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like the slightly-out-of-date dessert your late-night nemesis self just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
Half term sucks. It is not a yay-we-get-to-lie-in-and-laze-about scenario. Not when you have a B, who, from the moment he wakes up to the moment he goes to sleep, needs line of sight supervision. His favourite activity at the moment is posting. All the shit, in all the places. I am done with fishing tiny random lego pieces out from behind the radiator, un-wedging books from the miniscule gap between the DVD player and the unit, and risking my actual life by blindly groping around for toy cars amidst the wires behind the TV. The most annoying thing? The posting of random items IN the bedside lamps. Why? Sweet Lord, why? I have no idea what runs through that boy's head. All I know is such obsessive chaos does not a chilled half term make.
One thing that often escapes the radar of typical families is the complete lack of childcare for kids with additional needs. As in, regular childcare that we can ring up and book onto does not exist. I'll just let that sink in for a minute, in …
It's really something when a potentially enormous life event gets swallowed up in the chronic chaos of the daily. Mainly because life is so full of the life-or-death stuff it becomes the norm. I'm currently sat in Poole hospital, hanging out in the pre-op ward. Not for shits and giggles you understand- I hate hospitals with a passion and would rather walk across hot coals than choose to be here. I even pass all B-hospital-duties over to S, as far as possible. That's not to say I haven't spent my fair share of time here. I have, which is probably why I hate the place so much. While I completely understand the life-saving benefits of a free NHS, and wholly appreciate the settings which provide that care, for me there's too much association with past stuff. Too much time spent visiting parents as a kid, and too much time here myself in various capacities. So yeah, not my forte.
I'm here because they need to get a growth out and there's a small chance it might …
1-At some point in your parenting career you will accidentally ingest your child's faecal matter. Usually in the process of determining whether it's mashed dribbly biscuit or shit on your trousers.
2-Your hoo-hah will never be the same again. This, dear friends, is truth. No amount of pelvic floor exercises can make up for the fact you have pushed a watermelon sized object out of a much smaller sized orifice. And probably needed stitching up afterwards. That shit ain't so fun.
Of course, if you have a C-sec, this won't apply. In which case, I am very happy for you. Really. Very delighted, in fact, for you and your in-tact vagina.
3-The more you convince yourself you will not be that parent- the one whose kid throws those shit fits-the more likely you are to birth Jodie from the Amityville Horror. Karma's a bitch man.
4-You've not felt pain until you've stepped on a lego brick. You also realise your levels of self control while trying not to shout the C-w…