So Complex, So Perfect, So Dylan ๐Ÿ’™

I’m back…. After having writers block for almost three quarters of a year. I feel I have so much going around in my head I need ย to release some before I explode

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Since I last wrote we’ve been on several more adventures, some good…….. And quite a lot bad.

We found out the drug we had been holding out for all this time could shorten his life. This knocked me of my perch but like a trouper I gotย back up and simply carried on…..

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More medial equipment arrived. Which dylan hates and I’m not jumping for joy over. But ‘excuse the pun’ little steps n’all……..!!

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Christmas was fast approaching and Dylan was on good form. I was extremely organised and ready for a lovelyย family Christmas filled with fun and laughter and lots of baileys!!!

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Dylans 5th Christmas and finally he recognised the tree, the sensory twinkly lights he loved. What an amazing feeling. Dylan pointed to every Christmas tree we saw.

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Just before Christmas I got a call from Haven House Children’s Hospice. We had been commissioned for respite. The lady was full of congratulations. I put the phone down and cried. Now, those of you who know me know I don’t let these kinda feelings surface. Which ever way I looked at it my sick child just became sicker being offered a place at a hospice. Hospices have a stigma about it and I know children’s hospices can be a very different place to end of life hospices but even so…….. I kept telling myself it’s for respite. But then again those of you who know me know I don’t do respite very well.Me and dylan are a bit like the Sinatra/Dean song. Or as I prefer the Robbie Williams and Jonathan Wilkes version of ‘Me & my shadow’

“And when it’s sleeping time
That’s when we rise
We start to swing
Our clocks don’t chime
What a surprise
They ring-a-ding-ding

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And that’s the alarm to start the day. Off we go again. School run (for big sister), medicines, therapists, doctors…… Groundhog day ๐Ÿ˜ด!!

Christmas Day was lovely, Boxing Day too. But the 28th December Dylan wasn’t right. He chose to display this to me on arrival to Hydes Park Winter Wonderland. It was freezing and with a poorly child felt like Winter Nightmare-Land!! We were looked after by a very good friend who works in Hospitality (who I’m sure after this incident and the year before’s incident wouldn’t care to spend time with us again!!)
Still, feeling rather poorly Dylan met a celeb who he made fall for him and what a lovely lady she was. It was a ‘shamazing’ experience!!

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I can’t bear to go into too much detail following this but Dylan got so poorly we honestly thought we were going to lose him.

Having an undiagnosed child with the only label being life-limiting makes every breath you take difficult. Makes you look at life from a very different prospective. The love I have for my son is more than unconditional it’s indescribable, it’s like no other and with what potentially hangs over our heads you can understand why I can’t bear to be parted from my boy.

But he is a fighter. He’d give Tyson, Mayweather & even Ali a run for their money. When they gave out fight Dylan was right at the front of that queue and tbh I was probably just behind him.

A very good friend and old school friend recently said to me that if she had to picture one girl from our school year in my position and one who would not have coped she’d have put me in the latter category. This friend has helped me through the last couple of months and I can’t thank you enough ๐Ÿ˜˜.

Long gone are my princess days, I’ve rolled my sleeves up, put on my doctor hat and boxing gloves and start each day as I mean to go on. Dylan has taught me loads, I’m nowhere near as selfish as I once was, I can teach a fair few medical professionals a few tips!

But mostly how to love like no other.

Talking of ‘friends’ I can honestly count my good friends on one hand. Ones who are genuinely interested in Dylan (& not the ones that just want to know purely for the purpose of gossip or for being in the know!!)

Having a special needs child means you are out the loop, no time for playground gossip! And if it wasn’t for social media would know very little about what’s going on, on the other hand because of social media you know exactly what’s going on in the world without you!!

I know I’ve declined so many invitations it’s probably not worth even asking me as you probably know the answer you think???

Wrong.

Having a special needs child means you are super sensitive to not being asked. Having a special needs child makes you look tough on the outside but on the inside leaves you with very little strength to show you are broken.

But what hurts more is having a special needs child that doesn’t get invited to age appropriate parties. I know and you know it can damage his health on most occasions but let me decline it eh!!

But in all fairness to you it’s not difficult to offend a mum of a special needs child……

My true friends are so important to me and I thank every one of you and yes you know who you are ๐Ÿ˜˜๐Ÿ˜˜
My loving family who constantly want hourly updates of how their darling little grandson is doing.
My amazing Scarlett. A caring, strong, loving daughter and big sister, who lightens up Dylan’s (& our) world.
My rock. My husband. ‘Nuff said. I love you all.

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And to Mickey Mouse and his Clubhouse. Mickey, you don’t know me but I know you. Very well. We spend almost every waking moment together. You make my son very happy. And without you in my life it would be a much more painful place. Until we meet……..

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We have a lot going on in the next couple of months, more procedures and operations in the pipeline. So until I have the time write again……..

Dylan’s Loving Mummy x

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