We have been dealing with our daughter’s complex epilepsy and developmental delay for over a year now. For over a year we’ve given Harper medication after medication; regularly seen a plethora of healthcare professionals from physio to speech and language therapy; taken her to music classes and water confidence; we’ve seen paediatric neurologists; discussed wheelchairs with a room full of specialists; contemplated everything from nursery to whether we would have to move house for better access and it’s all just so totally fucking exhausting.
I’ve been considering what I imagined life might be like by now. Don’t get me wrong, I know that having young kids is totally knackering and fulfilling and wonderful and sometimes just a bit much… But to have to deal with that side of things, the appointments and a healthy dose of worry for the unknown future of our daughter… I’ve found that lately I’m completely done in. When your daughter develops a mere few months in the space of a year it feels like things are permanently on hold.
However, lately this has started to shift. Lately she has been doing so very well. She can now sit unaccompanied, she interacts with toys, she delights at any kind of water play and if she had her way she would sit in the kitchen sink…All. Day. Long. She is developing her little personality, she has a list of favourite songs and she wants to lick everything in sight (she will roll herself the full length of a room just to taste the cold, sooty tiles on the floor in front of the fireplace!) Sleep is marginally better – which is making me feel giddy (there’s nothing like severe, prolonged sleep deprivation for an increase in shut eye to make you feel slightly dizzy and, at times, invincible… this is usually short lived). I made her a weighted blanket (OK, so it’s a pillowcase with sections of measured lentils sewn into it, but it bloody works!) and now she will go down a little easier when she’s been up in the night. She will lean in for a kiss and she flaps her arms in so much excitement when her Dad comes home. She is an absolute delight…when she’s not grumpy from lack of sleep or hunger or… you know how it is.
I’m daring to imagine a future for her, daring to think that things might be OK. But I’m really just dipping my toe into this idea, just allowing myself, with safe distance, to think that she may end up going to school where Finlay goes, to think she might not be that different from the other kids in a few years time. Again, we can’t know this and so there’s always self-preservation at play; always part of me that holds back and remains hesitantly optimistic. After all, I can’t be too disappointed if I haven’t allowed myself to think about the absolute best case scenario…right? No, but that’s what I keep telling myself.
What the last few months of gain has done though is allow me to allow myself some time. I have been so tied up in her complex needs that I haven’t even managed to get an hour to myself a week… Having thought about this a lot I concluded that I am the only person standing in the way of that time. I have reprioritised some things, made sure I take some time at the weekends but also during the week when it doesn’t have to be me. As ridiculous as it seems, organising some driving lessons and joining the YMCA gym (think less treadmills *shudder* and more yoga classes) has made me feel amazing. I am doing something that is completely for me – I’m not spending child free time food shopping, picking up after everyone else, doing laundry, cooking another meal – I’m lying on the floor having a lady play a gong to me while a take a moment – a very badly needed and overdue moment.
I know, shock horror, the concept of doing things that only benefit me, but as a by product makes me happier and therefore more tolerant of a 4 year olds incessant pestering and a 2 year old who is not in fact 2 at all. Before just being known as ‘mum’ I was a photographer, an academic, a university tutor and many other things besides. Since Harper’s diagnosis I have put what little time I took for myself to one side and I have become only carer, wife and mum. I know I’m still many of those other things, taking what photos I can on my phone and knowing that I will get through more than one film in my camera this year if I put my mind to it. The possibility of being able to drive in itself offers a level of freedom – I could use the car to get to appointments when my other half is working away, I could go out in the evenings when he is at home, I could see my nephew more often, I could be the driver so that I can make up 15 years of my other half being chauffeur. I could just go out for a drive and make the most of the small breaks I get – the possibilities are endless.
On a larger scale again I have even allowed myself to think about some time away from the kids, I’m thinking about going on a trip on my own. Not such a radical concept to many parents with two kids over the age of 2 (who can afford to of course and who have another half to hold down the fort while they’re gone, we are very lucky in that respect) but its pretty radical for me. I think this has also been sparked by the new chapter that is about to begin: our eldest starts school in September and Harper has been granted her Early Years offer of 15 hours of childcare, which we can now think about doing because she is sitting and engaging with toys and other people… So now I can FINALLY…potentially… maybe work/ do something for myself/ not get crawled over and demanded of… at least for a short time each day.
Of course I should have done much of this before now, I have been my own worst enemy, but I think it has taken coming to the end of what has been the most difficult year of my life to make me realise that I cannot continue at the pace at which I have been going. So here’s to the possibility of sitting on some kind of transport on my own, reading a book undisturbed and maybe even having a quiet cocktail somewhere new and unencumbered by small children….or even just a night’s sleep! Here’s to that.