Parenting: What I didn’t know then – Part 1

Hi…I hope you’re all ok.

I’m back!

I’m rather conscious that I haven’t posted for a while. 

Yet again, life just got in the way, as it does!

Since my last post we’ve had some lovely times and some really not so good times.  I’ve been really stressed…I’ve been up…and I’ve been really down…I’ve been subjected (again) to wading through the mire of beaurocratic red tape (and I’m still wading!) in order to get Hannah what she needs.  I’ve also wanted to have a HUGE rant (but haven’t…yet!) but hey, that’s life isn’t it? We all have our troubles don’t we?

Oh, and to top it all off, and almost send me over the edge, Hannah fell flat on her mouth on our hard kitchen tiles.  She now has one chipped front tooth and 2 grey teeth *extremely sad mummy face*.  They may only be baby teeth, but as well as scaring me almost senseless (blood everywhere!) we had to dash to the maxillo-facial unit for a check-up.  Hannah’s (thankfully) ok…I’m not so sure that I am though.

Anyway, I’m here now and I’m feeling reasonably ok-ish, so instead of a serious post I’ll try and write something a little more light-hearted.

Hey, guess what?…I have more brags to share! 

I’ll try and keep it brief (me? brief? pah!), but on Valentine’s Day Hannah returned home from school with her very FIRST Valentines Card…from a boy!!!!…her school friend Jack sent it.  Daddy, immediately leaping into ‘protective Daddy mode’ gruffly remarked that there would be “no boys coming to our house” but Hannah appears to have a really strong attachment (aka potentially smitten) with Jack at the moment and is trying to copy him when he uses sign language and will follow (ish) his instruction…and let’s be honest, at four years old, it’s far more fun copying your friend rather than a grown up, isn’t it? 

So, it seems, all thanks to Jack and Hannah’s AMAZING Speech Therapist (with some intervention from me too – but I can’t really ‘big myself up’ now, can I?) we have yet another brag…

Hannah can now put two signs together (apparently this is termed as collaborative signing) AND can sign ‘caterpillar’ and ‘ball’.  So now she can sign “more drink” or “more ball”.  In addition to this, I asked her the other night if she was going to have a bath…she spontaneously signed “bath”!!! I nearly fell on the floor in a delirious haze of happiness.   It hasn’t happened again though, but hey, it happened once, so it may very well happen again, right? Well, all I can do right now is live in hope.

For lots of reasons this is a HUGE, big, enormous, massive deal in our world.  I’m guessing you get my drift on that one? So I won’t go on about it…well, maybe I might…just a little.

OK, brags over.  Let’s move on shall we?…

You don’t get an all-encompassing manual on ‘how to do things properly for the rest of your life’ when you become a parent, right?

You could buy all the books in the world about parenting or go to University and study everything there is to ever know about child development/attachment theory etc. and be a real smarty pants on the theoretical perspectives of parenting and raising a child.  But I bet many parents would agree with me when I say that nothing, ABSOLUTELY NOTHING, prepares you for the realities of having a baby/child – that’s if you take your parenting role seriously, of course. 

In addition to this, throw into the mix a few extra things like syndromes, cleft palates, heart conditions, feeding issues, physical disability, learning disability, communication issues, etc. etc. and you may well feel like you’ve been hit over the head with a spade and dumped on another planet. I know I did for a while!  I didn’t feel like I’d been welcomed in Holland –  a reference to a beautiful poem about becoming a parent of a child with additional needs.  For me, it was scary. 

REALLY scary!

But you know what? I feel blessed and honoured to be a parent, regardless of the constant worrying and all the other stuff that comes with being a mummy….AND, in addition, being the mummy of a child with additional needs.

Before you become a parent you may possess many preconceived ideologies on what you’d do or how you’d feel or react etc. (like I did) but when your baby is born, many of those ideas may well just have to be forgotten. 

In my opinion, parenting is THE most important task you will ever be bestowed in your life.  For me, nothing else comes close.

Occasionally I hear myself saying to my friends “no-one ever told me about this” – and sometimes I think it’s probably just as well they didn’t!  – but you know what? sometimes I wished I HAD been told (I belong to the school of ‘forewarned is forearmed’)…and so I’m hoping that ‘Parenting: What I didn’t know then” will be a series of (totally disorganised and sometimes silly) posts of thoughts, observations, ideas, experiences, useful stuff (hopefully) etc. that I’ve had since Hannah’s birth…and some contributions thrown in from very kind friends who I promised I’d give a mention to.  I need to stress though that this is by no means advice…after all, I’m not an expert, but then again, who REALLY is? But I think many parents are the experts on their own children and sometimes this can get a little overlooked and parents’ voices aren’t always heard.

Obviously I’m a mummy of a child who has multiple disabilities, but in my world, and on my blog, kids are kids first (regardless of whether they have a disability or not), so I’m hoping that parents or carers of non-disabled children and even prospective parents/carers will get something out of these posts too. 

So, please take what you will from this – ideas, thoughts, a laugh (hopefully) amendments to your own parenting style, maybe even a little enlightenment on the difficulties that parents who care for a child with additional needs may face on a daily basis, or whatever.  If you got just a little something out of these posts, then that’s great.

Oh, and if you’ve any contributions then feel free to leave me a message…I’d really LOVE to hear from you.  In fact, I’d love to hear from you even if you don’t want to contribute….just stop by and say “hi” – that would be lovely.

So here goes…

Step away from the magazines/internet – Firstly, (OK, I said I wouldn’t give advice, but…) if you’re currently pregnant DO NOT, repeat DO NOT, get obsessed with how ‘celebrities’ are portrayed (or portray themselves) in the media shortly after giving birth.  This is, and has been for a long time, a HUGE bugbear for me.  These celebs may be pictured at a fabulous location in fabulous designer clothes (sans evidence of baby ‘secretions’ on their £2k cashmere sweater) with amazing hair, nails, make up etc. or frolicking in the sea on a remote tropical island wearing a teeny tiny designer bikini showing off their amazingly flat tummy and claiming they lost their baby weight in 2 days through meditation, yoga and the quinoa and lettuce juice diet.  This, my dear, is SO not going to happen to you…unless you’re a celebrity, of course.  You’ll be more than likely coming to terms with your new life: cocooned and snuggly in your home (hopefully) with your baby, surrounded by the people who love and care for you and feeling tired beyond belief (and maybe a little bit shell shocked too) but, all being well, you will be totally, blissfully happy.  And really, in the grand scheme of things, that’s all that matters…being happy (and healthy, of course)….not designer clothes or flat tummies.  So, step away from the magazines and the internet…right now!…well, just finish reading this post, then step away.  Sadly, I was not ‘frolicking’ after Hannah’s birth…not by any means.  For just over 3 weeks, I was perched, often alone, on a rather uncomfortable stool (stitches and sitting on NHS stools are NOT a match made in Heaven by the way!) – until a seat was eventually sourced for me – in a tiny (and not particularly shouting out ‘hygiene was of paramount importance’) overbearingly warm room in the Special Care Baby Unit from first thing in the morning until I had to leave the ward in the evening.  It wasn’t great, but we got out; we were lucky…many other families in there stayed, or sadly left without their baby. 

So, come on ladies…let’s CELEBRATE our bodies, our baby scars and our wobbly bits.  Let’s start a mutiny!! Who’s with me?……………

Documenting everything is really useful – it’s really easy to forget stuff.  By everything, I mean things like appointments, achievements, milestones, professionals’ addresses and contact numbers and so on.  Calendars, diaries, filing systems for appointments and medical reports, to do lists….oh, we have the lot here at Broccoli HQ. 

 Ahhh…come to me, lovely duvet – If my child is at school and/or safe in the care of a wide awake appropriate adult) I’ve now learned not to feel guilty about grabbing a quick daytime nap every so often if I need it.  An extremely self-indulgent and restorative activity! When Hannah was born (as I’ve mentioned previously) things were pretty much ‘full on’ in terms of appointments etc. and I barely had time for myself.  Scratch that…I had NO time for myself.  So, right now, any spare time that I have feels like I’m reaping back what I should have had the luxury of four years ago.

 It’s nice to pamper yourself every now and again – do as I say, not as I do! …unless you class snoozing as pampering *cheeky wink*.

I look forward to quality time with my child – Often we get swept up with the (what can feel like relentless) hustle and bustle of day to day life…going to work, commuting, attending appointments, packing school bags, changing nappies, bathing child, feeding child, dressing child, tidying up, cleaning up after child, cooking, making phone calls to professionals, organising etc etc.  But when all that’s sorted, for me there’s nothing lovelier than experiencing the simple things in life – just being with your child and looking at a book together, being silly and making funny faces, dancing around the kitchen with BBC Radio 6 in the background (a very good radio station in my opinion!), snuggles on the sofa, tickles and giggles etc….heavenly and priceless!!

Our home may not always be as tidy as it ‘should’ be – So what.  Big deal.  Yes, ‘Mi Lord’ I have committed crimes against the Domestic Goddess, guilty as charged, lock me up now and throw away the key.  Here at Broccoli HQ the mantra is ‘if it’s hygienic and safe, then that’s all that matters’.  I’m now sorely tempted if I catch visitors casting sweeping glances around my home or garden and taking mental notes on how they would or wouldn’t do x, y and z to give them a cleaning implement, waft a duster under their nose or a gardening tool (not wafted under the nose though – that’s a little too aggressive for my liking) or whatever and tell them to get on with it if it bothers them.  It’s OUR home – we don’t live in a show house and I have neither the time, energy nor inclination to bother about other people’s opinions on the matter.  Oh, and don’t get me started on the car….it hasn’t been washed for, oooh, about 2 maybe 3 months.  My goodness, the world will surely come to an end with that revelation!!! Whoops!…nearly had a mini rant there. Sorry.  Note to self:  thou shalt not rant too much.

I’ve learned that I don’t have to discuss my child’s additional needs with everyone – But equally, if I want to, and someone asks, then I can do so.  I choose my audience wisely though.  Some people may ask how my child is (and that’s lovely) and I can share what information I want to, but actually a few might not genuinely want to know – they may just ask through courtesy.  If I sense this is the case (glazed expressions are often a good giveaway) , then I say my child is ‘fine’ (sometimes even if she isn’t), thank them for asking and move on.  After Hannah’s surgery I couldn’t talk at all about our experiences for quite some time, it was far too traumatic.  Now I can and I realise it’s important to do so.

I celebrate every single one of my child’s achievements – no matter how small they are.  For children, like Hannah, those achievements are often HUGE and take a lot of patience, courage, concentration, time, energy and effort.

I breathe in…and breathe out…often!  – I think that’s probably quite important.

I don’t try to do everything at once these daysWhilst I’m pretty good at multitasking, I’ve finally come to the realisation that, sadly, I’m not Superwoman…and I can’t twizz round too fast these days, so I’m definitely not Wonderwoman either.  I have however, now grown eyes in the back of my head and can wake up 5 minutes before my child is due to vomit in the night…I think most parents at some point acquire this superpower!

I can be really creative and think outside the box If my child is unable to do something in a conventional way then I can think of alternative ways of doing things…not always though…but often. 

I ALWAYS wash my hands after a nappy change!I may be a little forgetful every now and again but I never, EVER forget this one.

I learn something almost every day from my child – Kids can teach you SO much and Hannah has taught me quite a a lot already.

I keep a memory box and scrapbook – enough said.

I write letters to Hannah – Not just on special occasions, but when the mood takes me.  I keep them safe in the hope that one day she’ll understand them and realise how much she’s loved.  It’s also quite cathartic for me too.  I guess somewhere deep down in my heart, I feel she might not have the capacity in the future to read and comprehend them, but hey, who knows.  I’m not giving up.  I can’t.

I adore my child’s little idiosyncrasies – it’s what makes her who she is.  Yes, it may be socially unacceptable to stick your fingers up your nose when you’re tired but she’s four years old and she likes it; it gives her comfort.  I also like her little ‘sing song’ noises that she makes constantly.  These noises may invite stares whilst we’re out and about but I’m learning to become desensitised to this. 

I have become very familiar with forgetfulness…even if I have made a list! Did I mention that already?  I forgot *smiley face*

I faced one of my biggest fears – childbirth – whilst pregnant I categorically refused to listen to people around me who took delight in trying to regale their gory (and quite scary sometimes) tales of their experiences.  Yes, ok I agree, it stings…quite a bit….well, a lot actually….oh, who am I kidding??….it HURTS LIKE HELL!!!! 

Organic lavender room spray stings! – Oh yes; I found this out pretty quickly after my lovely and supportive husband sprayed it in my face whilst I was in the throes of childbirth.  He thought he was helping, but didn’t read the label first, bless!.  It took my mind off the contractions for a few seconds though.

I’m taking my parenting role seriously and doing the very best that I can for my child – If you’re doing the same then don’t rely on others to tell you.  Pat yourself on the back…you’re doing a good job, keep going.

So, that’s that.  Part 1 over.  I hope you enjoyed.  Part 2 coming soon (hopefully!)

Thanks for reading…

Anne

This post is dedicated to my Sis…who used to nip me when I was a child in order to make me cry so that she could ‘love me better’…strange woman! For just being my sis and SO much more.  I love you. x

And

To Christine, my awesome BFF of, ahem, well….over 35 years – I love you. X

And

To Louise, ‘Big Boss’’ at The Legacy Rainbow House – because she wanted another mention!…and I’m happy to oblige.

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6 Responses to Parenting: What I didn’t know then – Part 1

  1. Entertaining read as always Anne 🙂

    Hope Hannah has recovered from her fall, Rebecca managed to do similar at 18 months and chip a tooth that had only just come through, I still remember that sickening feeling only too well 😦 x

  2. Jacqui B says:

    Phew its not just me then, I find wearing your knickers on the outside attempting superwoman quite painful especially when you accidently put on your child knicks due to the forgetfulness.. With your base ball bat and my contacts we could go all the way…. Where you might ask ummm guess xx

    • Oh Jacqui…HOW do I respond to this comment? SO funny. For the rest of the day (and probably beyond) I’ll now have a picture in my mind of you and I sitting in rather important meetings, looking stern and serious, advocating for our children and their families whilst donning our under-garments over our clothes. Perhaps we’d better rethink that image…but on the other hand, it would make people sit up and notice! xx

  3. soazfro says:

    WOW, I really am very impressed by your ability to write such long letters – well I know it’s a blog, but I take it as a letter that you’re sending ME every now and then! I have often thought about putting down in writing my own experience with Josh in particular but also with his little sister, never took the time to do it. I admire your honesty and the simplicity with which you tell your story – it’s also fun and entertaining. Hannah’s lucky to have you in her life!
    I look forward to reading you again soon
    Soazig

    • Hi Soazig. It’s really lovely to hear from you again. Thanks for taking the time to read and comment. I hope you and your family are well.
      I’m SO happy that you like my blog and the fact that you read it as a letter – and a personal one at that – is wonderful!…and quite flattering too. I do try hard to add humour here and there because, as you also know, there IS life after diagnosis.
      I’m glad I was encouraged by my friend Janet to start writing and so I’m now passing on the ‘baton’ to you to start your own blog. I bought a book to read up on what to do (which was great) but really, the best piece of advice I was given was to just “do it”…you’ll learn as you go along. Make some notes in the first instance (when you have a few minutes to yourself) and then just write and post as and when you have time. We have busy lives with our children so don’t put too much pressure on yourself to post. Let me know if/when you’re going to start and I’ll be your first follower!
      Anne x

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