24/7

If you ask a parent of medically complex child what their life is like they will often tell you it’s one step forward and two steps back – though I think it’s more like one step forward, twelve back, few side way steps and jump in the air – and this is very much what I have been feeling like last couple of months.

We made good progress in respect of Freya starting nursery – she got allocated a place and the funding for 1:1 was agreed surprisingly painlessly – until we hit a brick wall with no one doing anything about hiring the 1:1. At the same time we were finally getting somewhere with arranging overnight respite for Freya at a local children’s hospice, just to be told that they would not accept her without one of us or a carer who knows her in tow. Even with funding from social services this would just not be achievable and whereas the hospice is set in beautiful grounds surely me having to drag along defeats the whole purpose of respite. However nice hospices can be I am never able to shake off the strong association with end of life and it always makes me feel anxious to my core. Haringey CCG has still failed to come up with a plan to safely transfer Freya’s care package to a new provider and we regularly are getting 20 + hours less care  a week than they themselves assessed Freya to need. With “friends” like these who needs enemies, eh?

Where I set my expectations of the coming autumn high, they have now crashed down. I have written previously about the importance of getting your home routine right, and even though I think we have generally achieved this, I have been increasingly felt stuck, imprisoned, by our circumstances. And it makes me feel guilty as after all, it is not about me, but about Freya – this is not the life we would have in million years chosen for our daughter, but as she is here it is for us to ensure we give her the best possible experiences and chances in life.

And I have wondered –  after months and months are inadequate support and poorly supplied public services why I am feeling like this? The weather has been decent and we have pushed ourselves to venture out further with Freya in attempt to gain a bit more independence. A year ago I cautiously would walk Freya around the park next door – yesterday we went to central London using public transport.

And then it struck me. I’m feeling a bit battle weary. Our lives, and particularly mine as Freya’s stay at home parent, is relentless parade of medical appointments, fighting to get services in place and level of medical care I never envisaged providing.  The lives of medically complex kids is truly 24/7.

One of us needs to be near Freya at all times.  The less than wonderful Haringey CCG has told us that Freya cannot be left with a carer or even a nurse alone ever – even if they are fully tracheostomy competent. The reason for it? There is none.  The offered explanation – there needs to be someone in the property to call an ambulance if there is an emergency and the nurse is busy  performing CPR – falls flat on the basis that the CCG is more than happy for me to be alone with Freya whenever my other half is at work or when a care company cancels a shift. To be frank – it is not about with Freya’s safety, it’s to do with money and convenience. A lot less paperwork to complete if something happens when you can pile on responsibility on the parent.

But what this means in practice is that us, as parents, cannot go out together, without Freya, ever.  No dinners, no weekends away. Currently one of the local children’s hospices does a toddler group every three months we can drop Freya off for a couple of hours. When she is in hospital we can sneak in a dinner or drinks, that is, if she is well enough for us to leave her bedside for any longer periods than we absolutely must. Of course our children are our responsibility, but where study after study reports high levels relationship breakdowns in families with sick and disabled children one would think providing a night off for parent carers every once in a while would not only be humane, but in long term save money.  But n a reality where kids like ours are not even getting the care services they require  parents’ needs are at the bottom of the list.

We are not particularly mobile. Where ever we go we need to bring a large amount of medical equipment just to keep Freya alive. Public transport particularly during busy times or the flu season becomes too much of a risk to take and our old banger of a car is not reliable enough for long trips. I desperately want to take Freya abroad, travelling being my number one favourite thing to do, but getting an insurance for a kiddo like Freya is hard and expensive.  There are fitness to fly tests, special arrangements with airlines, trying to figure night time care.  There is the fear of what ifs – at least at home we have an emergency protocol that we feel confident with. So families like ours often become if not housebound, locality bound.

The fear is always there. I know two year olds are bonkers. They have little sense of danger and Freya is no exception. The big difference is that she relies on this little plastic tube for breathing and  if it gets blocked or falls out the consequences can be devastating. She needs someone with her 24/7 and when it is not us, we worry. I know it’s common for new parents to worry how to keep their offspring alive, and sudden illness of otherwise a healthy child can be a devastating experience; we may learn to live with the worry we carry for our little medical warriors, but it never goes away.

It makes you, at times, feel worthless.  We have strived all our lives to be independent. We have worked hard and not depended on the government for help.  And now suddenly, we find ourselves in a household with only one breadwinner.  The income I received is about a sixth of what I used to bring home.  I built my identity around my career, my financial independence, and now I have no idea when I can return to work.

It is not even the feeling of inevitable erosion of my identity that upsets me the most. It is the way we get treated as “just” mums or dads and our views are often discounted for this. Like that we are presumed to be so overcome with emotions that we cannot process information properly or so struck with grief our demands automatically outside the scope of what can reasonably be provided.  Yes it happens at times – the things we deal with can be so gut-wrenchingly awful I could not describe them in a million words, but the parents I have met during this journey are superheros, total legends. They work their hardest to sponge in all the information out there that might help their kids. They spend sleepless nights literally keeping their kids alive and push their fears and griefs away so that their little ones don’t see it.  They fight the injustices of the system allegedly designed to help them and push to have their children’s needs met when all around them try to make them feel unreasonable and worthless. And it relentless, with no return back to the people we once were.

Why we do it? Because we have no option. We have not chosen this life, it has been cruelly thrust upon us. As parents we are at our strongest and at our most vulnerable.  And our kids are amazing, truly inspirational. They don’t mope around complaining about the cards life has dealt them. They are the kings and queens we fight for. And for them we will move any mountain, even if it is stone by stone.