Sorry it’s been quiet of late. Truth is life’s fair taking it out of me. The harder things get the harder it is to see the light, the positive, the things that keep you going. The temptation is there to focus on the difficult things, the stuff that makes you sad or, in my case, to feel yourself coming to something of a grinding standstill. Not happy, not sad, just suspended.
We do our stuff every day. Sometimes that means a heart wrenching nursery drop off, sometimes a fraught trip into town, other times it’ll mean staying home because today it’s just easier that way. I don’t know if it’s his unpredictability that ruins me the most. The energy he takes from me he can have. He always has.
So I sit down and think, I know, I’ll blog about this, get it out there, read it through. So I write some stuff and then I stop. Partly cos I’m not sure how to say it, partly because I don’t know what to say and partly because I don’t want people to read it. It sounds so utterly boring that I cant imagine anyone would want to read it. Or it sounds so very self indulgent, so ‘woe is me’ that I can’t stand myself. So I leave the few lines I’ve written in drafts, then worry because I haven’t written anything for a while.
I wonder if it’s his DLA form that’s causing such a blockage? It sits there on my desktop, half done. Every time I do a bit more I feel like I’m betraying him, talking only about the bad stuff. There’s no question that says “And what did the child do today that made you insanely happy?” or “How often does he ask you to jump on the trampoline with him?” It drains your soul. Is that what I have to give, in return for an allowance that enables him to live a life parallel to his peers?
Maybe once it’s finished and sent off I can stop feeling like I’ve forgotten to do something. Like I feel like I can’t move forward, stuck in this treacle of bureaucracy. But that’s asking a lot of one little form (it’s not little, it’s bloody huge!) Maybe it’s not that.
Maybe I’ll feel the weight lift when I work out how to get his hair cut. So he can watch TV without having to tilt his head back, his fringe is so thick.
Maybe it’ll be when I start losing weight again and stop feeling awful every time I look in the mirror.
Maybe it’ll be when I start getting some proper time to myself (two hours twice a week really isn’t cutting the mustard) and maybe it’ll be when his nursery sorts out his plan for next year.
Maybe it’ll be when he starts his speech therapy and maybe it’ll be when he calls me mama.
Something’s pulling me down.
I’ve got a feeling it’s called life.
Sending love and hugs! Things sound rubbish for you at the moment….I really hope things start to be better for you soon x
Thank you so much Kim.
(((hugs)))) reading your blog brought back so many memories of the early years when Luke was newly diagnosed. All I can say is, it does get better. My mantra has always been to take each day as it comes. Oh and I know what you mean about those bloody DLA forms! Xx
Thank you so much Chris. It’s so good to hear things get easier. Its everything that goes with the diagnosis that’s so draining! But we keep on trying.
Thinking of you hun x
For the record you don’t sound at all ‘woe is me’ you sound like a lovely mother under pressure and its good to let it out if you can.
I think the gov make the DLA forms ridiculously long on purpose so that less people claim. The people who need to apply for it neither have the time, energy or patience as its bloody ludicrous and extremely hard to paint a picture. It just another added pressure. I hope when you are able to get it done its a massive weight off your shoulders. x
I’m try and remind myself of a phrase when i’m struggling. Everything will be okay in the end. If it’s not okay, it’s not the end…
Take Care, Jo 🙂
Thank you so much Jo. I love that phrase too! Yes this form is a bit of a killer and like you say like I’ve got the time or the energy! Ahh well. I’ll get it done somehow.
You are a fab mama, and a fab person too. Maybe when the form is done you can give yourself and Oscar a really nice day somewhere to treat yourselves and also prove that there are some bloody fantastic moments too!
Yeah, that’d be nice. I don’t know why I’m finding it so desperately hard. Maybe it’s because I try not to focus on his “autism”, I try so hard to focus on “Oscar”, but the form just doesn’t allow that. Its depressing! I think a trip out would be nice. Thanks for being such a fab buddy!
I have the same feelings around every IEP meeting. I want to scream out loud. Tell me something good. The weight of everything can pull you down, but you are right. Look at all the little things that make you happy. There are so many!
Thank you so much. I try so hard to focus on the good stuff, being forced not to really sucks!
I guess it’s because as a parent we like to see the positives in our kids lives, who wants to dwell on the negatives? I hope you are managing to get it over with so that you can carry on with the happy! It’s just a necessary evil that is one step closer to getting you going giving Oscar the help he deserves. Maybe once it’s over you can write a huge list of the great things about Oscar?
Thanks petal, that is an awesome idea.