Monthly Archives: February 2014

A Perfect Parents Evening

There was a parents evening on Monday of this week at Boo’s nursery. It was the first since he started there in May of last year.

We had several of these for Sissyboo in her 4 and a half years at the same nursery before she started school. They were usually nice but not very important affairs. It was just a space to share stories of her craziness away from the hustle and bustle that usually markled drop-offs and pick-ups. Not much was at stake.

But with Boo? Well, of course, it’s different. The stakes are always higher with him. This could never just be about sharing silly Boo stories. There’s always so much more to talk about other than him just being the lovely little boy he is.

So I went to the meeting a bit nervous. I had lots of questions and a few requests. Why was I nervous? Well two reasons, I guess. I worry all the time about being THAT parent. The demanding one. The one who tends to micromanage. Who won’t just be content to hear that her child ate and slept well and had fun with his friends, as I heard almost every day when I picked Sissyboo up. No: I am the one who goes in at drop-off and shows them how to do stretches properly or his latest exercises and how to put on splints. When I pick him up, I want to know how his physio went, and every few days, will even ask for pictures. I want to know how he played with others. If his seat straps seem to tight. If he kept his glasses on. (Fat chance!) What choice do I have? I have to be THAT parent. Too much is on the line.

And I guess I’m also nervous, because I fear like we may be in  a bit of a bubble, just as we are in Boo’s mainstream swimming class. Surely, this can’t go on forever. Surely there will come a point where, despite the equipment secured (chair and standing frame, specialist feeding equipment) and all the sweat and tears issued in the process, and despite the fight for one-to-one (up for review again soon), they will say enough. We can’t cope.

Would this be the day?

No. Ok, breathe…

Parents evening went absolutely fabulously. We got the nerves out of the way quickly. They were coping. I knew that really, but it was good to hear from them. And then I quickly realised that they were nervous, too. They clearly love Boo and have risen to the challenge of caring for a child with additional needs with enthusiasm and compassion that is above and beyond the call of duty. But they wanted to know that I thought they were doing a good job. How could they doubt it? I am so grateful to them. I wish I could tell them how much. 

Things aren’t perfect, of course. He needs more one-to-one, although that’s not in their hands. They don’t persist with putting his glasses on his face. No one is quite the drill master I am when it comes to physio. But they try harder than I could ever have hoped and they love him, which is more than any parent can ask for.

We spent 45 minutes talking about Boo. About all he has achieved since moving to the toddler room (the only non-toddling toddler in it). About how his core strength and tone is improving. How is sitting independently for longer and longer times. How determined he is and won’t give up on anything until he’s done it, whether it’s removing pieces from a form board or moving forward a metre on his tummy (however he can – it ain’t easy, I promise) to get to his mirror.

We talked about how much the other children adore him. About how three parents have said that their child’s first word was his name. Wow!

We talked about how the kids and staff are all a little bit lost on days he’s not there or taken away for appointments and how his little friends find his chair and standing frame and call his name as if to summon him back. ‘He’s such a big personality in the room’, his keyworker said. Everyone loves Boo. None of us like it much when he’s not here.’

I couldn’t have asked for more. It was what I needed to hear and so much more than I could ever have expected.

And it marked, I think, a huge achievement all round. For us for battling for the equipment and support he needs and to which he is entitled. (This battle ain’t over, so watch this space.) For the staff who have learned how to do physio and speech and lanaguage exercises, who have learned to tell the difference between Epilim spit-up and proper vomit, and have had to work out how to be especially nifty with allen keys. (Never has such a simple piece of equipment seemed so important since having Boo.)

And, most of all, it’s an achievement for Boo. Whose determination to get on with things and be with his neurotypical pals means that he has settled so well into his room and more than that is thriving.

I’m so proud of you, Boo. So proud. 

 

When Your Crystal Ball Breaks

There are a few phrases that have started to stick in my throat since Boo’s birth. I’ve blogged about one of my pet hates before when I explained why I find it hard to ‘take each day as it comes’. Another that really yanks my chain is one I haven’t heard for a while now, but which is circling round my head endlessly at the moment: ‘Sorry, my crystal ball is broken.’

It’s a phrase that I heard a lot once upon a time, not so long ago. It was in many ways the signature note of the early months of Boo’s life. In my blind fear and panic following his brain bleeds, then the PVL diagnosis, then the likelihood of a cerebral palsy diagnosis and after the onset of infantile spasms, I often used to ask questions after Boo’s future.

‘What does this mean for him?’

‘Will he be able to walk?’

‘Do you think he will be cognitively impaired?’

‘Will he lose skills?’

‘Will he be able to talk to me?’

There were others, too. It’s still a bit too painful to write them all down.

The answer was always a variation on a theme. ‘Harumph’; ‘You got me there;’ ‘Who knows?’; ‘How long is a piece of string?’, or my least favourite, ‘Sorry, my crystal ball is broken.’

I don’t ask those questions any more, although I’d be a liar if I said I didn’t think about them all, and many others besides, every day. You see, I’m a planner. I like to map out possible futures for us all (I did this pre-Boo), so that I can be prepared, think ahead, have a strategy, make the best of things. It’s just not possible to do that with Boo. I realise that now.

But there’s another important difference that has moved my thinking on from the bad old days. Of course, I want Boo’s life to be a long, healthy and happy one. A life of cognitive and physical potential. But I don’t equate happiness with him being able to walk any more, or even being able to sit unsupported. Life is more complicated and beautiful than that.

And I realise now that one of the reasons I so hated hearing that everyone’s crystal ball was broken was not just because no one could give me any guarantees for the future, but because the very fact that I had asked those questions betrayed a certain naivety and even, perhaps, shallowness on my part. No one can predict Boo’s future; no more than they can predict mine. And even if they could, knowing whether or not he attends mainstream school or walk won’t tell us if that future is a satisfying one or not.

It took a long time, and I still live with my old thoughts quite a lot, but I have moved on. It feels good to type that.

But now, the tables have been reversed. Now I am the one being asked to look to the future and I don’t mind telling you that I’m finding it really unsettling. Really, really unsettling.

It has taken me a long time to adjust my sense of time. To reconfigure milestones as inchstones. To think about physical and cognitive goals not as something that should happen in the next 3 months, but hopefully, with the wind behind us, the next three years. I may still have a tendency to micro-manage the day-to-day (and always feel like I’ve not done enough), but the future is something that I have partly let go of. I have goals, hopes and dreams, but my horizon of expectation has shifted. It’s still there, but fuzzier along the edges and more distant.

This has been a herculean effort for me. So I find it very hard, as Boo approaches 2 (actual, not corrected) in April that consultants and others are asking me to plan ahead and make big decisions.

Statementing and schooling come up at many of our appointments now. And different pictures are being painted. Sometimes I hear of special schools, communication devices and a non-verbal future in which we have to wait to see the extent of cognitive disabilities emerge. From others, I hear he’s not disabled enough to go to the specialist schools that are very near us. That there is no concrete evidence of learning difficulties yet. That it’s not clear what would be the best environment for him.

Then there’s a pregnant pause…

‘What do you think, Mum?’ (Why no one can call me by my name is anyone’s guess.) And then: ‘What do you want for, Boo?’

Surely, what I want is irrelevant, I shout in my head. What he needs is what matters and, although I have strong feelings about various things (I know he understands everything we say to him, he does have some words and communicates with them, sounds, and in other, non-verbal ways), I don’t really know what he needs to maximise his potential, or more to the point, what institutions might be able to meet those needs.

It’s the same with Social Services. I am grateful that they are looking to offer us money to help contribute to the astronomical costs of making our house (the house we moved in before I was pregnant so that we could have a second child) accessible for Boo. But I can’t answer their questions. ‘So, do you think Boo will be able to walk up the stairs by the time he’s five?’ ‘Do you think he will be able  to bath and toilet himself by the age of 8?’

I want to scream at them, or failing that to say what I have hated hearing so many times before: ‘Sorry, my crystal ball is broken.’

Don’t get me wrong. I am glad people are consulting us. And some clearly take our assessment of Boo very seriously. That hasn’t always happened. It’s nice that it does.

But let’s face it, I’m no clinician and although I would argue till I’m blue in the face that I know him best (I do!), I am not a healthcare or SEN professional with enough local or sector knowledge to know what out there in home adaptations or schooling is best for him. And let’s be frank about this. Even if I did, not much of this is in my control. Geographical luck and, what it always boils down to, money, will play a big part in all this. We are the parents of a child with additional needs. We just have fewer choices than most.

I feel in the dark. Newly infantilised in only a slightly different way than the way I felt after his birth. It’s difficult to process. And it’s disorienting having made this mental leap to Boo let’s-just-see-how-things-pan-out time, to planning mode.

We have our first TAC (or Team Around the Child Meeting) in March. It has taken 10 months to set up and I hope it will help to clarify some of my thinking about all this, although I am really not sure what to expect of the meeting and would greatly appreciate any advice anyone has on how to get the most out of such meetings.

I know that the statementing process should start in the next few months. It is frightening. I know there are opportunities, but I can’t help but feel that we are walking in the dark. He is so young. So much could change. So much will.

How on earth can I navigate the path ahead when I can’t even see it beneath my feet?

Good News Friday #46

Well I’m a bit late with Good News Friday this week, but it’s half term, so things can slide a bit, right?

And half term is a big part of my good news this week. School holidays involve some juggling in Boo Land, given that The Grumposaur and I both work. But we managed, through some creative tag-team parenting. My own contribution was to take a couple of days off. Boo, Sissyboo and I spent a great day together on Thursday, part of which was spent in a lovely, if overcrowded, soft play centre. They had some good facilities for non-walkers there and run special needs sessions we might return for, but on this day the older kids who couldn’t read the signs saying they weren’t to go in the little ones’ area (and whose parents didnt seem to care) piled in regardless and trampled on those who couldn’t trample themselves. But it gave us lots of time to catch up with a good friend and her toddler and read stories while Sissyboo went crazy with her pal. And on Monday I had an all-too-rare Mummy and Sissyboo day at the seaside, which was just lovely.

The fact we were able to do these things owed themselves to the very best good news this week. I am having to restrain myself from using caps here. We had no appointments. No appointments! The last time this happened was for a week at Christmas (35 appointments ago) and it’s truly liberating. We’re back to 3 next week and ready for action following the break.

Lastly, I had some lovely blogging news. I have been nominated in 4 categories (Best Baby Blog, Best Blog Writer, Best New Blog and Blog of the Year) in the Mad Blog Awards. I am gobsmacked and so grateful to anyone who has voted for Premmeditations. This is a tiny blog, written on a phone with Boo asleep on my lap (like this one) or under the duvet at midnight, and I am a rubbish blogger (no pics, inattentive to SEO, few techie skills). I will eat my hat if I make it to the next stage in any category. But I love writing this blog and being nominated has made me one happy lady. Thank you.

OK, over to you and your good news. Go on share. I dare you!

The Cost of a Premature Baby

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The cost of having a premature baby is substantial. First, there’s the cost incurred by the NHS for life-saving medical care. Then there’s the emotional cost to parents. This is hard to quantify. All I can say is that it is hefty. Life-alteringly hefty. My blog is in part an attempt to explain just how emotionally costly it is, even though I know that the pay-off is huge.

But there are other costs, too. More tangible, grubby little ones. And they can put an extraordinary pressure on you during what can be one the most difficult times of your life.

This was our situation…

Nearly two years ago I went into labour without warning, at work, 11 weeks early, 65 miles from home.

I was given a choice of which hospital I wanted to go to. Fortunately, despite my fear and ignorance of prematurity and local geography, I picked the one with a level 3 NICU (an acronym I didn’t even know at the time).

I have nothing bad to say about the hospital, where he stayed for 2 weeks before being well enough to transfer to another 10 minutes from home for the next 4 weeks. But the costs of our stay (a relatively short one considering how very premature Boo was and the complications – meningitis, brain bleeds – that ensued) were extraordinary.

With a heavy heart, and convinced it was the wrong thing to do (but there was no right option, I now see), I was discharged from the hospital the morning after giving birth to Boo, despite being considered twice for a blood transfusion.

Why did I do it? Well, as I’ve said before, I couldn’t help Boo and The Grumposaur, and more importantly Sissyboo, then only four, really needed me and asked me to come home. They were scared. Their world had been turned upside down. There wasn’t anywhere practical or affordable all of us could stay in or near the hospital.

To complicate matters further, my partner is self-employed and was about to embark on his busiest work project of the year. He had worked on it for 11 months. It would take him away for nearly 2 weeks. He had to work. It was his biggest pay cheque of the year. Self-employed fathers don’t get paternity leave, although that would only have seen us through a third of our NICU stay anyway. If self-employed people don’t work, they don’t get paid. And we needed money more than ever.

First, I had to buy a breast pump, so I could supplement pumping  done on the NICU and build up a supply of breast milk for Boo that everyone told me was vital to his survival and development. And it had to be a good (that is, expensive) pump as my body (still in shock) wasn’t really ready to do this. The hospital had none to loan out. They had three broken ones on the unit that hadn’t been repaired on the grounds of cost. £120 had to be spent.

Every day, often on my own, sleep deprived, driving through tears, I drove a round trip of 110 miles to see my little boy. One day, when I feared he might die, I did it twice. The fuel costs were astronomical. Hundreds of pounds in two weeks, despite me having an economical, sensible car. In the first three days, I spent £60 in hospital parking charges before a NICU nurse told me we could get a discounted weekly permit for £15, although sometimes the men who dished them out we’re reluctant to do so as people tried to work the system, so I should ‘look stressed’ (not hard) and get them to phone the NICU if they contested it.

And then there were food costs. The hospital canteen food was OK, although I would have happily not eaten it. But I needed calories for milk supply and to help me stay awake to be safe on the roads. I tried only to have one meal and a coffee in the canteen every day, but it soon mounted up in price. Perhaps I should have made a packed lunch, I hear you say. But this was no picnic I was headed for. I could barely string a sentence together or see in my peripheral vision. I was just surviving. The fridge was bare (Sissyboo was getting two meals a day at nursery or eating in the canteen with me when she wasn’t). I couldn’t have summoned the will to make a packed lunch if I’d tried.

The costs reduced significantly when we got closer to home and parking became free (one of the few perks for NICU parents of the hospital we ended up in – I have since sunk a small fortune in one to three weekly visits there since discharge). But this NICU  didn’t provide nappies or cotton wool for prem babies as the other had and seemed cross I hadn’t brought any with me after he was transferred (with only a couple of hours; notice) arriving at eight in the evening. I sobbed when I realised what a rubbish Mum they thought I was and went out to buy nappies at 6:00 the next morning. Preemie nappies are, of course, very expensive. Only one shop, 8 miles from us, sells them. I live in a town with several chemists and two supermarkets.

I can see that some of these costs are unavoidable, but meeting them can be difficult for the parents and families of babies born too soon or sick. Meeting them when you are in such a vulnerable state makes a difficult situation worse. Having to let your partner work and each go through this intense experience separately is impossible for both parties. It’s a miracle we are still speaking to each other, to be honest.

But we are and we met the costs. It was hard, but what choice did we have? Others are not so fortunate.

This is why I am supporting Bliss’s Thunderclap It’s Not a Game Campaign, which is campaigning for better provision for the families of premature and sick babies to help them through this difficult time. It is easy to give your support to this campaign, by visiting their Thunderclap page and using social media to affirm your support.

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A day at the seaside

March 2012. Mother’s Day.

I was asked what I wanted to do. How the three of us should spend a day out. Easy really. A one-word answer: Brighton.

I can’t quite explain why I like Brighton so much. It’s rough around the edges to be sure (maybe I am too). But I have always loved it. Maybe it’s the connection to a branch of my family I have always been close to even though I am now geographically distant from them. Maybe it’s the sea. I have always loved the seaside and piers. Maybe it’s the fact that no one is out of place in Brighton, no matter what you eat, who you chose to eat with, or what you wear while eating it. All of this appeals to me.

We had a lovely day, that day two years ago. The Grumposaur, Sissyboo and me. I was just about noticeably pregnant, but very tired. I enjoyed being able to sit down to watch The Grumposaur and Sissyboo (before they had those names) playing crazy golf. I enjoyed eating doughnuts with them on the beach (despite not finding it easy to get up after sitting down on the not very comfy pebbles with my slowly expanding belly). I remember even enjoying going on the big wheel despite my fear of heights.

I also remember thinking about all the things I would do before ‘the baby’ arrived. I remember looking forward to doing those things when I started maternity leave in a few weeks’ time, a few months before the baby was supposed to arrive.

Except it wasn’t a few months. It was two weeks. Two weeks, before Boo (‘the baby’) arrived 11 weeks too soon.

That day in Brighton is lodged in my head as the last memorable family day  we spent before his birth. And as if my memories weren’t potent enough, we have an over-priced fridge magnet of the three of us (with Boo in tow) to prove we went on that big wheel. I see it every time I head for the milk or margarine. It’s an all-too vivid reminder of what we thought was going to happen with our lives. It’s an all too visual reminder of what actually did take place.

I have been back to Brighton only once since Boo decided to make his unexpected arrival. Sissyboo fell over on the pier and badly cut her knee. It was cold. I think I enjoyed it despite those things, but can’t really remember. To be honest, I think I’ve avoided Brighton, a place I love, because of what it has come to symbolise: a life we won’t lead now.

But when I announced to Sissyboo that I was taking Monday of half term off work and asked her where she would like to go on a Mummy-daughter adventure, she said, without any hesitation, ‘Brighton, Mummy.’ What could I do?

She had a plan. Doughnuts on the beach. Playing on the slot machines on the pier. A mooch about the shops. Maybe lunch out. She is my daughter, after all. I said ‘Yes’. What else could I say?

We dropped Boo off at nursery. Sissyboo badly needs and deserves one-to-one time with me and he needs physio and the one-to-one he gets there. I lingered at drop-off to show his keyworker how to fit his arm splints, to update them on his physio exercises and to show them some new stretches. Could they tell I felt guilty about leaving him?

And then we headed off. Sissyboo and I talked at least 50 shades of nonsense on the journey to the coast and parked up in our regular car park. As I got out of the car, my mind went into the usual overdrive. Where were the nearest accessible changing facilities for Boo? I should probably change his dribble bib? Did I pack a spare? Would he need a snack just yet? Had he slept enough? Or maybe too long? I told Sissyboo I would get the buggy out of the boot first and then get her. And then she reminded me: Boo was at nursery and not in the car.

Oh yeah. Right.

So we headed off down towards the pier. We looked at the big wheel, but didn’t fancy another trip on it in high winds. The pier was closed until 11 and it was 10, so what to do? ‘Crazy golf?’ asked Sissyboo. Why not, I thought.

I asked her if she remembered playing with her Dad on the day the photo on the fridge magnet was taken. She denied point blank that she had ever heard of crazy golf, let alone having played it for 18 long, holes with her Dad nearly two years before.

It was windy and a bit damp. For the first two holes I spent most of the time telling her how to hold the club and position her feet (she is her Mother’s cack-handed, non-sporty daughter after all).

But by hole 5, we were in hysterics at our incompetence. We had forgotten it was windy and damp. We had forgotten we had been there 2 years ago when our hopes and dreams were different.

We hadn’t forgotten about Boo, though. How could we? That little boy, despite all the difficulties he faces and we face as a consequence, is the North Star of our lives.

But you know what? We also remembered that we were other people too. We were and are his Mum and his sister. And we are also us. The us were we two years ago and the people we are now.

And I realised that I won’t be worried now about going back to Brighton. Things have changed a heck of a lot in the last two years. But we still know how to have fun. In fact, I now realise that we never really knew what fun was until now.

Oh and next time, Boo will be coming with us to the seaside. And we will probably laugh even more.

 

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