Onwards & Upwards 😀

Well hello! I Haven’t blogged for over six months. 
Haven’t had the time. 
Time…… something I’m almost always late for. This isn’t a New thing. Happened when I was a teen. I’ve got better though. Never more than half hour late….. mostly!! 

But ALL of my time is being taken up caring for and being a mummy to my little toddler ( I say toddler in the loosest of phrases ) as that’s exactly what Dylan is trying to do. 

My 7 year old baby is turning into the funniest, cutest, most loving incredible little toddler. The little boy stuck in the mind and body of a baby is starting to develop ever so slowly, but ever so…….

Dylan by rights should be in Year 3 ‘Juniors’ but instead I’m still continuing to home educate my pre-school aged little boy. 

Dylan’s developed the most wonderful character. He’s oh so funny makes us laugh 24 hours a day ( sleeping is still not very high on his priority list 😴 ) He’s into everything now, he’s even found a love for Peppa Pig and does the cutest little snort when watching her. He picks Peppa up along with the remote and that’s him verbalising what he wants to do. 

He plays with his toys (I say plays. He does a lot of throwing and squashes a lot of potato waffles over his toys, toys like to eat you know!) 

For a non-verbal child he makes a hell of a lot of sounds and communicates by using ‘ ‘Dylan-aton’ (Makaton is far too common 😂) 

McDonald’s, Fruitshoot, sweets and choc (dairy free of course) have all got their own signs. Dylan invented them all and they’re fab. 

Both his Nana’s have their own names. Nana S is Nana Mum (he’s picked that one up from me calling her) and Nana F is Nana Bum Bum (no words!) 

Grandpas Taxi ride to McDonald’s has its own sign but I couldn’t even type what he does. We just know. 
As for Papa, Dylan mimics the funny noise he makes down the phone. So everyone has their own ‘new’ identity. 
The absolute love of Dylan’s life is his big sister Gaga, whom he sits at the front door whilst she’s at school desperate for her to be home. 

Eeeeeeeeeeee (Daddy) gets the credit for clearing up sick. Dylan’s MTX chemotherapy injections make him sick and he continues to tell me daddy clears it up (even though it was me!) Dylan jumps all over Daddy when he gets home wanting to play. 

As for me, Dylan’s learnt to climb on my lap, rest his head on my shoulder and give me a ‘Dylan Cuddle’ I’ve waited over 7 years for this and I happily stop dead to cooperate as these cuddles make me the happiest proudest mummy ever. Oh and when he blows a kiss too, I’m in heaven. 

He’s a quirky little character, loves playing ‘I see’ and literally hits himself in the face covering his eyes. Loves (trying) to do head stands (this worry’s the life out of me as he is so fragile) He points (well pokes, scratches and basically hurts) to my face parts as we learn the eyes, nose mouth etc. But no. Dylan prefers the neck. (Have you ever been pinched on the neck by a small 7 year old. Ouch!) Giggles when he try’s to do the conga, pulling on the back of my top singing La la la. 

He will only drink out of a new orange fruit shoot, has to be Asda teeth and lips and now loves a fish finger. Absolutely loves a shopping trolley and a credit card (don’t know who he takes after??) 

He lay on the floor with his head down if he’s had a seizure and gives a little cry to tell me if he’s in pain. Points to the top of his leg each evening before we inject his Anakinra and goes over to the chair when it’s time for his immunoglobulin infusions. But when it’s time for his chemotherapy he knows this makes him sick and does the sound effect to go with it. 

Honestly the list goes on of how funny our handsome little man is. Our teeny little boy who has the rarest of undiagnosed condition, doctors didn’t think would make past 5 months old, wouldn’t walk let alone sit up. Continues to amaze and inspire me daily. He lights up our lives and we wouldn’t change him for the world. He’s taught us to laugh again and to cherish every single day we have with him. 

It’s Dylan’s Story & he writes the chapters. No one is invincible, every day is a gift to each and everyone of us. Live. Love. Laugh 💙

Please follow Dylan’s Story on Facebook 

Dylan’s Story in connection with the Tree of Hope charity are in our second year of fundraising to build Dylan a safe and sterile sensory room he deserves. To donate Click here


When a Swan met a Penguin…… A sleeping Tiger, a camel & a giraffe!!!

Swan’s in the park – Regents Park!!! For Special Children’s Day at London Zoo

SUNDAY 18th May had finally arrived , we had been looking forward to it for weeks. Special Children’s Day at London Zoo. I hadn’t been to the zoo since I was a child and was so looking forward to taking my children. I felt honoured to have a ‘special’ child. This little angel that’s been sent to us for a reason………… And to mix in such a large group of other people who have all been sent a special little gift from g-d.

But then a letter arrived from Great Ormond Street Hospital (GOSH) we will be admitted into hospital on Thursday 15th for Dylan to have a procedure done, nothing too major, but for my little SWAN minor is usually major. Oh no I feared we would miss this trip we were so looking forward to but the hospital assured us we would be home by Saturday latest, phew thank goodness do not want to miss this trip to the zoo.

It would be our first trip with SWAN UK (Syndrome Without A Name) the virtual group of whom I spend more time talking to on Facebook than my own friends. Liking their posts, sending virtual hugs and kisses, laughing and crying with them, wishing lots of good luck wishes. These people whom I know more about their little SWAN’s, non-SWAN’s husbands, wife’s, partners, families and personal lives than my own friends and family!!!! I mean when I say we are close we know exactly what their children’s stools look like, we are a pretty personal group!!!!
These people that share similar experiences to me, that spend their lives living the unknown too, that know exactly how I feel when my child doesn’t sleep or eat. They get me and I get them, it isn’t just a phase, they aren’t just teething. Our poor kids are sick children when they get a cold they’re ill for a month. We are virtually at each other’s bedsides when we are in hospital. We care about each other. We are a community.
When we have to live our lives by the clock to administer medicines. People like me who have more hospital appointments in their diaries than social arrangements, who experience the same pain as me when their child is constantly ill. People that know what having ‘special needs’ and what having a ‘special needs’ child is like.

These people are real and not only real I hold the tickets to get us all into London Zoo to celebrate Special Children’s Day together.
It turned out that this minor procedure is a bit more than minor so we were discharged after a lot of pulling my little boy around and really unsettling him only to be booked back in later in the year.

The weather report was glorious, sun cream on, packed lunch ready, medicines packed we pile in the car with what we thought was plenty of time. For anyone that knows me I am not the most punctual of people. Fashionable late I think it’s called! And I’ve never been more scared of being late for anything, I was the responsible ticket holder – oh dear!!!

Frozen CD blaring from the car stereo, non-SWAN’s request, SWAN just loves hearing her sing he babbles along – “lalala”. We smile. The sound of happy children is just beautiful and not terribly common these days.

Typical……… parts of London was closed for the celebratory FA Cup winners – can’t mention their name on my blog hubby wouldn’t be impressed as he supports the opposition. Adding at least half hour onto our journey. 11am we we had arranged to meet outside the entrance of the zoo. 10:50 a text came through from Nikki asking which entrance??? Then Marie-Louise and finally Renata, everyone was there but us. I felt extremely panicked. We were minutes away and the SWAN group were all waiting patiently outside the Special Needs entrance waiting for ME!!!

11:10 we were parked an practically running (all my gym trips were paying off!!!) towards the meeting point, nervous and feeling very silly that we were late. Will I recognise them, will they recognise me. We’d posted pics on Facebook last night for this precise reason. As I approached the group I instantly recognised Renata and her gorgeous SWAN Dominic. His smile infectious. We all did our introductions, the sun was beaming and the character Tiger at the entrance made my SWAN Dylan smile. It was decided we go off as individual families and meet up for lunch. Albeit it a big zoo we bumped into each other the whole way around.

We bumped into Liza by the gorillas, her beautiful SWAN Isy took an instant liking to my baby niece. Stunning little girl with lots of love to give. These mums were just like me. Fighting everyday for their undiagnosed child. I felt honoured to meet such like minded people.

We then stopped to meet and catch up with Marie-Lousie and her lovely family. Both SWAN and non-SWAN were tired out at this point and welcomed the break whilst us parents chatted, compared experiences and got to know each other. Her SWAN Jeremy was just like Dylan – he didn’t want his shoes on either. Her gorgeous little man sat on the floor airing his toes whilst we chatted. My SWAN sat restlessly in his buggy whilst non-SWAN hurried us up talking as she was desperate to see more animals. Nikki popped over to say hi (although we weren’t introduced properly too busy talking about prescription drugs) i saw her gorgeous little SWAN Joe who was having a poorly day. Don’t we all know that feeling and you can put money on it being when something’s planned.
I think we spent more time talking than actually seeing animals.
The tiger was asleep, the gorilla was hiding. The camel had he hump – 3 in fact lol, the hippo was in the hot tub having a lay down. We saw a baby monkey attached to his mothers stomach tiny little hands grabbing around its mother. Reminds me of my little monkey (SWAN) grabbing onto me.

The sun was beaming it was a truly beautiful day, gorgeous scenery and lovely people. We make our way over to the grass by the bouncy castle to join Renata where she was picnicking. Laid the blanket and got Dylan out of his buggy. He was free and able to crawl around. Being cooped up in the buggy all day is so frustrating for him. He’s not able to walk at all but we can’t let him just crawl along the streets. Breaks my heart but he really is none the wiser. He’s stuck in the body of a baby bless him he’s almost 4, should be, but won’t be, starting school in September, but he’s still just a baby. He was in his element. Teasing us that he was crawling off looking round at us and laughing. SWAN Isy who obviously has a love for babies sat and played with Dylan. She was wearing a Minnie Mouse t-shirt (Dylan favourite character along with her husband Mickey!!!) he was smitten by Isy (& Minnie) within minutes he was sitting on Isy’s lap. I couldn’t get the camera put quick enough, moments like this are to treasure for ever. You’ve heard of swan lake, well this was SWAN LOVE lol!!
We also met up with our good friends who also have a special child – non-swan.
It was lovely feeling so relaxed, children playing, me not rushing. A nice feeling of which I’m sad to say is something I am not used to anymore.

After lunch we took Dylan to see the penguins and wow did he love watching them swim around. He put his hands out to touch the glass as they swam over to him. We stood there for ages. It wasn’t just therapeutic for Dylan but for us too. We then moved onto the aquarium. Dark surrounds with brightly lit up windows. Beautiful fish all shapes and sizes. One even looked like Nemo. We took Dylan out of his Buggy and held him up to the windows he loved watching the fish swim about. He was touching the glass, looking at the coloured lights. This was such a sensory experience for Dylan he loved it and we loved seeing him enjoying something. So if we had a penguin and an aquarium at home Dylan would be more than happy – sensory overload!!!

At 4:30pm we were exhausted, not so sure the kids were, we had been in the sun all day, walked loads, seen lots and met some wonderful people who I would like to stay in touch with and get to know better.

Being the parent of a SWAN I can honesty say that I have stopped looking for the answers. I don’t even think I want a diagnosis anymore, because a diagnosis comes with a prognosis and without a prognosis our amazing SWANS can keep on amazing us and defying all of the doctors and healthcare professionals. Us Swan mummies (and daddies!!) are probably/definitely!! more medically trained than a lot of the doctors we see. You see a SWAN may be a beautiful animal/bird. But a SWAN child is an AMAZING creation, a one off, a unique individual and together – we are a community.

A huge big thank you to SWAN UK (Syndromes Without A Name) ((a project run by Genetic Alliance UK offering support and information to families of children with undiagnosed genetic conditions)) for arranging our day out and bringing us together.