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 …….