Welcome to Reality 🚫

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 💙

🎈To understand or not…….. That is the question!!! 🎈

Having a child with complex needs is extremely difficult. As a mother you are their carer, their nurse, their voice and their opinion.

Limited understanding what does this actually mean???
I mean we presume that 90% of the time Dylan is oblivious to the world. For instance I could put Dylan in a shopping trolley in tesco or toys r us and his reaction to the different shops would be the same. We all know the average nearly 4 year old would love to be in toys r us and be bored the minute you step foot in a supermarket. Just as long as my boy has his pom bears he’s content to go most places. Oblivious.

But what if Dylan could or does understand every word I say??? Call me deep, but just because he can’t talk doesn’t mean he doesn’t listen to what we are all saying. Like Look whose talking. Except he’s not talking just listening. Food for thought.

Dylan has been called non-verbal, as I think the doctors have got bored calling it pre-verbal as no new words have developed in over a year. Although he says very limited words, mumma for me! Gar for his sister, eeeeee for daddy, nana for Nana, um for food and bye. Last night this word had never had more truth or meaning than ever before.

Last night was Dylan’s 2nd sleep study at GOSH and we’d decided as parents, so not to disrupt our daughter, that I would take Dylan and daddy would stay home with our daughter. In all the hospital stays we’ve had (& let me tell you there’s been too many to count) daddy’s always been with us. The hospitals have always accommodated this as our little boy is so complex. But this time we’d decided I’d do it alone. 7.30pm to 8am wouldn’t be easy as this study is to watch and investigate Dylan’s sleep pattern. This is a huge task when Dylan doesn’t sleep even when dosed up to the max on sleeping drugs. But hey I love a challenge……..

Now as I’d said Dylan has very limited understanding and as he’s approaching 4 Yeats of age I try to put his understanding levels at a chronological age. It’s hard. Perhaps about 9 months. Maybe a little less. Maybe a little more. It’s hard as something’s Dylan’s just can’t get to grips with, like a bath before getting ready for bed. If I wasn’t to give him a bath (he’s so tiny he’s still in a baby bath bless him) he would be confused about why he was putting his pjs on. But if, for instance I tell him to go to sleep or to stop biting, he has no understanding at all. He’s not just being naughty he simply doesn’t understand.

So my question is…… What if he’d heard me on the phone during the day talking about how much I wasn’t looking forward to it & I didn’t want to go. I mean who wants to leave home at 6pm and drive into London for their son to be wired up to machines through the night??? Not top of my list of things to do before I turn 40 but I know these things are a must in helping my baby.
The sleep studies are cardio-respiratory (measuring overnight oxygen and carbon dioxide levels, plus chest movements and airflow at the nose). All of which need little stickers to be attached to his little body which I know he understands as he had a phobia of things being stuck to him and pulls them straight off. (We had this last week when they tried to give Dylan a prolonged ECG – the nurses gave up after at least 15 attempts and lots of wasted stickers!!)

Back to my question…… I know try to envisage inside my sons head….. It’s echoey in here. I can here lots of what’s going on in the world outside some sounds a little strange but mostly I can hear everything normally just loud and echoey. So now I’m Dylan, and I can hear mummy telling people where we are going this evening. Hold on, we don’t go out at night. Not without daddy and gar. I really don’t want to be pulled about tonight. Wait!! I can’t exactly tell mummy I don’t want to go, I know she definitely doesn’t want to go too. We need a plan to get out of it…….

So at 5.45pm I pack the car up. I don’t travel lightly!! Just before we left my husband said he could see the fear in Dylan’s face. He definitely did not want to go. But off we set anyway…… After 10 minutes or so Dylan started grizzling. I thought he was hungry so passed him some food. He hadn’t eaten all day. Was he off colour or did he know?? Driving down the motorway Dylan’s grizzle turned to a cry. He didn’t want food. So I passed him his juice. Didn’t want that either. Now heading through East London his cry was a scream. This panicked me as I’m not keen on driving into London especially not on a Friday night. And so this went on.

We arrived at GREAT ORMOND STREET HOSPITAL (GOSH) I parked right outside the door. By this point you’d think he’d have worn himself out from screaming. Oh no not my boy. As we walk through the doors to the hospital through his screams he’s saying bye-bye bye-bye. This child didn’t want to be here. He knew where he was and he knew why we were here. I just know it.

We arrive at the sleep unit in southward building on 5th floor. A lovely male nurse greets us. I explain I think Dylan’s under the weather…… He takes us through to the room to which Dylan continues to scream even louder. Full on proper tears are falling from his eyes. The doctor arrives to examine him but Dylan wouldn’t let her. She leave us in order for Dylan to calm down. No such luck. Screaming was an understatement. He was dripping he was getting in such a state.

After a while we were asked to move rooms as he was disturbing the child in the room next door. At this point I felt like screaming myself. The doctor came back. I said he must be in pain. He was due his pain relief anyway so I gave him his evening codeine and paracetamol suppository. But to no avail. This boy was not giving in.

Another doctor came in to examine him. His heart rate was particularly high his temperature was up but his body felt cold. We were all sure he was brewing an infection of sort. It was now approaching 10pm this had been one of the longest evenings of my life. After much consideration and the doctors telling me that even if they conducted the sleep study it wouldn’t be a true reading with his heart rate so increased and that we should go home.

Half of me was jumping for joy the other half of me felt I’d failed him. Anyway within minutes the car was packed up and we were just about to embark for home when Dylan, who had now stopped screaming, laughed. A wicked haha told you so, I got my own way, didn’t want to be there laugh.

We arrived home after 11pm and the look on his face when he saw his daddy was a picture. Eyes all puffy from crying and cheeks still rosy he smiled and laughed and knew he was home and safe. He played with daddy and even had something to eat. He was up till 3am.

So, understanding or no understand that is the question???? Dylan did, I’m sure, know what was in store for him and because he is practically non verbal had to take extreme measures to get his point across. He did that indeed. I feel very proud that he was able to do this but it saddens me that it takes such extreme measures to convey. But still I’m very proud of the independence my son has shown.

Today Dylan’s not been 100%, very pale and blue around the lips (requiring some oxygen) a couple of spiking temp. But is this the something brewing of the aftermath of last night? He’s also not eaten all that much but has played happily with his favorite things. Balloons.;( but what Dylan doesn’t know is that we have to do it all again and properly this time)