A year older, a year wiser (?)

It was my birthday this week. Not a big one, but an opportunity to look back and see what life has brought us last year and what I have learnt.

A year ago we had just been properly discharged from hospital for the first time since Freya’s birth. We had previously gone through various attempts at home life all resulting in ambulance rides and long stays at intensive care, but it was only after Freya was put on an overnight home ventilator that she became stable enough for life at home.

Whereas we all feel blessed being at home it isn’t easy. “Medically complex” and “life limiting” aspects of her diagnosis has made all of our lives in many ways complicated and limiting.  Here are some thoughts that have matured in my head during the past year.

I need to be responsible for my own well being. It’s been a tough summer. Freya’s generally done well, but it seems I have been having a fight after fight – first they tried to cut Freya’s care hours, then for months her care package has been drifting towards a breaking point. Good progress regarding nursery came to a full standstill and the term started with Freya nowhere near being able to start.  I have emailed and argued, put in formal complaints and freedom of information requests, I’ve spoken to lawyers and I have spoken to numerous families in similar situations. And it’s been bloody knackering.

After sleepless nights and tears of frustration and hopelessness it came to me that parents like me are not only responsible for our little ones, but we owe ourselves (and them) the duty to look after ourselves. What would happen to Freya if I burnout? I am blessed with a supportive partner who bears his share of trachy duties, but he also needs to make a living to support us all.  The sad – and predictable – truth is that if the main caregiver of a disabled child is unable to carry out the care duties the whole family often tailspins to chaos.

So I’ve worked on me. I have yoga’d and I have meditated. I have watched countless episodes of RuPaul’s drag race and grown vegetables in the garden. I have done canal side walks and drank wine with friends. I’ve tried to learn how to bake and listened to endless audio books.  And it has made me realise that no, I am not going to just make do and scramble with whatever crappy, el-cheapo support our local authority can scramble together.  Freya deserves to go nursery, we deserve sufficient care hours provided by fully qualified staff to help us at home. Freya deserve mum and dad who can be that to her, not just some tired parent-bots trying to survive the day.  Whatever lame excuse of guilt trip gets thrown my way is not good enough. Not today satan, not today! We – and all families like us – deserve the right to be happy, even if there is a wonky gene or two in our pools.

Life is full of silver linings if I keep my eyes open.  Hands down,  Freya’s illness has been the hardest thing I have faced in my life.  Looking after her day in, day out proves to be the hardest job I have ever had.  Fear of losing your child, and concretely coming close to it, is the biggest bogeyman of all – anxieties of my previous life do not even scratch the surface of the feelings I have felt since Freya was born.

But one would be stupid not to appreciate the silver linings; With the bespoke design of her jaw Freya has very little mouth opening so we don’t really have to worry about her putting stupid stuff in her mouth. She is fed blended food via a feeding tube into her stomach – so this girl eats her greens with no tantrums. We saved a ton not having to buy nappies for 8 months in hospital. It’s not all bad living in hospital accommodation in one of the most expensive neighbourhoods in London when you need to make it back to your quarters after a few drinks in the pub. And we’ve certainly made some life long friends by hospital bedsides and parents’ rooms we would have never otherwise met.  The list goes on, some linings being less tongue in cheek than others.  But the bottom line is – there are few (no?) experiences in the world that we cannot gain anything positive out of, and having a child with special needs is no different.

Change is inevitable. Today will never be same as yesterday. Whereas when I open yet again another box of suction catheters and give the umpteenth neb of the day to a toddler who repeatedly hits me on my face I might feel like I have landed myself in an existence of real life Ground Hog Day, I know that status quo is a fragile thing.  Where we live in a world of numerous medical experts and repeated bleak prognosis managing one’s expectations is smart, but fully excluding possibility of miracles is plain stupid. You don’t have to be particularly religious (I am not) to see that predicting futures of medically complex children is not a science set in stone. Even if it is clear that Freya is disadvantaged by having a small chest, everyone agrees she has done exceptionally well.  Who knows what tomorrow brings? Being unable to even to guess we’d be stupid if in fear of tomorrow  we did not to celebrate this little creature stamping her feet in her African dance class today.

When Freya was about six months old I had a conversation with her palliative care consultant where I told her I had figured out that what doctors essentially did was deal out series of educated guesses and hoped some of them would turn out to be true. She laughed and told me I was kind to use the word “educated”.  It is only when you spends enough time around medical folk that you understand how medicine can be more of an art than a science. You don’t have to spend much time in hospitals to meet some medical miracles – toddlers running around like madmen when they were not supposed to survive their first month, kids thriving having just parts of their organs, hearts that have belonged to another, machines that help them to breath and eat when they can’t do it themselves. Believe you me, the stuff you see and the stories you hear truly blow your mind.

I know that Freya will never be a medically typical person, even if she lived to be a hundred. Our lives will be full of appointments and medical jargon that most people have the fortune of not knowing. But neither is the game lost. Who knows, maybe one future birthday she will be wheeling me in an old people’s home, apologising in advance for the mother who is a serial complainer. Crazier things that have happened. But in the meantime, I am grateful for the progress we have made in the past year and am going have some more cake.

P.S. A short update for those following my quests of ensuring Freya gets the services she needs: We still have no care company in place so Haringey CCG is reluctantly paying for paediatric nurses to cover Freya’s package. They tried to guilt trip me into accepting carers who are not fully trained and I told them to put it in writing and that I’d happily meet them for a match at High Court.  So we have entered a standstill. Undoubtedly there will be a lot more for me to share with you via this blog in the future.