Word on the grapevine is that World Sleep Day is on the 13th of this month.

To somebody who is so sleep deprived she’s borderline delirious, this sounds like absolute heaven.

My little boy appears to have no trouble sleeping – at the most inconvenient times.

For example, this kid seems to time his naps perfectly in sync with our speech and language appointments.

He may only be 16 months old but we still need these appointments to look at ways to teach my child who has a severe brain injury and is expected never to talk, how to communicate.

He is also the person that may one day help Jaxon to feel orally, although as each month passes I realise this is becoming increasingly unlikely.

I dread these appointments. They’re the ones we need Jaxon to be awake the most but he never is. It doesn’t matter if we do morning or afternoon appointments, you can almost guarantee in the waiting room he’ll drop off.

One theory is that he’s spent so much time in a hospital environment that he becomes so relaxed he can’t stay awake.

Another is that for the same reason he becomes so distressed that he almost switches off.

Once, on one of the many times we’ve unsuccessfully woken Jaxon, we conducted an appointment in the corridor near the door in the hope that the cold air would encourage Jaxon to wake.

We needed to try to progress from dummy dips with water to thickened liquids and we couldn’t do this with him when he was catching z’s.

He did wake and after a quick conversation about confidentially, I agreed I was happy to proceed in the least medical environment I’ve ever had an appointment in.

I’ve tried all sorts to wake Jaxon for these appointments, physiotherapy and stretches, tickling him, playing loud music, dancing around the room with him. You name it and I’ve probably tried it to no avail.

Come nighttime though it’s usually a very different story.

With Jaxon having so many hospital admissions due to recurrent chest infections, seizures and feeding issues in his short life, getting him into any kind of routine and sticking to it has been nigh on impossible.

It’s only within the past few weeks that I’ve been able to establish a bedtime that works. 8pm is the time I like Jaxon to be tucked up in bed and ready to sleep.

Tucked up he is, asleep he is not. I settle him down and head into the living room, baby monitor in hand with the sats monitor on for extra reassurance.

The majority of the time I’ll watch as he lies in bed, arms flailing around like he’s on the Big Dipper.

“Go to sleep Jaxon” I whisper into the monitor even though he can’t hear me.

As soon as he does drop off I can have a bit of time away from being Mummy which usually involves me doing all the adult jobs I haven’t had time to do during the days spent being Jaxon’s Mummy.

The small window between Jaxon being asleep and me going to bed gives me chance to catch up on washing, tidying, cleaning, sorting and all the other boring jobs that nobody enjoys.

I rarely get chance to just sit, relax, chill, SLEEP.

As soon as I go to bed you can pretty much guarantee that Jaxon will wake.

He doesn’t cry but I can hear over the monitor he either needs suctioning or he’s simply decided that 1am is the new 7am and it’s playtime.

His sats monitor will be beeping because he’s getting giddy and his heart rate will increase or his feeding pump will decide the witching hour is the perfect time to malfunction.

It’s a good job I’m a night owl and being awake at 3am doesn’t really phase me but the human body can only go so long without adequate rest.

Thankfully I have time to catch up on sleep when Jaxon is on sleepovers with his Daddy or Grandparents.

Usually though, when I am home alone, instead of getting an early night I spend the days running around doing things I find difficult to do when I have Jaxon with me like collecting medication, doing the shopping and other odd jobs.

Then come night time I lie in bed thinking about all the things I need to be doing round the flat in the short time I have before Jaxon comes home.

I rarely shut off for the evening and relax, just think about nothing other than mind numbing TV, chocolate and wine. I wish I could but I’m constantly on the go I find it extremely difficult.

Since Jaxon’s birth my ability to sleep and feel completely rested has disappeared.

I think that’s a Mum thing though. You never really sleep the same once you’ve had a baby. Despite most of my days being sponsored by caffeine I’m doing okay on such an excessive lack of sleep.

So I’m not sure what I’ll be doing on World Sleep Day, it’s unlikely I’ll be sleeping much though.

Can you imagine not having the ability to express out loud when you’re hurt, hungry, scared or frustrated?

What if you had a need, but were without the capacity for verbal speech?

That’s the stark reality that my nonverbal child faces every single day.

As her mother, it is a harsh and heartbreaking fact. If I had only one wish, it would be that she be granted to ability to speak.

When she has a stomach ache or an earache, I wish she could tell me. When something has frightened or upset her, I wish she could tell me.

When she’s thirsty, I wish she could tell me. When she’s in need of a diaper change, I wish she could tell me.

When I wonder how her day was at school, and if everyone was kind to her, how desperately I wish she could tell me.

Communication is a basic human right. Every single individual on the planet deserves to have a voice.

Fundamentally, being unable to convey needs and wants, or to independently make a choice, is an injustice.

For my child who was not given a clear, effective method of communication, it’s my job to find a way for her.

It has become a critical mission, with continuous trial and error, to unearth the approach best suited for her. I’m determined to give her a voice.

There are so many types of Augmentative and Alternative Communication (AAC) devices available today.

Researching and demonstrating various apps can make your head spin. It’s frustrating and parents want quick results.

Typically, that’s not the way it plays out. We must be patient. We must try and try again. We find that repetition is key.

Those of us without a degree in Speech-Language Pathology may struggle, learning the ins and outs of these programs.

We need a thorough understanding before we can effectively teach them to our children.

We read. We practice. We customize. We model.

In addition to the devices and apps, there are techniques combining gestures, eye gaze, signing and pointing to symbols or pictures.

When fine motor skills aren’t well developed, it’s even more daunting to help our children with limited or no speech abilities express themselves. It’s HARD work.

There are times when we feel defeated and crushed because none of it is clear-cut. At times, progress seems out of reach and nearly impossible.

However, when we finally see a glimmer of understanding; a spark of comprehension, the results are priceless.

It’s hard to describe the excitement and relief that I feel when my daughter shakes her head for “no.”

She’s nine years old and I LOVE when she is sassy with her head shaking! It’s breathtaking.

I am over the moon every time she touches a photograph of her cup when I ask her if she wants “food or drink.”

When I present her communication app, and ask her which book she’d like to read, my heart soars when she touches the picture of her most beloved story.

Sometimes, she chooses by touching the screen with her tiny nose. That is BEAUTIFUL communication.

Our communication journey will be a long, winding road.

With the assistance of wonderful educators placed along our path, and with our steadfast dedication, we will get there.

The possibilities are endless and we’ll never, ever give up.

My daughter will have a voice…it may not ever be a verbal one, but it will be loud and mighty!

A friend of ours recently gave birth to a beautiful baby girl, and, as so many things do these days, it got me thinking.

After I had Heidi, almost 5 years ago, I really struggled to be around expectant mums, or their gorgeous new arrivals.

It brought so many emotions from my own experience to the surface – of course I was happy for them, and relieved when the news came through that “mum and baby are doing well” but it was a harsh reminder of what was taken away from me and Steve.

That in turn then brought feelings of guilt that I shouldn’t be thinking that way, that this was their time, which made me feel rubbish, which then made me realise how lucky we are as some people have it much worse, which made me feel guilty again, and so the cycle continued.

But, at some point, and I can’t tell you exactly when, things changed.

I felt myself sharing the joy of baby news, without having to force anything, or take a few moments to gather myself together.

I was also able to remember my pregnancy (bloomin’ loved being pregnant!) and talk about the birth without breaking down in tears.

I clearly remember pre-Heidi, how I had it all planned out in my head (massive lessons learned there hey!).

I was going to be a chilled-out mum, with firm but fair principles. I was going to hug my little one every day and tell them how much they were loved.

I was going to have fun. I was going to bake and do crafts. I was going to cheer them on at every school event. I was going to support them in whatever they wanted to do.

I was going to bring them up to be kind. I very much wanted to be the kind of mum that my own mum was, and still is, to me.

All that changed in an instant when Heidi was taken so poorly within the first hour of being born.

My plan went out the window, and we had to start from scratch. For a long time after having Heidi, I didn’t feel like a mum at all, let alone the kind of mum I wanted to be.

I was a nurse, a physio, a therapist, an administrator, an advocate. It wasn’t what I signed up for and I was scared.

Over time though, and with the right support, we settled in to a routine.

We learned about Heidi, we worked as a team, and before we knew it we started to be happy.

It feels a bit strange saying that, as I think sometimes people look at families like ours and feel pity or wonder how we do it.

Don’t get me wrong, there can be tougher days, but there are also days where you feel your heart is full to bursting. Heidi has taught me so much.

Of course, I wish things were different for her, that she didn’t have extra challenges, but she doesn’t know any different and is such a happy and loved little girl.

She has shown me that I am exactly the kind of mum I was meant to be.

I’m Heidi’s mum, doing all the things I planned to do (sometimes just in a slightly adapted way) and I wouldn’t change that for the world.

We had a recent change in our family with my grandfather.

My grandmother decided to put him in memory care. It was the best thing for him, but it was a very difficult decision.

It got me thinking about when nursing care was brought up to me for my son.

For some it may have come as a relief to know that they could qualify nursing, but for me it was hard giving up control.

I felt as though I wasn’t a good enough mom to take care of my own son. I wasn’t sure that I needed it but our early childhood teacher explained to me that would be a good thing.

I decided to give it a shot and I am so glad I did.

It’s hard to give up control and accept help.

It’s hard to rely on someone else to take care of your child, even typical children.

Sawyer has a multitude of disabilities and it’s very scary putting his life in other’s hands.

However, now that we have had nursing for so many years I have found that it’s such a wonderful thing.

I can just be mom. That was a big “A-HA” moment for me.

I didn’t realize I was wearing the hat of nurse, physical therapist, occupational therapist, speech therapist and mom.

I didn’t even think that other parents may not have as much on their plates.

I am a lot like my grandma in the sense I am a busybody and am constantly filling my plate.

In this case, I get to just be mom. I am a different kind of mom because I am still a strong advocate for my son and I juggle many therapists, doctors and appointments but most importantly I could focus on those things and myself during the day when the nurse is with Sawyer.

We are so incredibly blessed to have gained another family member.

Sawyer’s nurse loves our family like her own and considers us family.

She checks in on her days off and I can confide in her any feelings I am having.

She is so much more than a nurse. Sawyer lights up when she walks into the room.

I have so many photos and videos of him laughing and smiling at the sound of her name.

They have so much fun together and work hard.

We call her a magician sometimes because he often does things for her that he won’t do for mom.

It can be very scary and not always easy but sometimes “yes” is the best thing you can say.

I remember vividly getting the official diagnosis of my daughter’s cerebral palsy.

It was something I had greatly prepared myself for. From the moment she entered this world we were told of the possibilities of cerebral palsy due to the extent of her injuries at birth.

I would stay up late reading through other parent’s experiences with their own children’s Cerebral Palsy.

I would read a story that was too difficult for me to envision in my own daughter, so I’d keep reading until I found an account that was easier for me to cope with.

I’ve seen Breaking Bad. The actor that plays Walt Jr. has CP, and he’s a talented actor. He gets around great. That will be my daughter. Right?

We received a relatively early diagnosis compared to most children I’ve seen. She was two months old. Most children do not get an official diagnosis until they turn two years old.

At the time I did not understand it, but in hindsight I realize that should have been a sign of the severity of our situation.

When the doctor broke the news to us we took it with very little emotion.

The countless hours spent analysing other families accounts with CP had numbed me to the reality of our situation.

We had minimized it in our head. The doctor boasted about how well we handled hearing the news, but in reality we were still in denial.

Even coming home we were still struggling to come to grasp with things.

Okay, she does not roll over, and has trouble holding her head up, but she’s a baby.

A lot of babies take a little longer to hit those milestones. Milestones is a word I have grown to loathe.

I had a small box where I had visualized my idea of what CP was. I thought about mobility issues, maybe a wheelchair, we could handle that.

I’m not minimizing those issues. This was just my head space for coping with things. I did not think about how CP affects organ function, abilities to eat orally, or communicate.

I would later find out that my daughter’s specific type of Cerebral Palsy is Spastic Quad Cerebral Palsy.

Meaning it effects most of her body. One thing I took for granted when I began this journey was the absolute uniqueness from one child to the next.

I try to show myself grace for my ignorance in the beginning. I was definitely using unhealthy coping mechanisms, but in the beginning you are just in survival mode.

I could read anecdote after anecdote, but at the end of the day everyone’s experience is different.

As time passes she is starting to become such an amazing little person.

I’m trying to focus less on the diagnosis and comparisons, and focus more on her as a unique individual.

Of course Cerebral Palsy is a major part of our lives. We are riddled with doctors, therapist, and medical equipment.

But, I’m starting to see it more as part of the building blocks that make her who she is, among countless other aspects of her life.

It will not define her, but I do attribute it to the amazingly strong and brave person she is.

I think as a mum it can often be very easy to point out your shortcomings, your failures and the times you just plain got it wrong.

Being a mother is not an easy job.

There are days when you question your every movement or word you utter, including those uttered under your breath.

There are days when you cry into your cup of tea and wonder what a hot drink tastes like without tears and snot in it! It’s incredibly rewarding but you have to go through a lot to get to that point.

I won’t lie, becoming a mum of 2/3 has been incredibly hard. The first year with Florrie and Ethan was one I wasn’t sure what I was doing and one I wasn’t sure would ever end.

Having a child with complex needs is like having a baby in a 9 year olds body. Chuck in 9 years of no sleep, hospital appointments, physio, medical emergencies and seizures, then add in a newborn baby, yeah things got tough at times.

People often say the newborn stage is the hardest. I’m not sure I entirely agree with this but that’s one for another day.

I was incredibly blessed to have an amazing baby. One who fed well and slept well.

Don’t get me wrong there were times nothing would settle her but on the whole she was a great baby.

The baby completely relies on you for their every need. They are fully dependent on you.

Ethan is still like this newborn stage at the age of nine.

The hardest thing I found having the two of them was if they both needed seeing to at the same time.

I’ve become an expert at one hand tube feeds whilst holding a baby in the other arm with a bottle. Add in number 3 and I then have no idea which one to go to first.

It kind of feels like whoever shouts the loudest gets sorted first. Inevitably one of them will always have to wait.

I’ve spent a lot of time conquering having 2 and then 3 children during the holidays or at weekends on my own due to Steve working.

It’s taken about 18 months but I think I finally have it down to an art. It’s not been an easy road, it’s pushed me mentally and physically to my limits at times.

I think it’s time to finally look back and celebrate just how far I’ve come as a mother over this time.

I have always wanted to be a mum. There are times now where I question why that has always been my dream.

Days that have broken me. Its easy to focus on that. What’s not easy is to celebrate the days that went well, the days where everyone came out smiling and I’m reminded just how far we’ve come.

The days where I am reminded just how amazing being a mother is. The days where I am incredibly bless to have 3 beautiful children.

So, this is a post to say to you all, mum’s, dad’s, carers, grandparents etc celebrate how far you’ve come, forget the bad days and focus on just how great a job you really are doing.

From one exhausted parent to another well done!

A lot of families who have children with special needs struggle mentally, emotionally, physically and financially. And people often wonder why.

A lot of times we must fight to get the things we need for our children. And that take away a lot from us.

Things aren’t given to us because we have a child with special needs.

We must go through hoops and hurdles sometimes to get what they need. And a lot of times its just us out there searching for ways even with the resources that are available to us.

People think that because our children qualify for government assistance its not hard for us, but the truth is government assistance isn’t available to everyone and everyone its available to still must fight for certain things.

We still must provide proof that what we ask for is needed for our child.

Being its more than just our child needing things there are often waiting list for things that are available to them such as therapy and waiver programs.

These lists can sometime take months and even years before their available to you. And as parent although you know this you continue to look because you know your child need these things.

In hopes that someway somehow there is another way.

That’s why I don’t mind sharing whatever I know with other families because I know how hard it can be to have fight to get the things your child need.

I share my experiences as well as my knowledge with others. No need for them to stress themselves out by researching the things that I have already.

And the parents I share with always appreciate it.

Parenting kids with special needs is a constant job for us.

We’re not only their parent but were their voice, nurse, advocate and whatever else they need us to be. We fight because its all we need.

We’re always in attack mode when it comes to them because were so use to people giving us a hard time.

But more importantly we love them enough not accept no but fight for the things they need.

Recently I sent a picture to one of my oldest friends. It was a photo of me dancing at my brother’s wedding.

A wedding that had been very difficult for me to attend for many complicated reasons.

She told me how nice it was to see me with a sparkle in my eyes. It made me think a lot.

When you become a parent, it changes you in ways you wouldn’t have imagined. It also changes your lifestyle.

A night out requires meticulous planning and hangovers are almost not worth it when you have to watch Peppa Pig at 6 am the next day. You exchange dancing and girls nights for evenings on the sofa with a baby monitor and a takeaway.

We all know that before we start, and at least from my point of view it is so worth it that I barely think about it.

I very rarely miss my life pre-children.

It is true though that your identity alters along the way and you become someone’s mother first.

And while that is the most amazing thing in the world, it is easy to forget that you were a person just by yourself before, that you are valid and important as you are.

When your child is diagnosed with a degenerative, life limiting disease, it changes you in ways that having children hadn’t. It is like being a grown up on a whole other scale. A Level Adulting.

And that change on top of the average just-having-children change can mean that identity is hard to find.

It is buried under grief, re-learning how to think about life, trying to become everything your child now needs you to be, negotiating a new an overwhelming timetable of appointments and practical responsibilities, and a whole host of other things that come with this kind of diagnosis.

It changes friendships and relationships. It can be all-consuming. It can leave fear that the person who existed before it all has disappeared.

When that photo was taken, I was having fun. Just me. It sounds like a simple thing but it isn’t.

It might sound like a selfish thing and perhaps it is. But it is also powerful. It doesn’t need to be a long time, it doesn’t need to happen often. It wasn’t about dancing or drinking cocktails.

It was about just having a few hours where I let go of the things I carry, the things that have changed me.

It was about realising that I am still in there, that my sparkle hasn’t disappeared for good, it’s just been a little dampened.

So find your sparkle again. Because it’s ok to be you sometimes.

It’s ok to put it all down for an hour or two.

There’s just a chance that it’ll feel a little lighter when you pick it up.

Every Saturday my family and I meet up for breakfast. We call it the Saturday morning breakfast club.

Sometimes Amy is with us, sometimes she is at respite for the day.

My family is generally sad when she isn’t there as they want to see her, but equally they understand my need for a break.

Often when we go for breakfast, Amy becomes distressed. She wants to be on the go all the time. She can’t eat so has no interest in sitting at a table.

She’s a child like any other, and children want to see and do things. I sometimes find it a real challenge and struggle to eat my meal or drink my coffee.

Sometimes I dissociate from conversation because I am either stressed, or distracted trying to calm Amy for long enough to eat my meal. Every time we leave the house I take her iPad, an array of toys, pain relief meds and whatever medical equipment she may need.

Sometimes a member of my family (usually my Dad, Auntie or Grandma) will take her for a little wander so I can get some space to breathe and eat my meal uninterrupted.

It also gives Amy the opportunity to regulate her mood and spend one on one time with another adult.

I am so grateful to them; however I had hoped that as she got older it would get easier and that she may be more easily settled. If anything she has become more complex over the years, and due to her size now I can’t just get her out of her chair.

When she is away from me I can’t help but see how other families go about their days.

I feel envy sometimes of those families whose children enjoy being at the table, and whilst they have their own challenges their issues are likely to change as their child matures and develops.

I saw recently a mum and daughter having a hot drink together. The mum had a coffee. The daughter had an amazing hot chocolate with all of the trimmings (cream, marshmallow, sprinkles, all that sort of wonder).

I ached when I thought back to my pregnant days – I had envisioned doing this sort of thing with Amy. A wave of guilt envelops me as I realise how much worse things could be… how lucky I am.

I acknowledge that I have some way to go in accepting that we do things differently.

So last Saturday, Amy was in respite for the day. They actually took her and a friend on an amazing day out.

We went to a local family pub, got ourselves seated with a nice hot drink. It was in that still moment I realised how intensely my body ached.

From the dressing, lifting etc. I chose at that moment to really enjoy the fact that I currently had no responsibility and that this time could be utilised to re-energise myself so I can try and be my best self for when I pick Amy up again later.

I was pulled out of my daydream by the sight of a man and child standing looking at the open fire.

The man restrained the child enough that he couldn’t get burned by the fire, but was encouraging him to take in the dancing flames and feel the warmth on such a cold day.

I don’t know if he was the child’s dad, uncle, carer, whatever… the point is I could see they had a close bond, and for the purpose of convenience I am going to assume he was the child’s father.

It was then that I noticed the child had a sensory chew toy around his neck.

It’s not the sort of thing Amy uses, but I’ve seen lots of her peers with them. They’re often children with a diagnosis of ASD, or a child that is a sensory seeker.

I wasn’t sure what this child’s diagnosis was. I watched them as they went and sat at the table in front of me. The man held the child on his lap and held him tight.

The man made eye contact with me and smiled. I smiled back.

Eventually their order came. The man had a coffee. The child had a full English breakfast.

When the food came the man placed the child in a wooden high chair. The child was bigger than my Amy.

I could see that this was a struggle, trying to guide the child’s legs through the holes. I really wanted to go and help, but at the same time remembered how independent and determined I am – maybe this man was the same.

He knew what he was doing.

I watched as he patiently cut up the meal into lots of small portions.

The child rocked and cheered and was clearly very excited. When the child was particularly noisy I watched as onlookers stared at them most likely judging and wishing the child would be quiet.

I either “ignored” the noises, or if the dad looked our way I offered a reassuring (hopefully not patronising) smile.

I wanted to tell him… you’re not alone!! If you had been here the other week you would have seen as my child flapped and thrashed and made unpredictable loud noises.

I too have felt those judgmental eyes on me. I know how hard it is just leaving the house sometimes not knowing what the day will bring.

The man spoon fed the child every mouthful.

The child would make eye contact with the man and smile. The man would warmly smile back at him.

Watching him, I felt quite emotional. They were both so happy in their own little bubble at that time. It made me think about all of the challenges we face but actually, if you take a step back and look in from the outside, our lives are filled with these small but beautiful moments.

The restaurant we were in does free refills on hot drinks (one of the reasons we go there so often!). My dad stood up to get us all some more coffee.

I quietly said to my dad “dad, can you offer the man behind you a drink?”. Initially he looked a bit confused; he hadn’t really seen any of what I had seen as he had been sitting with his back to them.

He asked the man if he would like a drink. I could see that he was in no position to get himself another drink, and probably needed and deserved it more than most!

He looked so surprised and happy and accepted the offer. A cappuccino it was.

It sounds so cheesy. But these little things are so important. We all came away from that moment so happy.

Being kind costs nothing. I felt emotional that the man hadn’t had any food for himself and that he was just downing brews for energy – this is how I operate usually (minus the feeding of my child, she’s tube fed.) and whilst I recognised that his life with his child is quite different to mine, we also had so much in common.

Once the child had finished eating the man held the child in his arms again.

He was so patient and loving with him. You could see how close their bond was and what a devoted person he is.

It makes me so happy to see people out in the community celebrating their individual diagnosis and living life their own way. In spite of the stares from strangers (hopefully not mine!), the child’s unpredictable behaviour and probably how tired he was feeling – they had a lovely time together.

The child didn’t seem to notice the stares, he noticed the amazing dedication of his dad and looked so happy and grateful.

I really wanted to go over and say hello properly. I wanted to say how lovely they both were. I wanted to tell him about Amy.

At that moment I missed her so much. I wondered where she was and if she was happy. It made me excited for the next week when we all went out as a family.

I know there will always be challenges, it may not be straight forward, she may not ever enjoy a hot chocolate with all of the trimmings, but function how we function and I couldn’t be prouder of her.

When the man and child were leaving her came over and thanked us again and said bye.

I felt proud that we had recognised the man’s needs at a time when he was indisposed. I hoped that we had added to their nice morning.

Sometimes a small gesture can make a huge difference.

On my down days I really appreciate the kindness of strangers, making the world feel like a happier, nicer place.