Parenting: What I didn’t know then – Part 2


I hope you’re OK.

To spare you from any rambling introduction to this post (me? ramble? Of course!) if you’re new to my blog (Hello and welcome!) it may be best if you read Part 1 (previous post to this) first, otherwise, what you’re about to read might not make much sense. Well, to be honest, it may not make much sense anyway, even if you have read Part 1 *wink*

Since my last post we’ve been to a family wedding – my nephew and his beautiful (both inside and out) fiancée finally ‘tied the knot’ and Hannah was their flower girl. Never a day goes by when I’m not a proud mummy, but I was exceptionally proud on this day. This photo was taken 20 minutes before the ceremony and what seemed like about 19 minutes before Hannah was dressed in her flower girl dress! I took no chances for her to get messy that day – especially as she was wearing ivory! I’m pretty camera shy (i.e. I don’t like having my photo taken) and am usually the one taking the photos but, aside from professional photos taken last year by my friend Janet, this (for me) is the most beautiful photo I’ve ever had taken with Hannah and I just had to share it with you.


Me and my girl…..who needs the spoken word when this pretty much says it all.

So, let’s get on with the post shall we?…I hope you enjoy….

I’ve no need to pay for gym membership anymore – ahhh! I used to LOVE going to the gym, and at one point became a little obsessive about it to the point where my husband suggested that perhaps I needed to take it easy on the weights as I was beginning to (and I quote) “look like an Olympic shot putter” – now, if you’re a shot putter, please try not to be offended…he said it, not me!…and if you are a shot putter, I’m sure your muscles/physique looks very, very nice! Hey, whilst I’m typing this I’m now wondering whether he was referring to a male or female shot putter – I never asked! Hmmm…Perhaps I’d better leave it there.

Right, I digress. Sorry. I don’t need to pay for gym membership anymore…not because I’m fabulously wealthy and have installed the ultimate high-tech gym here at Broccoli HQ, but because I get a pretty good workout most days. Right now I may look like I have chubby arms (see above), but trust me…that’s solid muscle! By virtue of her syndrome (and possibly because I’m petite) Hannah is a tiny tot and currently around the size of an average 2 year old but BOY is she STRONG! I mean, REALLY strong. I’ll give you an example: the night before Hannah had her cleft surgery she had to have all her pre-op procedures including a shunt inserted for the anaesthesia etc. She was around 10 months old at the time. It took 2 nurses, a doctor and her daddy to restrain and entertain her and safely (ish) carry out what needed to be done. All I could do was shut myself in the bathroom and sob uncontrollably…I was already extremely stressed at the prospect of Hannah having such a major operation…and of no use to anyone at the time.

Hannah also has a tendency to throw herself backwards without warning and wiggle (or try and climb up me!) when she’s being carried, so when moving and handling her my arms and back (and everything else for that matter) are in a constant state of anticipation and rigidity.

Hannah has no concept of her own or other people’s safety so I’m now reasonably adept at darting with the speed and agility of a gazelle when I sense danger is pending. Lugging mobility/specialist equipment, wheelchairs etc. also helps with the workout; as does getting Hannah dressed/undressed, dodging flying missiles (toys) which are usually propelled in my direction and lots of other things!

I think it was Shakespeare in a Midsummer Night’s Dream who wrote “though she be but little, she is fierce!”…If I didn’t know any better, I’d think he’d have been referring to my child!!

Even though I joke about all of this, my back and pelvis have sadly (already) paid the price and as Hannah gets older and bigger it’s not going to get any better. Sadly, this is the plight of thousands, if not millions, of carers all across the globe. So I’m not alone.

Inserting naso-gastric tubes was terrifying – but I was told (by a rather snooty little nurse) that if I didn’t learn, we wouldn’t be discharged from hospital – so I got really cross and then I learned – quickly!. For Hannah, drinking from a bottle/breast feeding wasn’t an option. For those of you who don’t know (and remember, I’m not a medical expert) an NG tube goes into the nostril and is then guided down into the stomach. Liquid can then be fed through a syringe which goes into the tube and into the tummy if someone is unable to eat orally. However, if inserted incorrectly, I was told that it can also go into the lung. If this is the case, and if you don’t aspirate and check the fluid with special pH tape you could fill your child’s lungs with fluid….a REALLY scary prospect. It took a lot of tears and courage on my part to learn this procedure. I hated that time; but my baby needed it…so I did it. It’s amazing what you can do if you really have to.

I’ve learned that life will probably throw you a lemon (or sometimes a whole box of them!) at any one time – Make lemonade, a gin and tonic, limoncello or whatever. Just DON’T give up.

I’m prepared to make mistakes – I don’t need anyone to point out to me that I’m far from perfect and I’m pretty confident after all these years of getting to know myself that I know almost all my faults. As parents/carers it seems that many of us psychologically flail ourselves pretty much every day reflecting on what we could have done better or what we ‘should’ have done (ooh! I really don’t like the word ‘should’ – maybe I’ll elaborate on that in another post sometime).  It’s easy to feel like a failure when you’re a parent and especially when you’re a parent of a child with additional needs. For a long time I felt disempowered…that others knew better…and I could have easily become fully dependent on their advice, assumptions and speculations. But now, as time has gone by a little, I realise that I know my child better than anyone else. I make informed decisions for her and as long as it’s in her best interest then I’m happy with that. But I will make mistakes, as we all will….so I guess I’ll just have to get used to flailing myself!

I take one day at a time – It’s nice to have plans but, for me, it’s better just living one day at a time….plus – and if you have a toddler then I’m almost sure you’ll empathise with this – getting ready to go out at the weekend may well just take until lunchtime and make you wonder how you actually get out of the door on time in a morning on school days! Why is that? Is it just me?

Crystal ball – Guess what?I don’t have one! Sometimes I wished I did though. Nor do I have any psychic abilities. As Hannah is non-verbal and no current means of communicating her needs I often have to guess her wishes and feelings. I’ll often get asked “why is she crying” or “why is she staring at her hands/fingers” or “is she pointing at something?” or “why is she making that noise”. Guess what? I. HAVEN’T. A. CLUE. Nope, not the foggiest. I just do what I think is right and hope that I get it right for her…or I’ll just have to flail myself again!!

My child is capable of things that no-one can predict – I won’t allow anyone, whoever they are (and even if they possess a crystal ball or a PhD!) speculating or making assumptions on Hannah’s future and what she won’t be able to do. She’ll be who she’ll be, without the aid of someone guessing…and I’ll be there (hopefully) to hold her hand along the way on at least some of her journey. We dream BIG here at Broccoli HQ but have to take tiny baby steps.

Our babies are so unbelievably precious – enough said…for now, at least.

Saint Anthony (Patron Saint of lost things??) – I nearly googled Saint Anthony just to double check that what I’d learned during my Christian upbringing was actually correct – but I didn’t want my bubble to burst on this one, so if I’ve got it wrong then PLEASE don’t tell me….or this may not work for me again. Most parents will probably tell you that if you have a little one (i.e. a child) in your home things tend to go astray…it may not be because your child is stuffing your car keys down the sofa/flushing your mobile phone down the loo or whatever, sometimes things just go missing because you have so much ‘stuff’ in your house and your home is so busy and hectic that things don’t get put back in the right place. Saint Anthony never ever lets me down….I just ask him to find it and eventually it’ll pop back up from somewhere….just give it a try!! Sometimes I also feel lost….perhaps I’d better have a word with him…

Why are children fascinated with doors? – or is it just my child? Examples follow:

Door is open – child wants to close it

Door is closed – child wants to open it

Door is partially closed – child lies on her back and kicks door repetitively so it sways to and fro, violently picking up speed (whilst child is ignoring mummy’s requests to stop) until its hinges become strained.

Door is doing nothing, just being quiet and enjoying a rest – child wants to reach for the handle and swing on it. Repeatedly.

Door looks lonely – child thinks door needs some company – child bashes door with hardest plastic toy possible. Repeatedly.

Patio door is nice and clean – child thinks “hmmm….that door needs decorating”. Child licks glass. Child wipes sticky hands all over glass.

Poor door – I can empathise!! Sometimes I feel just like that door….

I’ve got used to being late – and I’m sure everyone else has now got used to me being late too….sorry! It appears to be one of the clauses within the parenting job description.

I may now unknowingly leave the house with some of my child’s breakfast stuck in my hair or strange and unknown substances on my clothes – forgive me if you’re the one I’m planning to meet.  Just point it out to me after you’ve checked your watch and rolled your eyes at my unpunctuality and I’ll sort it.

I don’t wrap my child in cotton wool – I want Hannah to have all the magical experiences that I was given when I was a child, and more. I need to allow her to spread her wings and sometimes, whilst it can be scary for me, I have to let go a little to help her achieve this. Plus, cotton wool outfits are SO ‘last year’ and get a little bit ‘clumpy’ when it rains!

I’ve now had to get used to being accompanied to the bathroom – whilst it’s nice to have company, there really are times in life when privacy becomes an absolute luxury!

When people reach out to you – Have you ever felt lonely in a crowded room? I know I have. Lots of times. In fact, sometimes I still do. Sometimes it can feel a little like this when you care for a child with additional needs/rare genetic syndrome (like Hannah).  I’m lucky to have THE most amazing friends who accept us just the way we are, would be there for me in a heartbeat if I ever needed them and who will also often give me a good ticking off and say “why didn’t you phone me instead of struggling” (I love you all SO much). There are a tiny handful of people who I thought were friends who’ve drifted away since Hannah’s birth, probably because they didn’t know what to say or do or maybe we just had nothing in common anymore. I understand (sort of)…and I’ve let them go, without any ill feeling whatsoever. But ideally, what they could have said is “look Annie, I’ve no idea what to say, but I’m here” and that would have been fine. So, if you ever have a friend who’s in a similar position as me or going through a really bad time, and you love them…try and remember what I’ve said…just don’t drift away, just be honest…they may need you one day!

That said, I’ve since met and continue to meet (and become friends with) some of the most amazing, kindest, nicest people on our journey. We’ve also had people from near and far providing support towards financing Hannah’s conductive education therapy and the fact that people who’ve never even met my little girl would reach out to help her has been quite overwhelming and heart-warming.

But what also tugs at my heart is when people just reach out…a genuine smile just for Hannah from a passer-by, a kind word from the guy in the coffee shop who came over to me on his way out and said he thought my daughter was “beautiful”, a hug from someone when I’m feeling at my most vulnerable (although, be warned, I may just cry if you do that!) or a new friend who just texts and says “hi…I’m here if you need a chat” – absolutely priceless!!. Whilst this journey so far has, at times, been a rather difficult one, I truly feel so fortunate to have met all of these people…and our paths may never have even crossed without Hannah.

I absolutely LOATHE the term “slap up meal” – clearly this has no relevance whatsoever to this post but I just thought I’d throw it in there. *mischievous smile* I DO really loathe it though. It’s totally nonsensical. How can you possibly ‘slap up’ a meal? Is this turn of phrase just used in the UK or globally? Does anyone else think the same?…or is it just me? Oh yes, and whilst we’re talking about random stuff, does anyone think that coriander tastes like soap?…my friend Dilan thinks the same, but maybe he and I are alone on that concept. Oh, and another thing….why do people paint “GOURANGA” on motorway bridges!?! #baffling

Right, that’s all for now.

Thanks so much for reading. I really do appreciate it…and I hope you enjoyed. Part 3 coming soon (hopefully!).

Anne x

This post is dedicated to the ‘Newlyweds’ Chris and Gemma. For being so thoughtful and a whole lot of other stuff too! I’m REALLY proud of you both and love you lots. xx

This entry was posted in Parenting, Syndromes/Special Needs and tagged , , , . Bookmark the permalink.

2 Responses to Parenting: What I didn’t know then – Part 2

  1. Love that photo, a beautiful moment captured – and don’t you both scrub up well 😉

    Gouranga – it’s a Hare Krishna word meaning be happy (I think, but if not something very similar) – no idea why they paint it on motorway bridges though x

  2. Gemma Johnson says:

    Love you too 🙂 some of this sounds like you are describing Oscar. No offence hannah:) xx

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