Additional Needs

What it means to be a mother

Posted by Emma Louise Cheetham on 25th March 2020 Additional Needs, Advice & Support, Disabilities

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“I’m a Mum” that’s a very true statement but one that I’m not sure has completely sunk in even though I’m 17 months into my journey of parenthood. Something I once wasn’t even sure would ever come to fruition.

I was diagnosed with polycystic ovarian syndrome six years ago and when I asked what my chances of conceiving a child were, I was told it wasn’t impossible but it probably wouldn’t be easy. Lo and behold Jaxon was conceived when we weren’t trying for a baby. He wasn’t unplanned per se, I always wanted kids. I’d just planned to wait another year or two. I’d come off the pill to give my body time to readjust and naively believed that, given I’d been told I’d basically be lucky to conceive a child, it wouldn’t happen that fast.

I was still absolutely overjoyed (and panic stricken to high heaven) when I saw those two lines.

It was what I’d always wanted but the fear that a brand new person would be coming into the world and relying on me to keep them alive was very real.

Now, our journey has not been plain sailing and that’s putting it in the mildest terms. It has been hard work. REALLY hard work. It’s driven me to breaking point and there have been days where I’ve wondered how much longer I’d be able to carry on. 

You see when I was pregnant, I never anticipated that I’d be parenting such a complex needs child, especially when all our scans were showing that he was developing perfectly despite the fact I had idiopathic polyhydramnios.

Everything was fine until right at the end when I was 41 weeks pregnant and had a short period of reduced fetal movement. That was the beginning of life as I knew it changing forever.

HIE is cruel. It strikes the majority of families completely unexpectedly and it leaves parents having to navigate an utterly devastating path of uncertainty. Jaxon’s HIE event happened shortly before birth and left him with a severe brain injury. The nine months I’d spent trying to keep my baby safe, following all the rules to ensure he arrived into the world completely healthy felt like they had been for nothing. We still have no answers why, we maybe never will.

I was finally a Mum. Only I was now a Mum to a child who would likely grow up with profound disabilities. Who may never walk or talk. Who may never see or hear. Who may never be independent. Who may need 24 hour care forever. Who may not even live beyond childhood.

But despite my journey into motherhood being entirely different to how I anticipated, it has taught me much more than I could’ve ever expected. It’s taught me how to fight to get my child’s needs met. It’s taught me to scream and shout from the rooftops like never before. I’m not only a Mum, I’m a therapist, a teacher, an advocate. I’ve learnt more medical jargon than I ever did when I worked in health insurance. I’ve learnt how to do pump feeds, suction, give nebulisers, carry out therapies, adminster medication, recognise seizures. I’ve learnt how to read my child who despite his complexity, has a very cheeky, very colourful personality.

I’m not the Mum I thought I’d be but that’s primarily because my son isn’t the baby I thought he’d be. He’s no worse, nor better, he’s no less loved or less deserving of life. He’s just different and that’s okay. 

I’ve had to go through a period of transition like every other parent, only during this transition I’ve had to grieve the loss of the life I expected with the baby I imagined whilst learning to love the baby I’d already had to accept in the very beginning I’d lose. I’ve had to come to terms with the trauma I experienced at the time of Jaxon’s birth and the week following where I had to watch his tiny body vibrate as the oscillator breathed for him. I’ve had to try and cope with the memories of the times I reached through the incubator and felt his ice cold skin during the cooling process as they tried to protect his already injured brain. I’ve had to deal with the lasting trauma of signing an DNR to let him pass away only for him to surprise everybody and turn it all around, breathing entirely unaided once he was extubated. I’ve had to accept that I’ve been more affected than I thought and reach out for help to cope with the difficult feelings and emotions I deal with on a daily basis.

I’ve had to deal with the sadness of the first year as the impact of his injury became apparent, as he missed milestone after milestone. I wished the hours and days away, instead of breathing in and enjoying this miracle that I had in my life. Instead of enjoying my baby being a baby I spent day in, day out wondering what new challenges we’d be facing and where I’d gather the strength to carry on, whilst enveloped in anxiety and grief.

I naively believed before my child was born that the role was simply bringing up, loving and taking care of them.

That much is true of course but on this journey so far I’ve learnt it is so much more than that. I’m slowly learning what it really means to be a mother. It’s accepting and loving my child unconditionally, no matter who he is or what he’ll go on to achieve in life. It’s recognising that my child is incredible regardless of his struggles and finding ways around his challenges to encourage him to be the best version of himself he can possibly be.

It means being ready to take on any battle to ensure my child gets whatever he needs to give him comfort, happiness and security. It means putting my child first every single time and making every decision with his best interests at the forefront of my mind. It’s recognising that I won’t always get it right because there’s no such thing as a perfect parent yet never stopping striving to be the best I can be for him. It’s being ready to do whatever needs to be done because my child is my universe and I’ll do whatever is needed for him, all whilst just trying to be like every other Mum around me; simply loving and enjoying my baby.