You are my sunshine ☀️

Greetings from Sunny Spain……. The perfect weather when holidaying with an extremely complex child. It’s in the 70’s, a bit cloudy, a bit windy and a bit wet…. Perfect weather for Dylan!! Holidaying with a Special Needs child late October seems to be the way forward.

Whilst most children live for going on family holidays it can be extremely stressful for a child with complex health issues, learning disabilities and very limited understanding to explain where you are going and what’s going to happen. Especially when the child is Dylan who loves being at home. The disruption of his routine, sights, smells and home environment is enough unsettle him for the entire time we are away.

Like many, holidays are a chance for the whole family to spend quality time together. But for us, away from hospitals, doctors, endless appointments and most importantly it’s about ‘making memories’

It can be hard keeping everyone happy. You see, Dylan has never before liked the heat, the water, has never experienced the sea, only eats certain foods and has sensory issues. So holidays for us have always been a challenge
Preparing with pictures……….……. As part of Dylan’s Home Education we use a Photo-Book as a way of communicating. So in the lead up to our holiday we used this to prepare Dylan for what’s in store. A picture of an aeroplane in a blue sky to Dylan was thought to be a “ba” (translated; bath (blue water) a Swimming Pool again was a ‘ba’, not a bad understanding eh! The beach was recognisable to Dylan as a ‘ba’ (just the sea). You get the picture. As far as Dylan understood we were having a bath!!

I tried explaining about the aeroplane to Dylan. “It’s like a big taxi in the sky“. It was hit or miss whether Dylan pointed to the sky with me when discussing it but the bit I know he understood was taxi.

Dylan’s Grandpa is a London Black-Taxi Driver and Dylan has found a true love ❤️ for being chauffeured around in Grandpas taxi, he absolutely loves it and recognises them going past calling them a “nana” (as Dylan is catagorised as non-verbal he can’t say grandpa or taxi so it’s the next best thing to call it) Dylan squeals with laughter & giggles & then laughs some more. So you can imagine the pleasure it gives his Grandpa to drive him round after his hard day at work!

So, so far we are having a bath in a taxi!!!

But did Dylan know something was happening? I’m not so sure.

So the general consensus is to plan ahead. Giving a special needs child a visual concept of what’s in store, preparing them what to expect – preparation is the key.

Dylan loved the aeroplane. After long discussions with Ryan Air via our wonderful travel agents ‘Travel By Inspire’ who deserve a mention in my blog as Nikki, Michaela and Lyndsey couldn’t have done more for us in arranging our flights,  all that goes with travelling abroad with a sick child and taking the huge load from myself. Thank you.
Another HUMUNGOUS THANK YOU  to Richards friend Barry for letting us stay in his amazing apartment. An extremely kind gesture for which we are so thankful for. As for Lloyd, we won’t mention the car hire company……haha!!

So with a folder filled with medical notes & a suitcase filled to the brim with medication we were on our way, only to be delayed by a full on security check at Stanstead Airport checking every single bottle of suspension and nearly losing 2 iPads. So, with a hungry wingey child in tow, Scarlett, not Dylan! we were ready to fly.

Special Assistance were fantastic at the Stanstead and we were greeted at Malaga Airport by a man with a wheelchair ready to escort Dylan.
Dylan didn’t really understand the aeroplane but being a night flight we have him his sleeping meds which actually worked. Well at the time of descent it did!!!

After tooing & frowing with the airline as to whether our “5 year old baby” should sit on his own chair or on my lap. We decided to sit Dylan on his own booster seat on the plane which he sat for the duration as good as gold – Familiarity is key.

I think he thought we were in a taxi of sort?

Dylan settled into the apartment extremely well, finding his way around and making himself at home. He’s had a couple of bad days feeling poorly but a dose of meds and a mummy cuddle & he’s picked himself up. He is such a strong boy. Not much gets our special boy down.

He is having the time of his life playing with daddy. Dylan loves sitting on the side of the pool with daddy splashing his feet. The water’s cold but that doesn’t stop my gorgeous boys having fun and daddy got so much pleasure being part of Dylan’s first happy experience in a swimming pool.

Another first experience was on the sand. Being that it’s not too hot, Dylan was able to sit on the sand with daddy and Scarlett, feel it between his fingers and toes and help them build a sandcastle. We were all a little bit confused when Dylan used the rake as a hairbrush – but that’s our boy!!! full of sand and giggles. If only I could bottle it, it’s a magical sound. #sensoryoverload #messy

I’ve learnt on our long hard journey there are different types of people in this world but when you meet a genuinely nice person, especially when they find out about the health condition of your child, you will remember it for a long long time.

The waitress who served us ‘Peggottys Fish n Chip’ restaurant offered to go, on her day off to ‘Iceland’ in Marbella to get Dylan Orange Fruitshoots. Thanks Jill, I know Dylan would have dehydrated without them.

Also to Jacky who made such a fuss over our Dylan every time we dined there.

Now we are nearing the end of our holiday, it’s like being in a bubble. Quality family time together as a four is rare with such hectic schedules, hospitals, schools, work….. so we cherish every second of our lovely family time together. Reality starts again when we are home; doctors appointments, Great Ormond Street Hospital, Therapists, Injections, Infusions and so on.
But for now we are going to enjoy every second.

#makingmemories

BMJ (British Medical Journal)

A RIDDLE; A person or thing that is difficult to understand or explain, a question that has no answer. 

Everyday for the last five years I have asked ‘somebody’ a question about our little boy and not one person can give me the correct answer. Why? Because Dylan has a rare undiagnosed genetic condition. So rare no doctor has ever come across another person who presents the same. Dylan is simply a five year old little boy living in the body and mind of a nine-month old baby. He presents in every single way the same as a nine-month old baby would, he is the size and mentality of one and is so super cute everyone wants to squeeze him, but internally he is a very sick little boy who has too many health complications, from his head to his toes.

Words make known. But we are living in the Unknown.

Now I am the sort of person who likes to know where I stand. I like to be organised, know exactly what I am dealing with. To be honest I am not even keen on birthday surprises. So you can imagine my shock when at 27-weeks pregnant with Dylan I got told “he’s not growing, he’s getting smaller oh & he’s got a genetic condition but you won’t find out which or how severe until he is born” Not the news any parent wants to hear, such a vague outlook but especially not to the person who always likes to be in control. Dylan was born on the 20/08/2010 a small but healthy 2.5kg. So tiny but so perfect. His problems started at ten-days old but wasn’t until he was eight-weeks old he was taken into hospital for investigations, blue flashing lighted to a more specific hospital but discharged with all tests showing all was ok?? At five-months old Dylan was again blue-flashing lighted into Great Ormond Street Hospital for Sick Children where we spent almost a month with various different departments investigating Dylan, from Neurology, his head, to Rheumatology, his toes, where we got the same answers as before

“all tests come back negative”

nothing was wrong with my sick baby. Doctors didn’t think he’d get through this period being so small and sick, but he did, so here I am five-years later, still none the wiser, but now I am much stronger person with the most incredible little boy who has made me this way.

Lots of things are mysteries. But that doesn’t mean there isn’t an answer to them. It’s just that scientists haven’t found them yet.

Having no answers, no label and no name is honestly the most frustrating, upsetting and depressing part. For years I have asked why does he….? When will he…? What if…..? Why…..? To any Health Professional that will listen. Dylan is under over forty from Consultants to Therapists so that’s a lotta questions to a lotta people.

We have been on Genetic studies for over three-years but still no answers. I have googled, boy have I googled, I have researched, I’ve read, I’ve wished, I’ve hoped and I’ve prayed but it was only when I discovered SWAN UK (Syndrome Without a Name) that I realised I wasn’t completely alone.

I thought this is it….. I will have my answers, I will find lots of children across the country all the same as my little boy. Wrong again, there really isn’t another Dylan, in this world that we are aware of, but instead I found a community of like-minded people, all with the same questions to ask as me. Everyone has a special undiagnosed child and can feel my pain and reap my rewards. A whole new world opened for us. Maybe one day we will get an answer?

Dylan’s life in words; Dylan’s Story  

So five-years on and still no answers, the only label is he is a ‘SWAN’ which represents a beautiful white bird. It is a label I am happy with. A diagnosis now wouldn’t change a thing. I have learnt it would be so rare and probably with a name like ‘-xy+z deletion’ (*for example) that it wouldn’t help us. I have wanted something so much for so long but all I have been wanting is a name. It wouldn’t change a thing about Dylan, it wouldn’t change the care he requires on a daily basis or the medication he needs, it can’t make him better. Albeit it may give us a more dignified prognosis, but we already know Dylan’s condition is life-limited and life-threatening and we know we probably won’t have him forever. But our gorgeous little superboy has already defied doctors and I know in my heart he will continue to do so.
A diagnosis may come with definite’s, we have already been told Dylan won’t sit up – and he can!!! That he won’t crawl – and he can and at he won’t walk – my child will try to, I know that much!!!

‘A diagnosis brings a prognosis’ therefore ‘without a prognosis the world is Dylan’s oyster!’

   

Nameless not shameless……..

It’s taken long time to accept, but not having diagnosis is not the worst part. It’s like buying tin with no label on, what’s inside is a surprise and it’s even better when the surprise is sweet and yummy – Just like Dylan.

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