Monthly Archives: October 2016

If it’s ok with you ……

I always wanted to be a mum. I fitted it into my unspoken life plan. At 28 I’ll have my first baby. That shifted to 30, personal circumstances. Then that massively shifted to 35. I made it; four days before my 35th birthday Aine was born. 
Initially, motherhood was what I thought it would be, despite the hospital appointments and surgeries and countless eye drops, I took to it like I knew I would. It felt perfectly natural, an extension of me. I soothed her when she cried, she was happy in my arms or in her crib. She was content. She really was content. 
Fast forward eight years and parenting Aine is like I’ve been thrown a curve ball. Parenting Ned is pretty much like I imagined it would be. 
When the littlest is sad or hurt, he comes to me. He snuggles in, he tells me why he is unhappy and I fix it with mummy love and kisses and verbal reassurance. 
When Aine is sad or hurt, the experience is utterly different. She yells, loudly, she pushes me away, she lashes out, she bites and pinches, she kicks and hits and worse of all, she pulls my hair. That really pushes my buttons. She will not be soothed. Right now she is sitting in the car on the drive, will not come in, meltsdown to epic proportions when you even suggest it. 
When the littlest asks to sleep in my bed, I say no, you have your lovely bed, and you need to sleep in it. He accepts it, reluctantly. 
When Aine ‘demands’ to (every night) I say no, you have your lovely bed, and you need to sleep in it, she screams, bites herself, or me, she hangs on to door frames refusing to let go. And she wakes the littlest, and this continues until I concede. She demands, we concede, it’s easier. Keeping the peace. Maintaining our sanity, well what’s left of it. 
When the littlest wakes in the night, a cuddle, reassurance that mummy will look after him forever, a forehead kiss and he drifts back off to sleep. 
When Aine wakes in the night, that’s us up for the day. She won’t cuddle, be diverted, settle down. She wants the tv, iPad, milk, a snack, to go for a ‘little drive’, wake Daddy or the biggest, and ring Grandad! There’s no fighting it, I just give in. And lie back down, hoping for sleep, whilst being periodically tickled, squashed, lay upon. So I’m tired and downright irritated!
It’s the same when she has to go somewhere she doesn’t want to. Namely school! The mornings are stressful, painful, and often very upsetting. I cry a lot, just tears, just for a short time, until I pull myself together. Thankfully the other two accept that they have to go and just get on with getting ready. 
As we are sat here in the car, the littlest accepts a little cheek kiss as he leans over to look at me, Aine however, well I wouldn’t try as a bite is likely. 
I can’t throw her a super birthday party, she’ll hate it, I can’t braid her pretty hair, I can’t take her to the cinema or a show, we can’t go shopping and buy pretty clothes or shoes, we can’t go for a meal, we can’t talk about cute popstars, we can’t snuggle on the sofa and watch a film. 
I guess what I’m indicating, with a huge amount of guilt, is that sometimes, lots of times, I cannot mother my child. She pushes me away. And my heart breaks. I cannot figure it out, fix it, make her feel better. It’s like she exists outside of the rest of the family, I am someone called Mum who cares for her basic needs. I know she loves me, she always asks for me when I’m not there, and I love her with all of my heart. 
All that said, we have just had a beautiful moment. The littlest was trying hard to please Aine with stories of climbing walls and kicking balls and jumping on trampolines and she reached over and hugged him and kissed his head. Despite the fact that seconds later she pushed him away and snapped her teeth at him, I’m going to cling on to that moment, if it’s ok with you. 

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Coffee and TV……

It’s 4.20 am. We are up and Aine is playing with her moulding clay and I am writing this. It’s not so bad, 4.20. Some of my colleagues get up at this time every day, and earlier, for a 5 o’clock start. However the day actually started at 2.10 with a whisper of those six little words that start the avalanche, ‘can you put the telly on?’ It’s not a question. It’s posed as a question, it’s definitely an instruction. I say no and the torture commences, I comply and I get the privilege of a short window where she might, just might, go back to sleep, or at least I do. 
After about ten minutes of hopeful dozing from me, I hear ‘can I have the iPad?’ Again, not a question but here I am brave, you’ll see why! ‘No, the iPad is downstairs!’ ‘Can I have your phone?’ I hand it over, hence the bravery. I had a back up plan. 
A few quiet moments …… ‘I can’t do the volume’. I use Aine’s actual words, the frequent words which allow her to communicate her needs effectively to us. I flick the little silencer button at the side that requires the small amount of finger nail that sadly she doesn’t possess as she has bitten hers to the quick. 
A further amount of peace, it’s maybe 3.00 am; I try not to check the clock too often as I cannot keep punishing myself!
The demands get more frequent. ‘Can I have some breakfast?’ ‘Can I have a drink?’; the water I give is sipped once and handed back; ‘can I have the clay?’ I am beginning to accept that she won’t be going back to sleep. And she won’t be going to school (stupid of me to make plans, albeit loose plans, for some time with a friend).  
At 3.50 am I know that I have lost all hope of returning to sleep as I hear ‘I’m going downstairs, I’m going, bye then, I’m going!’ I know she’s waiting for me to say ‘ok Aine’ and that she will repeat her intentions over and over until I do. And if I say ‘no’ the meltdown will start. And I’m just not in the place to deal with it. I give in. She wins. But it’s not Aine who wins, it’s epilepsy. The sneaky snake of a condition that gets into her brain and makes her difficult (read impossible) to manage. No manner of behavioural techniques work at this stage in the game. Deny her what ‘it’ wants and she will become vocal, she will be nasty, violent, self harming, and wake the household and the neighbours. You really can see why in ancient times people with epilepsy were thought to be ‘possessed’ by evil forces. It totally changes a person. 
So here I am, with a large cup of tea, the fire on, writing this in order to get it off my chest. 
One small bonus, MrM gets to have a couple of hours in an actual bed; the sofa bed in the conservatory having been his bed for the last, well probably, ten weeks! Not through choice, but necessity. Aine will not sleep in her own bed, her anxiety around this idea is so destructive, we just stopped trying. I can imagine how he feels snuggling into a comfy mattress, sheets fresh on today. He will be up in an hour or so for his relatively new commute to work, the downside of which being that he can no longer take the biggest one to school when I’m feeling ‘delicate’. 
So as my eyes hang heavy, and I’m carrying the remnants of Saturday nights’ migraine, I once again remind myself not to feel anger or resentment towards my child. It’s not ‘her’ that’s behaving so erratically. It’s all caused by the electrical activity in her brain; which is a bit like when two radio stations cross over and you hear the narrative of one and the music of the other. It’s a mess. 
It’s almost 5 o’clock now. I wish I had bought those Belgian biscuits on offer at work. They would be lovely with my cuppa. But I didn’t, and my tea is cold now. So, to pay homage to who were, in my opinion, the better of the pair in the battle of the Brit pop bands, I’ll settle for coffee and tv.