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That’s all I Know So Far…

That’s all I Know So Far…

“You look pale, how are you really?”

15 days before I’d had major abdominal surgery and was discharged from hospital a little over 24 hours later back home where my oldest three kids were eagerly waiting for me with the newest addition to our family. At this point, I was still leaking from nearly every orifice in my body, as you are would do after having a baby, and I was still pretty jacked up on painkillers to allow me to function outside of my bed. I was also hosting an assessment with a sleep system rep, the physiotherapist and the occupational therapist for my 5-year old son.

My husband had gone back to work after his paternity leave the day before, and I had only been discharged from my midwife that morning. A week previously I was in so much pain from surgical complications I hadn’t been able to get out of bed. But when you have a child with complex needs you don’t get maternity leave. Nobody picks up the mantel for you, nobody follows up on all the things you’ve been chasing for weeks, no one challenges the duff decisions that were made in your absence. It’s still all on you.

So that’s how you find yourself nursing your newborn in one hand while firing off emails with the other, and when the physio gently asks if you’re really OK you might find yourself leaking quite profusely from your eyes. Because the world is already tough for new mums, and it’s even tougher on new mums who are also parent carers. So what have I learned from my experience?

There is a very lovely poem that ends with this verse “The cleaning and scrubbing can wait till tomorrow" but children grow up as I’ve learned to my sorrow. So quiet down cobwebs; Dust go to sleep! I’m rocking my baby and babies don’t keep.” Author: Ruth Hulburt Hamilton

Now granted, this is talking about housework, but the principle is the same. Our babies are only little once, and this precious time goes so fast, so whether we’re talking about your disabled child or a sibling, we need to prioritise our mothering over the admin that comes with being a parent carer.

It’s easy to get distracted by the admin, there are so many professionals, all vying for our attention, and lots are unwittingly giving the impression that their time is more valuable than ours. Sometimes I feel pressured into agreeing to appointments that aren’t convenient. And then there’s the mum guilt. The feeling that I must do everything I can to improve his outcome, and his quality of life. The anxiety that each bad decision or delay might have a tangible impact on his future.

But really, when I think about it, I don’t want to be too busy adminning to be his mother or mother to my other children. If I strip it down to basics, what are the most important things I can think of for him? For him to be loved, and to be happy.

When I strip it back to those two things I realise that all the things I think are so important to do right now often do not make him more loved, or happier. Often I can choose family time over that appointment, or chase that email. Not always, but often.

So right now, as we all adjust to a new baby in the house, I want to choose family. I want to choose watching boxsets on the sofa while the baby feeds and sleeps, I want to choose cuddling with my big boys as they struggle with feelings of love and jealously. I want to choose to figure out how to leave the house with four kids. I want to choose all of that and more right now because the rest can wait just a little longer while I’m on maternity.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Nicola Sheldon

Meet Our Blogger

I'm Nicola, mama to three awesome boys. We live in Thatcham, Berkshire with my husband and dad extraordinaire Chris along with our dog Percy and cat Fudge. I care for my second son Thomas full time and in my spare time volunteer for local organisations supporting women and babies.

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