Autumn’s arrived to London and this means two things in our household. The snot season has officially opened with Freya spending three nights in the Paediatric Critical Unit with entero -and rhinovirus. The other thing is that nursery has started but our little lady is not there – despite starting the process back in February, there is still no one-to-one in place to accompany her to nursery so for the time being we are staying put. Rarely have I seen such a celebration of failure and inefficiency. The incompetence has reached levels that I truly wonder whether some of it is intentional – after all failing to provide agreed services has the same effects as denying services – it saves costs.
So I am back in the general mode of kick ass, acknowledging the lessons learnt that in the world of disabled kiddos nothing is given unless you push for it. But closer we draw to success, a small nagging feeling that has been gnawing me inside is getting bigger: After two years either spending all waking hours by Freya’s hospital bed or 24/7 with her at home (special shout out here to Haringey who still are failing to provide us any respite!), how will we all manage starting nursery? Most parents find their kids starting nursery or school a bitter sweet experience with fears and anxieties bubbling up, but how is it for us, when our little girl is so easily breakable?
I am scared, worried and anxious. My biggest fear is about something going bad, really bad. What will happen if some other little person pulls her tracheostomy out? What happens if the tube gets blocked? How about playing with water? Her tracheostomy is literally an open port going into her lungs! What happens if her one-to-one freezes in a moment of emergency? Even the best plans can go wrong and to err is human. When we are used to living on the edge it is hard to let go of the imaginary control we think we hold and entrust our little people to others.
My second big worry is bugs. It is the season to be snotty. Little kids are little incubators of all bugs nasty. Nurseries are known to be the mutual bug exchanges for these pint sized snot monsters. After an awful winter two years back during which we came close to losing Freya more than once, last winter was kinda OK. Sure we had snot, extra O2 and times on 24/7 ventilator. But overall we escaped lightly, doing just a couple of nights at hospital here and there. What was our secret? Isolation! We were constantly waiting for a jaw op date and hid ourselves away from situations where Freya could get infected. Anyone with the slightest sniffles were told to stay off and we largely kept away from social events. It was a long winter, but we all needed to rest after how stressful Freya’s first year was.
My third concern is more of a me! me! me! nature. I know our life is weird. For the past two years Freya’s health needs have not only been the number one consideration in our lives, it’s been the only consideration. When Freya starting nursery first became a concrete possibility I got very excited about thinking that I could finally start having a bit more of me time. The subsequent realisation that she wouldn’t be able to start anytime soon hit me hard – I was seeing the glimpses of life less complicated I imagined drifting further out of my reach and quite frankly it sucked. And now when we are hopefully getting closer to a start date I worry how will I deal with the disappointment if it doesn’t work out?
I don’t like to be the person who does not try in case I fail, but I worry if I don’t manage my expectations I will drift into the darkness of moods if it all collapses. I worry about making the wrong decision. I worry about risking Freya’s health and the relative stability we have enjoyed during the past months. When living life of a family with a medically complex kiddo is all about risk management, would it be better to keep Freya home for another year, even if it means depriving her of social contact with her contemporaries she so enjoys and keeping us under house arrest?
Never have I in my life been so frequently and harshly pushed past my comfort level as I have since I had Freya. Whilst some have been outright traumatic, others have taught me to trust myself and stand my ground in a way I could have only imagined of before. It has shown me that life sometimes is just what it is, and any level of effort and aspiration from our part cannot sometimes change the challenges we face. But we can try to learn how we deal with the challenges, and as a part of that we cannot hide ourselves away from the world forever in fear it will hurt us.
So upwards and onwards it is. We can just do our best and take it as it comes. After all, great things rarely come from comfort zones.
P.S. If you wonder what happened with my battles getting the right services in place here is a little update. All summer I’ve been battling professionals telling me that I was falling short of providing “the reasonable expectation of parental care” by not agreeing to be Freya’s one-to-one at nursery or the emergency back up person 24/7 to jump in to do full CPR as the training carers required was too long, expensive and cumbersome. Finally after repeatedly telling them that I really couldn’t care less if they thought I was a shit mum because I wanted them to provide services to Freya that she is legally entitled to, and that I was quite happy to go to High Court to enforce them, it seems Haringey CCG has had to step down and I got an email last week pretty much agreeing to all my demands. They’ve agreed all those looking after Freya should be fully tracheostomy competent and during the training period shifts would be covered by paediatric nurses. Now it is just about getting all of this in place, a huuuuuge task in itself. Fingers crossed! Shows you should not bow to bullies, even if you are the little person against the big organisation.