8 Things I wish I could have told myself at the start of this journey

Enjoy how little she is - see past the uncertainty and fear

I remember almost rolling my eyes at just how much people said “enjoy how little she is, they don’t stay small for long!”. But how right they were. I look back at photos and through the chaos, trauma, sleepless nights, the hospital admissions, I can only very vaguely recall ever remembering her being that small. I would tell myself to even for one moment a day… look past the tubes, the alarms, the uncertainty, the fear. And just sit in awe of what a small but powerful miracle she is.

We were so bombarded with information and learning how to perform her various medical interventions that at times you could lose sight of the fact this is our child. Our first child. I know it’s hard. But, put your blinkers on, enjoy being able to hold her on your lap. One day you won’t be able to do that. These times are precious and you’ll look back and wish you could have enjoyed the nice aspects of it all.

Prepare to fight - you will be great at it.

I’d say probably 99% of my friends who have children with complex health needs/disabilities would attest to the fact that either you will have to fight… or someone will tell you to expect to fight. I remember the first few times I heard this phrase I was a bit confused. Why on earth would I need to fight? Surely whatever services, equipment, medicines, therapies, adaptations we need will be provided? We aren’t the first family like this and we won’t be the last. We live in a developed country with a wonderful health system.

For what reason would I ever need to fight? I miss those early naive days! I miss not fighting. The majority of the fight will be themed around money and funding. There will be times you find yourself exasperated, frustrated and defeated wondering why it is a 'no' this time? Or what am I having to push and push to make such a huge case when it is so evidently needed?! I would tell myself “you will find a confidence in you that you never knew possible. You will look back and be amazed at what you have accomplished in order to provide the best quality of life for your little girl.”

You are MORE than capable. You’re doing great.

There were many times in those early NICU days where so many tears had fallen that I couldn’t make more. I would sit trying to express breast milk feeling awful about myself. “Why can’t I even make the amount of milk she needs? Am I really cut out for this? Am I going to be an awful mum?” I would convince myself that the nurses caring for her were doing a far better job than me. How will I ever know how to aspirate an NG tube? How will I know when she needs suction and will I ever be effective at doing it? I was terrified, I wish there had been more words of reassurance from the medical team around us. I constantly doubted my abilities and felt overwhelmed, leaving someone else “more capable” to intervene.

Now, 8 years on, I am so confident in my ability to care for Amy. Phil and I know her better than any medical professional could. From a quick glance at her I know exactly what’s going on. One moment home from school and we know if she is seizure-y, or if she is having gastro issues, or if she needs her inhaler etc. I would tell all NICU parents constantly what an amazing job they are doing and that they ARE capable. It all takes time, but soon you’ll be able to school an anesthetist on where it is best to insert a cannula. (Not detracting of course from the very real and amazing work all medical staff do I’m just saying, we learn our specific child and we know how best to do things for them)

Your gut instinct is right - have confidence in yourself.

I VERY strongly feel this one. Every child is so different. Even within the cerebral palsy or HIE community, you will never see two children the same medically. I could list so many examples of times where I have let someone dismiss my gut instinct but then later on have realised I was correct all along. It has now happened so many times that I don’t even doubt myself anymore.The most notable one was when Amy’s epilepsy reappeared. It was as if she had changed overnight.

Her behaviour, her movements, her emotions. I recorded so many videos of these different episodes. Eventually I was told that this was not “typical” seizure behaviour and that an EEG was not required. Fast forward a month and I walked in one morning to Amy blue, convulsing, foaming at the mouth, completely unresponsive. We called an ambulance and after an EEG were told she needed to start anticonvulsants immediately and to carry rescue medication. She was having a lot of unwanted electrical activity and having a lot of seizures. I wish now I had believed in myself more and prevented what was eventually more ambulance trips than I care to remember.

Speaking up and advocating is different to being nasty, angry or awkward.

My constant need to be liked has made it difficult for me when dealing with a situation that isn’t fair or right. As time has gone on, my patience has worn thinner. Life now involves so much admin, logistics and waiting lists. This, coupled with a lack of sleep and a physically hard job means I am now adept at ensuring everything is going how it should be. If something stands in the way of Amy’s quality of life.

For example. When Amy was a baby, her irritability was put down to reflux. We would arrive at the ward weekly, desperately seeking help. Her reflux meds would be increased and we would be sent home. For so long I accepted that she had feeding issues, and why would the doctors fob us off? I trusted them. We followed such a long and difficult journey to get to where we are today with Amy’s feeding. There are still issues. But I am confident now that we are doing all we can to make things as good as they can be. The first time I complained to PALs made me feel sick. But ultimately, if someone says they will do something for you… and they repeatedly don’t.. Then this is not fair on your child who is needlessly suffering.

It’s okay to need help - ask for it, accept it, enjoy it.

I still grapple with this one. But I would love to go back in time and tell myself - stop trying to do it all yourself. Stop accepting someone else's tick box assessment of what respite you qualify for. As parents of medically complex children, we go above and beyond the usual level of expectation every single day. We’re amazing.. But we aren’t immortal or magical. Everyone needs a rest. I used to (and sometimes still do) feel guilty at having a break, I miss her so intensely when she isn’t with me. Sometimes I feel guilty for needing the break, guilty for wanting it. I would tell myself that ALL parents need a break and that I deserve it as does Amy.

It would of been great if someone had really drilled it into me that a break isn’t just for me, it’s for Amy. A break allows her some independence from us, and time for us to recharge so we are fresher when we next see her. There is no tiredness quite like the tiredness you feel after days on end of constant broken sleep, especially if you have also had to be in hospital. Sleep deprivation is a form of torture. Don’t feel guilty for wanting to enjoy some quiet time. And don’t settle for less than you deserve.

Don’t lose yourself - you are more than just “mum”

This one is important. You can become so accustomed to being viewed through the lens of “mum” or “carer” that it’s almost as if people forget you are more than just those identities. It’s understandable to lose your sense of self a little. Your life is now consumed by ensuring your child has what they need. Some days (most) I feel like a nurse, a dietician, a physio, a warehouse worker (honestly, all of those boxes!), a translator, a speech and language therapist, and so on.

Don’t forget who you were before, and who you are now. You’re not just “mum”. When was the last time someone called you by your name and not call you mum? You are important too. I’d tell myself, keep having interests… even when you’re exhausted… go for that walk, listen to that podcast, play that video game… talk about things other than mum related stuff. You are a multifaceted, complex, interesting human being.

It’s okay to cry. Or to not cry. Be kind to yourself.

I’d tell myself to be more patient with myself. I would cry and then feel pathetic or guilty. I’d remind myself that actually we are so very lucky and that we have so much to be grateful for and berate myself for thinking otherwise. The truth is - you feel how you feel and letting emotion out is very important. In those early days especially, you have such a wealth of information coming your way that you never anticipated. You have been thrust at full pelt into a world you probably didn’t know existed and are seeing and hearing things you never expected. It’s only natural that you’ll need time to process, and heal. Sometimes I would bottle up my emotions and try to remain calm through fear of looking like I wasn’t coping. I didn’t want anyone to think I wasn’t able to keep it together so I’d wait until I was alone and let it all out.

It's so important in those early days to surround yourself with support. I used to have a lot of flashbacks and panic attacks relating to Amy’s birth trauma. It took a long time for me to be able to walk through the maternity ward to the children’s unit (a journey we still do regularly) without my legs buckling beneath me as memories came flooding back. I would tell myself not to worry, that I’ll get through that. That medication and counseling is not because I am weak, but because I am strong. I try sometimes to talk to myself as I would to a dear friend. We say things to ourselves we would never say to someone we care about. You are your own friend and you deserve to be treated with kindness.