The question mark in the title of this blog post is important. This isn’t one of those posts I write when (I think) I’ve worked something out. No: it’s a post trying to figure out something that I have been mulling over for weeks with absolutely no success whatsoever. I am genuinely asking you, blog readers (all three of you) what you think. Because I can’t work this out. All I know for sure is that, one way or another, I have to.
You see, when your life become a battlefield, as it sadly but inevitably does when you have a child with additional needs, conflict starts to become the norm unnaturally quickly. You battle to be listened to. To get onto the waiting lists for the right clinics. To get to the top of them. To get the right equipment. And the right support for your child. For your family. For you.
Few of these things happen without conflict. And these battles are not only external. Often you find yourself in conflict with yourself. Knowing when to shout up and when to pipe down, when to stamp your feet or hold your tongue…These decisions can be tough calls. You are at war with yourself and your natural inclinations several times a month. Or week. Or even day. You tie yourself up in knots.
I am a mess.
And then there is the biggest battle of all, With the clock. That tyrant time.
24 hours a day. What a bloody poor bit of planning that was. Days need to be at least 30 hours long, even when your child’s additional needs deprive you of at least 3 of your promised 8 hours sleep a day. How else are you supposed to work and shoehorn in 5-7 appointments a week (we have 5 this week, 5 last and 7 the week before)? And all the daily therapies? And look after your home (yes: I found out I forgot to renew the breakdown insurance in the most annoying way possible and just realised Sissyboo’s PE kit for tomorrow has not been washed). And make sure everyone eats?
The last 2 weeks have been unusually bad. We have had a host of unforeseen and upsetting problems at Boo’s nursery. (I think things are improving and will blog about them if and when I can be sure that’s the case.) The Grumposaur has been away for over a week of the last 3. I have been snowed under at work and working beyond midnight regularly. I have had to take Boo to 12 appointments. I have had to get everything ready to apply for statutory assessment, which three people at our LA have told us will be in vain as Boo is too young in our LA’s, if not the law’s, eyes. I am sleep deprived and my back is feeling the strain on the week I have been told my NHS physio has to end (I’ve had the allocated 5 sessions). In the local park today a mum in the playground asked if I had been in a car accident…
I don’t mind telling you, since there’s only 3 of you reading this after all and I know you won’t tell anyone, that I am on my knees. I cannot keep this up. I am exhausted. Mentally, emotionally and physically. I look grey. I look tired and every bit as old as the 38 I will be later this week. Much more, in fact.
There are too many balls in the air. In fact, most are on the floor at the moment. The battle isn’t conceded yet, but I admit that I feel like waving the white flag. I may feel differently tomorrow, but today, like yesterday, I feel I can’t carry on like this.
I can’t be this tired and worn out and be all I need to be for Boo. And that battle, is not one I can give up on. I have to fight for him. If I don’t, who will?
I’ve come to the conclusion that the only way to win this skirmish is to give some ground. But which ground? And how?
I can’t give up me time. Other than my running (which I am doing to raise money for a charity that has helped us and at the encouragement of my physio, who keeps emphasising how physically fit I need to be to be Boo’s carer) I don’t have any. Other than writing this blog. And even my blogging time has been cut drastically in the last month. I don’t even make time for essential things. My Captain Caveman hair (yep: no hair cut in 10 months) is the new in thing, right? And I don’t say this with an ounce of self-pity, by the way. This is just the way things are and have to be.
Boo’s therapies and appointments are non-negotiable, as is the lamentably measly time I spend with my lovely daughter, whom I miss so much even though I see her every day.
And I can’t spend less time overseeing what a lovely American friend of mine in a very American but astute way calls ‘life management’. The house is just about ticking over (no breakdown cover and emergency laundry aside) but could easily turn into a health hazard with time cut from the paltry few minutes a week I spend trying to keep it going. No: can’t shave minutes off there.
Which leaves work, which matters so much to me in so many ways and which I so want to keep hold of for all of us Boos. For goodness’ sake, I have spent so much time in the past few weeks adding my voice on the blog, in the media and even in Parliament to those others talking about hard it is for parents (and specifically for mothers) to work when they have a child with additional needs.
I want to try to keep going, to fight back at the pressures to stop working. But I can also see that work is one of the few areas in life where I could just stop doing something. The consequences would be drastic. We would lose our home. We would likely have to move out of area. Our daughter would have to move schools. And I would lose another piece of me.
Plenty of people have done this before, of course. Are doing this right now. Again, there’s no self-pity here. Just utter bewilderment.
I don’t want this to happen, but increasingly, I feel it might have to.
So there’s my battle. A choice that may get decided for me. Do I battle on, or give up this fight, knowing that if I do give up, I would just be trading one set of fights for another.
You have to pick your battles, I guess. But which ones are worth it?
I think they all are, in truth. But I’m not sure I have the energy to keep fighting them all.