I would love nothing more than to one day board a plane and take our little girl somewhere incredible. But with that comes so much planning.

I have seen a lot of parents like us in forums reaching out for assurance and advice on holidaying.

Getting permission to take various medications on board, working out what equipment can come and if you need to do paperwork for this, paying for insurance for your child with complex needs and so on.

I am someone who has to plan a trip to the supermarket like a military operation these days.

Will we be there long? Do I need to pack meds? Is there a space to change there? If so must pack spare outfits. Do we need toys and ipad to qualm any potential meltdowns?

Will I be able to fit the shopping in the wheelchair hood or should I ring ahead and make sure the firefly trolley is available? And so on.

Our first holiday was a UK one. I figured it was good practice to see how we all cope out of our house but without being too far away.

We went to Blackpool which is only an hour or two drive away.

We got an adapted caravan and packed enough for 4 days to survive a month.

I learned a lot from the experience. The main thing we learned is that sometimes “disabled access” or “wheelchair friendly” does not always mean what I want it to mean.

For example yes, the caravan (or cabin as I was mocked for calling it) had a fantastic wheelchair ramp and a wide doorway to enter. But really that was where the convenience ended.

Amy has one of those big hospital style beds, the ones with padded sides the whole way round and a remote control for height and angle adjustment.

Here we had to squash the provided beds apart and lay down an inflatable bed with sides. Dressing her was hard work as it wasn’t at the right height and oh wow, the back pain.

She wasn’t as comfy but at least she was safe. Once again we were “making do” and making the most of what we had.

Excited as I was to be on holiday seeing the botches you often have to make to even just have your child be in bed can be a sore reminder of the challenges you face.

It makes you think of in a few years time when she is much heavier. We can’t “make do” without hoist facilities and level access dressing facilities.

The wet room was only okay because we took our firefly splashy with us. Without this the poor girl would be lay on the floor. How dangerous is that!?

So I think what I’m saying is… I need to ask more questions when planning something.

Such as “when you say full wheelchair access/adapted caravan… will my child be able to sleep safely and be clean and be dressed with relative ease?”

I know those places exist, I just need to do more research next time. Planning is hard, the more I need to plan the more I have to look at what could go wrong.

The more you look at what can go wrong the more you feed the anxiety dragon. It is a self perpetuating cycle designed to frazzle you and keep you awake at night.

It can prevent you from your primary purpose – enjoying yourself with your family!

I loved the freedom. I loved not having copious amounts of washing to do, copious amounts of appointments, numerous phone calls and so on.

There was definitely a peaceful element of the trip that did refresh my outlook on life. I could see that yes, we can go on holiday and this is possible.

I didn’t love setting the fire alarm off every time I made toast.

The days out were fantastic.

We went to an indoor lights attraction (called illuminasia – if you are ever in Blackpool this is awesome for visually impaired children and also has wheelchair access).

We visited the zoo, the pleasure beach, the sealife centre. All sorts.

Amy took it all in her stride, she loved watching the sea. It was a great way to see how far she has come.

Whilst there were many zoo themed outbursts of rage… there were also many times where she was interested in what was happening around her.

If we had tried to do this two years ago it would not have been possible. She would have just screamed and cried the whole time.

The night time was a no no for going out and this did make me sad. So many families going to the club area and the children got to dance and have entertainment.

There were hair braids, face paints, trampolines, all sorts. I hate these little reminders of how different our lives are.

I hate the thought of her being sat in her wheelchair watching others and not being able to say “I want to do that”. We include her in every possible activity but often she doesn’t want to or gets upset.

So we retired early each night to our little caravan.

We went with friends. One of Amy’s school friends who also has quad cp. Unfortunately she became suddenly very poorly and had to go to hospital. She missed out on the whole holiday.

Another sad reminder that sometimes you can plan and plan and plan, and life can still throw you a curve ball.

Thankfully Mia is much better now and we hope to still visit illuminasia with her one day.

Our next plan is another UK holiday as we were lucky enough to be awarded some family fund vouchers towards a holiday.

If you haven’t applied to family fund yet I implore you to. You deserve it. I wish we had done it sooner.

Money doesn’t get given towards holidays in life when you gave up work to be a carer – please do claim what you are entitled to.

My plan after this? Disneyland Paris. After that? Hopefully a beach holiday.

I also want to thank all of the other families out there who answered my many questions on how to go on holiday! Without these insights we would have struggled.

There is a lot of solidarity and kindness when it comes to parents who have been doing this for years and years before us.

I love our community, and I love the beach.

I am generally a happy person, not because I find myself in happy circumstances, but because I choose to be happy.

But, stubbornly positive though I am, even I have my vulnerabilities.

The following post was prompted by a particularly rough weekend, in which the past reared its rose-tinted head and reminded both me and my husband that not only were our lives once completely different, they were once completely separate: that we were once with very different people doing very different things.

At any given time in our lives then either one of us might have faced a sliding-doors moment, in which we could have taken an alternative exit to another future altogether.

I began to wonder whether my husband wished he had gone another way instead.

My husband is a practical man.

He is not particularly sentimental, and not in the least materialistic – he has no interest in acquiring things beyond those which are immediately necessary or useful to fulfilling the basic needs of daily life.

What do you give a man like this as a Father’s Day gift?

There is, perhaps, one thing that he might crave. It’s not an object I could gift-wrap. It’s not something he would ever ask for, or even openly admit to wanting.

I am the only person who could give it to him, and I would, if I had the courage.

I would give him Freedom.

Yes, you heard me right, I would set him free.

I would open the door of the legally-binding cage of marriage, unfasten the cumbersome tether of duty, and let him fly away.

I’d set him free to find the thing all his mates have; the one thing they had as kids that he might have envied; the one thing I can’t give him – the peace-of-mind of a normal, easy, family life.

I’d set him free to find a strong, independent, capable woman.

One with a job title he could be proud of in front of his mates and colleagues: who amazes everyone she knows by finding enough hours in the day to work full-time and manage the house and kids to perfection and chair the school PTFA, and still has the energy to keep herself in shape at the gym.

A woman who is always a fascinating and supportive companion: a woman who makes him laugh and is his best friend, instead of a dead weight around his neck.

I’d set him free to go and find a life where he could go off with his mates to the pub, a gig, or a boys’ weekend, without feeling that he must hurry back to help his wife cope with a child whose delayed development means that he does not understand why he must cooperate when he doesn’t want to, but is so big that his mother can’t lift him when it becomes imperative that he move from A to B.

I’d set him free to find a life where he’d be able to drop his kids on any one of several babysitters at short notice, and go off for a night out, a weekend away or even a child-free holiday.

I’d set him free to be able to relax and enjoy a meal in a restaurant with family and friends and not have to worry that his child, who was the embodiment of charm when he entered the restaurant, will suddenly metamorphose into a spitting, food-throwing fury because of some infinitesimal change in the atmosphere of the room.

I’d set him free to be able to enjoy a kickabout in the park, kite-flying on the field, or a just ramble in the woods without having to worry that his child may suddenly run off, or drop to the floor and refuse to move.

I’d set him free from worry about the future, whether that’s thirty years into the future, when we’re no longer here to look after our son, or thirty minutes hence, when he has to leave the relatively peaceful and orderly world of work and return to whatever is awaiting him at home.

I’d set him free to allow him to observe for himself that I could manage on my own, to prove to him that I could and would find a way around our difficulties, and however unorthodox or ‘creative’ my solutions were, they would work in the long run.

Most of all, I would set him free to see if he would come back.

As Father’s Day approaches, I couldn’t help but think of those men who signed up to become a daddy but became far more than a ‘typical’ daddy.

The Special Daddy.

His strength knows no bounds,

His tears fall silently when no one’s around,

He has to be strong he’s reminded,

By televisions, adverts; however misguided.

 

He asks the hard questions,

And demands to be answered,

In a world where he’s often ignored,

Daddy’s can be seen but not heard.

 

He cleans his fair share of vomit & poop,

Administers the medicine too,

He cleans the peg & can loop the tube,

And knows which therapies are due or in lieu.

 

He goes to an office to work his everyday job,

He comes home often, only to pull a night shift,

A meltdown, a blowout & dodging slaps to his gob,

He’ll wait for a kiss & a cuddle, knowing it’s a gift.

 

He’ll often be the one to cook the dinner,

While being the clown, the juggler and entertainer,

He can fill our home with laughter,

And certainly makes mothers duties lighter, thereafter.

 

Yes; he’s quietly in the trenches,

Facing all the inequality, ignorances and unfairness,

His shoulders are broader than most,

For his are to carry the things parents fear the most.

 

He’s often asked how his wife does it,

Pride will beam as he sings her praises,

The truth of it is, our darling daddies,

Without you all this would fall to pieces.

 

You’re the backbone,

The soft encourager, The strong beholder,

The great embracer,

The one that keeps the family ticking over.

 

You’re the one that whispers late at night,

Tomorrow will be a better day, my dear wife.

Below are a few of those things….

I never thought;

I’d still be checking my son’s breathing; remember when you’ve a new baby and you check to see if they are breathing? I still do that with my first born son, Ethan.

I never thought;

I’d still be cleaning bums and using sudocrem; especially when my son is fifteen.

I never thought;

The nappy rashes wouldn’t end until they told me he had Hunter Syndrome.

I never thought;

I would have a terminally ill child, does anyone?

I never thought;

I would place a camera in my teenager’s bedroom, to ensure he is sleeping and safely in his bed.

I never thought;

I would sit with doctors and teach them all about the syndrome which my son lives with.

I never thought;

I’d swap a buggy for a wheelchair.

I never thought;

I would be signing consent forms about what can happen with a ‘simple’, ‘routine’ procedure due to his narrow airway.

I never thought;

My son would have meltdowns, let alone violent ones.

I never thought;

I would be able to cope with such meltdowns.

I never thought;

I would be buying adapted this and adapted that…

I never thought;

I’d be blending foods, making special shakes, adding thickener to what my son eats and drinks.

I never thought;

I would know what a feeding tube was, let alone how to clean it, use it and even turn it.

I never thought;

I would know what all these goddamn letters stand for ADHD, OT, SL&T, ABA, GDD, AFO’s, ADD…

I never thought;

I’d know what it’s like to have strangers stare at my son and pass comments about him.

I never thought;

I would get to the stage where I would stare back or loudly ask them what they have said!

I never thought;

I would be ‘that’ mammy, the one that knows all the medical jargon; which medications do what and be able to understand a medical chart.

I never thought;

I would spend years trying to understand the ‘system’ and how to apply for supports my son needs.

I never thought;

I would spend years fighting that very same ‘system’ in order to get what my son needs.

I never thought;

That I could live with all this and more; but still laugh and smile.

I never thought;

I would think watching ‘The Simpsons ‘with my 15 year old son could bring so much joy.

I never thought;

I would bear witness to ignorance, injustice, discrimination towards my own child but still manage to see all the love, encouragement, respect that surrounds us.

I never thought;

That this life would make me realise that being bitter, sad, depressed are all valid feelings, that they are just as valid as feeling happiness, hope, love…

I never thought;

I would need counselling in order to raise my child.

I never thought;

I would ever laugh again after my sons diagnosis, but I do…I laugh so hard that sometimes I can’t breathe.

I never thought;

That my son would be the one teaching me …teaching me just how to ’be’ in the moment.

I never thought;

That my son would be 15 years old and still needing me as much as he did when he was a baby.

I never thought;

My life would be like this and…

I never thought that I would realise that I am not the only one whose life took many unexpected twists and turns.

I never thought;

I would know what ‘hope’ can mean to people.

I never thought;

I would have a son who has changed me completely; he’s changed my point of view, my beliefs, my understanding of the world, my compassion, my empathy …

I never thought;

My son could show me without uttering a word how much love he has for us.

I never thought;

That I would be thankful for not knowing when he was born, what I know now – 15 years later.

I never thought;

I would be here living this life …I don’t think anyone’s life is exactly how they imagined it to be…

If I had money for every time that i was asked that question..?

Well, I’d be able to fund a short weekend away probably.

It’s a question I don’t mind being asked. In fact these days I love being asked questions.

It is a chance to bridge the gap between the world of special needs and well, the world of oral eaters.

It’s a chance to normalise what is already so normal to us, and a chance to raise awareness.

It is a question I now respond: “My main aim is for her to gain weight, be hydrated, and be comfortable.” Only people like us can fully appreciate what I mean by that.

There was a time when I’d give my limbs for her to be able to eat, I still have moments of grief when I see a mum and daughter in a cafe sharing a cheeky slice of cake.

But now? I would like her to not require 24 hour tube feeds. It is absolutely soul destroying at times.

I have known people say “well what happens if you just don’t feed her? Then she’ll have to eat.”… Well no, Doctor Stranger, it isn’t always that simple.

There are more reasons why someone might require a feeding tube than you ever might think. There are also more types of feeding tube and ways to be fed than I ever thought possible.

Once you have a tube fed child you eventually end up picking up a language you never knew existed, you can have full conversations with a fellow tubie parent that would leave others baffled.

“Have you tried bolusing feeds via the G or do you need to leave it as a continuous pump feed? We have problems with occlusions on this new feed, it’s these silly new connectors on the giving sets. Since having the GJ though we’ve been able to do free drainage and increase fluids via the g” (A probably genuine conversation I’ve had)

Those of you who have followed Amy’s journey will know that our issues regarding feeding has been far from simple. Initially Amy had an NG tube… she was born unable to swallow.

She would cry and cry as a baby and we frequently arrived at the assessment unit all in tears desperate to help her.

This is when the severe GERD (reflux) diagnoses began, shortly followed by a huge cocktail of various meds.

The bolus feeds stopped (gravity feeds via syringe) and were promptly replaced by Mr Abbott (my name for the feeding pump).

The NG tube was replaced by a gastrostomy and fundoplication.

The relief we felt not having to constantly aspirate test (checking ng tube was in the right place, i.e. not in her lung), not having to repass the tube, not spending my days begging for more duoderm and cutting new pieces when the old ones came off.

The fundoplication surgery failed after a few months, it was devastating.

Even though I had done SO MUCH research I hadn’t yet discovered that fundo fail rates for SNI (severely neurologically impaired) children was significantly higher.

For some it is the miracle procedure, for others like us, a wasted gamble. We tried several formulas, we tried blended diets. We tried it all. We still do.

A PH study showed that Amy’s reflux was only mildly abnormal. Something I had suspected for a long time, I knew… KNEW… that her feeding issue is digestive i.e. gastroparesis, dysmotility.

I am now more vigilant than ever in trusting my instincts… you can have all the medical knowledge in the world and have encountered the most complex of patients, but there really is something to be said for parental instinct.

I am not disputing that reflux is not an issue, but more that something more is happening that is making food a big issue for Amy.

A PEG-J was inserted. We wondered if bypassing her stomach would aid digestion. It did not. It was near impossible to get meds in. She was in pain. It was awful.

I shed so many tears knowing that I am the reason she had this. I fought and fought to trial that tube.

Amy gets about 650 calories a day… with her type of cerebral palsy she needs minimal 1200 but possibly 500 more due to her constant movement.

She lost 1.3kg after her last tummy bug. It keeps me up at night.

We now have GJ button (gastro-jejunal/transgastric jejunal). It has two ports. It is amazing. We can do meds, extra fluid and drainage via the G port, and continuous feeds through the jej.

It is amazing. For the first time ever we have been able to increase her feed rate and her not bloat or need constant drainage. There has been no retching. No scares, no aspiration. Wow.

The downside? Every 4 months/when it fails we will need to go to our city hospital and Amy will need sedating and taking down to radiology for the replacement.

Before this I could just do a tube change no problem. It is disheartening. I am also told this may not be a suitable long term option. She may benefit from a separate jejunostomy.

Most tubie parents will tell you that stoma management can be very tricky. Over granulation, leaks, sores, all sorts. You will see pictures on forums whilst eating your tea that could make others faint.

This is our life now and we embrace it with tenacity and vigilance.

In addition to the GJ she also needed surgical dilation. This is not for the faint hearted to watch, I almost fainted.

It saddens me deeply what she has to go through, and I hope she understands that we are not out to torture her but actually want her to thrive.

So yes. She will always have that tube. Even if she learns to eat. She will still have that tube.

I love that tube, I hate that tube.

Every time I think how much I hate the tube I am reminded that without this incredible piece of medical intervention, she would not be here, and that doesn’t bear thinking about.

I thought the time I was waiting for an appointment for my son would be the only appointment I would be stressing about.

How wrong could I have been?

Fast forward a year and the length of a consultant’s waiting list is the least of my problems.

I have learnt in the last 6 months more medical jargon than I have in all my life.

I have been on Google more times than I have eaten a hot meal to research different conditions, different symptoms, just in case there is a new article regarding a child that is similar to my baby that wasn’t there yesterday.

I have learnt what the difference between developing slow, development delay and global development delay is.

I have learnt that the doctors do not know everything and even when there are lots of symptoms sometimes the doctors still scratch their heads.

I have learnt polite answers to people who say ‘there isn’t anything wrong’ ‘all babies develop differently she just doesn’t want to move’ when all I want to do is break down and cry and ask ‘were you in the last appointment? Did you hear what the doctors said? Are you better than the doctors?’

I never thought my life would be so full of appointments.

That my calendar would now be jam packed with occupational therapy, physio therapy, support workers and hospital visits.

I never knew an ‘open access letter’ for our local hospitals paediatrics ward existed until a couple of months ago.

I didn’t realise that it takes 11 minutes from my house to the hospital on a good run.

I just didn’t know how much my life would change.

I look back at how I worried over the fact my other babies didn’t crawl at 6 months like their friends and now just shrug and say my baby will crawl or walk or move when she wants.

My mothering has completely changed. My life has completely changed.

I bought a highchair that will probably never be used and even though my daughter is 10 months old the high chair just sits at the end of the table gathering dust, I can’t quite bring myself to get rid of it, yet deep down realistically I know it will never be used.

I have sold all the rockers, all the activity tables I had excitedly got while I was pregnant as I don’t want to be reminded that my baby is globally delayed.

I am sure one day she will be ready to play with them but for now I am not emotionally strong enough for that reminder in the nursery.

I now don’t brag at going to baby sensory class and buying sensory toys, I now go to sensory classes and buy sensory toys because my baby needs them.

I have learnt so much since last year and I realise that my journey is just beginning.

I am now starting to look at adapted equipment to help bath my baby, feed my baby and help my baby play.  I am starting to learn of new forums and charities who can help support us.

I have learnt to celebrate every little thing and have learnt that my daughter is perfect she is just unique.

My journey is just starting.

My daughter has shown me so much already I wonder what she will show and teach me in the years to come.