When to Admit Defeat?

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.

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12 thoughts on “When to Admit Defeat?

  1. StephsTwoGirls

    Sadly I think you know that no-one else can answer this for you 😦 but we get it, we really do. Not sure it’ll help to say that it’s that good old rollercoaster, and that there will be another ‘up’ time, even if it doesn’t feel like it right now. After reading the first half, I instantly thought ‘I know, she’s tired, she needs a break’, which you then went on to say. But I also know how hard it is to get a break, especially from the appointments. Ask are they all necessary though? I know someone who cancelled all appointments for 2 months and it just gave them time to regroup – nothing bad happened. I know some are vital, but maybe some can wait? Hope you have good local support though, and don’t be afraid to tell people how it is now. Even the offer of a cooked casserole might help, just a bit. Ignore the LA people who say assessment will be futile; they are generally wrong and very naughty for saying that. It was said to us of course, and hundreds of others who were then put off applying for that important statement, makes me very cross. Good luck with your choices. Nothing hasty x

    Reply
  2. Kasia

    Thank you for this post. I feel for you as I am like you, exhausted beyond belief.
    Statement at 3? Yes, it is possible although they will tell you otherwise! Do not listen to that.
    Child at 3 years of age can be statemented. It is in the SEN Code of Practice.
    Good luck.

    Reply
  3. Michelle Davis

    This is such a hard decision for you all. Having ‘known’ you for a while, it does seem as if work gives you the chance to be ‘you’ and I imagine that is especially needed when you are parenting a child with complex needs. I know I already said this on Twitter but maybe reduced hours/career break would help? Or as Stephs 2 Girls said above, could you give yourselves some time without any appointments – maybe block out a month twice a year, and just do not accept appointments in those months? I know that means Boo will have to wait a little longer for some appointments but you may decide that the benefits to you all of having a break outweigh a couple of weeks longer for him. And also – I know money as always is a factor here but can you outsource some of the day to day stuff – cleaning, basic grocery shopping, ironing? Anything that doesn’t benefit you is fair game (in the way that running, blogging and work so clearly do). But if you do that, for goodness sake don’t just fill the time with more jobs!!! (says the person who would do exactly that).
    Much love to you and the Boos xx

    Reply
  4. Jane

    I feel for you so much, I was the mum that had to give up work, well going into the office anyway. I do some stuff from home now and then. Is this an option in your office? We don’t have to do the daily thearpys like you but the appointments! This is an appointment week for us, at least one every day. I have no idea how I would do this all and still travel into London for work. I do miss work, the people mainly but this is the way my life has decided to go. Money of course is an issure and we now have to rely on some benefits, this was hard, but we have bills we need to pay. On paper we couldn’t afford for us to make this change, but we did. It’s not easy but I’m mentally dreained now and that’s without work commitments! Sometimes you have to take a very scary leap of faith!

    Reply
  5. Anonymous

    Would it be an option for you to do one or two months without working, or working much much less, in order to “recover” a bit mentally and physically, but not to take any drastic decision yet

    Or could your husband or the children’s grandparents help / take over therapy for a while / or in part?

    I’m facing these dilemma’s every day, i have a situation that is very similar to yours

    I dont live in the uk but will be visiting friends in london for a few days soon, and i would love to take a train to meet up and chat with you about all this

    Let me know if this would be feasible

    Good luck

    You are not alone

    Reply
  6. Amy Mouse

    Hello, I haven’t commented for ages but I’ve always read your posts and I feel for you. When Alice/Wriggles was about Boo’s age I personally did give up work. I reached your point and my mental health got to a point of no return; I first was signed off my a terribly sympathetic GP for a month and when that gave me a taste of one less battle, when voluntary redundancy was mooted I grabbed. My situation was different financially to yours; even working I was reliant on tax credit top ups and have never had a job I would call a “career”. I always knew from when she was born that because I hadn’t achieved great work potential or financial solvency, both those things had to give until she was older. I’m not proud of it, but things are getting easier with time and the freedom (welll…) has allowed better battle picking and to let some battles slide. Whatever you decide, keep telling yourself that the only thing that is forever is family: alright it is nowhere NEAR that simple, but when it boils down to a crisis point you have to have an element of black and white. Huge hugs xx

    Reply
  7. mylittledreamworld1

    Oh gosh. You have to do what’s best for you and your family. But giving up work doesn’t mean losing yourself. You might just be finding out something new about yourself. It would be hard losing your house and moving, but if things are so difficult then maybe that decision is already made. Maybe now isn’t quite the right time but there will be a time when it is right.
    Good luck xxx

    Reply
  8. Laura

    So sorry you’re going through this. What a crap time. I hope it gets better soon. Thank you for being honest, it’s refreshing. Big sloppy American internet hugs 😉

    Reply
  9. nikkstar

    I have a bad habit of offering solutions, and I apologise for this as I am not sure this is what you need. At each point in our lives we always give up something, you have to be sure that you are happy with the compromise that you are going to take to make peace with what you will get in the future.
    Solution idea: I am not sure how it all works over your way, but instead of giving up work is there a respite or nanny service that would help Boo go to appointments? Or have appointments come to you? Over our way appointments come to you more often than not, so it is a little easier to manage. Or what about a housekeeper/Mother/Mother-in-law/Cousin/Auntie…? That could tick something off the list and it not being your work. Personally, I am a rubbish housekeeper so anyone could do a better job, random guy from the bus stop for example.
    Good luck with the decision making, I know it sucks.

    Reply
  10. lookingforbluesky

    I really really feel for you, especially as I was lucky enough to be able to work part time, so was never in quite this position – working past midnight and doing everything else you do? That really doesn’t sounds doable for long, hope you don’t mind me being blunt. I’ve had to learn the hard way to look after myself, and even doing that I get scary illnesses and symptoms from time to time. The hardest thing about your situation is that you probably need time to think, and that’s exactly what you don’t have xx

    Reply
  11. Katherine Kowalski

    Another ball dropper here signing in for duty 😉 My latest gaffes have been forgetting to buy car insurance and letting the house go to such wrack and ruin that today I found a severed mouse head on the dining room floor. I don’t want to make light of something which is so, so huge though… I guess it’s gallows humour in the face of not knowing what on earth else to do.

    What I really wanted to say though is that time and time again, my fellow SWAN mums with older children have said the hardest time for them has been between ages 2 to 5 because there is just so much going on with therapy, trying to get schooling set up right, and life adjusting to having a growing child with complicated needs as opposed to a baby. When I’m dropping plates left, right and centre I hold on to the thought that it might, in some ways, get easier when our boys are just a year or two older. I hope, at least… xx

    Reply

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