I'm a mum of four, but I'm so much more than that. This blog is a glimpse into my mad world-the frustrations, joys and heartache of raising four kiddies, one of whom is particularly special, and trying not to lose myself along the way. Join me on my journey, I promise it'll be a hell of a ride!
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Something we are constantly told as parents of special kids
by almost everyone we encounter is this. ‘Make sure you look after yourself. You’ll be
no good to anyone if you don’t.’
This advice is dished out readily and in abundance, but,
like the slightly-out-of-date dessert your late-night nemesis self just
couldn’t resist, it leaves a slightly bitter taste, and the reality is never as
good as the idea.
I already feel bad. I feel like a shitty parent most of the
time. Adding to my mile-long to-do list with another self-care tick box is not
helpful. Also, I know I’m never doing enough. It’s the nature of having a child
so complex. I’m constantly thinking of all the things I could be bettering to
improve the outcomes for my beautiful boy, and generally for our family, and there’s
literally always more. I’m consistently missing the mark, because the goal
posts are permanently being shifted. Family life ends up being this crazy
pressure cooker of trying. Trying our best to make sure everyone gets what they
need to survive.
Let me expand, if you will. Here’s
a typical day, in a nutshell.
Wake up. Drag kicking screaming self from safe cocoon of
bed. Instantly feel guilty that S has been up for at least half an hour already
(he is a big morning person). Feel guilty again that I am not in any way a
morning person. Mumble half-arsed response to children’s chirpy pre-7am
greetings while muting inner monologue of rage. Express shower. Pad change,
administer meds and dress B if S has already left -string bag and octopus spring
to mind. Flit between feeding B myself and organising sibling feeding supervision
while I attempt other important jobs. Pack B’s lunch in semi awake state.
Ensure B’s Epic Bag of Life is sorted (bibs, pads, wipes, meds, spare clothes,
blue badge, home-school book). Ensure B does not break himself or anything else
in the vicinity. Glance at D and O as they shout goodbyes and leave, hoping
they’ve managed an adequate level of personal hygiene that morning. Sign life
away on form waved in front of face by youngest child – ‘Don’t worry Mum, I’ve
written my name and class and ticked the right box so all you have to do is
sign here..’ Clock how much seizure activity is going on, how much food B
hasn’t eaten, current mood, and anything else useful for school staff to know.
Write aforementioned info in home-school link book.
Attempt to alight bus with B. Unpredictable. Potentially
deal with mammoth meltdown as every man and his dog bear witness en route to
school RIGHT PAST MY HOUSE. Bundle B onto bus. Feel bad B started his day
stressed. Scoop smallest child from house, check she made/has lunch, and half-run,
half-walk to school, since lateness is usual at this point. Drop her at gate,
crack on to train station, head to uni. Work, lecture, work, coffee.. you get
the idea. Squeeze in some B-admin in the not-working gaps of the day - arguing
with social care, rearranging medical appointments, sorting carer rotas and
payrolls. Standard stuff. Possibly field call from school on seizures or behaviour
or eating. Head back on train. Pick up smallest from school. Get back to house
to meet B from bus if it’s not a carer day. Re-enact breakfast chaos, but this
time trying to make dinner. The keeping B safe whilst cooking tea jumps up
about thirty threat levels. Herd kids into bath…. bedtime routine… three
thousand ‘one more story pleeeeeeaaasseees’ later. Phew. And once the kids are
all in bed there’s still washing to put away, the dishwasher to load, or any
number of other tediously necessary jobs to finish.
Anyway, I’m sure you get the deal. Every day is chaos. Breaking
and peeing are rare privileges. A hundred things are juggled in fine balance and
if one gets forgotten everything comes tumbling down in spectacularly dramatic
fashion. How are we supposed to practice any sort of self-care when getting
through each day is like wading through mud?
The occasional times we do get some B-free time are bittersweet.
It’s great to be able to focus more on the girls. Of course it is. Equally, it
feels selfish to take any me-time when they usually get so little of us. We have this window of opportunity to do all the things typical
families take for granted, and naturally we want to cram in as much cool stuff
as possible. But that in itself creates stress. It’s like this big countdown
clock of doom hanging over us. And then comes the guilt. In huge crashing
waves. The guilt of being able to enjoy family time when one integral family
member isn’t there. In fact, being able to enjoy it because one integral family member isn’t there. That sucks.
Holidays highlight this stuff. Watching other families crack
on (pun intended) with their #soblessed Insta hashtags and effing Facebook family fun
times is rough if I’m honest. Egg-hunting in our house comprises retrieval of sticky
spat-out mini eggs from wherever B has deemed fit to post them. Family
get-togethers involve chasing a grumpy B round an unfamiliar environment while
scanning for potential spin/smash-hazards and apologising a thousand times for
being anti-social. Hence family get-togethers don’t happen. B doesn’t even eat
chocolate these days; another stinging slap in the face.
I’m sure there are others out there who feel the same.
Solidarity high fives to all you parents who know you’re doing the best you can, but who still feel shitty
Sorry not sorry for the angry undertone of my title. We've been struggling with a seizure shitstorm for the past while. I say we for a reason. Epilepsy takes no prisoners in relation to who it affects, and although B bears the brunt of the brainfuckery, the whole family reaps the unsavoury results.
Usually, when someone mentions seizure, the first thing that springs to mind for most people is the classic jerking fit. B has (thank fuck) only ever had a handful of these. Before my up close and personal encounter with the epilepsy hellscape I would have thought the exact same thing. But it's a myth. The reality is seizures can present in a million different ways; it's like the ultimate hundred-headed beast.
Considering our very existence boils down to billions of electrical signals being fired at lightning speed inside our heads, it's not surprising that when it all goes to shit, this could pretty much mean anything in terms of what actually happens. Everything is contro…
Today was the dreaded budget review. For those of you not familiar with acronyms, let me throw out a few that will confuse the fuck out of you as much as they did me the first time I heard them.
NHS: National Health Service (gentle start, bear with me)
CHC- Continuing Health Care: a package of care allocated to those deemed worthy. Usually decided with the help of a (rapidly changing) 'standardised' assessment tool by Panel Gods*
CCG- Clinical Commissioning Group: The local NHS group responsible for the CHC pot of funding. Other responsibilities include recruiting 'appropriate' Panel Gods*
EBD- Emotional and Behavioural Difficulties: NOT my kid being a shit. Genuine issues.
SLD and complex needs- Severe Learning Disabilities and complex needs: I think if you look this one up there's a photo of B right there.
ASD-Autism Spectrum Disorder: a neuro-developmental disorder comprising primarily social and sensory difficulties.
SLT- Senior Leadership Team: School Gods…
On Tuesday, B's carer (who is an all round legend at all things B) brought him back early from after-school respite because his peg had split. A peg (stands for percutaneous endoscopic gastrostomy, if you're interested) is a tube that goes directly into a child's tummy, to allow parents and carers to administer meds and feed.
We initially had one fitted a couple of years back when B's seizures were crazy and we couldn't
medicate him orally- at which point he was having upwards of 70 seizures daily. Poor kid was totally non-functional and lost a lot of previously gained skills. The epilepsy B is affected by as a result of his chromosome condition is life threatening; he has many different types of seizure and because of this it's often very difficult to find a mix of meds that fully controls it. The peg has literally been a lifesaver for him- we're now able to medicate and instead of 70+ seizures daily we now typically see a handful of small ones, which have…