After four years of seizures, I know exactly how to spot one, what to do, when to do it, and when I need to call an ambulance.
Respiratory problems are still a learning curve for me. I don’t really know how to spot when she’s having trouble, many of the things they’ve told me to do don’t seem to help, and it isn’t always clear to me when we need to take her to the hospital.
This leads to a lot of feeling inadequate, confused and indecisive. We are also trying to come to terms with the fact that the doctors don’t think she is going to recover from these chest infections. At best, we will manage them and keep her out of hospital; at worst, she is going to get even sicker. And we’re mixing up our care arrangements.
So, I’m in the midst of recruiting a new carer, who will only work a fraction of the time our current one does. On paper it makes sense – it reflects the fact Miss Z is at school two days a week and that we need to save money because I’m not working as much because I’m so frequently at the hospital with her.
However, I know in practice, it is going to take some getting used to – if only because I’ll no longer have another person to help me juggle it all. And with Miss Z now four years old, we need to start thinking about adaptations as she becomes too big to regularly lift and carry. And that requires a lot of research, investigation and fundraising. And next year will be a big shake up in terms of her therapy – as she leaves the “early intervention” programmes and starts school.
So, I need to decide what therapies she’s going to continue and find new therapists – and figure out when exactly we’re going to see them… And I need to keep going with her communication. Use her iPad more regularly and make sure that school and her carer are doing the same. And organize several assessments, including one to determine if she would be a good candidate for eye gaze technology. And I need to manage all her appointments with doctors and specialists. And make sure that we have plenty of all her medications at home and that none of the repeat prescriptions has expired because running out is not an option. And I need to keep on top of orders for her special formula and all her clinical supplies.
Usually managing all this feels like a challenge – in the positive, ‘I can do this’ sense. I like being well organized and well informed. I am happy to take on the role of family logistics manager and I generally have a sense of achievement at doing it because I think I do a pretty good job. Lately, however, it has been feeling like it is just too much. I can’t bear to even look at my ‘to do’ list because it is too long and too full of things that are too difficult to do.
I am slowly becoming buried under the hundreds of thousands of little jobs that come with caring for a medically complex child. Procrastination has become my constant companion. I’m only managing to achieve essential tasks at the moment – keeping Miss Z fed, medicated and seen regularly by her doctors and therapists.
This is what I think is so hard about being a parent of a child with special needs – it is the unrelenting tasks and responsibilities and appointments and paperwork.
And they aren’t things that you can delegate.
And when you find yourself in a rut – like I’m in now – there isn’t much you can do about it. Except pull yourself together and dig yourself out of it. For the moment, I seem to be languishing in my rut. But I’ve also started taking some small steps to getting out of it. For example, I’ve started running again. Not a lot, but Vegemite and I have registered for a few fun runs to raise money for a local children’s hospice. Running has always been my escape and the best way for me to blow the cobwebs out of my mind and enjoy a little endorphin rush.
I’ve let it slide because I’ve been so caught up in everything else, but now I’m getting back into it and running again feels good (mentally at least, physically is another matter). I’m also making myself go on a mums’ night out with some mothers from Vegemite’s class. It is a bit outside my comfort zone – especially since I’ve been enjoying cocooning myself off from the outside world as I cope with Miss Z.
However, I know a few drinks, a meal out and conversation that doesn’t involve Miss Z’s health will be a boost.
I wouldn’t trade Miss Z for the world, but life with a medically fragile child is hard. It is isolating. And it can feel like it is all too much.
I wouldn’t trade Miss Z for the world – nor would I want to give up my role as her caregiver, personal assistant and advocate (as well as being her mother).
But sometimes I need to remind myself that it is OK take a break.