I cannot profess to ever even considering becoming a poet – I know nothing of syntax, verse, iambic pentameters and such – I mean heck – my poem doesn’t even rhyme!

In fact I would go as far to say I have probably disgraced poetry and all it stands for!

Many people will have been met with the “Welcome to Holland” poem up on starting this special needs journey; and I know it can be subject that sparks many debates and unfurls a whole host of different opinions.

For me personally, I loved it. I know that others that feel very differently.

But I would like to share this with you because I think it conveys a lot of what we all go through at the start of the special needs parenting journey.

I hope it resonates with everyone.

A Poem about a very special Little Girl

Little girl – You weren’t meant to enter the world this way Little girl, how our hearts ached for you those first few weeks.

Awash in a sea of tubes, monitors and machines. You had us petrified, so anxious, so torn.

You fought hard.

You did more in those first few days than most of us would have to contend with ever in life.

You made it when they thought you wouldn’t.

Little girl – How we all cried, how we sometimes still do. Little girl, we sometimes still mourn what could have been.

Remember that day on the park, you sat on your mummy’s knee and we watched the children play?

All I could think is – will my little girl do that one day?

And then I told myself… even if she doesn’t, it’s more than okay. Because you’re here. You can feel love and happiness, and that’s what matters.

Little girl – When will all of these appointments stop?!

Little girl – You have no idea how many people are involved in your well being and care for you. This was never meant to happen and it’s hard, but we know it’s all to ensure you have the best future possible.

When people ask “how is she doing?” and “how are you coping?” I still don’t know what to say.

“She’s achieving her own milestones, she’s growing” or “I’m doing fantastically, we’re so happy” or “I cry a lot, there is a lot of pain and uncertainty in our lives”.

One day I hope it won’t be the latter.

Little girl – One day I want you to have a brother or a sister. When we have more money, more stability, when things are settled… in the distant future.

Little girl – They will adore you how we do. Mummy and Daddy worry – This world can be cruel, people judge and can be unkind.

We don’t want you to ever see that. We want it to be butterflies, flowers and smiles for you. We will do everything we can for that to be your reality.

Little girl – We try not to focus on what you cannot do. We want to celebrate what you can do.

Little girl – Remember when you learned to breathe for yourself? Remember when you first smiled? How about when you rolled on your side the other day? Remember how mummy always cries with happiness and gives you a big cuddle in excitement?

Little girl – Sometimes you are so grumpy. What did the car seat and pram ever do that was so bad?

Little girl – Will you ever be able to tell us?

So much we don’t know.

Little girl – You are our world. You keep fighting so we can.

Little girl – We love you so much.

One of my old mantras used to be to try and live in the present. It sounds very cliché but as humans we seem to be conditioned to constantly want more from life, always saying to ourselves “I can’t wait for Friday”, “I’ll be happy when this shift is over”, “I’ll be happy when the weather gets better”, “I’ll be happy when we have a better car” etc.

Yes, I am like everyone else – I always want more. But my thing now is just wanting to feel normal again.

Becoming a full time carer really can be one of the most isolating experiences of your life.

I am by nature both introvert and extrovert meaning that some days the thought of social interaction makes me shudder and I just want to hide in my bed (preferably with my other half too!) and play video games and never set foot outside.

On the same level, I equally want to be surrounded by people I love and to chat and be silly (lesser so these days).

I used to be very fond of working full time and “contributing”. My goal was to get a better/more interesting role, earn more money for nice things for my family.

Obviously that went out of the window when we were hit with the curve ball known as birth trauma!

At the moment I think what I want from life is that hunger for success that I used to have.

We all thrive on different things; we all have different hobbies and interests.

I feel that I have lost a lot of my identity and given up a lot of my hobbies and my new interest is making sure my daughter is happy. Sadly she is not happy.

At the moment she is incredibly reliant on the i-pad and even then she’s getting bored of that. She doesn’t like to be held, she doesn’t like to be in a seat, she is interested in toys but not for long (and requires me to 100% facilitate the fun), the portage workers deem her a challenge as do most who try to take care of her.

There is little respite and we are on so many waiting lists for various services.

Seeing Amy smile makes all of this worth it, even if the smiles are only fleeting right now.

It makes you feel like a failure of a mother when you can’t make them happy all of the time, you constantly worry if seizures are back, if she is in pain and so many other things on top of “typical kid” stuff such as teething and growth spurts.

Amy’s cerebral palsy is spastic quadriplegic meaning that she is unable to sit, eat, walk, crawl etc.

We work so hard everyday on physio and various other therapies and I can see her frustration when she is unable to do what she wants.

We know that Amy is in need of a fundoplication re-do as her first one failed – this means she is back on anti-reflux meds but still in considerable discomfort a lot of the time.

Another waiting list.

The exhaustion of it has recently taken its toll on me to the point I can barely get out of bed in the morning and my eyebags look like they could store all of my belongings.

Lifting Amy is starting to damage my back and I seem to be in a permanent zombie state.

The reason I talk about this is to let others in my position know that they are not alone.

If you’re anything like me you want desperately for people to understand just how taxing it is. But at the same time you really want people to admire you and see how well you are coping.

You are either pitied or admired in this role, you’re a hero or a victim.

I am not sure how I want to be viewed.

Every night when I go to bed I always without fail, dream that she has learned to sit and play with a toy, or has learned to eat or walk.

Never say never. I am cautiously optimistic but I think at this stage of the journey I am still processing it all and trying to come to terms with the future.

If those things never happen; that’s fine, providing my brain gives me the coping mechanisms I need to handle it and make sure I can make her happy.

I once signed a petition for carers to receive minimum wage instead of less than £2 per hour. I posted it onto twitter and was immediately sent abuse by a stranger claiming that I am draining the economy and that he would rather not be alive than be as disabled as my daughter.

Can you imagine my shock and disgust at this?

Old me would have blocked him and reported him – new angry me couldn’t resist fighting my corner and justifying this whole situation.

This is what I mean by wanting people to understand your situation.

This man has obviously been fortunate enough to never have needed to make some of the very difficult career choices I have had to make, and I hope that if he ever suffers a severe brain injury that someone loves him enough to become his carer.

For me now there is no “it will be better when” or “I’ll be happy when”, it’s a case of taking each day at a time and learning to accept that there are good days and bad days.

I have learned a lot through this journey so far, whilst there are lots of negatives there really are a lot of positives too.

I have met some truly amazing and inspirational people who “get it”.

I have learned who all of my real friends are.

I have learned my capacity to love and learn.

I have also learned that everyone is fighting their own battle – you just don’t know what others have been through in life and it’s so important to always be kind.

I am slowly, thanks to our health system, learning patience and tolerance.

I still work one day a week and this has been a great source of respite for me and helps me enjoy a hot drink!

I love my colleagues and am very fortunate that my work has allowed me to work on such reduced hours in a role that suits me.

I know this hasn’t been my most uplifting post, but it’s important to me to document every emotion, be open and honest, and to show others that they are not alone.

I wish you all a huge amount of the good days.

When I say guilt I certainly don’t mean anything sinister – just guilt in the sense that you often resent your lack of free time, or you sometimes may feel that you are not doing everything possible for your child.

It may be something simple like you think you look at your phone too much when you could be investing valuable bonding time with your child.

I have since learned that when your child is diagnosed with something like cerebral palsy that this guilt is magnified tenfold.

The variety of ways in which this guilt can manifest itself is quite astounding…for me I get this on loop (and I am sure that many others in this position are the same from what I have discussed with fellow SN parents).

Here are a few examples:

– “Am I doing enough therapies? Should we be doing more physio? Is she going in the standing frame enough?

– “Am I researching enough alternative therapies? Other mums seem to be trialling a lot of things I have barely even googled”

(On a similar note) “Am I trying to hard to look for other therapies? I don’t want people to think I’m trying to ‘fix’ her, I just want what’s best for her”

– “Am I doing enough ‘typical’ mum stuff like playing games and singing?

What if all these hospital visits and appointments and exercises etc are too much and I’m hindering her learning about the world around her?”

– “Oh my gosh I need a break. My back is killing, I’ve had no me time, I wish someone would take her for a few hours”

This then turns into horrified guilt for not wanting your child with you every waking moment!

(Having children is of course synonymous with always being exhausted and wanting a break!)

– “Do I let her watch too much TV?” – The TV is barely off in our house, and when we are out the ipad comes with us.

At the moment we hope it is a phase/behavioural or sensory issue and that eventually we’ll come to an understanding with it!

This is a constant guilt for me.

– Every appointment where I discuss Amy’s irritable and difficult behaviour I have this sinking sore feeling that I am being a bad advocate for her and hope that she understands I am just trying to improve the situation, not talk her down.

One of the first things to happen when you arrive in this strange world of cerebral palsy and special needs parenting is that specialists very much like to visit you at home… and if they are not at your home they are expecting you in clinic, writing to you, phoning you, and indeed appearing to you in your subconscious mind as you sleep.

The onslaught of appointments can sometimes be unrelenting but we persevere, we tell ourselves “this is essential for the development and well being of my child”.

At the same time there is a little voice in the back of my head saying “with each foot through that door you are allowing your child to have a life very different from that of ‘typical kids’

… why not just cancel this weeks’ appointments and go to the park?”

There are the dangerous guilts too where you think too far into the future and scare yourself.

There are the dangerous ones where you wonder if you had done something differently would things be the same. Stop these. If you do this – stop!

It is so unhelpful and damaging that I am learning now to acknowledge my worries but then put them back away where they belong.

So as you can probably ascertain – It is quite draining living in my head sometimes.

I know there will be plenty of others in this constant cycle of worry and guilt – I am told it is perfectly normal and at least shows that you are always thinking about what is best for your child.

If I were to give any advice to anyone in the same situation I would advise to make lots of lists – All of your worries, all of your concerns, everything you want to google and research, everything you want to ask in your appointments that week.

Just try to be as organised as you can and push these little niggling concerns to the back of your mind.

It’s okay to feel guilt – You have taken on a lot more than you originally expected to sign up for.

Yes it’s hard work, but it’s so rewarding. It’s okay sometimes to have a break from it all and go to the park in favour of physio.

Equally it’s also fine to leave your child with a grandparent whilst you catch up on chores or have some “you” time.

It’s so difficult to find the balance and ensure you are definitely doing the right thing, but trust me – you are.

I was told that the appointments would die down, we would accept what happened a little better and we’d have time to digest what had happened before we were plunged into this crazy world of cerebral palsy and tube feeding.

The intensity of raw emotion is something that I don’t think many people will experience in their lifetime.

This time last year I was full term pregnant and desperately hoping for my little bundle of joy to arrive soon.

You have these idyllic images in your head of baking together, painting together, going on walks, those first words, those first steps etc.

I became so impatient in my pregnancy as the discomfort grew.

I had a sweep and was due another but my waters broke.

Next thing the contractions started and we rushed to the local hospital.

The heartbeat slowed down and in the end I was rushed for an emergency c-section.

It took 8 minutes to bring our little girl back to life and then she was rushed to the city hospital for cooling treatment as she had sustained a severe brain injury.

We were told she may not make it through the night and that if she did she would be a “total vegetable”.

We never gave up hope, not at all. As the weeks went by our little girl grew stronger.

By this point we were tube feeding experts and were learning as much as we could to facilitate getting her home faster.

Eventually she was home with us and we were still in a deep state of trauma from what had happened.

The trauma of the past, the difficult present, and the uncertain future.

Every professional through our door was a well meaning but painful reminder of the severity of the situation.

We learned how to put on brave faces and how to get by on almost no sleep.

As time went on, surgeries happened, hundreds of hospital appointments and home visits the routine started to set.

You become sort of numb to it all but every now and then something will just rise on up out of nowhere and smack you in the face and it’s “Boom. Feeding issues. Boom. Mobility issues. Boom. Money issues” etc.

I genuinely think the first year will indeed be our hardest.

The first Birthday will be full of joy, gratitude, grief, anxiety, hope, anger, celebration, sadness and so much more.

A nurse said to us at the start there will be good days and bad days. I can see that today is a bad day, but just wait for tomorrow and it’ll be okay.

Our appointments are actually on the increase as we are planning to learn sign language, attend messy play to help with feeding issues, constant dietitian appointments for g-tube related feeding issues, physio (soon to be group physio) and various other things.

I am learning to enjoy the appointments now and to view them as giving our daughter the best opportunity possible to achieve her full potential.

I love our specialists, they are all genuinely dedicated to helping us and can all see how full of promise our bright little girl is.

For anyone earlier into the journey than myself – A few things I wish I had known back start.

Your baby is so tiny right now… they don’t stay that way long… whilst this is a difficult time do enjoy every nice part of this that you possibly can.

Accept help – you are not weak for needing help. If you are struggling mentally then go to a doctor – you are not weak… your brain might not be releasing the chemicals you need to cope with this very unexpected and trying situation.

Stay strong, rest as much as you can (easier said than done).

A diagnosis does not define your child, your child’s “limitations” are merely challenges, it does not reflect your child’s amazing personality, eagerness to learn, and cute traits.

For anyone further into the journey than us – continue being you, and being a huge inspiration for us at the start of this.

Happy Birthday to our amazing Amy-Rose.

You have been through more in your first 12 months than most of us have in our entire lives and you are our world.

I’d like to take this opportunity to send out a massive thank you to absolutely everyone who has supported us in this last year.

To friends and family that have been there for the tears, but also been there for the amazing parts.

I remember when I was pregnant I joined one of those pregnancy forums.

I remember being surprised by how much people worried about every little flinch or every remote lack of movement.

What I remember most was being able to log on and ask questions that your doctor or midwife may not be available to answer at the time you want to know.

I spoke to a lady on there who was a few months behind me in her pregnancy – then the birth trauma occurred and I disappeared from the forum all together.

She found me on Facebook and had been following my daughter’s page for a while.

It turns out she had an almost exact birth trauma as myself and as a thank you for being so supportive she sent me her second hand I-pad.

I was absolutely overwhelmed by the kindness shown to me by this wonderful family in Scotland of whom I have never met in real life.

There have been numerous occasions where a rash has appeared I didn’t like the look of, or Amy has tolerated a feed unexpectedly, or the feeding pump has decided to make an unexpected error at me… or even just a silly question that I would feel daft asking a doctor has popped into my head… all situations where I have been able to log onto the relevant forum and get instant answers from not doctors, not nurses… but actual people living this day in and day out.

I don’t know how I would have got through this year had it not been for the various forums on Facebook.

Nor would I know about the extensive range of equipment and therapies out there.

There have been times when I approached professionals about a medication we wanted to trial but had only been listened to once providing a case study to prove my reasons for wanting the trial. When we started Amy on the blended diet through her gastrostomy it was initially met with a hint of disapproval from our team of specialists. It was only when I did thorough research and discussed the issue with other parents in the same position that I decided to collate all of the information and put it to paper. Once this was all printed out they were delighted with what we were doing and very impressed with what we set out to achieve.

Being a special needs parent can be incredibly isolating.

For me personally my mood can change almost by the minute.

You can feel stress, happiness, anxiety, fatigue, adrenaline, joy, grief and a whole multitude of emotions and when there are times you feel friends and family may not understand you always know you have this extra extended family out there that will totally get what you are going through.

They will share tears with you, they will laugh with you, they are always there as part of your journey.

On the same level I find that Facebook is a fantastic platform to show your loved ones and peers what you are going through and to gain support from them.

I have been amazed by the generosity and kindness of people I rarely even see much in real life. The amount of gifts, fundraising and just well wishes that we get is truly heart warming.

Ironically I must conclude this piece by returning to the feeding pump to figure out why it is beeping at me…either that or it is going out of the window.

There will be certain phrases people say that will never ever leave you.

I will always remember the following from our paediatrician: “Amy is a little girl that will face significant mobility issues and will have many challenges ahead of her. BUT think of how beamingly proud you’ll be when you see her using a standing frame for the first time.”

Now just think about that.

Imagine… I had set foot into the hospital that day naively expecting to be told that everything was going swimmingly and that we were doing a fantastic job.

To be told your daughter will need a standing frame is a huge shock when you weren’t even remotely expecting it.

I was then met with the phrase “spastic quadriplegic cerebral palsy”.

It was like a slap to the face; one of such severe magnitude that I barely even reacted. I expected to cry, scream or just run… but I sat there and just accepted it.

For months I had been saying to Phil “I’m so glad she doesn’t have cerebral palsy… a lot of kids that suffered Amy’s birth trauma end up with that. We are so lucky”.

Perhaps on some sub conscious level I knew it was the inevitable outcome.

I wanted the ground to swallow me up. I wanted to run away.

I wanted to go to the highest mountain and scream until I was drained of energy and could scream no more.

I wanted this all to go away. I wanted to protect my child. I wanted her to face no challenges.

The prospect of a standing frame had never even entered my mind. I think at that point in our journey with Amy being 6 months old, I sort of expected just a slight delay in her progress. Naïve I know!

Then as months went by it became more and more obvious that these challenges we are facing are here for the long haul.

I remember coming home and collapsing in the doorway and just crying the second I could shut the world out.

I spent the afternoon tube feeding a very refluxy and angry little baby and considering how I was going to tell Phil about the diagnosis. I waited until he had finished his tea.

I could barely get the words out. I distinctly remember where we were sat and how he reacted.

That was a sad night.

He took the next day off work so we could just soak in what we had been told.

It has been over 6 months since that original news… and the standing frame arrived today!!

Amy has her little shoes at the ready and we are very excited for Thursday when she tries it for the first time with our fantastic physio.

Our doctor was right… I WILL be beaming with pride even though I do suspect she will protest, shout and eventually have a face that resembles a beetroot.

We have learned to celebrate EVERY achievement and when we look back we realise just how incredibly far our little girl has come.

There are good days and bad days.

There are days when I am super mum and I will take on the world for my little girl and embrace every therapy going whilst simultaneously doing “normal mum” stuff.

Equally there are also days when I really need my friends and family or I just need to be alone and thoughtful.

There are the days where I want to cry, the days I feel cheated, fatigued, worried, destroyed etc… But it passes!

Seeing the smile on Amy’s face makes it all okay. I am so glad they told us about Amy’s cerebral palsy as early as they did as I use it as a positive.

I know about so many alternative therapies, I know about how our different therapies are helping her achieve her full potential, and I know of the challenges ahead.

The best part is being able to network with other parents in a similar situation and share tips, seek advice and sometimes just have a good whinge about it all.

A good friend of mine once said “quality of life is not defined by ability” it is defined by being loved and being able to love.

We definitely have that and that’s more important than any diagnosis.

It’s amazing what you can learn and how quickly once you are plunged (no pun intended) into this strange world of tube feeding.

Within weeks we were able to re-pass Amy’s NG tube, we would spend our days cutting up duoderm and reapplying it to her face; we would spend time researching good creams to use to prevent the blistering on her cheeks.

It seemed to me an amusing right of passage that all tube feeding parents WILL accidentally feed the carpet or the wall at least 5 times per week.

Equally it was inevitable that you could leave a g-tube clamp open and give the cot a nice pump feed of formula… totally immersing your poor sleeping child in a huge puddle of milk!

Indeed an unexpected amount of slapstick comedy entered our lives as we began to tube feed.

In October Amy had gastrostomy and fundoplication surgery.

This was not a decision we took lightly but we knew it would be best for our little girl who had suffered terribly with gastro oesophageal reflux disease in spite of the copious quantities of anti reflux medication she was on.

Almost overnight she turned from a very irritable and inconsolable baby into a happy, interactive, interested, and relaxed, happy little girl.

It was like a dream come true, all those months of worrying we were doing something wrong seemed to diminish as we settled into this new world of easy living!

It soon became apparent that Amy couldn’t tolerate pump feeds very well.

We found ourselves very isolated with 10-12 hours of constant pump feeding per day and even then she would retch and need a lot of venting.

It was then that the wonder of Facebook introduced me to some forums about “blended diet”.

Before we knew it we had been bought an expensive blender by my parents, and we had a huge base recipe packed full of high calorie but wonderful foods for our daughter.

A kind lady spoke to me on the phone at length about how they did blended diet for their daughter and I was so anxious entering this new world of blended feeding!

I bought some books and read a lot of case studies to ensure Amy’s safety was held paramount.

The blended diet went so well for us, it gave us our lives back and we even got our lovely dietician on board!

Initially I was nervous as I have heard of parents get into altercations with their professionals about the blended diet as it is not currently NHS approved.

For us it was an obvious choice – through careful research and lots of guidance from others we had made it so Amy retched less, got REAL nutrition and not just chemicals, and more importantly… actually gain weight!

Sadly Amy’s fundo came loose when we were advised to try her on milk thickener and this caused her to vomit. We are currently awaiting a surgical review and have had to reduce the blended feeds a little.

I know a lot of people are discouraged from doing the blended diet but only you know your child and you know what is best.

I am so glad we listened to and followed our instincts and continue to fight for what is right for our little girl.

We are also very fortunate that we have such a dedicated and supportive group of specialists backing our decision. It has not been easy adjusting to life of no oral feeding.

Sometimes I do get very sad that we have been denied such a basic part of raising a child… the bribes of biscuits for peace, prizing toys out of your childs mouth, cleaning up thrown food from everywhere.

Whilst pregnant I constantly found myself thinking of breast feeding and eventually baking with my child and being cheeky and eating cakes together!

I realise now eating is not the be all and end all… We hope that one day Amy will be able to eat orally and work hard with our speech and language therapist to try and make this happen.

We are slowly but surely training up various family members so we can get a little extra support and everyone is doing fantastically.

But at the same time, our little girl is growing into a beautiful little monster and that’s all you can ask for.

We are so incredibly proud of our brave daughter for enduring so much pain and so many challenges, she is truly an inspiration to us all.