Just the four of us.

For the first time without any other help.

We survived.

And I’d even go so far as saying we had a really good time.

We were tired, yes, but we (the parents) appreciated the change of scenery and lack of washing up and definitely learned a thing or two for our next trip.

The kids had a ball!

We went by ferry from Poole to Jersey and stayed for four nights at the Durrell Wildlife Park and Camp.

We needed to take a lot of ‘stuff’ with us and so flying and going too far from home wasn’t an option.

But we were very glad we made the effort to get away.

The Ferry

It was pretty good.

We went with Brittany Ferries on board the new Liberation fast craft.

With our car, packed to absolute breaking point with equipment we’d need to be able to enjoy our time away.

The staff were very helpful and although I wouldn’t say getting around on board with a physical disability was the easiest, certainly when parking up on board and getting up to the decks, but it was manageable and we were helped by very kind attentive staff.

The facilities on board were pretty good (although the food was pretty naff).

Specific shout out to the children’s zone, which had a large screen showing movies and beanbags to crash out on, which seemed to keep our two pretty happy for the four and a bit hours it took to get there.

We didn’t upgrade our seating to get a table and wish we had, as the standard seating had aeroplane style drop down tables that weren’t suitable for Hadley to eat at by himself as he couldn’t support himself enough in the chair, even with the GoTo seat the tray was a bit too far away.

But we could have reserved a wheelchair space which would have eliminated that problem so can’t really complain.

We decided not to take Hadley’s wheelchair as we only had room in the car for the trike or the wheelchair with all the other stuff us families need to take on hols.

We opted for the trike for more fun and independence at the other end and buggy in case he got tired.

That and the potty chair as he cannot use a standard loo.

The disabled toilets on board were just a loo with a baby changing drop down table – so changing had to take place on the floor and it wasn’t very pleasant or easy.

Bit of a disappointment for a brand new vessel only launched this May.

Seems they have missed a great opportunity there.

But if you look at the alternative on a plane, the ferry wins hands down.

Always a positive spin and all that.

The Durrell Wildlife Park and Camp

I’m not a camping person, but this is really not like camping at all.

The ‘pods’ as they call them are carpeted with real beds and a log burner for the chilly nights and really were very comfortable.

Each sleeping pod had it’s own kitchenette and bathroom tent next door.

We stayed in one of the wheelchair friendly pods of which there are two, and although it didn’t have a changing bed in the bathroom which would have been the icing on the cake (we just used the actual bed with a mat in the pod for privacy), it had been very clearly thought out.

The height of the worktops in the kitchenette was lower than standard and had no shelving underneath so that a wheelchair user could access everything very well.

The wet room had an awesome shower with seat and rails with a large turning area and accessible sink.

Generally speaking, it was a really great place to stay and the staff was incredible.

Nothing was too much trouble.

We had parking closest to the pods and our little guy was even allowed to use his trike on camp, despite there being clear rules about no cycling for all other guests.

And you could see the Lemurs from our tent!

Amazing!

The Wildlife Park itself was wonderful and by staying at the camp we had free passes for the duration of our holiday, which was brilliant.

So if either of the kids got too tired or any meltdowns happened (and there were more than a few) we could just leave, regroup and come back again later.

A real bonus for the way that our family life works.

It’s a fabulous place to visit with brilliant enclosures and great opportunities to get up close to the animals.

The food on site was out of this world and despite no changing beds in the loos, the disabled toilets were cleaner than my loo at home and so changing on the floor with a mat wasn’t too much of a problem despite how we all feel about it.

There was plenty of space.

Although clearly not ideal, it didn’t ruin our experience of the place as so often happens on days out.

Not that I’m advocating not having a proper ‘Space to Change’ facility, on the contrary.

But we’ve all come to not expect there to be and this was by far and away the cleanest place I’ve visited on a day out with the kids.

And it was a zoo!

You’d have thought it may be one of the worst.

Jersey

Well, what can I say. It’s a beautiful island and we can’t wait to go back.

We didn’t have chance to visit a huge amount as the kids were so taken with the beautiful beach up the road from the camp and the wildlife park – we ran out of time.

The beaches that we did visit were not hugely accessible though.

Lots of steps.

Fortunately, for us we are still able to carry Hadley, but it would be a problem for people with mobility issues.

I am sure there are more accessible beaches on the island though, we just didn’t visit them.

The only real issues we encountered were nothing to do with where we stayed.

We knew that change would be hard for Hadley to deal with, and although he is getting much better as he gets older, it was a problem and his mood was dramatically different to at home.

He suffers with severe anxiety at times and he was very unsettled during our stay.

He couldn’t sleep well and so was very grumpy.

So we know now that we need to prepare him better for a holiday and the concept of being away from home and the comfort that that brings him.

Plus potentially look at getting something to help him sleep.

Oh and get ear plugs!

Having never camped before we were blissfully unaware of how noisy the birds would be!

Coupled with the sounds of the Lemurs which were practically above our tent in the trees it was pretty noisy.

But an exciting, ‘once in a life time experience’ kind of noise that was kind of the point of staying there so can’t really grumble.

It was an oversight on our part!

The only other thing we found tricky is that our two are still quite young and they still go to bed very early!

Most other people on holiday don’t and so it was hard to get them to go to bed in the first place as they watched other children running around the camp.

In a couple of years though, they will be those other children and I really can see us going back again to get even more from the place.

We would also forget about cooking and go out for dinner!

(But we are a family of foodies and the kids are so used to eating out and are very well behaved).

The food in Jersey is awesome!

I was so worried about taking our clan on holiday and that we just wouldn’t be able to cope.

But I was so pleasantly surprised.

We did however do our homework and speak to Durrell in detail about our needs before we booked it so we had a fair idea that we were choosing the right place, but you never can really tell.

I’d advise anyone thinking of visiting Jersey, and in particular the Durrell Wildlife Park and Camp, to go ahead and get booking.

It was a great experience.

What’s worse, they have definitely seen me struggle in to preschool with my son and daughter, pushing the wheelchair, desperately trying to juggle two ruck sacks, two book bags and two lunch boxes along with a huge potty chair and all the while trying to make sure my daughter doesn’t let go of my hand in the car park.

On numerous occasions!

Yet they still think it’s acceptable to park in the disabled bay without a blue badge (or a disability).

The blue badge sign is very, very clear and at eye level when you park, so there is no way they are unaware of what they are doing.

What’s even worse is that the times that I have seen this person parking there, the car park has been pretty empty! Not that it would be an excuse if it was full (I would still be fuming).

It’s just pure laziness and complete ignorance.

No sensible, caring, intelligent person would do this. The icing on the cake is that she is a mother.

She is a mum of a little person the same sort of age as my disabled boy.

Yet she has never thought to put herself in my shoes and think what it would be like if it was her beloved child that she had to watch suffer and struggle every single day!

For that, I can’t forgive her.

She is not a nice human being. So when I wrote the note for her (in black eye-liner, fittingly on the back of a letter from the NHS for one of my son’s physio appointments) I started it with: “I have reported you for repeatedly parking in the disabled car parking spaces without a valid badge. Please stop parking here.”

But there was a bit of room left at the bottom of the paper.

And I was so angry I couldn’t help but scribble “ARSEHOLE” in big, fat, capital letters.

Then I felt a bit guilty.

Then I felt ridiculous for feeling guilty. Then I felt annoyed with myself for not putting something far worse than the A word, but all the while I was shaking feeling like I was the one that was in the wrong.

Which is crazy I know, but it’s how people like this woman make us feel and that makes them even more despicable.

I haven’t seen her park there since (pats self on the back).

I regularly feel like she gets neglected.

Obviously I am not talking in a ‘call the Social Services kind of sense’, but neglect is definitely how it feels.

Every time she asks me to play snap, if she can play hairdressers, or if I can read her a story, her brother will call out, need moving, need taking to the toilet, need help with something!

So I say: “Sorry, I can’t right now love, I will in a minute.”

And then that minute never comes.

Life with Hadley is all consuming.

And that is not his fault.

He is not trying to take me away from his sister.

He needs me, and it’s my job to be there for him.

I want to be there for him. But I find myself resentful sometimes.

I don’t resent him, but I resent what it could have been like.

I resent whoever it is up there that makes the decisions, for not giving me two beautiful healthy full term babies that I can equally divide myself between.

And so I cry myself to sleep for both of them.

Wishing there was a way to cure Cerebral Palsy and fearing that my little girl will grow up thinking that I didn’t care about her as much as her brother.

That she wasn’t as important.

This makes me feel utterly hideous.

Sick to the stomach.

This little girl is everything I dreamed she would be.

She is beautiful, caring, hilariously funny and so popular.

And I feel like I never see her.

She (and I) are so lucky in that we have lots of friends and family that regularly spend generous amounts of one-on-one time with her, and she loves them all so much.

But I want to do those things with her. I want to be the one that she laughs with and talks about all the time.

I want to be plastered in dodgy eighties make up and nail varnish that covers my entire hands (she did this to my dad!).

But the reality is that I only get to do those things occasionally when somebody else takes on the main care role for my son.

Or when he lets them.

Don’t get me wrong, we spend a lot of time all together as a family, but that’s not the same.

This is not the way I had things worked out.

This is not what I wanted.

And it’s my aim this year to ensure that things have less and less negative impact on her. And me!

We are sneaking days out together.

We went for a cream tea for my birthday a couple of weekends ago and it was lovely to sit and eat with her (and the girl can eat! She’s definitely mine!).

We also went to the theatre to see The Sound of Music (her favourite musical) and it was marvelous.

We sat munching popcorn and singing along at the top of our voices. It almost reduced me to tears. This is what I wanted life to be like for her. And us.

Tonight as I tucked her in bed and thanked her for being such a good girl and told her that I loved her more than anything, she replied: “Thank you for being such a good mummy.”

The lump in my throat felt like it was going to explode.

I hope she really believes that.

I wish more than anything that nobody else has to go through what we did.

But I hope that by telling it like it is, it may help somebody else who has experienced this kind of trauma, to feel less alone and less guilty (because no matter how much we tell ourselves it’s not our fault, we can’t help but take the blame for causing our children’s disability in some way).

And it might just help somebody notice the signs of pre-term labour. Because in my situation, I’m not sure the docs really thought the babies were actually going to arrive!

I was expecting twins and I knew there was a chance of them being early, but I had no idea what that really meant.

At 27 weeks and 2 days gestation I woke up at 5am thinking I had a leaky bladder. It didn’t seem like my waters had broken as it was just a trickle, but something inside told me to call the midwife. 

Plus I had a friend that had just had twins at 27 weeks, so I knew it could happen.

The midwife told me not to worry, but to come in to hospital to be checked over in my own time.

In fact I think they actually said “have a cuppa and wander in when you’re ready.” Very relaxed. So I didn’t worry too much.

A couple of hours later, after the initial lack of concern, my consultant confirmed that Twin 1 (my daughter) had ruptured her membranes and it was amniotic fluid leaking out, not urine.

After a scan, they told me they would try to hold off labour for as long as possible (hopefully several days or even weeks) as the fluid was only leaking slowly and was replenishing itself.

All very surreal, but I was being told not to worry so I tried not to.

Skip to a few hours later and I’m having huge contractions! But nobody believed me. They said the monitors didn’t show I was in labour at all.

HOLY CRAP! They were beyond measure. But having never had a child before, I presumed I was just being a wimp and it would pass.

They did however give me steroids (to help bring on the babies’ lungs, but they were very reluctant to do so as they still didn’t really think I was in labour.

After a few more hours I told a very nice nurse that popped in to check on me that the paracetamol I had taken really wasn’t helping (as politely as possible) and she looked at me and said: “Don’t worry. I can see that this is getting more complicated. I am going to speak to somebody and get you transferred. You can’t have these babies here! (they couldn’t take pre-term babies before 30 weeks at my local hospital).

Ok, so if I’m honest, I really started to feel a bit shit by this point and this was the only person who seemed to understand what was going on.

I was worried.

Skip half an hour or so and I’m in an ambulance that is winding in and out of heavy traffic with sirens screaming, having mega contractions every few minutes, whilst holding a sick bowl. (The sick bowl wasn’t for me, it was for the midwife – she got travel sick going so fast in the back of the ambulance! You can imagine my joy!

Arrive at new hospital (famous one from One Born Every Minute). Tell them straight away there is no chance they are getting me on telly…..to which they reply: “Don’t worry. You’re not in labour! You won’t be having any babies”.

Me:“Then what the blinking hell are these contractions all about then?!?!? And the blood that seems to now be pouring out of me? I might be new to all this, but I really don’t think these babies are staying inside!”

Or words to that effect!

Skip a few more hours, a bit more pain and various medical professionals telling me I’m still not in labour, the doc says he’s going to give me some sleeping pills (I think it’s about midnight at this point and this has been going on since 5am).

Then he says: ”Do you think I should check your cervix? Just in case?”. They hadn’t done so at all up ’til now through fear of giving me an infection.

Me (politely): “Um, well I haven’t done this before, so what do you think?” “OK” he says. “I will just take a quick look.” (Doctor goes downstairs…then has a mild heart attack).

“I can see hair”, he says to the midwife. And he wasn’t talking about the fact that I clearly wasn’t prepared for being on such display that day!!

Cue more panic. Particularly from me. My little girl was on her way out!

After a few minutes, they decided that there wasn’t a rush, they could give me an epidural and then I could try to deliver the babies naturally in theatre.

So the anaesthetist gets me ready and performs the epidural.

I am shaking like a leaf by now and it makes it tricky for them to get the (giant!) needle in. But they manage it. It doesn’t work. (FFS! Why me!??!). I can still feel and move everything below the waist.

Then all hell broke loose.

Twin 1 (my little girl) had made lots of room in my womb now that she had decided she wanted to be delivered and so Twin 2 (my son) managed to do a somersault and knot his umbilical cord. His heart rate plummeted.

It was like when you are on a plane and you constantly look at the cabin crew when the turbulence hits, to make sure they don’t look worried.

Well I was doing this with the docs and they were PANICKING!

They were shouting, swearing, running about…

My husband was rushed out of the room to get changed for theatre.

I was wheeled at warp speed down a corridor to the theatre where they tried to calm me down to give me a General Anaesthetic.

They gave me something to drink and pushed down hard on my throat. I think that was the quickest way to knock me out in an emergency and not just to shut me up, but I don’t know for sure.

That’s the last thing I remember. I was out. The babies were then born by emergency C-Section pretty quickly.

In fact the midwife told me afterwards that the doctors had already started cutting me open before I was under (this makes me feel a bit sick) so I presume the epidural had finally kicked in.

When I woke up about 3 or 4 hours later I was violently shaking (result of the anaesthetic) and had no babies.

They were in Neonatal Intensive Care and I had no idea if they had survived or where my husband was.

Finally somebody came over to get me another blanket for the shivers and explained that the babies were both alive, but that my little boy did “have to be worked on”.

At this point I didn’t really know what that meant and I was too scared, too cold and too exhausted to ask any more questions.

They told me they were both being ventilated and were in incubators and they weighed around 2lbs each.

Then my husband came in and I really only remember crying and begging him to tell me they were ok. The doctors asked if I wanted to go and see them, but I still couldn’t get out of bed as the anaesthetic, along with the shock and section, meant I couldn’t physically move. And I was so scared of seeing them and not being able to cope.

So my hubby went and took a photo of them both for me.

Nothing in the world could have prepared me for seeing those photos.

They looked so poorly and helpless.

But in a few hours time, I was going to see them and I’m glad that I got to see a photos first to prepare myself.

They were even smaller in the flesh than I had imagined, but at least I was already prepared for all the wires and monitors and that really helped me get a grip.

As a result of pre-term birth and the lack of oxygen that he suffered whilst his cord was in a knot, my son has a severe physical disability (Cerebral Palsy, spastic quad).

And I do find myself wondering if I had shouted a bit louder, if I had asked them to check my cervix, if they had realised what was going on sooner, maybe, just maybe, he would not have suffered the brain damage that he did.

Or maybe he still would have. I will never know.

I try not to think about that.

I try to think that it could have been so much worse. I could have lost him, or both of my babies.

And so I thank those panicky doctors for getting them out before something worse happened

If we pushed our son more. If we insisted that he do more stretches and more physio. If we told him categorically that he has to wear his gaiters/his special boots/his Lycra shorts every day.

Perhaps if we did all these things, he may be more mobile now.

In fact, I think he probably would be.

I believe this is the opinion of some of his therapists and doctors and even some friends.

Although they are very kind and don’t say so in as many words, you can tell what they’re thinking.

This hurts. It makes us feel as if we aren’t doing the best for our son. When of course, all we want is for him to be as mobile as possible.

For him to have more independence and freedom to explore.

But the reality is, he doesn’t like doing these things. He really doesn’t. And boy does he let you know about it!

So much so, that we very often give up trying.

Because we feel sorry for him.

I hate that we feel sorry for him. It seems so wrong, but we genuinely do. I feel dreadful for him every day and would change places with him in a heartbeat.

And because we don’t have the energy to fight him on it. So we feel guilty and we feel that we are being judged for not helping him to achieve more.

But shouldn’t we be listening to him? He’s not sitting on the fence. He’s adamant that he doesn’t want to do these things and that’s one of the only things he has control over.

He doesn’t see his twin sister in a walker or doing exercises. He sees her jumping on the sofa, doing puzzles, playing in the garden and reading stories to her teddies.

That’s all he wants too isn’t it? To have fun. To be a four-year-old.

So should I feel proud of myself for allowing him to be free to watch back-to-back Thomas and Friends, whilst eating biscuits draped over the sofa (in a position his therapists would crucify me for), instead of spending some quality time in his standing frame learning how to hold a pencil? And then there is the other issue of time.

How on earth would we find the time to do everything that is needed to ‘bring him on’ faster anyway?

He has very little sleep, so is exhausted most days. As are we. He doesn’t eat well, so mealtimes are long and stressful and take up a significant part of the day.

We have pre-school and horse riding, family visitors, hospital appointments. Plus we have another child. She can’t be forgotten and has to put up with a lot as it is.

There is barely a minute to breathe and there is definitely no time for housework.

Most days I feel grateful just to have gotten them in to bed in one piece.

I wish he would let us push him more. But he won’t at the moment and if we do, I think he will just end up more cross and frustrated.

For now I am just going to have to learn to be grateful for what we do achieve. We do lots through play and that is helping. But it’s slow progress and that’s a worry.

Especially as we prepare him for school this September (gulp!). But that’s another story altogether….