Monthly Archives: February 2015


Things have gotten on top of me lately. Things have been pretty relentless. We still haven’t heard a dickie bird from the LA in response to our MPs letter which supports our request for them to reconsider their funding cap on support for Boo in nursery. Neither have we heard from his nursery whether they will accept our proposal to let us pay for the 1:1 support he needs so that I can keep my job and we can keep our home. The wait is excruciating.

And on top of that, Boo got ill last week. A virus. A nasty one, but just a virus. His sleep (usually bad) has been appalling. His temper (usually buoyant) has been awful. My back – not great at the moment – is extremely painful, while Boo’s ability to do things (always challenged but determined) became practically non-existent as his tone in his trunk decreased even further making his torso do its best beanbag impression. It has been so hard to see his frustration. So many of the memories and fears of the NICU flood back. It’s hard to remember even though we never really forgot in the first place.

People are kind. They keep asking me how I am doing. For those who know me best this is a kind of code: Are you getting depressed? Do you need to see your GP? Most, however, mean well but for them ‘how are you doing’ really means: ‘I know things are tough and I’m sorry but let’s make small talk so I don’t have to feel uncomfortable hearing how crappy your life is’.

Both groups get the same answer: ‘things are hard – so much is on the line at the moment – but we’re doing fine’. That’s true. That doesn’t mean I am not finding things really difficult at times. But it’s true.

And I have to keep pulling my socks up and not letting the green eyed monster come and make things worse by feeding off life’s petty envies. Like when people I don’t know on a local parents forum I am a member of on Facebook seek advice for the latest ‘crisis point’ in their lives: an otherwise healthy child teething for the first time; a two-year-old who has slept through for 21 months suddenly waking once a night.

Part of me screams inside ‘you don’t know you’re born’. Then I start to like myself a little less. I remember the pre-Boo me, Sissyboo’s Mum. A new parent who also got stressed about teething and felt aggrieved over the kinds of disrupted nights I would dream of if only Boo would sleep long enough for me to. Everyone has their problems. And things that no longer make the radar in our home any more feel bad to others. I get that. I am not such a different person that I can’t remember that any more.

And I also know something else: we are lucky. Unbelievably lucky.

Lucky, that I gave birth out of area right near a level 3 NICU that was the best place for Boo to be born. That he survived probable meningitis, even if its legacy is cerebral palsy. We were unbelievably lucky that  he developed infantile spasms out of area, near where my folks live, and where there is one of the best children’s hospitals in the world where some of the country’s leading experts on a rare form of epilepsy are based. They stopped these catastrophic seizures quickly. What would have happened if they hadn’t doesn’t bear thinking about.

We are lucky that he lived. That he came home. I know this.

That’s why I say ‘so much is on the line at the moment’ rather than everything. Because awful as things will be for me and for us if our lives are turned upside down (again) by the latest episode in our prematurity and special needs journey, we have Boo and each other.

Over the weekend I learned that a little boy we know only a little through Boo’s regular therapy suddenly and totally unexpectedly died. The sadness and fear overwhelmed me in an instant. I hugged Boo and his sister a little more often and a little tighter as I was so viscerally affected by this tragedy for a loving and strong family who have fought for years for the best life for their brave little boy.

Plenty of people have life easier than we do. I don’t feel bad about saying that any more. But plenty of people experience unimaginable loss and heartbreak of a kind I selfishly hope never to experience. However hard life is because of the challenges involved in Boo’s care I would deal with them 20 times over to know he is in our lives.