Of the three paediatricians Mr Boo sees I have a clear favourite. One is very professional and smart but a bit inscrutable; one thinks bedside manner is something you buy from an IKEA catalogue (enough said, really); but the third (a community paediatrician who Mr Boo will see for many years to come) is fabulous.
No one likes to be told there child is not where they should be developmentally even if this is glaringly obvious. But she manages to impart this news in a positive and reassuring way. For her, Mr Boo is clearly not just a case or a list of clinical puzzles and diagnoses; he is also, and above all else, a child with his own unique personality. And instead of dwelling on what he can’t do she emphasises not only what he can, but how remarkable it is, given his medical history, that he has accomplished any of these things. She sees his achievements and the positive possibilities that lie ahead. And when she said ‘We’re just going to throw everything we can at him to make sure he gets all the help he needs to maximise his potential’ I could have kissed her.
It goes without saying that I would do anything to help Mr Boo and his sister, whose needs as the sibling of a child with disabilities are slowly emerging. There’s no depth to my inner resources to advocate for my kids, I’ve found. So why is it I treat help like such a dirty word when the recipient is me?
I’ve always been this way. On the list of Boo priorities I have almost always ranked mine somewhere between the negligible and the non-existent. I prioritise everyone else’s needs and wants, not just those of my family and friends, but those of work colleagues, neighbours and even relative strangers. I don’t even use L’Oreal. You see in my mind I really am not worth it.
I say this not out of self-pity or to make you feel sorry for me. I say it in the same spirit of mild self-loathing that makes asking, let alone accepting, help difficult for me. I like to think I am compassionate to others. I was always the designated driver to nightclubs as a teenager, the one who wouldn’t drink, even though I am fond of a tipple, because I knew one of my pals would end up in the toilet needing someone to pull her hair back to avoid the inevitable vomit and to see her safely home. But if someone tried to do the same for me, I would be horrified. This is the woman who made her c-section scar bleed because of doing too much housework the day she came out of hospital after having Sissyboo knowing that her in-laws were coming the next day to help her look after her newborn. I never slept when the baby slept (fool!) and continued to do work on maternity leave when people asked me to do so even though I was unpaid and so tired I couldn’t keep my eyes open.
Although I would help anyone out in any way I could, I find the idea of someone helping me pretty scary, a sign that I am failing, yet another indication that I am not worth helping. I would never think this of someone else who needed or sought assistance. Just me.
Ok, you got it: I’m nuts. But I am high functioning in my nuttiness, at least. Correction: I was high functioning.
Having Mr Boo early put us all under a great strain. But it wasn’t until Christmas that I really realised just how fragile my grip on things was. When Mr Boo developed infantile spasms, a new devastating condition on top of the cerebral palsy we’d been told to expect, I was floored. Add on (because of the aggressive treatment) no sleep besides odd naps of a few minutes over a period of several months (on top of months of sleep deprivation prior to that), heavy weight loss because of his increased appetite and repeat hospitalisations, I really couldn’t cope.
I was living in a hall of mirrors: everything looked distorted to me. I couldn’t see straight and the ground felt spongy under my feet. My face hurt when I smiled. I was worried to laugh in case something bad would happen. Yes, everyone was fed and watered, but I was a wreck. I needed help. But I didn’t want it. I should have been able to manage better, I thought.
And then one morning things changed. I was walking around like a tetchy zombie, Sissyboo was crying and I couldn’t get her to put her school shoes on. I started shouting and Mr Boo started screaming because of the noise. I felt like the worst Mum in the world. I was failing my kids now just as I had failed them by bringing Mr Boo into the world early with all the life-long complications he and we faced as a consequence of that day.
And then I realised I wasn’t a bad Mum. I was a struggling parent. And struggling wasn’t all that surprising giving what had happened to us in the past few months.
But here was the big revelation. I could be a better Mum. How could I help my kids if I wouldn’t help myself? I needed to be strong, but I needed support. It wasn’t wrong to accept assistance; it was the responsible thing to do.
So I found help. Well it wasn’t that easy, of course. It was absurdly difficult emotionally for me to see a GP, to be told I had severe reactive depression and anxiety and possible PTSD, that antidepressants and CBT were a good idea. The GP also thought there might be organisations that might help and asked when I was next seeing our health visitor. I told her we didn’t have one. I wasn’t sure I wanted one. I thought there must be so many more families deserving of help than we were. We were OK. But we weren’t.
When the health visitor came out to us as an urgent case 6 weeks later she provided all sorts of information about support services and groups. I resisted, knowing how The Grumposaur (still in denial there was anything wrong with Boo) would feel about it. But I kept glancing at the leaflets anyway and each time they seemed less threatening and more promising.
In the meantime the health visitor referred us to the fabulous Homestart who sent an amazing volunteer to us for a few hours a week to give me some respite and time to get on top of the many practicalities of daily living that were being routinely neglected. Now she comes to give me a little and much-needed one-to-one time with Sissyboo each week. I cannot tell you what it means to us. Support. Sanity. Solidarity.
And then I started to help myself. I started chatting to the amazingly generous and knowledgeable people on the Bliss message board and in the special needs section of the Netmums Coffeehouse. I asked for advice and shared experiences when I felt I had something useful to contribute.
And then I entered the worlds of blogging and Twitter, through which I have connected with people who put a smile on my face every single day and who offer a complete stranger, even one hiding behind a ridiculous pseudonym, friendship, encouragement and kindness.
I am not cured and I will never be a saint. I love my kids so much and am endlessly annoyed by my failings to live up to the ideals I hold out for myself. But I am more like the person I want to be now than I have ever been and that is because of the help I have received, because I have admitted that I needed it.
I sometimes don’t get to each lunch. I often miss out on a shower and have managed only one haircut in the last 13 months, but at least I know now that I need to look after myself a bit better. Because if I don’t look after myself, I really can’t look after the Boos as well as I want to. They’re worth it. And I think I might be, too.