I wrote some time ago about fear, and how as a parent of a medically complex child fear has become a permanent resident in my life.
There is another feeling that has been making himself at home – anger.
Not that I have been all Zen before Freya – Years ago, an old boss chuckled to a colleague that he thought I was a bit of a Rottweiler. As a lawyer specialising in dispute resolution you develop your style and there are many – you be the charmer, the diplomat, the cunning one – or – in my case – the Rottweiler. I’ve often thought of that comment and glanced back at what I was. If I was a Rottweiler then, with the fights I have fought, I must have now become a dragon. The events of the last year and a half have definitely not made me calmer or to shy away from confrontation.
Us parents of these little medical warriors can be an angry lot. The world has sent us challenges that are so unfair and, at times, seem unsurmountable. Sometimes people try to take advantage of our situation, thinking the life we lead is so difficult that we won’t have the strength to fight. As those who have followed my blog know, we have had our share of ups and downs, many of which have made me VERY angry.
It makes me angry that my daughter cannot do normal toddler things. It is the snot season and we are avoiding crowds after spending a month last winter in the Paediatric Intensive Care and coming close to losing Freya after she contracted rhinovirus (THE COMMON COLD!). No soft play, no kids’ clubs. No swimming, no nursery. Freya’s such a bright little spark and a sociable little lady, but we need to manage risks. Even if it means holding back.
It makes me angry that I have to spend hours and hours each week chasing up for essential equipment. Since we got home in July our community complex care team (headed from the Whittington NHS Trust) has not been able to provide us with one lot of monthly orders in time. We spend days and days waiting for equipment that never arrives. Our cupboards are full of wrong orders (yes – the NHS overspending actually lives in my kitchen cabinet in the form of wrongly ordered tracheostomy tubes). We get promised things that never happen. But the thing that angers me the most is that by failing to provide us with the right equipment they are risking Freya’s wellbeing, even her life. Dirty equipment cause infection. Inappropriate equipment makes it hard for us to care for Freya, even creating dangerous situations. And with reference to a long and painful battle to get Freya a suitable bed I stand my ground and maintain that a large wooden box fitting a 6 foot man is NOT a suitable bed for a toddler weighting 7 kilos.
It makes me angry how people turn away from you. This is a sensitive subject to a lot of special needs parents. An overwhelming majority of us have lost friends and family simply by people choosing to walk away when things get tough. Having a special needs child isolates you from your old life. People do not know what to say. They do not know what to do. And some, not all, but some, will leg it at the first opportunity. We are no longer the friend who can go drinking with at a moment’s notice. It is difficult to make plans when any morning we get up we don’t know if we will be tucking in our child at intensive care unit at the end of the day. We are no longer the friend who can be on call about problems of others, quite simply because we have enough of our own. And we find ourselves being the ones who need help. And not once or twice, but often. And we hate asking for it, so often opt to continue along the road that lays in front of us alone.
It makes me angry how we constantly need to be on a warpath. So far I have fought for Freya’s care package (twice). Got a social worker replaced. Fought for rehousing. Argued with doctors about getting Freya a ventilator (which has proven to be literally a lifesaver!). Challenged Whittington Hospital after an admission where care Freya received was dangerous. Fought to get sufficient cover from our care agency when I caught one of their carers sleeping. Battle daily just to get the right equipment to keep Freya healthy and alive. Fight bullies. Challenge people who tell us “no”, “can’t”, “unlikely”.
And it makes me angry that this has happened to my family. My child. Me. Don’t get me wrong I love my little Freya and being her mum has been the greatest achievement in my life. Being a parent of a chronically ill child has shown me things I could have never imagined before – the strength these little fighters have to bounce back from gravest of situations, the limitless love parents can have for their children. The pain and despair we have when we need to say goodbye to those we love, how many unnecessarily difficult things are piled in the way of those already walking the hardest of paths. I have discovered myself in moments I have been the weakest, amazed myself with the strength I have at the times when the only way to make it through the day is putting one foot in front of the other. But I do, at times, sit around and can’t help but feel bitterness towards the universe – why us? Why her? Why me?
But it is what it is. We can fight fights, stand our ground, but there will be things out of our control. As corny as it sounds the way we manage is by making most of what we’ve been given and not letting anger, fear or any other negative feeling take over our lives.
P.s. Watch this space and get in touch if you want to share something with me. Are you a parent of a disabled or a sick child who is experiencing similar issues? Perhaps we can share experiences! I am happy to share!
P.p.s The photo chosen on basis that I am teaching my darling little girl to be fierce. Stand your ground, challenge people when they are mistreating others. Be strong, but be good. Girl power!