How much is too much?

So far this week Benjamin has had visits from his physio, the community nurse to change his gastrostomy button, the disability social worker, and the visiting teacher for the visually impaired. I’ve taken him to the Sick Kids for a respiratory consultation, the GP for a flu vaccination, into Edinburgh for an early years sensory class and, for a bit of light relief, to Rhyme-time at the library. He’s been referred for an orthotic assessment, a tonsillectomy and adenoidectomy, and a possible nasopharyngeal tube placement. On his behalf I’ve made phone calls to the GP, neurology, to the doctor at the children’s hospice, and multiple calls to wheelchair services to chase up his overdue buggy.

On top of that (and the usual laundry, cooking, laundry, shopping, laundry, collecting prescriptions, changing nappies, laundry, feeding, laundry, laundry, etc…) I’ve enrolled Jackie for primary school, completed two freelance writing jobs, done a few hours admin for my ‘real’ job, made numerous cups of tea for the men who are demolishing (and hopefully rebuilding) our kitchen, and had a visit from my sister-in-law’s mother-in-law who happened to be passing.

A fairly typical week, and it’s not even Friday yet.

According to our social work assessment, I am “at risk of burnout.” I don’t buy that, I feel good when I’m busy busy busy). But is this the best way to bring up my children? The people I’m supposed to be nurturing? Constantly rushing from appointment to appointment? Jackie is incredibly patient, scoots her balance-bike to and from appointments, navigates her own way around YouTube during home visits, and looks forward to her afternoons at nursery for some proper fun. And Benjamin? To be truthful he was happiest snuggled up in my sister-in-law’s mother-in-law’s arms for a sleepy cuddle, safe from all the hassle for half an hour….

Just let us relax for a minute, mum!

Just let us relax for a minute, mum!

It will get easier

“It will get easier,” they said. Once he gets past the ‘two year old functioning as a new-born’ phase and into the ‘five year old functioning as a one year old’ phase it will be more rewarding, less thankless, more fun. Of course, there’s no guarantee he ever will move on from his present stage of development. He may stay like this for his lifetime. He may regress. But it got me thinking: When will it start to get easier? How will I know when I’ve passed the hardest point?

It’s hard to sit on a cold chair in a dark MRI suite and be told your unborn baby will never walk, talk or feed himself.

It’s hard to leave your baby girl with her grandparents while you thrash out with your partner whether to keep that baby.

It’s hard to sit in a special needs group with him and realise he is the least able child in the room.

It’s hard to hold him late into the night, coughing and coughing, struggling to breathe, vomiting.

It’s hard to hold his writhing little body down until a general anaesthetic takes effect.

It’s hard to cry down the phone at the DWP for delaying your carer’s allowance yet again.

It’s hard to watch all your mum friends move on and go back to work.

It’s hard to see your little girl sitting colouring pictures in A&E when she should be at her swimming lesson.

It’s hard. But the same friends who said “it will get easier” also said “try to enjoy him now.” There’s no point wishing these days away, waiting for some hypothetical time when it gets easier, and missing all the enjoyment to be had between the hard times. Because:

It’s easy to be with him.

It’s beautiful to cuddle him.

It’s inspiring to be part of a community of parents and carers – local and further afield.

It’s exhilarating to try carve out a new career niche for myself that fits both my work aspirations and parenting commitments.

It’s comforting to see his big sister take his hand.

It’s enchanting to watch him smile at a sunbeam coming through the window that no-one else has noticed.

So I scoop him up and dance around the kitchen to Radio 2, just because I like the song they are playing and I know he likes to dance (and there is no one to see). And I realise, life is just a series of moments like this. Hard moments and easy moments. Fun moments and melancholic moments. Moments we’d rather forget and moments we’ll treasure forever. Incomparable moments. How will I know when I’ve passed the hardest point? I won’t, so I just have to try and enjoy the journey.

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A natural mother

I’ve never seen myself as a natural mother. I’m impatient, selfish, particular, ambitious. While I’m not exactly sure what a ‘natural mother’ should be, I’m pretty certain it’s none of those things.

Yet for nearly four years I have been, without a break, either pregnant or breastfeeding. Both came (surprisingly) easily, naturally, without much effort, thanks (I suppose) to the hormones produced by my body each time I drew my babies to the breast. Physically I have been very much a mother. “I can do this,” I thought.

Now, this physical phase of mothering has drawn to a close, at least for now. At sixteen months, and with an NG tube going in, it seemed an appropriate time to stop breastfeeding Benjamin. Instead of sitting and nursing him, with breast and bottle, for up to six hours each night, I just plug him into his pump and turn out the light. That’s a big shift – in lifestyle, and in hormones – to get used to. I know I’ve been dying to get my evenings back, to catch up on the ironing, the paperwork, to get out in the garden, but I’m going to miss that time of nurturing. It feels weird, disloyal, to be back in my lacy, underwired bras again; to wear dresses and jumpers after years in easy-access cardigans. It’s saddening to bleed again each month. I’m going to have to find a new way to mother, one that comes from the heart, not the body.

Fortunately, these four years have changed me emotionally as well as physically. I have never known such love, such fear, such responsibility, such joy (and yes, such exasperation) as I feel with my children. [My husband, I love you with all my heart too, but it’s a different kind of love, a kind that comes from finding, connecting and choosing, not bearing and birthing]. I am less easily embarrassed, less easily bored, less principled and, I hope, gentler.

I have no real desire to return to work, just yet, although I have already overrun the normal period of maternity leave. I want to be there 24/7 for my children, to walk them to and from school, to serve their breakfast and their tea, to hear about their day and help with their homework.

Am I just being lazy? Am I taking advantage of the fact that no-one expects a special needs mum to work, unlike her peers who are assumed to hop back into the high heels and onto the commuter train as soon as their six, nine or at most twelve months are up. Am I keeping up my lifestyle of lie-ins and coffee-mornings while my husband pays the bill? And will I grow to resent it longer-term? Is a line of nappies drying in the sunshine and a mass of splodgy paintings on the fridge enough for me to feel fulfilled? Will I spend more time telling my children off than listening to them? Am I going to go slowly mad playing imaginary tea parties and putting toy monkeys to bed?

I have no answers, yet. I am just finding my feet. I know that, practically, I can’t return to work until Benjamin is at least three and entitled to half-time one-to-one specialist childcare. I’m keeping my brain alive freelancing a little, blogging a little, reading a little. More important will be keeping my mothering instincts alive through this transition. I may no longer be a natural mother, but I hope I can still be a motherly one.

The unfortunate recipients of my attempts at mothering

The unfortunate recipients of my attempts at mothering