Monthly Archives: February 2017

Self awareness. A work in progress …….

Today I’ve had a thought. Not a life affirming or life changing thought, but certainly one that has changed my feelings, about how I see myself. 

I’ve always considered myself a mum to a special educational needs child. And I am. Aine has learning disabilities, language issues, processing issues. She is quite a way behind her peers in so many areas.
After a tough day yesterday, I’ve realised that I am in fact a mum to a special educational and medical needs child. Her mobility is impaired. She needs help, she has very little independence. She has epilepsy that causes far more than the devastating seizures she experiences. 
I don’t think this is news to anyone else around me. I’m not telling any of my family and friends this, even therapists, medics or strangers. They all know this, don’t they? Is it just me that didn’t realise?

We have had a bit of news about respite recently. Up until now we have had a dozen nights a year respite, providing by a wonderful charity, and Aine adores her stays. We’ve now been ‘awarded’ for want of a better word, a lot more via social care. And I’ve been a little uneasy about it. I’ve had to look at myself and ask why. 
There are obvious reasons, my child will be cared for by someone I haven’t yet gotten to know and trust. But that’s a small reservation. I know that we have the opportunity to build a relationship before any stays take place. I need help to care for my child, no momma wants to feel that. But I have come to terms with that over the years. It’s a reminder yes, but the feeling is fleeting.
I couldn’t quite find the reaction, the emotion. 
Yesterday, it came to me that I was embarrassed about it. That the unease was embarrassment. I knew that I felt surprised that an assessment had deemed these many days as a basis, but why embarrassment? I am embarrassed to tell people how many hours are being written into our plan. Like I’m bragging, like I’m in some way ‘lucky’. Like I have faked the need some way and and now I have all this space, what will I do with myself, I get time off when other mums have no time off. I should say that no one has said this to me, this is my own inner monologue. Damn you conscience!
Then yesterday happened. Two serious seizures in one day. In the night, the quiet times, I saw myself through my Dad’s eyes. He was there when the first one happened. How I came into the room, took control of the situation. Put her into position, assessed her, issued instructions to the biggest. Get the meds, get the SATS monitor, get the phone. How I assessed when to give the medication, how I gave it, how I assessed when her seizure was stopping, how I cared for her afterwards. And how I cared for the needs of the other two as well, because it’s scary to see your sister so poorly and your mum behaving so differently, and they need support too. He saw his little girl handle this. (Not that he would say this by the way, but I know he felt it.)
I’ve never debriefed like that before. I have always said ‘it’s just what you do’. I have often said ‘I could have handled that better’ (as someone recently pointed out to me I’m very self aware and can be self critical). And I felt pride. Proud that I can handle a medical emergency. And not every mum has to deal with that. Not regularly anyway. 
For the last two nights, I have barely slept. I am tired, exhausted, run down and in desperate need of a break. That’s why it’s been deemed necessary to set our respite needs so high. Because this happens at least once a month. And every time I bounce back. But every time I don’t bounce as high as the last time. And soon I’m not going to bounce, I’m just going to flop aren’t I. That’s why. 
So I don’t need to feel a failure, embarrassed or needy. I need to be thankful. Thankful that the system hasn’t let us down, that it’s recognised a need and has funded the support. Thankful that there are human beings who want to support people like me, families like us. I need to see us like other people see us. 
I need to see the benefits that this future has. For me, my family, my girl!
I need to stop being so humble and to praise myself like I praise others. See in myself what I see in others. I suspect it’s going to be a long work in progress …….


Bless you ….

It’s so easy to get bogged down with the negative. Each night I try to find something to be glad about from the day. My little ‘Pollyana’ moment. Some nights it’s easy, some nights it’s impossible and some nights it’s somewhere in between. 
Aine is a challenge. I can say challenge because, so far, I’ve gotten through everyday. Battered and bruised, physically and emotionally, but still standing. There are these little things that get me through and offer that ‘ah’ moment that bring a mum to any child back to the here and now, remind us of that all forgiving love we have. 
Yesterday I felt poorly. I had to go to work. I hadn’t had enough sleep because Aine is in my bed with me; she gets very anxious at being alone. I was, without any self-flagellation, feeling sorry for myself. I was in the bathroom, she was in bed playing on her iPad. I coughed. I heard ‘bless you mummy’. I smiled. ‘Thank you baby’. She does this every time we cough or sneeze. She doesn’t differentiate. She just wants to acknowledge that she’s heard you. That was an ‘ah’ moment. 
There are other things she does that are so cute. She does the opener to In The Night Garden. ‘Round and round, a little boat…’ whilst tickling your palm. When I see her after a brief separation she says ‘I love you and I really missed you’. She says ‘I like you top and your trousers’. She smells my neck after I have put perfume on and says ‘hmmm, divine’. After a meltdown she says ‘I’m sorry’ and when you say ‘what for Aine’ she says ‘I don’t know’ but she knows she’s sorry and she won’t rest until you say ‘it’s ok’. 
Out and about she talks to everyone. She waves to everyone. Most people talk back. A recent trip to the hospital, routine appointment, saw her holding court with a rather large family. At the time to leave, she knew all of their names, what their favourite colour was. Had whispered in each of their ears, shook their hands, tickled them, listened to their watch and maybe kissed their hand at the same time. She’s made them jump with ‘boo’. And made them make her jump. At her best, she lights up a room, at 50% she touches someone in the room, and for balance I will add at her worst, she can empty it!
I’ve not blogged for a while because I was worried my tone was negative, whiney, and resentful. But I guess ‘my’ blog will reflect ‘my’ frame of mind. Where I am at that point in time. 
It’s hard, you know that. I’m pulled out. We live a life we didn’t expect, weren’t prepared for, and changes constantly. But we have this gorgeous and engaging linchpin. We are all revolving around her. No doubt. She sets the tone, and resets it. She determines what we watch, where we go, what we do, in order to keep things even, and we have all learned how to behave to keep her happy (mostly). She makes us laugh. She makes us cry. Sometimes sad tears, angry tears and the best of all tears of joy. Because she’s our Aine. And we adore her. 
As I’m writing this, hiding in bed with a sore throat and aching legs, MrM coughs. ‘Bless you dad’ I hear. 


 It’s been a while since I’ve blogged. I’ll be honest, I’ve not been in the greatest shape mentally. This time of year is a struggle. February is the anniversary of my mum’s death. I remember her struggle at the end. This formidable woman lying motionless with the odd flicker of recognition on her face. I remember my dad, my brother and I, caring for her. Doing the things she could no longer do for herself. Tirelessly. Even without stopping to think about this time in our lives, we all ‘feel’ the memories at this time of year. 
I recently saw a wonderful man also robbed of life, his loss has left a huge gap. I saw his wife caring for him. Ensuring, in his final days, he was as comfortable as possible. 
I see me, my friends, working not far off 24/7, caring for their children who have extra needs. We sleep with one eye open; some have nights interrupted by unbreakable behaviour, some by medical emergencies, but still achieving far less rest than is healthy. 
Most of us receive carers allowance for this. £62.10 a week. On one hand I think being paid to care for my child seems weird. But on the other hand I think if I couldn’t care, or wasn’t prepared to, let’s look bluntly at this, how much would it cost the state to do this. Certainly more than 37p an hour. In order to top up my ‘income’ I work of an evening and weekend. I’m allowed to earn £110 on top of this benefit. Working more hours would be impossible. Working these hours is challenging. 
I won’t tell you that I don’t resent my role sometimes, I’m not perfect, but I can tell you that the love I have for my girl gets me by. I will tell you that I’m resentful that our state does not recognise the importance of the carer. 
According to NHS England, 
‘Increasing hours of care often results in the general health of carers deteriorating incrementally. Unpaid carers who provide high levels of care for sick, or disabled relatives and friends, are more than twice as likely to suffer from poor health compared to people without caring responsibilities, with nearly 21 percent of carers providing over 50 hours of care, in poor health compared to nearly 11 percent of the non-carer population.’  
Our NHS recognises this. I have mental health issues directly linked to my caring role. I pay for my prescriptions. £8 plus a month. According to the NICE website the actual cost is £1.02 per month. Even with the cost of seeing the GP one time, dispensing, procurement and delivery costs, I’m still not getting a great all round deal. 
I felt compelled to write this today. I found my mojo after reading how a friend was reported to facebook for inappropriate language, incidentally not at all inappropriate, when all she is trying to do is to promote her new business, working from home, during unsociable hours, to allow her to be a full time carer for her daughter. She, like me, gave up a career to become a carer. You see, not everyone gets the struggles, and the reason why is because we don’t let you see them. When you ask how we are, you don’t really want to hear our ramblings any more than we want to tell you. We want to cope as much as you want us to cope. There is a huge misconception that us families receive ‘loads of help’ as it was put to me only last night. We don’t. We really don’t. It’s so far from the truth. And that’s why I’m blathering on. But I’ve done a little bit more than blather. Only a little bit. I’ve tweeted the chancellor of the exchequer today, yes actually tweeted (I needed some help to get it right). I wish I could campaign more. I wish I had the time, the energy, the faith and the know-how. But for now, if you appreciate the role of the carer, maybe you could tweet him too ….
.‪@PHammondMP‬ Research by ‪@CarersUK‬ shows ‪#carers‬ contribute £132bn to UK economy. it’s time to ‪#valuemycare. ‬
Thank you for reading, it means that you care ❤️