It is a sort of sad way to live when you think about it because really we should be cherishing every moment from the fantastic to the mundane because this is life and as far as I know we only get one attempt at it.

It is thoughts like this that often keep me up at night, along with the usual other worries.

It is thought cycles like this that can send you into a bit of an existential crisis, but they are also the thoughts that spark you to really think about why you are here and what this whole being here on earth is about.

Life has been a bit trying on me in this last year.

I hope you don’t mind me sharing, and I apologise now if you view this as an overshare – but I have wanted a second child for quite some time now.

The reasons for me are tenfold – I am an only child myself and always wonder what it would have been like to have a brother or sister to annoy, is my main reason.

The other is one a lot of you may relate to – you sort of want to make up for those things you were robbed of the day you became the parent to a disabled child.

For me, holding the child straight away and not after a painful five days watching her fight for her life, orally feeding/breast feeding. Stuff like that.

Now I don’t want anyone to translate that in a negative way at all.

What I am trying to say is I LOVE this special needs community that I am very fortunate to be a part of.

I sometimes feel very privileged that I am an exclusive member of this almost secret world.

There are some incredible people out there – specialists, children, parents, teachers, all sorts. I absolutely feel the best thing that has happened to me in life is being exposed to this whole other world.

A world where the sight of a feeding pump bag could mean a new friend for life from a simple supermarket trip.

But I also crave being part of that other world, the world where a child DOES meet those milestones.

Sometimes I find other people’s children so whimsical with their words and their eating, it is like a different but intriguing culture to me.

So basically I am greedy.

I want the best of both worlds and I feel that both children would benefit hugely from sharing these two worlds, as would I.

In fact I strongly believe the world would be a better place if we all took more time to understand the many different ways people live.

Unfortunately for me the whole second child thing wasn’t quite as easy as I had anticipated.

My pregnancy with Amy was nothing special, just a standard, good, average pregnancy.

I had no issues the whole time. It was the unexpected birth trauma that got us where we are today.

So I naively assumed my body was really good at being pregnant but sadly I suffered two miscarriages last year. So not only am I terrified of birth (I would be opting for an elective section anyway but this doesn’t make me much less scared), but it now means I am terrified of my body and pregnancy.

Next week I have an operation on my womb because the miscarriages have caused a myoma.

It isn’t a major operation but I find with each internal examination or invasive procedure I am further reminded just how fragile life is and how unfair it can sometimes be.

It is a further reminder of those two babies I won’t get to meet.

People tell you “oh well, you will get there.”, and I am sure there are many women out there who would retort “I know I will, but it doesn’t change the fact that I wanted THAT baby.”

No new baby will ever compensate for the loss of the other, it is a separate entity, a different due date, different everything.

My heart goes out to anyone struggling for a child or who has lost one or anything like that.

I had never realised I even wanted children and now listen to me!

So before you get your violins out or begin to cry, my point of this post is that we are always waiting.

Part of me thinks, “Things will be better when I have another child.” They probably won’t be.

You will either see me continue to complain about pregnancy issues, or you will see me being sad at how different two lives can be and the struggles faced, or how busy I am with two!

I think I will always have something to whinge about, I think it’s my hobby.

Recently I kept thinking about how much easier life will be when Amy is three and we qualify for a mobility car.

We did have a wheelchair access van and are continuing to try and repair it.

I am not sure it’s financially viable to keep repairing it, it is very old and unreliable but we can’t afford a new one.

It has given me a taster of how much easier it is… disassembling a very heavy wheelchair and re-assembling every time we go out is becoming a very sore issue for my back.

I don’t know who made the rule that the child must be three… I suppose someone who has never had to carry my child and feeding pump bag to a different road as parking is also so hard here – yes, even with a blue badge!

I remember last year thinking how much easier it would be when she starts nursery.

Now I am at that point – I wouldn’t say it is easier, it is just different.

I am much calmer and happier now, as is she, but I don’t think the arrival of nursery in our life was what did it.

So I guess my point is that these things are sort of arbitrary. It’s not about when the holiday is, or when you get the mobility car… it’s more about the hardships you face and how you come through them.

It was a year ago today I had that first miscarriage and whilst I do feel very sad about it, I don’t feel half as empty inside as I did that day.

Things will get better, they always do.

Don’t spend your life waiting on the next thing you think will make it easier or better… enjoy the little things.

It’s the little things like that in life… things that remind you that there is good out there and that people care, and knowing that your child has a world of people who want to make things as inclusive as possible, that make my day.

It is the reminder every night when I walk past my daughter’s room when she is fast asleep in bed that I am so thankful she is here and in my life.

Yes I do want that second child, no I don’t want that operation, but for now I am trying to just focus on those little things and eventually it should all just fall into place.

Keep plodding on everyone, life is cruel at times, but don’t get consumed by it or you will miss its beauty.

I know it’s not a huge epiphany, but it’s enough to help me get through the darker days.

Obviously my main reason is my family, but I think kindness and laughter are a key factor in that too.

One thing I would really like is if everyone who reads this could comment saying something that most recently made them laugh.

I really do feel that in times of strife it is nice to think of the happier things and maybe even laugh at ourselves.

Recently at a family gathering we reminisced over some of our clumsier moments and I was almost reduced to tears, laughing.

You would never have guessed I’d barely had any sleep the night before.

It is fair to say that the world is a pretty terrifying place right now. It really is. I have always avoided watching the news because I know how sad it can make me feel.

These days though you can’t consult social media without a torrent of news slapping you in the face.

All I am seeing is hate, war, attacks, violence and every now and then a comical picture of a cat.

It doesn’t take a lot to send me into a sad place where I dwell on things and fixate on how I can make it better.

The truth is, global issues are hard to fix, but I strongly feel that a little kindness from everyone goes a long way.

The other day I was feeling a bit miserable. I had an operation looming, the feeding pump had repeatedly woken everyone up through the night, I was so overdue with my errands and paperwork and so on.

The world was well and truly on my shoulders and I was feeling so overwhelmed.

I started preparing for the nursery run, feed change over, pack meds, check bag is packed with spare gtube button and multiple spare outfits etc.

It felt a lot like ground hog day… contend with traffic, assemble very heavy wheelchair, run in the rain to the door.

But then it happened…. just like that, an act of kindness entirely altered my day and my perception of the world!

At nursery sometimes parents buy sweets for all of the children when it is one of the child’s birthdays. My daughter is not able to eat and is fed 24 hours a day via a feeding pump into her gastrostomy.

One of the mums had bought a bottle of bubbles and attached the sweetest ever note explaining how they know Amy can’t eat sweeties and might want to blow some bubbles instead.

I was absolutely over the moon. Anything at all with the potential to make her smile is enough for me to feel totally elated. 

I rushed back to my car to shed a few joyful tears at just how thoughtful and inclusive this gesture was.

I forget sometimes that amidst the chaos of the world that actually there are a lot of people like this out there.

The people that help you lift the wheelchair off a train, the secretaries that talk to you on a human level as you plough through your phone calls, the parents that explain to their children how my child eats differently to others and helps them understand what a diverse world we live in.

If everyone could be a bit more like that imagine how great the world could be?

Sometimes it can only take one little thing to ruin your day but equally I have learned that good happens too and this is what matters most. 

They say that anxiety can be a good thing as it is a catalyst for action.

I feel that whilst my anxiety is not entirely useful and also a huge drain on me, that sometimes it does trigger the action that I need.

I have been a bit poorly recently and have as a result become very demotivated and a bit self pitying.

When you become demotivated you can slip into bad eating habits, gain weight, lose confidence, fade away, feel discouraged and lethargic.

I am trying to snap out of that and right now I feel like I have that momentum.

One thing I have learned so far in this journey is that if you don’t laugh.. you will cry.

I have also learned that very little can shock me and as a result you can develop a bit of a warped sense of humour and there is no topic that can be considered taboo.

Before motherhood and any of this I was so squeamish at the mention of poop, sick, mucous, all sorts.

Sometimes when I am reciting a story I have to really think about my audience, I have become so desensitised to things that I have to censor myself!

If you’re looking for a chuckle then feel free to picture the time I was at a disco and slipped on a rogue sausage roll on a dance floor.

The lights were switched on, the music was stopped, and the DJ asked on speakers if I was okay.

I had been fine up until that moment when my ego was bruised.

You might also enjoy hearing about the time my dad accidentally de-iced someone else’s car.

You may enjoy perusing this post whilst picturing me getting the valve wrong on a giving set and squirting medicine into my own face (this happens with a concerning regularity). 

So if you’re reading this – be kind, laugh, and always look out for sausage rolls on dance floors.

Recent events have mainly comprised of a few hospital admissions, some chest infections, seizure activity, hideous feeding issues, pH studies, EEGs, complaints to PALs chasing tests, and the usual physio, speech and language, dietician reviews, pediatric consultations, TAC meetings, seating clinics, equipment reviews occupational therapy, sensory support etc.

In addition to this, I can’t help but feel my mental health has taken a turn for the worst and I have been feverishly trying to address this issue with all of the fight that is left inside me.

I have been almost tenacious in my approach to make things better and it seems I take one step forwards and two steps back.

My health visitor has been urging me to get CBT (cognitive behavioural therapy) and the stubborn part of me has refused for months.

A few weeks ago, I finally made that appointment with the GP for a referral.

You see, my panic attacks are back. A few years ago I would have had the naïve view that panic attacks aren’t a real thing, or that perhaps the person is just attention seeking.

How wrong I was.

I was in the car with family and I felt my chest get tighter and tighter, I actually thought I was having a heart attack. I tried to steady and slow my breathing and even opened the window to let some air in.

No good. I began to hyperventilate like never before, I went dizzy, I felt sick, I thought I was dying.

Why did this happen?

It happened because we tried to have a nice family day out. Amy does NOT like days out.

She hates her wheelchair, she hates it all.

She doesn’t want to observe the world around her and becomes very dystonic and angry.

The more she cries the worse her reflux gets and she panics herself choking.

Everywhere we go we take a giant bag of toys and an iPad with us along with all the other luggage she requires and even this is rarely enough.

As we walked around the grounds of this beautiful place I couldn’t help but notice all of the other children her age running around, climbing up trees, trying out their new scooters, pointing out things that interest them.

This is foreign to me.

In spite of my best efforts, I simply cannot get her on board with these trips.

When we sat at the coffee shop I let her have her iPad and she was finally appeased (appeased. Not happy. Ugh).

I had suppressed my feelings with all of my might, seeing those other children and comparing it to how my child was crying the whole way around.

I tried to suppress the children sitting around us eating food orally, watching people walk by, finding inanimate objects fun to play with.

This is not our life. We are on a different path. Breathe.

All was well.

I had managed to drink my coffee and eat my soup.

Success.

Until I took the brakes off the wheelchair and pushed it and the iPad cascaded in slow motion onto the concrete floor beneath it.

This is our third iPad.

Why, oh why, did we not get a screen protector?

The last iPad enjoyed a trip down a dual carriageway on the roof of the car and was never found.

We don’t do very well with these sort of things.

A culmination of feeding pump issues, Amy’s constant crying, and then, the icing on the cake; the iPad breaking.

This is what set me off. The panic attack lasted about ten minutes and afterwards I cried hysterically until I could barely move.

Since then my anxiety medication has increased and I have started CBT.

I try to be mindful, I try meditation, I try to exercise (the overeating is still in full force but I am working on it!).

I feel that therapy isn’t the option for some of us.

I feel like surgery, housing issues, leaving work to be a carer, feeding issues, constant appointments, paperwork, chasing appointments, failing at being a good friend and watching relationships dwindle is taking a huge toll on me.

I recognise a lot of the same things happening with my fellow special needs parent friends.

Our world is one of chaos and uncertainty, but I must remind myself:

You could never accuse my life of not being interesting or slow paced.

There is always something happening.

You don’t get much time to dwell because you are so busy doing the next thing.

Prepping meds, distracting your child into thinking the standing frame is great, ordering tube feed supplies, rearranging appointments etc.

You learn to appreciate the lesser things in life.

Amy has recently mastered getting on and off her tummy whilst rolling.

Something I didn’t know we would ever see.

I also appreciate simple things like a quiet walk with the dog on respite day – something I could easily have taken for granted a while ago.

I try and remain in the moment; admire the flowers, smile at strangers, meet lots of other nice dogs etc.

Some relationships thrive under pressure and you also meet people like you.

I have met some truly incredible people on this journey, and I have also kept quite a few of my best friends I’ve known since school or college.

Recently I had a friend round for drinks one evening and we belly laughed in a way that I haven’t in such a long time.

Sometimes my life confuses people not on this path or makes them feel awkward, but I’m learning to adapt and so are they.

We all benefit from this.

You learn greater empathy.

I genuinely used to think panic attacks were a bit made up for attention.

NOT true.

I feel terrible that I ever thought that.

Anxiety, chronic stress and panic attacks are a very real thing.

I now feel so much more solidarity with fellow sufferers and hope that one day when I am stronger I will find a job to help others get better.

I guess it’s a bit like when people think autism is just, “bad behaviour”… these people have no idea because it isn’t part of their life and they don’t understand it.

You can never assume anything, and you can never judge someone as you can never fully know or understand their situation.

I know what has made me how I am and I am very open about it.

Trying to change is hard.

You value life so much more.

I know so many parents whose children are regular admissions into hospital.

I know parents who have lived in hospital for weeks, months and sometimes even years.

You just don’t know what others are facing.

When you walk past me alone in the street you may just think I am some girl on her way to meet friends or something.

Actually, I am the special needs mum hurrying to the shops to buy guinea pig food and enjoying getting out of the house for a few minutes.

I have a new understanding of carers and their role and the pressures they face.

I met a lady today who cares for her husband who has Alzheimer’s.

She does an amazing job, she had a lovely smile and so did he.

Smile in the face of adversity.

Life can be amazing.

Seeing them like that made me happy.

I know that they face a lot of challenges, behind closed doors there may be a lot of tears but I could see her love for him a mile off and that’s beautiful.

Can I end this piece with a little advice?

If you know someone whose life has become a little more complicated than typically expected… offer help!

For me personally, someone bringing me a pint of milk when I am struggling to get the shops… this means the world and actually makes life so much easier.

For me, a trip to the shops is a panic knowing Amy hates going out, I’m assembling the wheelchair, transferring the feeding pump and whatever else for the sake of a simple transaction.

Today for example has heightened my stress levels intensely.

I was in the car driving Amy to respite.

She was screaming, the feeding pump alarm was going off, the dog was crying, and I was stuck in terrible traffic. 

I was doing breathing exercises trying to calm myself down.

I then notice my phone had been ringing non stop/ it was Amy’s’ OT saying they had measured her for the wrong seat in seating clinic and that we would have to attend again.

I begrudgingly arranged another appointment and as I got out of the car and I dropped my phone.

It smashed to bits.

I am almost calm now – almost.

I am trying hard at the moment to be there for my friends when their kids are in hospital… take them for brews, have a rant together, have a laugh etc.

Amy’s respite hours are soon to increase and she is also due to start nursery.

I am hoping that for me this will be a turning point.

I will have more time to get things done and also time for me which will then mean I have a lot more energy for Amy.

She’s pretty full on 100% of the time but if you sing the right song or get out the right toy… that smile makes life the best thing ever.

Thank you for reading, I wish you plenty of sleep, coffee and lovely relationships.

I am now going to try and have a little nap before collecting Amy from respite.

Peace out my friends.

When your child has very complex needs and you must spend your days contending with, “the system”, it is pretty much inevitable that, at some point, you will reach either carer burnout or chronic stress.

Depression, anxiety and mental health issues in general seem to be finally getting the serious attention they deserve and I think it is absolutely crucial that we all talk about these issues and take care of each other.

Chronic stress is defined as the response to emotional pressure suffered for a prolonged period over which an individual perceives he or she has no control.

Those of you who have followed my blogs will know very well that I am at peace with Amy’s diagnosis.

This causes me very little stress. If she is happy; I am happy.

But is she happy? No. Facebook is a very unrealistic portrayal of how things really are.

The pictures are all smiles and cuteness but the reality is… you didn’t see the five minutes before or after that picture. Things are bad right now.

For us at the moment the challenge is chronic, unexplainable crying.

For over a year now I have been advised time and time again that Amy is suffering the wrath of GERD/severe reflux.

It’s true… the reflux demon does dwell within and we medicate her for this.

However, I have been adamant for a long time now that there is also another issue that needs addressing.

Be it neurological, be it neuropathic pain, be it visceral pain.

Who knows?

Certainly not I, nor any of the professionals involved in Amy’s care.

Currently it seems we are dedicating our time to distracting Amy from her crying… we are not actually making her happy.

We are diffusing a situation rather than enjoying ourselves. It is hindering her development massively that we don’t know how to help her.

Inevitably when stressed I turn to the Internet. I search for mindfulness, coping mechanisms and so on.

The Internet is so quick to tell you to cut out that thing that is making you stressed.

It tells you to eat healthily, exercise more, take more time for yourself. How on earth are we meant to fit any of that in?!

My stress recently has got to the point of my anxiety medication being doubled and me eating horrendously. My brain is screaming out for carbs and sugar – quick fixes to my lack of energy.

The result is an expanding waistline which then makes me lethargic, self conscious, and even more sad.

Until we get answers about why Amy cries how she does and why she isn’t sleeping there is no way at all I can recover. The knock on effect of this is of course that I will have no patience or energy to be the mum Amy deserves and needs me to be.

This then sends me into a guilt spiral and thinking I am not doing enough.

It is suffocating. Truly suffocating.

Our, “urgent”, housing situation has me awake a lot in the night, as do feeding issues, appointments, all sorts.

On top of this I have non-Amy related issues worrying me.

Sadly this year I have suffered two miscarriages, one of which was particularly traumatic.

Nothing can prepare you for that level of grief. To take that on in addition to everything else is soul destroying, but in the long run I know I will become more resilient and learn that some things are just not meant to be.

Someone at my work joked about my working one day a week and said, “Enjoy your six days off!”

Please.

Come and live a week in our life!

One week is physio, opportunity groups, chasing return calls, special needs events, countless phone calls and paperwork, non stop research, forever drawing up meds and changing tube feeds, pediatric visits, speech and language exercises, standing frame time, collecting and ordering prescriptions, and so much more.

I can’t quite put into words just how much of our time is taken up due to “extra needs” related things.

Things like the GP taking things off our prescription list without explanation and then the amount of calls it takes to rectify it.

Just silly things like that can take a good few hours.

A day at work is peace for me.

It is a chair, it is a hot drink, it is a pleasure.

We recently went on a long trip to a city hospital to meet with a gastroenterologist. The journey itself was the definition of stressful.

We foolishly decided to get the train there. We did not phone in advance to enquire about wheelchair access. So the trip involved an out of order lift and carrying a very heavy wheelchair up two huge flights of steps.

It involved asking people to move to a different carriage so we could fit on the train. It involved parking the wheelchair outside the toilets because people saw fit to store their luggage in the designated wheelchair bay.

If that wasn’t enough we then embarked up on a two mile uphill walk in the rain to the hospital. Amy absolutely screamed and wailed inconsolably for the entire journey.

We eventually got lost and I broke down. I broke down horribly. I cried, I wheezed, I got strong heart palpitations, I felt weak, I felt fizzy, I felt I could pass out.

But we plodded on, determined to get some answers.

I arrived in the hospital looking like a wet, boofy haired, overweight Alice Cooper.

The consultant by the way was of course stunning, just to further emphasise just what a trollop I looked!

She took one look at Amy and said, “What I am seeing right now, it’s not reflux.”

She continued; “No child can be on that amount of medication, on this type of feed, not vomit.. and have this be called reflux.” I felt a huge surge of emotions.

This beautiful lady was confirming exactly what I had been harping on and on about for over a year. I was frustrated, relieved, smug, just everything. When we left the hospital I held Amy tight and I cried “I am so sorry. I don’t know why things are like this but I promise it will get better.”

So there we go. I now must get the paediatrician on board, see a neurologist, get three tests ordered at our local city hospital to confirm it is definitely not reflux.

If it’s not reflux, then what is it?

If it is reflux, Hello, major surgery.

You see, Amy is on 24 hour pump feeds at the moment and has a failed fundo.

I am reluctant to get a redo as children with severe neurological impairments are at a higher risk of it failing again.

I don’t want to put her through that – it was a hard enough decision the first time round!

Last week I collected Amy from respite. On the drive there, I could feel myself getting more and more upset.

I had spent the whole time feverishly trying to complete necessary tasks – I had no down time whatsoever.

I felt angry and upset. I calmed myself down.

“Breathe”, I keep telling myself, “It’s okay.” I got through the doors at respite and they told me how Amy had been impossible to settle the whole time.

They said they didn’t know how I was coping.

I said I wasn’t.

I broke down.

I felt so stupid.

I hate crying in front of people.

I am sure they are used to it and they were very understanding.

But the truth is – what we are doing can be really hard.

No one wants to see their child constantly distressed and not know why.

No one wants to operate on permanent burnout.

So my tips to cope? That’s a hard one. I am not sure I am the most qualified person on telling you how to cope.

I cope with coffee. Not great I know. Lots of coffee. Copious volumes. What else.

Accepting help, talking about your issues, searching for solutions at every given chance.

I used to keep my anxiety a secret – I didn’t want people to think I was attention seeking or that I was weak.

But you know what?

Sometimes your brain simply cannot make the chemicals needed to cope with a situation and we need a little extra help.

There are people out there going through so much less than us that are suffering mental health issues, it’s a very real thing.

Life is stressful.

Every now and then, I will do a big exhale and take stock of what I have got.

I have an amazing partner, daughter, dog, family and friends.

We have love, warmth, shelter, and most importantly – hope.

This journey makes you strong, it makes you more patient, it teaches you so much.

You learn not to judge, you learn empathy and compassion.

By talking about what I have been through/am going through such as miscarriages, wheelchair issues, housing problems, chronic irritability, anxiety and so on, you soon realise you are not alone.

There is great comfort in that.

Stay strong everyone.

Don’t keep it bottled up.

Keep fighting.

Love each other.

Take care.

You will get where you need to be. Sometimes it is one step forwards two steps back, but just keep going.

First of all; sorry.

I am sure you are sick of being called mum.

You are more than just mum.

You are your own person.

Please don’t forget that. People in the street see you with the buggy/wheelchair – to them you are mum.

To the nurses in the hospital you are mum. It’s hard for them to learn every name.

To yourself and your child, you are mum.

But you are more than that.

You have your own interests, you just don’t always get the time to explore them and indulge.

You have your own identity, you have your own worth.

To one little person, you are the world.

Sometimes you feel like you are either fading away into the crowd, totally unnoticeable, not worth a second glance.

You’re just a mum going about your mumly duties.

Other times you stand out like a sore thumb – screaming unappeasable child, unkempt hair, eye bags, mucky clothes you probably wore yesterday.

You don’t look as bad as you think you look.

People aren’t watching you and judging, they are watching in admiration as you expertly attach the giving set to a feeding tube. Those people have never seen a feeding tube before.

They think you are a wizard, they are probably in awe of you and your incredible child.

That dribble on your shoulder is a medal of honour, a badge that says to everyone out there, “I am a special needs mum. I am a tube feeding pro.” (Even though last night you accidentally fed the bed and shot medicine up the wall.)

Your role is not just mum.

It is paediatrician, dietician, speech and language therapist, occupational therapist, nurse, gastroenterologist, neurologist and much more.

You work tirelessly to make sure everyone is alive and well.

But you aren’t just all of those things, you are you.

You are just like everyone else, but with some extra skills and responsibilities.

You do it so well.

When you sit down at night feeling guilty about the state of the house, counting down until the next administering of meds and preparing of feeds – you are exhausted.

You worked hard today, and yet you are on your laptop researching neurological irritability.

It’s so easy to feel guilty, to feel like you aren’t doing enough.

You are doing enough.

Okay, so the standing frame didn’t happen today – do it tomorrow.

You can’t do absolutely everything you are told to do all of the time, sometimes you do just need to go out for a brew with your mum and daughter.

Those carbs you ate today, those sugary snacks you threw down without a second thought?

Don’t beat yourself up.

You didn’t have the time or the energy; it’s a coping mechanism.

Right now you are going through a hard time and the last thing you need is to be beating yourself up about your weight.

Do what you need to do to cope.

One day when the time is right, you will get back on that health kick, you will do charity runs with your dad.

It will be amazing. You will be pushing Amy in her wheelchair because after all, you and her are a team.

You made six phone calls today.

Four went to voicemail and the other two were answered by a rude secretary who had no empathy for your situation.

Don’t feel defeated. No one understands what it is like to be you.

That secretary is clearly not having a good day, don’t take it personally.

She doesn’t know she was the 5th phone call on your list.

She doesn’t know that you too…are effectively a secretary.

You have more folders than her, more paperwork than her.

Shrug it off, wait for your return calls.

I know you are frustrated, I can see the paracetamol and anxiety medication by your bedside.

I see your bedtime tea drink in the kitchen – you really want to be able to sleep tonight.

Today you cried.

You felt helpless, you felt like today was groundhog day and you’re not sure you can get through another day.

You got through this day.

You can get  through another day.

Things won’t always be as hard as they are right now.

You don’t want to fight for equipment, for tests, for diagnoses.

You want to ask for what you need and get it.

But you know things aren’t that simple. Nothing worth having is easy.

You can’t appreciate the good times without first feeling the bad times.

The prospect of her needing more surgery keeps you awake at night.

Your friend’s child also needs surgery – you are worried for them.

You are compassionate.

Yesterday at the coffee shop you saw that child the same age as yours.

She was looking around very alert at the waiters, the lights, everything.

She was a relaxed happy little girl.

You felt a twinge inside that hurt, you know that your little girl is not that easily appeased.

To a passerby you look lazy for having the ipad on.

But the reality is you are working so much harder than a lot of parents!

You tried every toy in the bag, you charged the ipad overnight.

You are doing what you need to do to enjoy time out of the house.

You feel guilty about that pain you felt that things are harder for you and your child.

Don’t feel guilty.

What you have is unique.

No one else could understand, what makes us different makes us beautiful.

What you have?

It is beautiful, even if it doesn’t seem that way to strangers watching in on your world.

Some of your friends have disappeared from your life, relationships with people you thought were close have fizzled away.

This isn’t because you are boring, it isn’t because you’re a flake. It’s because people don’t always understand.

You are on a very different path to others and they don’t always know what to say or do.

There are only so many times you can cancel on someone before they give up.

But you know what?

The ones who matter, the ones who understand – they will stay.

And one day in the future, when things are easier, those people will get to enjoy the happy you.

People don’t deserve you at your best if they can’t be there with you for the worst.

Your other half looked tired today.

I know how he feels.

You feel like you hardly see him.

His work hours are long.

You miss him dearly.

He’s an amazing partner and an amazing dad.

You’re jealous of the time away he gets, you love your one day at work per week.

You love that drive to work in the morning with your own music on, time in your own head away from responsibility and hospital appointments.

You also feel guilty for needing that break.

Don’t feel guilty. You need this.

So what Im saying mum…Sorry, I called you mum again.

Cez. Your name is Cez.

You’re doing really well. Everything is going to be okay.

Keep drawing those meds, keep fighting for that equipment, keep making plans with friends who matter, don’t lose your identity, keep raising awareness, keep advocating for your child, keep drinking that coffee, keep taking those pills, look after yourself so you can look after her.

Smile in the face of adversity, but also cry when you need to.

This journey can be hard, but it is the most rewarding one you will ever go on.

Keeping in touch with people is extremely hard.

I’ve had colleagues joke that I, “only”, work one day a week and must spend my life enjoying coffee shop trips.

I wish this were so.

And if someone is doing that for a living – how do I apply?

This journey has made me become a very unreliable person. 

My two weeks in advance are generally always booked up with things like physio, speech and language appointments, ophthalmology, audiology, optometry, orthoptics, surgical pediatric appointments, dietician, occupational therapy, portage – you get the gist.

If this isn’t a challenge enough, add in Amy’s chronic crying – this is enough for me to either HAVE TO leave the house, or HAVE TO stay in and isolate myself from the world.

It makes me quite emotionally unstable, it can make me appear irrational, it can make me shut myself well away.

On the outside I’ll smile bravely, have a laugh, pretend all is okay.

But on the inside I’m hurting deeply and want nothing more than to hide away in bed and pretend everything is okay.

I’m sure a lot of us are like that and I know we will all be okay in time.

It can make us so unreliable, depending on even the last ten minutes that can determine how our free time is spent.

There are days when I can’t be alone just us, I need to surround myself with distractions and conversation, but equally there are days when I need my space.

I have a small group of incredibly supportive friends that never judge me for that. 

These friends understand what we are currently going through and will go out of their way to be there for us.

It’s incredible.

You really learn who matters and who to keep in your life for the good times (which are absolutely going to happen.)

Today we got news that Amy needs major surgery.

We have wondered for over a year now since her fundoplication failed.

This news has come as a bit of a relief because to finally know, but obviously we are scared.

No one wants to make the decisions we have in the last 21 months, but when you look at the bigger picture this needs to happen.

This news in itself will take a while to settle with me.

I need some thinking time and will most likely withdraw into myself a bit whilst I think about life and why it perpetually throws these curveballs at us.

Never underestimate the value of family and good friends. 

They are there for us through thick and thin, when I can barely cope, and when I am ploughing through fighting for what we need to make things okay.

Even little gestures can help our day be much easier – even just a friendly stranger helping me lift the wheelchair up some steps, for example.

I’ve had friends arrive with flowers – just because.

I’ve had friends sincerely offer to help me with Amy’s care needs.

Incredible, all just amazing.

They don’t have to do that at all, and yet they do.

I guess friendship means something different to everyone.

To me it’s someone who can listen and understand, but also include you in their life.

Someone who can provide a distraction, someone who can make you laugh.

Someone who can deal with the fact I will NOT cry in front of them!

Friendship, now, is simple. 

I have filtered out a lot of people.

People who are not willing to be part of our complicated life – and that’s fine, I wish them well.

They are missing out hugely.

I had a friend I have known since birth tell me they wanted to, “take a back seat,” on my life.

This shattered everything I had ever believed about friendship, how they could just request to disappear from your life after being such a huge part of it for such a long time.

I am still reeling from it now and it has made me a lot more cautious who I let in.

I may come across very friendly and outgoing, but this is all a front and letting people in is actually very hard for me.

My mix of friends is a great one.

Friends from when I was tiny, friends who I have met through the special needs journey who, “get it”, friends from college, friends from uni, colleagues and ex-colleagues.

A very mixed bunch all from different backgrounds and places.

It is our differences that make us beautiful, variety is the spice of life, and all that!

I want Amy to have friends with extra needs, friends who are typical who can advocate and include her.

I want so much from this world and I am glad I have the people around me to help me get it.

I love seeing our children develop their own personalities and skills whether they are children with disabilities or not.

To those friends – thank you so much.

To those who are friends with others like us – thank you so much.

You help us carry on and you keep our faith in humanity!

And we are also sorry for so openly discussing poop, stomach related issues, ranting about “the system”, drinking all your coffee, and for using long medical jargon!

We want to know that we can make it better and that everyone can be as happy as they deserve to be in life.

So, quite often, when people come across families like ours, where profound disability is involved, it is quite typical for them to want to know, “Will she ever, (insert verb here)” – and that’s fine.

But when you actually live our life and you are that parent fumbling about on the special needs journey you see things from a very different perspective.

You see I am very much at peace with Amy’s cerebral palsy diagnosis, and you know what?

I think she is at peace with it too; she doesn’t know life any other way.

But what I cannot take is the prospect that she is in pain.

Did you know that 1 in 2 people with cerebral palsy experience chronic pain?

That’s the part I cannot accept.

For us, it will either stay how it is, or we will be pleasantly surprised.

As it stands (no pun intended) she is not currently able to walk, eat, speak, or sit.

So my answer to, “Will she ever..?” is as good as your answer really – who knows?

When given Amy’s diagnosis they forgot to hand over a crystal ball.

Instead, all I heard was, “Wait and see..” – the worst three words you could possibly put together.

Not walking? That’s absolutely fine.

Who said that the recipe for a good life is being able to walk?

Don’t feel sorry for them, we all deal with the cards we are dealt and we will all find our own happiness.

I know plenty of people living fulfilling, happy and independent lives in wheelchairs.

Who said that not being able to eat is the be all and end all?

Receiving optimum nutrition via a feeding tube is a fantastic way to ensure your body is getting essential vitamins.

Since when is talking the biggest must-have of the year?

There is absolutely incredible medical technology out there to make sure people like Amy can access places and live, “normal”, lives.

Since when is quality of life defined entirely by what you can and cannot do?

For me, quality of life is being loved, having shelter, having warmth and having a warm belly.

I know there are people who say they wouldn’t change their child and the disability that they have.

It’s a thing that is very personal to each person.

Amy has opened our eyes to an amazing world we never knew existed.

For me, I can’t answer that question.

She has taught us just how amazing every little thing we do really is.

She has made us work harder, she has made us more patient, more loving, more everything.

I just wish it didn’t involve challenges for her.

I don’t want her to be frustrated, I don’t want her to feel, “different” (we’ve all had that feeling at some stage and it isn’t nice).

She has so much to offer the world and she amazes me every single day.

She is doing things now that we never ever expected – you know she is pressing buttons on toys now?!

She is now making choices with her eyes when selecting a toy.

She now communicates, “more”, vocally in a very cute grunt when she wants us to sing another song.

When we sing she now sometimes joins in with her own little tune.

Amy suffers from severe GERD (very bad reflux) – even surgery hasn’t fixed it, nor does the copious amounts of medication she receives daily.

It makes me cry with joy to see her enjoying life.

We regularly try different formulas and blends, we meet constantly with dieticians/gastroenterologists, surgeons, pediatricians, desperately seeking solutions to this rotten problem.

Amy also is afflicted with very high muscle tone due to spasticity.

Her muscles contract and tighten against her will, her brain forces her shoulders back, her legs straight and tells her to extend backwards – quite strongly in fact.

These are the things I don’t like to accept.

I worry about future surgeries to relax muscles, I worry that these feeding issues will never end.

I worry about so many things. ALL related to her comfort.

Many of you who are following our story will know about the absolute feeding hell we are going through.

When feeding issues are bad – nothing happens.

Those of you who have been through that know it is pretty much one of the worst things ever.

Development stops, sleep stops, and the days are spent trying to pass the day until bed time.

It has been like this a lot lately.

I remember when we got a standing frame and I thought it was to help her to learn to stand.

People always think that.

Actually, it’s to help build bone density as Amy has some osteopenic bones and is at risk of hip displacement.

This is one of many examples of expectation management.

It’s not about teaching her to stand – it’s about ensuring she is safe and comfortable, it is about prevention of worse things.

So, when people ask, “Will she ever walk?”

“What do I really want?

I want her to be comfortable.

I want her to be happy.

I want her to have a set of close friends one day.

I want to be one of those friends.

I want her to have the same access to things that everyone else does.

I want her to not miss out on any opportunity in life.”

Well… “I have no idea. If she does walk…that’s great… if she doesn’t? We’ll get her the coolest wheelchair going.”

“I want her to be her and not feel any pressure to do anything she doesn’t want to and to learn at her own pace.

I don’t want her to feel she has to learn anything to impress anyone or for me to brag about – it’s about her development, for her, and no one else.”

Our actual main goals in life right now are: sorting out suitable housing for adaptations, improving the wheelchair we have, resolving respite hour issues, resolving major feeding issues (maybe surgery? Maybe a GJ tube?), more work on head control and tummy time, more work on independent interactions with toys, more work on communication, prompting and anticipation skills.

But when even one of these things is achieved… for us it is monumental.

So really? Walking? Nah. It’s much much smaller steps than that.

As long as we support Amy and try giving her tastes, continue with constant physio, work hard at helping communication via speech and language and switch adaptations etc then I know we are giving her every opportunity to achieve her optimum.

No matter what the outcome for our children we will all be bursting with pride no matter what.

Amy has endured more in her 20 months that most of us will ever encounter in our whole lives and I have such a huge amount of admiration and respect for her.

I wish I had her determination, tenacity and strength.

Everyday she teaches me how to be a better person.

For all of my flaws I think one of my most troublesome is pride.

Much as I want everyone to think I can cope and that I am super-mum, I also want people to see that yes this is hard but not viewing me as a victim.

There is no balance – I want to be hailed as amazing for what I do, but I want to be empathised with (NOT pitied!!) but you know what?

I also want to be just like everyone else – I don’t always want our situation to stand out as different.

You can’t win.

So there you go.

Aspire to be like me, wish you weren’t me, and see me as you!

You see the last thing I want is anyone at all to view my caring for Amy as a burden.

I am absolutely honoured and privileged that I get to play such a huge part in my little girl’s life.

Sadly for many families like ours – a lot of our time together is robbed from us by appointments, therapies, prescriptions, phone calls, admin, tube feeding commitments etc.

We often spread ourselves so thinly that we operate on permanent burn-out mode.

This week I did a big thing.

A few months ago our team of specialists helped us get respite.

We were awarded 5 hours at a local respite centre.

It is a truly amazing place, it has a wheelchair swing, adapted equipment everywhere, themed bedrooms, a gorgeous sensory room – everything.

I would have us all move in there in an instant if I could, it’s perfect, as are the staff.

When I pick Amy up she is always in such a lovely mood – she seems genuinely delighted to see me, and me her!

I know she is in great hands there and I get very excited to see her because whilst I need that time – I also miss her sorely when she isn’t there.

We have been having respite for a couple of months now.

But this week I realised – 5 hours is simply not enough.

When respite was first mentioned it was met by feelings of horror that they thought I couldn’t cope.

But after careful consideration I realised that this would be best for all of us.

I then imagined coffees with friends, reading books, all those sorts of things – things I used to do – things I know other people still do, things I grieve and used to take for granted.

But the reality is that an hour of that time is taken up driving to and from the respite centre and the rest was collecting prescriptions, drawing up meds, changing bedding and all sorts of unpleasant but highly necessary tasks.

So the big thing I did?

I asked for help!

I explained how I wasn’t coping and how constantly rushed I was.

I explained my bad back, I explained that genuinely my personal hygiene and mental health was suffering as a result of the amount of responsibilities I now have.

So now next week we will have a couple more hours and they are going to review our current services and hopefully provide some extra support.

You know what else I realised this week?

When Amy is in respite she has a whole team of people dedicated to her well-being.

Not just me.

I am that team!

I am that person pressing buttons on toys because she can’t, I’m the one singing, I’m the one administering meds, I am the one doing nappy changes, physio, speech and language therapy, dealing with tantrums, cuddling etc.

Not only am I not a whole team of people, there is so much cool stuff there – there are bubble tubes, laser lights, projectors, other children, more toys than you can imagine!

When offered to be child-free for an hour or two inside I’m screaming “Oh, yes please!” and I’m internally planning about 100 activities I would love to do (firstly sleep. Always sleep. Then a bath, then of course all the tv shows I have missed over 18 months, eating snacks, reading books, writing blogs, texting friends, sitting in the garden etc).

But what comes out?

Usually: “No thanks, don’t worry, I’d rather us all hang out together.”

I worry that I am becoming a nuisance, or I worry that I am betraying my child by needing that time away.

Well recently I have managed to muster up: “Are you sure? That would be great,” followed closely by a huge wave of thoughts about how selfish I am and what a horrible mother I have become.

I try to banish these thoughts as part of my recent interest in mindfulness.

I am trying to learn that in order to care for Amy and be the mum I need to be that I need to look after myself.

I know that I cannot operate on burn-out mode and I have seen a really pathetic, downbeat, defeatist version of myself recently that I would really like to see the back of.

For me recently the overnight tube feeds have started to take their toll.

You know how people get a sign for their house like “rose cottage” or “sunshine terrace”?

Well, here we are, eyebag central.

We are tube-town nook, backache boulevard; you get the picture.

My parents and Phil’s mum see my exhaustion more than most others.

They know how when Amy goes to bed we are too tired to enjoy hobbies.

They know I plough on 110% mode with my necessary chores, feeling tremendous guilt that Amy is not getting the fun, relaxed, playful mummy she deserves.

So now, I will accept those offers.

I realise now – it is helping Amy socialise with others, will allow her new experiences, will help her learn some independence and when she comes home to me I will have the energy needed to be who I want to be – for her, for me, and for Phil.

So, the moral of the story?

I want to be you, I don’t want to be you, I am just like you.

If you need help – ask for it.

If you are offered help – take it.

Look after yourself.

Not looking after yourself will have a knock-on effect on everyone important to you.

Your mental health could suffer; your loved ones will suffer.

Life is far too short to run on empty.

I have not yet had my few hours extra respite, but knowing they’re there helps me plan my week, feel positive about the future, and helps me set achievable goals for that time.

I know I will get chores done – but I will also get to be me for a while too.

From the days of having crowds of doctors and nurses asking to check how my c-section scar was healing I thought, “Yep, my body, life and thoughts are an open book now”.

This is the case everyday in our appointments, therapies and phone calls where I have to state every problem we encounter, how to fix it, how we need help to fix it.

I am at the mercy of the system now.

The system can save children like my daughter at birth, but they can’t necessarily continue to support them how they should – another thing I am quickly learning.

Well, they can, but it isn’t without a big fight and perseverance on our part.

I think part of it is understaffed departments, lack of funding, and perhaps an increase in children with additional needs.

You see everything seems to be about waiting lists, grants, money, permission from the people above (who even are they?! How do I get their job?).

When being assessed for new seating and waiting 3 months with not a word from anyone, the people responsible for the aforementioned seating are probably at home, with their children…who can sit fully unassisted.

They don’t see you in a heap on the floor in your front room because your back hurts so much from carrying your deadweight child up and down the stairs.

They don’t see your child extend dangerously as you twist your back to try and prevent them bashing their head on a wall.

They don’t deal with a child’s very strong extension reflex that you could liken to a fish out of water thrashing to escape.

Seating is essential.

Equipment is essential.

It is an extension of my child – it is what she needs in order to maintain a fantastic quality of life and to prevent things such as scoliosis and hip displacement.

They don’t see you up at midnight and 4 am to do an overnight pump feed change along with meds and a nappy change so as to not entirely soak the bedding (which, inevitably happens literally everyday anyway! Hence, why we own so many cot sheets!)

They don’t see you frantically making phone calls in the twenty minutes your daughter is allowing the TV to fully occupy her.

(Even so, you appear by her constantly to wipe away dribble, help her cough, reposition her, untangle her from her giving set etc)

They don’t see your frustration when you get, “user busy”, displayed on your screen 12 times in a row, or how you leave a voicemail knowing that when they return your call you won’t be able to answer.

You set aside this phone call/admin time specifically to resolve issues and tick things off a list, awaiting a call back only contributes to your anxiety and makes your day even busier.

When you are leaving countless voicemails with pediatric secretaries you know that in a lot of cases they will go home to their, “typical”, lives not needing to acknowledge that the problems they see in clinic every 4 months is your life 24/7 – we don’t get to go home from this, there aren’t any breaks.

Our house has become an emporium of physio equipment, a warehouse of tube feeding supplies, a wonderland of sensory equipment and noisy toys.

We had to work hard to get our house in the cluttered state it is and this is how it needs to be.

You may ascertain from the tone of this post that I am feeling a little delicate, a little bit fed up, let’s be honest – burnt out.

One of the things I have always had is, “Generalised Anxiety Disorder”, and this is a special needs parents nightmare.

You see, I like to know when things will happen.

I like to be able to control the situation.

I like to have it in my diary.

I like to think of every possible outcome for everything, I like to be independent.

If things aren’t how they need to be I won’t sleep – I will be weak, dizzy, shaky, over-emotional, irrational and snappy.

This is not what I need and most certainly not what my daughter needs.

Tomorrow we have a TAC meeting (Team and Child), it will be our 4th one in Amy’s little life.

At the end of the last meeting we had come up with a brilliant list of things that needed doing and I remember feeling so relieved and pleased that action was to be taken on the many things keeping me up at night.

6 weeks on, it’s the day before the TAC meeting and not one of the needs have been met.

We need help applying for social housing – our house is simply unadaptable.

We need a bed for Amy that she won’t get stuck in and need constant re-positioning throughout the night.

We need bath straps for her bath lift that haven’t fallen apart so we can safely bathe her without hurting our backs.

We still haven’t had a ph study done to determine whether or not Amy needs major surgery.

These are just a few of the outstanding issues.

It is enough that my anxiety symptoms are through the roof.

Recently the pharmacist from our GP phoned to let me know that Amy’s melatonin would now be issued by the hospital and not them.

The reason? Can you guess? Yep. Money.

Liquid melatonin is very expensive, they made a few mistakes with it too that cost them dearly (£180 to be precise).

They convinced me that it would be beneficial to the patient and assured me there would be no blips in getting it ordered.

I have since exchanged approximately 15 phone calls with the hospital just to find out how to order it.

It has taken 2 weeks but next week I get to go and collect a 6 month supply of melatonin.

One little inquiry can easily become a project in this role.

I had a very similar experience with Amy’s prescription formula.

There are days I think, “I can’t do this anymore,” but then you give yourself a little pep talk and sip your coffee.

You tell yourself, “Come on, you have no choice, this little person needs you to fight their corner.”

Then, you get back up on your feet and continue fighting.

Be it not for rude secretaries, inefficient professionals, funding, grants, miscommunications, waiting lists – this would be the greatest job in the world!

Notice by the way how I have barely mentioned appointments?

The admin involved for our children is enough for one full-time job, and that’s without considering the appointments, being an actual parent and also being yourself.

These days, come night time we are too tired to indulge in any hobbies, we go to bed early.

It’s such a shame because the bulk of my exhaustion stems from my responsibilities involving admin.

It’s not just feed prep, drawing up meds, general chores, appointments, lifting Amy etc, it’s the mental toll it takes trying to be a secretary/chief admin of the household.

I just want to dedicate this post to everyone out there who fights every day for the basic things they are entitled to.

I also want to dedicate it to those few professionals that will work with you (not for you, not against you) and will do what they can to go out of their way and make your lives easier.

I also dedicate it to the people we do this for; our children.

Without them where would we be?

I am grateful to Amy for giving me this role (much as I whinge!) because it has taught me that if you care about something enough, you will do whatever it takes in spite of exhaustion, tears, everything.

Keep at it everyone, you’re doing great.