Last Wednesday morning was Probably the first big reality check I’d had. Not only did it knock my emotions sideways it was THE BIGGEST SLAP IN THE FACE I’d had since Dylan was 8 weeks old and first taken into hospital.
For those of you that know me I always stick a smile on my fully made up face. Nothing phases me with Dylan. Not the injections I have to give him, the untold amount of meds I have to struggle to get into him daily, the constant seizures I have to manage – I’m sitting watching one now as I type, not the fact I don’t leave home without his oxygen – just in case!!!
I always try to make light of any situation.
Having a disabled child isn’t something that anybody asks for and until it happens to you take for granted healthy children.
We’ll we certainly did B.D – before Dylan!
But something as trivial as a parking ticket, people being rude about parking, or just watching Eastenders can tip me over he edge.
I cry over irrelevant things.
I don’t cry at Dylan as he is the most gorgeous happy wonderful little boy.
I can count on my hands he amount of times I’ve cried over Dylan one of which was when he was too poorly to be put under general anaesthetic at Great Ormond Street Hospital – GOSH but our little fighter amazes us all. Always.
In fact twice is how many times I’ve cried over Dylan.
The second was when Dylan was 16 months old and was told his brain was growing larger than his head – this was an untrue statement thankfully but very shocking to hear.
So back to last Wednesday, to which I’m still a bit wobbly about.
Now when Dylan was born, 20th August, from day one we discussed being aged just 4 and 2 weeks we would feel our little boy would be very young to start school so I’d always had it in the back of my mind that we would delay his schooling by a year. But thinking and doing are two very different things.
Back in October when parents of children born Sept 2009 – Aug 2010 put their choices down for the children’s school I had to make ‘the’ telephone call I’d been anticipating for the last 3 years. “Sorry my son won’t be starting Reception in September 2014 on medical grounds. ”
As much as I put it to the back of my mind it always keeps popping to the front. Now Wednesday 16th April the date when the email and/or letter arrives telling the parents if their child’s got into their chosen school, if they’ll be joining their sibling at the same school, or if they’d got their second choice.
Now……… I knew I wouldn’t be getting this letter or email but this didn’t stop me from thinking. What would have been. What should have been. If we’d had a ‘normal’ little boy. Not one that has to endure the pain our little boy goes through. Not one that can’t talk, stand or even walk. Not one that has limited understanding. Not one that hasn’t developed further than about a 9 month old baby.
Now……… Don’t get me wrong, we wouldn’t change our Dylan for the world. He is completely and utterly perfect to us. And to us he is normal.
Obviously we wouldn’t want him in any pain or discomfort and wish we didn’t have to inject him with these potent drugs we do.
But in the real world, what could have, should have been, Dylan starting school this coming September.
Sometimes, and only sometimes I feel life is really unfair.
Not to me, I have excepted that my life has changed and that my job now is to look after not just Dylan (100% care) but both of my children as we also have a daughter who is perfectly healthy and simply just perfect.
Then I think, “our gorgeous delicious little boy”, “why him”?? “Why is he missing out on his childhood”? Or on the flip side he’s getting an extended childhood as it’s taking him a lot longer to develop than most children. So I’m really lucky as I’ve had him as a baby for longer than anyone else.
But that didn’t stop me from crying. In fact I became a bit of an emotional wreck this week. Seeing everyone’s Facebook statuses at how happy and relieved they are that their little angel had got into the same school as their sibling or had got their first choice school. Now please don’t get me wrong I’m not a bitter person and am generally happy for others. I’m just a bit sad for me right now. And it hurts…… 😢😢😢
It was just like beings slapped in the face with a big wet fish 🐠, and to top it off reality hit hard whilst we were in Great Ormond Street Hospital – GOSH having a procedure under the Gastro team. They found Dylan’s stomach to be ulcerated. My poor boy has been in even more pain than we knew about. I was even sadder now. And very cross, seen as the Gastro department are the most dysfunctional department of the famous hospital and had they have got their act together sooner they could have found this many months ago – but that’s another story.
So to summarise, I have a minimum of another year with my beautiful boy home with me. I have eaten more chocolate than food – good job it’s Easter 🐣!! And I’ve cried my quota for 2014/15&16!! So I will readjust my make up, put my smile back on and carry on. 💄💋
Having a child with an undiagnosed genetic condition, a S.W.A.N (Syndrome Without A Name UK) is sometimes a very lonely place to be but mostly I feel so lucky to have been given this unique wonderful child 💙