Flexibility has become my watchword in the last two years. When you’re life is chaotic and unpredictable, there’s no other way to be really. We have to roll with things (like the fact Boo still can’t roll, for example). We have to adapt when things go wrong and equipment breaks, or when things get ordered and then funding gets pulled at the last minute. (Yes: this just happened. Again.)
And because I am attempting to keep my job and home through all this, I have to work flexibly. It’s the only way our lives can work. I work at home in the day as much as possible and work at home 5 nights a week to make up for time spent in appointments or doing therapy with Boo. I am very lucky that my employer lets me do this. Very lucky, indeed.
But being flexible also means bending to other people’s wills more than you would like. Because I can be flexible people expect me to be, which means not living up to other people’s expectations is a constant problem. My diary is always supposed to give way to someone else’s even when doing that will make our lives much harder. Being flexible doesn’t mean my days are any longer than anyone else’s.
But the biggest problem with all this flexibility is the blurring of the lines between my roles as mum, carer and employee to the extent that in my head I am all things at once all the time. Even when it’s not convenient in the least.
Like yesterday. For the first time in 6 months, I had no appointments for Boo on a Monday. He had a nursery day and I was going to get loads done. Loads, I tell you. And I did, for the first hour of the working day, anyway.
Then the post arrived. It contained a paediatrician’s appointment notification (which we can’t make, because it clashes with another Boo appointment). Then there was the letter confirming the LA’s decision to proceed to assess Boo for a statement of educational needs. This was great news, but, as I explained yesterday, the timing has presented all sorts of logistical complications, which necessitated two phone calls and 6 emails, not to mention facing up to the lengthy document we (by which I mean I) need to write. Then Boo’s trike quotation came through (yay!) and I phoned up lots of charities, all of whom said they couldn’t fund us for various and totally understandable reasons.
What I should have done was put the post aside and not opened it until I scoffed down lunch. But I couldn’t. The LA logo on the envelope would have taunted me until I did. And in my experience, the sooner you rearrange medical appointments you can’t make the better. This one is already 3 months overdue because the clinic is so oversubscribed.
After all the post-post admin I set down to work. And all I could do was cry. Cry about what a mess our life can be. About how stupid I was to manage to let statementing coincide with the school hols. How much I want Boo to have a trike and how I wished my savings pot was bigger. How much I wish we didn’t have so many appointments. How rubbish a Mum I was for thinking that.
I gave myself a talking to and tried to get my head back into the day job, knowing that every minute lost would be added to my working evening and I was so tired already. And then the phone rang. It was the OT ringing to tell me something I already knew and to confirm that she had forgotten to do something she had said she would do a month ago. Enough!
Flexibility is the only way I can live my life. And let me say again, I know I am lucky I can live like this. But when your home is not just where you live, but your son’s therapy suite (my feet are resting on his physio roll as I type this) and your office, it does present certain problems.
I wish I could get my head straight. I wish I could be flexible enough that I could bend without periodically breaking.