Sunday 17 February 2013

Fault, blame...and guilt

Fault, blame and guilt. The triad of unhappiness with guilt possibly the most destructive of the three. Guilt is part of every parent's life. Not enough play/read/listen time? No healthy, balanced, home cooked meal seven days a week? Not enough money to give them everything you want them to have? Familiar and normal. 
Feeling that you somehow should have been able to prevent or fix your child's disabilities? Familiar yes, familiar I reckon to most parents with a SN child. But normal?

I've done battle with it for a long time. My Nathan was absolutely fine until possibly the beginning of my long labour or even slightly before. He had more or less recovered from whatever had hit him as he was pink and bouncy at birth, not blue and floppy. This makes him a bit of a rare case as most similar cases happen through oxygen deprivation at birth. That's why it took them five days to find out why he kept having seizures in his first 48 hours - significant brain damage. My consultant's best guess is that my body doesn't cope well with labour and triggered an inflammatory response in Nathan's brain. So I felt I had let my precious baby down. My womb should have been a safe place, and it wasn't. At some point it became a dangerous place and there's nothing I could do about that.

A few years later I had a very early miscarriage. A good friend, knowing me well, said 'Make sure you don't blame yourself'. Which is exactly what I was doing. I hadn't kept the first one safe, so what made me think I could keep the second one any safer! It's worked through and behind me now, but that has taken a lot of time and a lot of pain. And so much wasted energy. At least now I only feel guilty about not doing his stretches enough, not spending enough time doing exercises, not spending enough time practising reading and talking...ah the usual gumpf. 

Blame and fault are another game altogether. I have friends who are struggling with feelings of pain and anger towards medical professionals who didn't listen, didn't act, and then didn't take responsibility. It leaves them with an ongoing sense that it needn't have been this way. I feel grateful that I don't need to struggle with that. On one hand we all make mistakes. I make mistakes. If my mistake affects a client I grovel to the Court and ask for my client not to be prejudiced by my error. There is precedent for that, senior judges have said over time that clients should not be prejudiced by the mistakes and oversights of their representatives. So that sorts that. Me being embarrassed is ok as long as the problem gets fixed. A doctor or midwife making a similar mistake can have consequences that cannot be fixed. Oxygen starvation, brain damage, disabilities. A doctor or midwife doing so on an overcrowded, badly run ward while refusing to listen to the mother who thinks something is wrong is a tragedy for all concerned. 

A woman is very vulnerable in labour. I remember lying on my back, helpless, connected to drips and incapacitated by an epidural while my baby got tired and distressed. I was confused, scared and totally dependent on the judgement of others. When I met my obstetrician some time after birth he put Nathan's heart monitoring sheets on the table and said I could probably find someone who would say that I should have a c-section much earlier in the labour. He was an experienced expert-witness, I'm a legal bird, it made the conversation easier. Crucially I feel that (unlike many!) I had good care, I had at least one midwife with me at all times, was given options and choices where possible and was clearly told when it came to that point that my baby was too tired and needed to come out now. I know I was monitored by a doctor for quite some time and I believe that a careful judgement call was made. Maybe a mistake was made, although I am inclined not to think so. I feel able to say that mistakes are made, and to let it go. I do not feel and never have felt an inclination to sue the hospital. 

For some parents not suing is not an option, not because they are such vindictive people, but because their child has been left so profoundly disabled that 24h care is needed. Suing is then the only way to make sure that care will be there, because social care budgets simply do not stretch and as a result it is rare for anyone to get the care they need and deserve. So in a real way the NHS' insurers pick up the tab for the care the welfare system should be providing. False economy? With the current vicious cuts in funding this will only get worse with more parents being forced to take legal action to provide for the care needs of their children.  And a culture of blame against medical professionals continuing. Not good for anyone. 

So what am I trying to achieve with this rambly post?:

I'm calling those fellow parents of SN children to stop blaming themselves, to stop feeling guilty. If you could have prevented your child's troubles you would have done. You are good like that. 

I'm calling for grace and empathy for overworked midwives and junior doctors who staff underfunded, understaffed, exhausted maternity department and end up making errors of judgement. 

I'm calling for the government to stop funding managers and targets and to spend some money on the staff that is actually needed on the wards. 

And for a universal amnesty on guilt. Guilt is like a thief in the night. It robs you of joy and leaves nothing in return. Grace not guilt, that's what I say...

Monday 11 February 2013

Special mummies for special babies.....

Special mummies for special babies. Yes that one. I've mentioned it before in my first blogpost. That phrase that I advised you not to use within my earshot.

People using it frequently believe that it is a compliment they are giving you. It comes coupled with sentences such as 'You are so fantastic with him' and particularly 'I could never do that'. When I object against the phrase it is frequently seen as me being too modest, and that is totally missing the point. It makes me angry because it suggests that I somehow have special gifts that make it 'ok' for me to have a child with extra difficulties. No it isn't and no I don't. I was pregnant just like you, had dreams just like you and had a baby just like you. I didn't come prepared, I didn't get extra training and no I am not a specially nice or patient person. There is nothing in me that makes me specially qualified to look after my SN child except the fact that he is my child, I am his mum, and I love him to kingdom come and back. And that is why you could do it too, if you had to. And to be really harsh, you may still have to. 

There is also a deeper level on which it makes me unhappy and restless. The idea that God somehow picked me to look after Nathan because Nathan was going to be disabled suggests that God deliberately made Nathan disabled. After all he grew in my womb for approximately 8 months and 3 weeks before coming to grief. And no, I do not believe in a God who makes children disabled. I believe that ours is a fallen world in which many things go wrong, including illness and disability (and earthquakes, hunger, wars, sexual abuse, addiction, broken relationships...) because we as a world have turned away from God. God didn't make Nathan disabled. God longs for Nathan to be whole and will one day make him whole. Why he has not already made him whole in this life is another question, and one to which I have no answer. But the long and short of it is that I do not have special God given skills to look after a disabled child. It is God who helps me through, who gives me strength day by day, but that is another matter. 

Special babies make special mummies, that much is true. You never know how much of an obnoxious battleax you are until that side of you is called upon to make sure your special sprog gets what they need, fighting your way through lack of services, upsetting formfilling (DLA forms anyone? Such easy extra money according to some newspapers. All you have to do is write a 40 page form about all the things your child can't do and submit lots of medical reports and then you hope for the best) and funding cuts by a vindictive government whose prime minister should from own experience know better. 

But the only true special one is my special son. I bow to his sunny nature despite everything, and his stubborn bloodymindedness which comes from having to fight so hard for what others take for granted. I'm dead proud of him. 


Friday 1 February 2013

Sweet with a touch of bitter

Today is a special day, my big little man is five. FIVE! How did that happen? He has had an exciting day, lots of fun at school and presents when coming home and cake for pudding! Party with his mates tomorrow and cake with family on Sunday. He's proud to be five, waving his handful of fingers at everyone who will look, including the grandparents, via Skype. 

But today is also the 5th anniversary of the worst thing that ever happened to me, and to his Daddy. 12 hours after birth we were in intensive care with a baby who kept having fits, every fit every five minutes stopping his breathing. Incubator, intubation, drugs, fears, wires, monitors, questions, no answers, confusion, and a great deal of hurt. 5 days of uncertainty about his life, weeks and months of uncertainty over his future. 

It is sad that on a day that should be totally happy, there are always memories of those terrifying early days. Don't get me wrong, it's nothing like the pain of losing someone you love, and joy is very much the dominant emotion of the day, joy about having such an amazing, clever, loving and special small person in our lives. Celebration of the miracles God has done in his life. Remembering that the one thing they were sure of was blindness, followed by epilepsy and how they were wrong on both counts. Delighted to be wrong I hasten to add. And there's nothing like children to keep you living squarely in the moment. 

Some people may say that I should 'move on' from it, forget about it, it's in the past and look how well he is doing now. Fact is that I have moved on, I had help to heal from the trauma experienced and so much support from loved ones. I don't have to move on any more than this. It is part of who we are as a family. Something of this magnitude shapes forever who you are an how you do things, whether you like it or not. In some ways for good: I never take the health and happiness of loved ones for granted, intensily enjoy beautiful moments, do not give a toss about money or security and rarely look further than about a year ahead. And it makes me even more proud of that little boy who has been setting himself projects to achieve from about 11 weeks old when he accidentally rolled over and became obsessed with repeating the feat. Who was called 'a very determined little boy who persists when something is challenging' by one of the experts assessing him for a statement of special educational needs. 

It is quite ok to feel a touch of grief, to think that he deserved a better start and fewer challenges. A touch of grief for that lovely newborn baby time that never really was. It doesn't stop the here and now, and it only strengthens the joy. God is good, and God is faithful.