The Fear of the Unknown

A couple of weeks ago I had a conversation with Jaxon’s physiotherapist.

It was a discussion that I wasn’t prepared for, nor expected. It sent my head into a spin because Jaxon is only just six months old.

Yet here I was, speaking about the possibility of needing wheelchair access when we move from our tiny one bedroom flat into somewhere bigger and more suitable.

It all began when I was explaining why our flat is still somewhat unorganised.

I shouldn’t have to explain myself yet sometimes I feel like I have no choice. I’m a typical Brit. I apologise for everything.

You’re stood in my way, you don’t hear when I say excuse me so I have to squeeze past – “Sorry, thanks.”

Not hearing what somebody says because they’re mumbling or speaking too quietly – “Sorry can you repeat that?”

Paying a £7 taxi fare with a £10 note and the driver asks if I have anything smaller – “Sorry let me check, sorry no I haven’t, sorry keep the change it’s fine.”

Walking into the canteen to get lunch when there’s a group of people talking – “Sorry, I’ll just grab my lunch and I’ll be out of your way, sorry.”

As it was this time, I was apologising for the pile of clean clothes piled up on the sofa that I’d not had chance to put away because I’d been so busy and had barely been at home.

That led to me explaining further that I was in the process of filling out the forms for us to be moved as our flat just isn’t suitable for three people, one of whom comes with a great deal of medical equipment.

“Will you be looking for a ground floor flat for wheelchair access etc?” I was asked.

I nodded, of course I was planning for all eventualities. I didn’t want to move into a place that may not be suitable leading to the possibility of us having to move again in a year or two.

My brain started throwing all of these unhelpful questions at me, unhelpful because we’ve had it drummed into us that the first year or two is very much a “wait and see” journey.

Of course, it’s hard, I desperately wish I had a crystal ball so I could see what the future holds.

Also unhelpful because I needed to concentrate on the therapy that she was doing to try and add to my ever-growing list of skills that I’ve had to learn since Jaxon was born.

I could feel it bubbling.

“Say nothing,” I told myself. “You won’t like the answer!”

I couldn’t help it. It was like an uncontrollable avalanche of word vomit pouring out of me.

“Are you saying that Jaxon will never walk?” I asked firmly, desperately trying to hide my anxiety and sadness as my fears for the future once again played out in my mind.

She looked at me, then looked down at Jaxon, then back up to me. I’m not sure if she was trying to weigh up how I would react to her answer but the delay in her response told me all I needed to know.

“It’s unlikely,” she said softly.

In that moment I felt an overwhelming sense of loss once again. Loss has been a common occurrence on this journey.

Now I was feeling the loss of never watching Jaxon play football, never seeing him run in his sports day, never seeing him walk down the aisle.

As my thoughts once again ran away with me, I was interrupted.

“I suppose it depends what you mean by walking” she said.

I tried to compose myself as I started to unravel and process the thoughts that were tied up in my mind.

“Will Jaxon be confined to a wheelchair?” “Will he ever have any independence?” “Will he be okay when I’m no longer around?”

The latter being at the forefront of my anxiety. I need to know that Jaxon will be okay when I’m no longer here, when I hopefully leave this life before him.

It’s a fear that plagues me. I worry so much that if I’m not here to care for him he will be alone. I can’t bear the thought that he won’t be okay if I’m not here.

“We never confine a child to a wheelchair” she told me. “We’re always working towards a goal, whatever that goal may be!”

I felt slightly better, there is always potential for improvement if we are working towards a new goal, however small or insignificant that goal may seem to the outside world, it will likely be huge to me.

But I struggled to hide my sadness and distress.

We talked about my anxieties and I realised that my thoughts are not all that unusual. Especially in situations like this.

When parents have children with complex needs they often worry about the future for their child if they were no longer here.

Their own mortality becomes a huge concern, more than ever before.

A parents list of hopes and dreams for their child is never ending, I’m sure that any parent would firstly want to know that their child will be okay when they’re no longer around.

That is not a guarantee for any parent, even less of a guarantee for me at this stage as well as many other parents who have children with additional needs.

“He may walk with a walker. Or he may learn to use a powered wheelchair” she told me.

I appreciate that like many other things in life, independence can look very different from one person to the next.

It may be running around the house, it may be walking fine on the flat but struggling with stairs, it may be using a wheelchair for long distances, it may be using a walker to make small journeys on foot, it may be getting around solely in a powered wheelchair.

When she left, I realised that I was no more aware of what Jaxon’s future will hold than before she arrived.

I may not know what his future looks like or what his full potential may be for many many years.

Nobody can answer these questions that race around my mind. It really is just “wait and see”.

It’s painful. It’s unpleasant. It’s torture. But Jaxon will be okay, regardless of the outcome.

Because I as his mother will do absolutely everything in my power to ensure that he will be okay, whatever okay looks like.

Now, always and forever.

You Are Not Living Until You Have Kids

My dad is one of the best storytellers I have ever met. I’d like to say I inherited that from him, but his skills are not matched by many in that department.

He is also well known for his many life sayings. One story I remember him telling since as far back as I was old enough to even kind of grasp the meaning is the “you’re not living until you have kids” story.

When he was a young adult, back before him and my mom had ever really even decided to have children, an older man once told him that “you just aren’t living until you have kids.”

Although, as my Dad tells the story, he thought that man was crazy and didn’t think he really know what he was talking about.

He and mom had a great life and things were humming along just nicely.

Then a few years later my dad and mom, in fact, did have their first child, my sister. As the story goes, turns out the man wasn’t crazy at all. He was spot on. And I’ve heard the saying, “you’re not living until you have kids” my whole life because of it.

For whatever reason, whether I really believed my Dad or I just loved to hear the story, that saying has always stuck with me.

As a teenager, I liked to think of myself as wise beyond my years. But I’m sure most teenagers think that and few truly are.

Regardless, as aware and wise as a person can be at a young age, there are certain life lessons that can only be taught by experience.

Kids are one of those lessons.

Although mentally I could understand how having children could change your life completely, like my parents, I also did not really understand the full meaning behind the man’s story until our daughter was born.

From the moment I first laid eyes on our daughter, there was a feeling there I’d not known I was missing in my life.

The word joy comes to mind, but at the same time doesn’t seem like it adequately describes that initial feeling when your heart is so full you wonder if it is going to explode in your chest.

In those first moments of life, you want everything for your child.

Love. Safety. Comfort. No hurt. No pain.

You have a feeling of protection like you have never known that seems to set in immediately and comes out of nowhere.

A feeling of protection that is so strong, you would without question and without hesitation, give your own life for them. And that was just the first moments of our daughter’s life… before we ever knew she would have special needs.

When I’ve been asked what it is like to be the parent of a child with special needs, the best way for me to describe it to someone, is to tell them to imagine all of those first parental feelings you have … on steroids.

All special needs families have dealt with their share of hell at some point or another, that just goes with the territory.

Most that I know have also experienced traumatic events, some multiple times, and a lot suffer from some degree of PTSD.

Our family has certainly lived our share of these events. What tends to result from those experiences is an even more intense bond with that child and a greater appreciation for their life and your own.

There is something to be said for those parents who have sat in emergency rooms, NICUs, and PICUs.

The ones who have held their child’s hand while they lay in a hospital bed helpless.

The ones who have ridden in ambulances and watched their children medivac off to a hospital while leaving the parents behind.

The ones who have got down on their knees, with tears in their eyes, and prayed for more time or a better life for their child, for their own strength and guidance, for answers and purpose.

Many of these of feelings I wish I’d never had to experience and hope to never have to again. But there is a flip side to all that too.

You experience the good feelings just as much, if not even more, intense as you do the bad.

Those first words from a child that is non-verbal. That smile you were not sure you would ever see. The sounds of laughter you never thought possible.

Holding their head up on their own for the first time. A few steps with assistance after three years of hard work.

The joy in your child’s eyes when you break out their favorite book or sing their favorite song. These are joyous little miracles that will make your heart skip a beat.

Most parents put their all into raising their children.

Special needs parents put their all and then some. That’s not to say they are better parents by any means.

They do it because there is no other option. Children with special needs require special attention, special doctors, special therapies, special school plans.

If you are like us, you spent the early months in specialists’ offices trying to determine the best course of action.

When you thought you had something figured out, something new popped up and you started again.

You spend more one on one time with special needs children because most of them require it.

While most traditional children begin to gain independence as they get older, some children with special needs never do.

When people have joked that they’d just take my daughter home with them, I joke back and tell them they can have anything they want but her…

I’ve got too much time invested in that one.

But if I’m honest, it’s only a half-joke because the hours we have put in just to accomplish in three years what most kids accomplish by six months are too numerous to try to count.

Being given the opportunity to love and raise a child unlocks a portion of your soul you never even knew existed.

When it comes to your children, you feel with an intensity that you never knew was possible.

And that is true for both the good and the bad that comes with raising kids.

For special needs parents, I think that intensity is magnified a bit. It’s not that a parent may love a special needs child more than another child.

I simply mean that parenting a child with special needs brings awareness to a person that you don’t even recognize is missing.

For me, my Dad’s story resonates even more because our daughter does have special needs.

Now, three years into this journey, I can’t even imagine our lives any different.

I don’t know what we ever did before we had her. And she reminds me every day that we are finally living.

Why is it so Hard to Talk?

There are a lot of emotions and stresses when raising a child with disability, its good to talk about these things and get them off of your chest – so why is it so hard to do it?

My wife sometimes tries to pry out what I’m thinking and feeling as we go through a difficult situation and even when I feel like I’d like to talk, I just can’t let it go.

Maybe it makes us feel weak to talk about our struggles, I tend to think I just like to get on dealing with it rather than talk about the struggles.

As a matter of fact, I’m probably more able to write these things in this blog than I am to express them to my loved ones.

I like to carry the weight

I don’t like the thought of dumping all my baggage onto my wife or anyone else but as we know the weight of it can crush you.

We’re seeing all this mental health information which talks about discussing things and not bottling it up, it all makes sense but its not so easy to do.

I can’t let it pass my lips, I’m tired, I’m struggling, I feel abandoned and let down by those I thought would be there, I feel like I’m letting my own family down too.

I’m struggling from lots of angles but ask and I’ll say I’m good. I’m not good, I’m ruined. I guess the feeling is, nobody can do anything about it so why bother talking about it?

Robin Williams

He was one of many high-profile cases that have brought mental health and suicide to the forefront of our minds.

Of the many cases through my generation, we were particularly pained by seeing the man who made us all laugh and seemed to be constantly on top of the world, in a secret turmoil that lead to him no longer wanting to be alive.

Of course, he had a particular condition called Lewy body Dementia which had symptoms of depression but the sadness of the happiest man on earth had a big impact.

Seeing these things makes us aware of the need to express what’s going on, however, there is still a problem knowing what to do with it, to actually break the silence.

This won’t be a post where I provide you with an answer as I’m still figuring it out myself but of course there are many charities and people you and I can talk to.

I don’t know why it’s so hard to talk, I know that my longsuffering wife needs to patience of a saint to put up with me struggling and being grumpy when I can’t say why I’m grumpy.

I’m trying to talk more, I guess that’s all we can do.

When the Future Draws In…

Most diagnosis meetings we’ve had have gone a bit like this…

‘We won’t know how it will affect him so we’ll just wait and see…’

Right at the beginning, when I was around 28 weeks pregnant during a scan, Zachariah’s brain was seen to have clearly stopped developing.

There we parts missing and other parts not quite formed properly.

Termination was spoken over us too many times to count as we were told our Baby would not survive or would live a very limited life.

Once we made it very clear we were continuing with our pregnancy they began to tell us they could not tell us what life Zachariah would lead.

It is was unknown and there were lots of unpredictable outcomes. This kind of conversation was one that would continue throughout his life.

When he was born the diagnosis journey began. Every meeting, test, therapy came with something new.

First, it was he was blind.

“We will never know what Zachariah will see”

Then it was Lissencephaly

“We do not know what he will do.”

“We do not know how long he will live.”

Then came the Scoliosis

“His curve may worsen, and surgery is more likely than not, but we will just have to wait and see.”

Then somewhere amongst the chaos came the diagnosis of dislocating Hips!

Despite the early intervention of physiotherapy and equipment, Zachariah’s hips have been gradually dislocating, so much so that over the last few weeks the left hip has completely dislocated and is causing Zachariah so much distress.

After an X-Ray and consultation, it has been decided that an operation may need to happen sooner rather than later if the pain doesn’t ease.

With Zachariah being non-verbal and already a very unhappy boy when being changed, it can be challenging identifying the pain, however, the last week has been incredible pain that cannot be missed, he’s screaming and flinching.

It has been awful to witness such discomfort that I cannot sit around. I’m hoping that with a few more professional opinions we can create a plan moving forward.

I feel like our future has come too quickly. I remember his physio telling me she was concerned and had referred him, and I remember the first consultation with the Orthopaedics too well as it really wasn’t that long ago.

I remember him telling me that surgery may be a thing of the future but that is in the very far future.

why is it that when Zachariah is just short of 5 years old, we are having this conversation. What happened to the waiting the room, the observations.

It all feels like we’ve been fast forwarded… Where’s the pause button!?

Help! I can’t breathe!

It has no doubt become all too much for me, and it’s clearly too much for Zachariah.

We feel unequipped. We feel like we’ve entered such an impossible road. We feel it’s all happened so flipping fast.

One minute it all laid back and what-ifs, the next I’m witnessing my son go through something so painful and cruel.

I remember a similar, less severe panic when Zachariah suddenly declined during meal times and we desperately needed to get a Gastrostomy. I remember the anxiety about surgery and the newness of it all.

Now… Hip surgery is a whole new level, so you can just imagine my overthinking brain right now. It’s just too much!

The future can be an exciting yet scary time.

It can be unpredictable and sometimes too much to think about. I have started to learn how to manage my emotions whilst thinking about the future and tried not to dwell but focus on the possibilities.

I feel Drs have tried to guess one too many times with Zachariah and wanted to predict his future, but in the same breath, they have been quite blasé about it all with their vague explanations.

It’s very confusing and distressing. It’s much more healthy to talk about happy things, please read my next blog to hear the high and the shrieks :).

Much love,

My Daily Miracle xx

Being Aware Isn’t Enough

We wear our blue on April 2, to sanctify Autism Awareness Day.  I’m one of the many proud parents that shares photos online of the puzzle piece…

I broadcast my love for my son publicly; probably more than he appreciates during the month of April.

While I feel my gestures are sincere, I know that there is much more to be done.

Understanding and accepting individuals with Autism extends farther than our efforts made this one time of the year.

Our actions need to continue the whole year through and being AWARE just isn’t enough.

To enlighten myself and others on how we can better identify with individuals with Autism, I interviewed my kind, funny, and bright fourteen-year old son.

He also happens to be on the Autism spectrum.  I wanted a glimpse into what that means to him.

I asked him the following questions and he reciprocated thoughtfully.

1. Tell me what being on the Autism spectrum means to you?

“Not much. I don’t really feel a lot different than other people. It doesn’t mean a whole lot to me.”

2. What aspects of Autism do you find most difficult to live with?

“Sensory issues, mostly sounds, high-pitched sounds that come out of nowhere. Also, buzzing for some reason. And some paranoia here and there about various things.”

3. Tell me about the positives you experience that come along with having Autism.

“I have a good memory and I guess my music taste is unique for my age.” As he answered my questions, he was happily listening to Gold Dust Woman, by Fleetwood Mac.

4. What advice would you give a parent of a child recently diagnosed with Autism?

“Don’t worry. It’s not dangerous or anything.”

5. As a society, what can we do to better empathize and support those on the spectrum?

“That’s a tough question. I feel people on the spectrum shouldn’t really receive better or worse treatment in our society; we should be treated equally to everyone else.  I do feel that people should share their stories.  People shouldn’t make a big deal out of it.  I don’t feel the need to make it such a big part of my life.”

We spent some time talking after our “interview.”

The wisdom he imparted on me made quite a significant impact.

He may have an Autism Spectrum diagnosis, but that doesn’t define him.  He’s so much more than that.

He’s a guitar player, a big brother, a music lover, a cat enthusiast, a kind-hearted friend, and a creative writer.

As he doesn’t feel the need to place paramount focus on the label of Autism, perhaps I shouldn’t either.

From now on, I’ll work hard to empower my son, by concentrating on all the other facets that make him an individual…on all the wondrous traits that make him Tyler.

What Autism Looks Like in our House

April; autism awareness month. Autism is such a big diagnosis and such a broad spectrum, what autism looks like for one person can be completely different from what another person experiences.

This month I wanted to share what autism means for our family and what autism looks like in our house.

Autism in our house is loud: My son will sing, talk, shout, and scream all at the top of his voice.

Sometimes he isn’t even aware that he’s being loud – he zones out into his own world unaware that the rest of us can’t hear anything other than his voice.

In fact, I’m sure our whole street can hear him at times. The funny thing is he actually hates a lot of noise; he can’t focus if there’s too much background noise and he will pick up on the faintest noise that no one else can hear.

When it comes to his own noise though, loud seems to be okay!

Autism in our house is routine: my son functions best when we have a strict routine in place.

He needs to know what is happening and when. Everything in our house is carefully planned to allow plenty of warning time of what’s coming up.

My son can be lost on school holidays etc. because he doesn’t know what to be doing with himself when the routine changes.

Very often we have to plan out his tasks for him to keep him feeling safe and in control. This means if you visit our house unexpectedly you are likely to be faced with some panic from my son.

Routine works for him and if he’s happy so are the rest of us.

Autism in our house means there are meltdowns: my son will have meltdowns for various reasons; the dinner didn’t taste right, he had to wear jeans, his schedule changed, the end of the school day, he lost his measuring tape, he got really excited about something.

Melt downs can mean screaming, shouting, crying and sometimes they can be physical. In our house we use “cool down” time and sometimes we just have to ride out the storm.

If you are in our house when we are experiencing a meltdown please try to be understanding; don’t try to talk my son out of it as he cannot understand all the complex language when he’s in this heightened state.

You can help by remaining calm and letting us use our strategies until my son’s world returns to some kind of order for him.

Autism in our house means literal thinking: my son takes everything literally so we often have to be careful how we say things.

He needs clear, explicit instructions to be able to carry out a task and he can misunderstand conversations that are not clear.

If he is ignoring you or not answering your question it may be that he’s not actually picked up that you are talking to him or he may not understand what you are actually asking of him.

Autism in our house is amazing: my son’s mind works in an incredible way.

He sees the world in numbers and fascinates me with his number ability. He sees tiny little details in every day life that I would so easily miss if he didn’t point them out.

He remembers interesting facts and amazes me with the things he learns. I have learned so much from watching the way he works and he makes me laugh daily with his quirky humour.

Autism means our house is crazy busy, there’s never a dull moment and I love it. My son is my world and our house is his home.

To Emma, Love from Emsky

First of all, 15 years from now you’ll despise your name, you don’t like it much now I know but by then you’ll rarely introduce yourself as Emma, unless you absolutely have to in some sort of official capacity. It’ll either be Em, Emz or Emsky.

You’ve had a rough time so far I know but believe me your biggest challenges are yet to come.

I know you’ve had a real issue with school, I know you weren’t being awkward not wanting to be there.

You had a deep-rooted fear of school, of authority, of feeling trapped in a situation you couldn’t easily remove yourself from. Believe me, you’ll explore those issues later on and you’ll learn a lot about yourself.

Don’t be too hard on yourself; you survived those early years and you’re now trying to figure out what you want to do with your life.

Don’t get too excited though, five years from now life is going to hit a major bump in the road, it’s going to completely derail you off this path that you think you’re heading.

You want to have a nice house and car, be married and have had your first child by the time you’re 25?

Your dream life is going to remain just that; a dream.

But guess what? In 15 years time, you’ll still be here, you’ll be surviving and at times thriving.

You’ll be fighting a daily battle with your mental health, but more importantly, you’ll be fighting for your son.

Yes, you heard me correctly. You’re going to have a son.

It’s not going to be when you wanted to and it’s definitely not going to be how you’re imagining it to be right now. But you’re going to create the most amazing, beautiful, resilient little human.

When you first lay eyes on him you’ll realise that true love is real.

Let’s go back, or in this case, forward in time.

So you’ll go to college. You won’t like it though, remember the whole not liking school/authority thing? Yeah, that’s still there.

Give it a couple of months and you’ll have given it up. You’ll go to General Physics instead (don’t worry it’s nothing to do with science), it’s a training provider who offers additional support for those who maybe left high school without good grades or in your case, don’t have the confidence to go out into the big wide world and get a job.

They’ll put you in a six-week placement, only you being you will stay there for almost 18 months. They’ll help you get a permanent full-time paid job though and for a while, you’ll be happy.

You’ll spend the last couple of your teenage years acting a little recklessly.

Not too recklessly though, you won’t get into drugs or get arrested. You’ll just make some unusual choices and then look back on your life wondering what on Earth you were thinking. Don’t worry though, it happens to the best of us.

You’ll unexpectedly settle down into a relationship a lot earlier than you’re imagining right now.

Look around your close circle of friends. Yes, really. I know it’s hard to believe that you’d settle down in a romantic relationship with any of your chums but it happens.

I’ll leave that one with you though to figure out who the chosen one will be.

You’ll suffer one of your biggest losses just three months after you turn 21 years old. This will be the beginning of your, shall we say, new life?

I say new because 15 years from now you’ll be a very different person from the young lady you are now.

Somebody will even tell you that the events mentioned later in this letter will change you forever.

He will tell you that you won’t ever be the same again and he will be right.

So here is where things start to go wrong.

CJ, your cat, your best friend, your ever faithful companion since you were nine years old. I hate to tell you this but she won’t be around forever.

You don’t need me to tell you now that when the time comes for her to leave you’re going to be heartbroken. I wish I could tell you it’ll be a peaceful passing but I can’t.

She’ll leave you suddenly and unexpectedly. She’ll go without you having a chance to say goodbye.

It won’t be her time to go, she’ll be taken from you by a careless driver. You’ll cry more tears than you’ve ever cried at that point in your life.

You’ll wonder how you’ll ever recover from the pain, the grief of losing this beautiful creature.

You’ll never come to terms with it but you’ll adjust. People will tell you to get over it, she was “just a cat” – ignore them. They don’t understand.

You’ll find a way through the darkness and she won’t haunt your thoughts on a daily basis. You’ll be able to look back and think of the happier times.

You’ll smile; a tear may silently fall when you look at her picture, especially on her anniversary but you will be okay.

Now, I need you to listen to me.

Remember earlier when I mentioned the major bump in the road? Well, I say a bump, it’s more of a full on pile-up.

It’s going to hit you so hard that there’ll be days where you feel like you can no longer go on.

You’ll be plagued by suicidal thoughts and self-harm ideation on a daily basis.

You’ll spend a lot of time in the hospital. You’ll be left with scars. Physical scars that will be there for the world to see.

There will also be a million deep-rooted emotional scars that only the few who you choose to show will see.

You’ll feel as though your life is crumbling like everything is slipping away and you’re powerless to stop it.

You will lose your job. You will develop agoraphobia. You will spend weeks in a mental health unit.

You will spend six months at home without once stepping outside the front door. Following this, you won’t leave the house alone for three years.

You’ll be diagnosed with borderline personality disorder. You will become so fearful of public transport it will take you almost four years to get back on a bus after a huge panic attack affects you greatly.

You will watch friends who were once so close to you walk out of your life as you’re incapable of stopping them.

You will struggle to maintain relationships with your family including your significant other as well as your closest friends.

All within less than five years.

Are you scared yet?

Don’t be. Just bear with me.

You’ll discover strength in yourself that you never thought possible. You will find a way through the dark days with the help of your friends and family.

One thing I need you to realise and remember; those struggles, they will shape you into somebody with so much empathy and love for others.

Sometimes you’ll feel like your whole world is crumbling and you cannot do anything to stop it, but you will push on regardless because you are stronger than you believe.

You’ll go into therapy and it will bring you back from the edge. You will meet others who are Just. Like. You.

You won’t always feel so alone, you won’t always be wondering if you belong.

You will find your place and you will own it. This one particular therapy will save your life. You’ll go from strength to strength and you’ll use your heartache and experiences to help others.

You’ll look back and wonder how you ever made it through. You’ll smile with pride. You will realise you did good. You’ll see that you worked hard to get through it, even when it all seemed too difficult.

You will become free of self-harm and you will find the light at the end of the tunnel you thought for so long had gone out.

I promise.

Life will be nice for a while. I say nice because it will be a rollercoaster, some days will be amazing (like when you finally get to meet Noel Sullivan!) Some will be so dark (including losing one of your closest friends to suicide.)

You will adjust and you’ll learn to plod on regardless. You’ll find your own normal and you’ll accept your flaws as being a part of who you are. You’ll be settled in life.

At least until 2018.

Now, I don’t really want to write this to you, but you need to know what the future has it store.

At least until a quarter of the way through 2019, I can’t go much further than that at this moment in time. Sorry.

As I said earlier you’re going to become a mum to an amazing little boy.

Calm down, I know the excitement will be tearing through you at this moment in time because it’s all you’ve wanted since forever, but you need to hear me out.

It’s going to be so hard, harder than you ever imagined. Not because of dirty nappies or sleepless nights, you’ll learn to cope with them quite quickly.

Your baby is going to be born with complex needs. It’s going to be your biggest test to date.

It’s going to test every part of you and then some. Your physical and emotional well-being will be pushed beyond their limits. You will feel a huge range of emotions, some you will never have felt before your baby was born.

But your determination and strength will shine through as you face each day, each challenge, each fight head-on with your baby.

You’ll be his voice, his advocate, his nurse, his therapist, his teacher, but never ever forget amongst all of that, you will first and foremost, be his mum.

He will love you, even on the days when you feel so unloveable.

It’ll be hard but try to worry less and smile more. You will have what you always wanted albeit not how you would’ve hoped or imagined. But you will realise further down the line how lucky you are that he is here.

He’s going to be resilient, just like his mummy. Remember, you will be his world and he needs you.

So you will have to keep pushing through the difficult times, no matter how impossible a situation seems, I can almost guarantee things won’t turn out as bad as you imagine.

Stay strong, stand tall and proud, smile plenty, love always, never become complacent, accept change.

Forgive, listen, learn, be curious, be grateful, be patient, be kind. Don’t have regrets, never let anybody make you feel that you are not good enough, remember you’re not alone and more important than anything else;

Never give up.

From older, not-necessarily-wiser Emsky x

Letting My Child Find Her Voice

As a parent of a special needs child, part of our job is to be their voice.

From the time they are infants, we advocate tirelessly for them in doctors’ offices, educational meetings, and therapy appointments.

I’d gotten so used to that role that it threw me for a loop when my daughter started to get upset at a Dr. appointment about a year ago because she didn’t like the fact that I was talking about her when she was sitting right there.

It hit me like a ton of bricks.

I remember that feeling of sitting in appointments with my mother while she and the doctor had a discussion about me, and it wasn’t fun. I remember feeling confused and a little slighted, wondering why he didn’t just ask ME those questions.

So, I made a promise to myself that I would make a point to include her in the discussions during appointments in whatever way I could.

Since she is mostly nonverbal, it has been a challenge and an adjustment trying to find a balance between letting her communicate for herself, and still getting across pertinent information.

She is great with yes/no questions, but the open-ended ones are harder for her to process and answer.

Now when questions about her are directed at me, if I think she is capable of answering, I’ll redirect the question to her. Even if I don’t think she would quite know how to answer, I’ll try not to talk “over” her.

Instead, I’ll try and loop her into the conversation somehow. “I’m just telling the doctor about how well you’re doing on your medicine…remember how you take a little more now than before?”

It has made a huge difference, and I can see that she takes pride in being able to communicate; however she can.

Sometimes she is fine with letting me do the talking, but I have learned to keep a small notepad and pen on hand in case.

As she gets better and better at writing simple sentences, the more she wants to contribute to the conversation.

Many times, she wants to talk about something completely unrelated to the appointment. Many times, she just wants to contribute somehow and be heard.

At her last psychiatrist appointment, she told the doctor all about her recent trip to the Dollar Store and all the cool things she found there.

After she was done, she sat there and contentedly worked on an activity book she had brought while the doctor and I discussed her medication.

It’s definitely not easy, because the “mama bear” in me wants to just jump into the conversation sometimes.

But it’s also amazing to watch her gain that tiny bit of independence and find her voice, because she deserves to be heard.

How Can I Stop Comparing My Child?

Someone messaged me recently asking me a very difficult question.

“How can I stop comparing my child to others of the same age or even younger?”

This person has a child who has just been diagnosed with cerebral palsy at the age of 1, around the same age my son was diagnosed and is trying their best to come to terms with this diagnosis.

It’s hard, really hard and it brought back some tough memories when I thought back to how I felt when my child was that age and he had just been diagnosed.

But even before my son was diagnosed, I have very vivid memories of comparing, constantly comparing.

It almost became an obsession, everywhere I went there were little babies sitting up in a highchair or eating their lunch within ten minutes without any mess.

There were children so much younger than mine who were crawling and walking, stacking bricks and holding a crayon, the simple things you often don’t think about…

But I did, I thought about it a lot.

So when I was asked this question I didn’t even know how to answer at first, I just thought to myself “why am I being asked this question!?

I’m not the right person to ask, I compared all the time so I can’t answer this!?”

Compared. Past tense.

Then it suddenly dawned on me that I don’t compare anymore. I didn’t even realise! Something that was once an obsession is now a very distant memory, so what changed?

What stopped me comparing?

And then I remembered… My son said his first words, and then began to talk, I was told he may never do this.

That feeling that I felt is like nothing I can describe, I thought my heart could burst and it’s like nothing else mattered.

Then there was other “little” things that came, except they weren’t little – to us they were huge!

Every parent celebrates their child’s milestones but when you have a child that perhaps does something that you may have never thought possible, no matter how small it may be, then you’ll realise how much more special that is.

How much more important that is.

How could I possibly compare my son to someone else? My son has a large part of his brain that was damaged when he was without oxygen at birth – he’s a miracle really!

So for him to do ANYTHING, in my eyes is worth celebrating.

He may not be sitting up yet, he may not be able to move around but there is plenty he can do and he makes me smile every single day.

He makes me feel loved every single day and he makes me feel proud every single day.

So when someone else is celebrating their child sitting up for the first time I celebrate with them, I don’t want people feeling guilty about talking about their own child’s milestones around me because my child can’t necessarily do those things.

He is happy (as am I!) and that’s all that really matters.