for helping with physio, for researching and giving me ideas on how to deal with autism and for adapting everything so that the boys still do all the normal things that boys do with their grandparents; the trips to the café, playing at the park, swimming, board games, reading stories and camping out.

Dad, Thanks for taking the time to help me with my biggest challenge yet – learning to drive a wheelchair adapted vehicle.

Thanks for fixing everything in my house – walls chipped by wheelchair wheels, shelving in the cupboards, breaks that have occurred from melt downs, adapting equipment, putting mirrors and televisions on the wall – I don’t think there’s anything you can’t fix!

Mum, thanks for being my sidekick at hospital appointments, for being the extra pair of hands and eyes I need when the two boys are together. You are the person who listens to everything and gives the best advice.

Thank you for being the person who brings sunshine to our days.

I don’t think I could ever thank you enough for all you do – we are so very blessed to have you as vital members of our team. Thank you for always supporting us, always believing in us and thank you for showing us it’s absolutely okay to be living our different kind of normal.

From me x

Why is He in That Chair?

Just a few weeks ago we celebrated the miracle milestone of Zac starting nursery.

Having SMA type 1 meant that this was a milestone we did not know if Zac would see and although it was definitely an occasion to celebrate, it also brought feelings of fear and anxiety for me as a mama.

Zac was diagnosed at 17 months with SMA – a neuromuscular, life limiting condition.

Since then I’ve gotten used to the stares, the questions and the interest in my son’s life. I’m okay with people asking most things and I like to answer as honestly and as openly as I can.

I don’t mind people asking about Zac’s feeding tube, his physio routines, his hospital visits or his treatment but I do find people asking about life expectancy is a step too far.

I can answer these questions as a mum.

I can choose which ones to answer in detail and which ones to ignore and I can choose to protect Zac in my answers but I was afraid nursery would bring questions that Zac wouldn’t be able to answer and that it would also cause Zac to ask his own questions.

The day for starting nursery arrived and I wheeled Zac’s bright green superhero wheelchair into the foyer and then I transferred him from this chair into his big blue nursery chair.

I fitted on his tray so he could access the toys and we were good to go meet the other children.

“Why is he in that chair?” one curious little boy asked.

I answered simply “Zac needs his wheels to get around the nursery as his legs aren’t strong enough”. I waited for the further questions, waited for their reaction, waited for the curiosity to think up something else but all that followed was “oh do you want to play”.

In that single moment I saw a group of children who didn’t need to question and they didn’t need answers – they simply accepted Zac for who he is.

We’ve been at nursery for a few weeks now and since that first question there have been no more.

Zac’s chair is always surrounded by friends to play with; the children excitedly bring him cars, trains and building bricks to play on his tray.

They don’t question Zac’s ability and it’s almost like they instinctively know; during pumpkin carving a little boy came over to Zac and helped him roll the pumpkin when it was his turn, a little girl brought Zac the small light weight trains because in her words “Zac has tiny hands so likes tiny trains”.

I see these lovely children accepting Zac every day.

They don’t need to know what his condition is, they aren’t interested in his medication, they don’t get weighed down by worries of his future, they just see Zac and want to play and have fun.

I’m sure as Zac gets older there will be questions from his friends as they start to realise he’s different but for now it makes my heart very happy to know that Zac is accepted for Zac, he’s accepted for his different kind of normal – no questions asked.

Remember, Remember the Month of November

I love November; the dark cosy nights, cold crisp mornings, fireworks, autumn leaves and smells of gingerbread, cinnamon and toffee apples.

But two years ago, November changed our lives forever.

It’s now a month I won’t just see for all the seasonal things I love, no, when November comes around now it marks our diagnosis month.

November 2016: We had been going through the motions of hospital appointments, waiting lists, referrals, blood tests and more waiting lists trying to figure out why our little Zac wasn’t meeting physical milestones and why he seemed to be getting weaker with every month that went by.

Things then turned very serious when Zac took ill with a chest infection in November.

We were admitted to hospital, Zac was on a lot of breathing support and strong medication and we set up camp in the ward.

An army of doctors and specialists came to see Zac and on the 16th November 2016, we heard the three words that changed our lives forever: Spinal Muscular Atrophy

Zac was diagnosed with SMA type 1 and we were told this was a life limiting condition.

Zac’s prognosis was very guarded and the future was uncertain.

I felt completely numb as I tried to take in this news.  I looked at my husband – his face a picture of devastation. I looked at my perfect Zac.

I knew that our lives were changed forever and now our focus was on making the best and happiest life for Zac and his big brother who was waiting at home.

We drove home from the hospital in silence – both of us filled with a heavy heart, a sadness, fear at the uncertainty and now we had to tell our families.

There were two weeks left of November and in those two weeks we had specialists visit our house, the phone rang constantly, appointment letters arrived almost every day, equipment was delivered and we barely had time to breathe.

I remember one of the health professionals say to me “this will all settle down.”

In those two weeks me and my husband talked, cried, researched and we tried to function in our new daily life.

The days were long and dark as we tried to make sense of it all.

So, November has come around again – It’s been two years since that November and I can’t believe how far we’ve come.

We have gotten used to our new normal – I don’t think things ever settle down, I think we just get used to dealing with the everyday.

I still love November.

It’s the month that made me stronger, It’s the month that made me braver, it’s the month that made my faith unshakeable, it’s the month that led me to meet incredible people and it’s the month that started my journey to my different kind of normal.