On loss…

My best friend buried her baby today.

This is a sentence no one should ever have to write though I think it is more common than we know.

This beautiful girl, born 4 months ago, has stopped living before she even started. She’d only just got going. She was loved. She was wanted. She was not ill. She was not sickly. She bounced. She giggled. She was cuddled. And yet still. She is gone.

An unexplained medical anomaly brought this news to my phone 24 hours after her mother and I had been texting about the house she was looking to buy. To set up her completed family. She’d always felt that three children was the right number. So complete… the next chapter had begun. And now they are one less. There is a hole. I don’t know how it can ever be filled.

We talk, she and I, about the parallels between our lives, and how there are similarities between having a child die and having a child with disabilities. She’d brought this up, though it had struck me too.

It is a life unfulfilled, it is the life you’d expected forever changed, it is you forever changed. You take a path few you know have trodden. It is achingly lonely.

She noticed people said the same things. They say: I can’t imagine how you must be feeling.
She said: You can. Imagine your child has died. Feel that. Then double it and double it and double it some more.
I said: People can, but everyone’s grief is different. People worry that by saying I feel your pain you may say How can you? Your child is still living? And what answer is there to that?

People say: I don’t know what to say.
She said: even by saying that, you are acknowledging my grief. Thank you.

People said: we are praying for you.
She said: I don’t have religion, but thank you, this gives me surprising comfort.

Me, I’ve noticed the paucity of the English language when it comes to grief. We have words in abundance when it comes to love but death, misfortune…? We are lacking. Our tongues slip away from the words, sliding the other way. We do not want our words to intrude on someone else’s grief for fear they are wrong, but without trying, without reaching across, we leave people isolated when really they need people the most.

What I wanted to say was: I am so sorry. I am so so sorry for this heart wrenching pain that you must be feeling, I want to make it go away. I want to fix this. Because in Small I have felt a tiny part of this and much as he brings me untold joy, I wouldn’t wish that loss of dreams on anyone.

But what I said was: I am sorry, she was beautiful. And I am here. And I’m sending love and strength. Because that’s all I uselessly have.

Today my best friend buries her daughter. And now what? Where does her life go now? There is a long long journey back to any kind of normal. I know it scares her. It scared me too. And I can only hope I can be there for her as much – or as little – as she needs. If our situations were reversed, I know she would have the right words.

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Working… with a disabled child

One woman stands up as the rest, 16 or so, remain seated, encouraging her to speak.
‘I’m a parent of a disabled child and… and… I’ve got a job too’.
As if a huge weight has been lifted from her shoulders, she sits down, grinning.

This, obviously, never happened, although if ‘Parents of Disabled Children who also have a job… Anonymous’ were to exist, I’d be right there, at the front, signing up.

There is an assumption amongst most people that having a disabled child must make you, the mother – for it is almost always the mother – a full-time carer. There’s that blurred line again – from mother, to carer. Mother has the lifeline mapped out – from totally dependent newborn all the way through, slowly, slowly to fully fledged independent adult. Carer tells you, immediately, that this is not going to happen.

There is guilt attached to being a working parent, and this somehow increases with a pre-school disabled child. Someone else is looking after your child for you in order for you to work. The guilt here is something that I had to work through. There is the overriding ‘will they look after him as well as I do?’ ‘If I’m not there for him every single day am I letting him down more?’ (because, at the bottom of my heart I will always feel like I let him down, just by his having been born as he is) ‘Will they understand him, love him, cherish him as much as I do?’ ‘How could they…?’ And because his needs are great, and his understanding is not, I worry, we all worry and yet… Small’s childcare provision is great. It is clear that his 1:1 loves him and with that I walk away each day safe and happy in the knowledge that he too will be happy.

‘Small goes to nursery….?’
‘Yes, yes he does. And whilst he’s there, I work.’

For many reasons, I have to work. For one, we need the money, plain and simple. For two, I love my job. I’ve had to re-arrange it since having Small. I no longer work 4 days a week, I do 2 and now that we’ve moved I work mainly from home. I can’t do the big projects anymore, I do the smaller ones, the ones that take more time and so need less days per week, but my hand is still in. I have not relinquished it.

But life with Small has not made this easy. You guessed it, there are hospital appointments, there are many therapists that both come to my house, that we also visit, who give us a program of work to be done. There are social workers to be talked to, school plans to be made… and every one of these needs an hour’s allocation at best. All during the working day. On top of this, there are people and equipment to be chased, new therapies to be researched. Nothing with disability is quick, everything takes time, and there is an innate assumption that this is ok. You’ve nothing better to do anyway.
‘I’m sorry, we can’t make that appointment, I’m working.’
‘…Oh.’

To top it off, the government, in its wisdom does not help the working parent. Does not help the working parent of a disabled child. I realise I’m late to this party but, as I blithely tried to up Small’s hours at nursery (by all of half a day a fortnight) I discovered that the additional funding he receives only funds his 1:1 15 hours per week. He does 30. The nursery had quietly been funding the other 15 out of its own pocket and had never told me. If they had not done this, I never would have got back to work. It’s that simple.

But they could not fund any more.
I could not, and cannot, believe the injustice of this.

I am not an expert on this subject by any stretch of the imagination but I’m pretty sure there are many many parents of disabled children who cannot get back to work because of this legislation. National say it’s a local issue, local say it’s national… but surely, surely this is a national issue? What is better for people’s state of mind, for their pockets and, ultimately for the tax coffers, than parents being helped back to work if they want to be? The alternative must surely be more expensive? a huge drain on those headline-grabbing benefits and a drop in self-esteem for those involved – with all that that brings. This cannot be cost-effective either fiscally or emotionally.

I will be forever grateful for Small’s nursery’s act of kindness.

The Special Educational Needs Code of Practise is currently being re-drafted. On page 46 you will see:
Local authorities must also secure sufficient childcare for working parents and must work with providers to plan and manage local provision to meet the needs of families and children in their area

I’m aware that this will be costly to implement and I wonder if it will make it to the final bill. I’d like to think that the long-term benefits will outweigh the short-term expense.
Am I being a little over-optimistic?