Amazingly 2015 was Dylan’s 6th Christmas, not so amazingly he still didn’t have any understanding of meaning or the excitement but he enjoyed it. He enjoyed our manic two weeks of constant fun with family, friends and Mickey.
With all that go you’d think it’ll be time for us to settle into a quiet January….. Fear not, January is where it all starts again. For on the final and 12th day of Christmas Dylan ended up in A&E, a little blip but Dylan makes sure he keeps us on our toes. Putting his mark firmly on 2016.
Hot topic of conversation in the blogging community so far this year is about a blog about us special needs parents blogging. In so many words it’s a blog about how *’we‘ manipulate our children by blogging about them without their consent and do it for attention. #itsnotusattentionseeking #crippingthemighty #bloggoff (Dylan’s daddy said)
I wholeheartedly am a mummy of a special needs child with a life limiting condition who has complex health issues and enjoys sharing my experiences. Quite frankly I want to shout about Dylan’s progress from the roof tops but I also like to share the not such good news. #raisingawareness #welcometomyworld
- I blog in hope that I raise awareness for undiagnosed children #undiagnosed
- I blog so that other special needs parents read my blogs and can relate to similar experiences.
- I blog to get ‘it’ off my chest so I can deal with whatever’s thrown at us next.
- I blog in hope that someone somewhere at the beginning of their journey that I am on sees some kind of light at the end of the long tunnel I am still in. #standstillinblackwalltunnel
- More importantly I blog to see if there is ‘another Dylan’ out there. I want to find him or a ‘Doctor’ that just might have an incline of an answer I hope might get in touch.
- But mostly I blog about experiences personal to me and my family.
Most of us blog because we find it; therapeutic, informative and to raise awareness. We do not exploit our children, (perhaps if they were able-bodied and verbal we wouldn’t have a need to blog.) We only do it with every good intention and reasonings.
I absolutely love reading others bloggers views on being a special needs parents, a lot of which I can relate to, empathise with and learn from.
* I speak as ‘we‘ on behalf of the **SWAN bloggers community **I am so nervous but also so looking forward to the SWAN UK Bloggers Workshop later this month. It was be the first time in Dylan’s life I’ll be separated from him for over 24 hours. But that’s another blog. Watch this space. #excited #nervous #SWANUKbloggersworkshop
So what does 2016 have in store for Dylan’s Story?? Lots of visits to GOSH, Lots of blood tests. Physiotherapy, a new Speech Therapist, continued infusions, exciting new home education, SNAP, Haven House, SWAN meet ups and what ever else is thrown at us.
Plus I’d love if 2016 is the year we get to take Dylan to Disney…….
As for me I should have been in the circus; Being a mummy, a wife, a carer, a daughter, a sister an auntie and a friend (not the best one at times I know)
- My job has no set hours.
- No time off
- No holidays
- No sick pay
- No lunch breaks.
My Job requirements to be a special needs parent require;
- A willingness to be available constantly.
- Responsibilities include availability to work under immense pressure;
- sleep deprivation,
- putting my child’s needs before my own,
- Provide around the clock care
- Intake of humungous amounts of caffeine…
- Being a real life superhero!
Role concists of being a;
- Play therapist,
- Occupational Therapist,
- Speech Therapist,
- His eyes,
- His ears,
- His voice
Length of contract
- Ongoing – please g-d forever
Hours of work;
- 24 hours a day 8 days a week.
- £50 odd a week Carers Allowance!
Quitting is nonnegotiable.
I take it all in my stride but I don’t claim that it’s the easiest job I’ve ever had.
Along with managing my daughters busy social life, running the home, cooking, cleaning, ironing etc. etc. etc.
I wouldn’t change a single thing.
So now dare tell me not to blog about my life, my family and my special son.
I have been blessed. 2016; please make it a good one for my Dylan, my superhero.