Let me tell you a secret. I am not looking forward to this week. Not one little bit.
There are the four medical appointments for Boo, but that’s not it. To be honest, that’s fairly normal for us. No: it’s that this is the week my work pattern changes in quite a big way.
I have been back at work since May. It’s been hard, but also good to have something else to focus on and, honestly, I have no choice but to work if we want to keep our house in our town and keep Sissyboo at the school she’s at. But I have been unfeasibly lucky so far. I went back on a phased return initially and then was on a sabbatical of sorts that meant I focused about 80 per cent of my effort on things that could be done at home, electronically or on Skype. I’ve worked long hours, but flexibly. It’s worked. Mostly (although working through the night to make up for time lost to appointments can be grueling and is temporarily stymied because of the Boos’ sleep problems). But I am still standing anyhow, which is surely one marker of success. Some days I feel it’s the only one we have.
And I have a flexible working contract (thank you, lovely employer) so that I can still work a couple of days a week at home on days when Boo often has appointments. But on Tuesdays and Wednesdays I will now have a 130 mile round trip commute by car. I will work late in an office. I won’t be able to pick Sissyboo up from school. I will spend even less time with her and with Boo. Goodness knows when all her homework will get done or how we will get him all the standing frame time he needs.
And just as this change kicks in, we have to get used to another major adjustment: the absence of Homestart in our lives.
If you have read this blog before, you’ll know I’m a huge Homestart fan. Homestart entered our lives when things were terrible and no one else seemed able to help. I was severely sleep-deprived after 3 months of no more than 3 broken hours of shuteye a night and I was severely depressed. The world felt like it was made of cotton wool. I trudged through it with leaden feet and bleary and tearful eyes every day, but was disengaged from reality. I couldn’t keep on top of the house. I needed quality time with Sissyboo.
Homestart gave me something priceless. Three hours a week of respite, of a friendly and sympathetic ear can work wonders. It did for us. Sissyboo’s mood lifted. Things were still frantic, but the oasis of calm 180 precious minutes a week provided was something I always looked to to get me through the tough times.
We are in a better place now than in the darkest days of infantile spasms and steroids, and others need the service much more than us. So our volunteer visited us for the last time before Christmas. We are grateful for all Homestart has done for us and I will do all I can to help raise awareness of the amazing things they do for vulnerable families with young children on this blog and anywhere else I can.
But I am also very, very sad and somewhat at a loss without them. We are not coping fantastically at the moment. Sissyboo misses her afternoon with Mummy each week. She is very moody (she is just not her really, which is sad to see) and is not sleeping well. Boo’s sleep is, as always, much worse still. The atmosphere at home, especially in the turbulent evenings or desperately-seeking caffeine mornings can be tense. It can all feel a bit relentless.
But work, as one organisation who helps families like ours (but wasn’t in a positioning to help us) said to me, is my respite, surely? It has to be, was my response. And that organisation had a point. I am lucky to work. To be able to work, I mean. I don’t take that for granted and know of many who would welcome my problems in this respect.
But let’s be honest, here. Work is not respite. It’s a sometimes diverting, enjoyable but stressful and multiply demanding distraction. And while I wouldn’t change things (I think…), work takes with one hand (quality time with Sissyboo and what little energy I have left after all the therapies, anxiety and worry) what it gives with the other (a roof over our head). My colleagues are lovely, in the main, but they haven’t got a clue what my life is like.
Work is a lie. It’s a place where I cover up the reality of my life rather than a place where I truly escape it. That’s an important difference, I think. It’s exhausting leading this double life.
But I have to try to ensure that the new changes ahead on the work front don’t eclipse the knowledge I gained from our experience with Homestart. Little things, like the value of drinking a hot cup of coffee without distractions; the importance of taking a breath to catch up with myself; and above all, the importance of making time for our daughter. We don’t need formal respite to tell us these and similar things.
Now all I need to work on is how to make them happen, but for your sake, Sissyboo, I’ll try. I promise.