Happy Birthday Maggie and Alice!

It's about time I updated this blog. But for now I just want to wish our beautiful and astonishingly clever girls a very happy birthday.

Alice had a whole range of Beatles presents, Maggie had Mr Tumble. 

Four years. Not an easy four years but, despite thinking a few times that we wouldn't, we made it. 

HAPPY BIRTHDAY!

Picture Gallery

I've created a Flickr page just for photographs of the girls. Click the pic below to view:

Shannon's Skin Cancer

Earlier this week Shannon had her left nostril cut away to remove skin cancer. In order to rebuild the nostril she then had an operation to attach a huge lump of skin from her forehead to the side of her nose. They also took cartilage from her ear which has left a sizeable hole. But as well as having this horrible thing attached to her face – which obscures her vision and looks horrendous – she’s also got stitches running from her brow to her hairline. She looks as though she’s either had a bad car accident or been attacked with a meat cleaver. She’ll be disfigured like this for at least a month, followed by many more months of healing.

I feel very sorry for her. It’s a terrible thing.

So far though she’s been absolutely brilliant. A few wobbly moments but generally hanging on – despite being in quite a bit of pain and discomfort. To be honest, I don’t think it’s quite sunk in.

As well as knowing that she can’t go out looking like that – she can’t cover her face up – there are the practicalities of handling Maggie by making sure she doesn’t grab her face. Of course, we can’t just tell Maggie not to do this as she wouldn’t understand. But even if she did understand she can’t control her movements. A quick whack from her flailing hands would be enough to undo the whole thing.

Naturally, the overall feeling is that this is just another thing to add to the pile of misery. Because it’s not enough that she has a disabled child to care for.

But I imagine she’ll do what she always does: get on with it. And be as strong and as determined as she always is. Or, rather, always appears to be.

Pics

One of the downsides of having kids is that when the sun shines the pressure's on to get out there and make the most of the day. Here we are then, making the most of yesterday.

The top two photographs were taken by my dad, the bottom two by me.

Disabled Children Need Your Money. Please.

To get straight to the point: our friend Ryan is doing a charity bicycle ride this week to raise money for East Anglia's Children's Hospices (EACH). As regular readers of this blog will know, EACH mean a lot to us and to many disabled and life-threatened children. We'd be very grateful then if you could sponsor Ryan. It doesn't have to be much: a fiver will do. Thank you.

Here's the link:

http://www.justgiving.com/rwnl

To waffle on a bit, below are a few words from Ryan himself about why he's doing it. I'd like to point out here that he's not a cyclist and he's doing this all on his own. So as well as being a rather wonderful and courageous thing to do, it's also quite foolhardy. Especially in this weather. So you never know - he may fall off and die or something and then get loads more donations and national publicity. Best of all, you can say: "You know that cycling bloke who was found half eaten by foxes on the side of the A1 the other day? I sponsored him." It can be your little claim to fame.

In case anyone without a sense of humour is reading: I don't really want Ryan to die. It's just a joke. Besides, I want him to live so he can do this every year. Every single year. Until he expires from old age and exhaustion.

Within his piece he says some very nice things about me and Shannon. They are, of course, all true. And below his piece is something I wrote about EACH last year (just in case you need to know a bit more about what they do and what they do for us).

From Ryan:

I don't really enjoy the company of other cyclists. Conversations with them are usually awful. I can understand why they talk about things like speed and mileage. That's fine. I always like to hear about achievements. But as soon as the conversation turns towards anything technical or brand-related or "sustainable", I switch off.

So I don't want to talk too much about actual cycling while I've got this blog. It'd bore all of us.

I want to talk about other things. Like why I'm doing this trip.

I can't think of a family I admire more than Paul, Shannon, Maggie and Alice. Given all the difficulties that surround Maggie's disability, you'd understand if her parents were too preoccupied to think so sharply about the position they're in. Or to stay as rigorously in touch with the rest of the world as they do. Or to make so much time for other people. Yet not only do they achieve all of this, they so often make it look easy too. It obviously isn't.

Right up there, too, is their attitude towards the world of disability. We all know that it's a world of sadness. But thanks to them, we know that it's also a world of sanctimony, incompetence, indifference and laziness. It's excellent that they both get angry and react against all of these things. Because these things are genuinely fucking scandalous.

Reading this blog makes me angry, too. Angry that charities such as EACH have to exist, and angry that they get no government funding.

But I also find it heartening to understand what EACH mean to families like this one. On a daily basis, they improve the lives of countless children, and they improve the lives of all their parents too.

Whenever I've thought about that during my training for this trip, it's cheered me up. Despite the freezing conditions. And the knee pain. And the arse pain. And, to be honest, the protracted period of depression with which a lot of my training has coincided.

Please donate. If you can.

All of us will be grateful for every last penny.

Cheers.


How EACH helps us:

EACH (East Anglia’s Children’s Hospices) supports families and cares for children and young people with life-threatening conditions across Cambridgeshire, Essex, Norfolk and Suffolk. They provide care and support wherever the family wishes – in families’ own homes, in hospital or at one of their hospices in Ipswich, Milton and Quidenham.

They are a registered charity (no. 1069284) and need to raise around £4.8 million in public donations to deliver their services this year. This amounts to more than £13,000 a day, every day of the year.

We first heard about EACH (Quidenham) from a nurse at the hospital when Maggie was still in intensive care. I remember thinking then that I’d never be happy taking her there. I didn’t want her mixing with disabled kids because I didn’t want to accept the fact that she was disabled. It’s called wishful thinking.

The first time we took her there I was overwhelmed with sadness. By crossing that threshold it was almost as if we were surrendering her to disability. Everyone was very kind and understanding but I despised them all, including (and maybe especially) the kids. As far as I was concerned Maggie shouldn’t have been there.

Over time, those feelings passed. This was partly as a result of us slowly accepting Maggie’s condition but mainly as a result of realising how fantastic the people at EACH are. They have only ever had Maggie’s best interests at heart. Ours too. More than anyone else we have to deal with, they understand what our lives are like. Not just the day-to-day stuff, or things like the lack of sleep, but the pain and sadness that comes with having a disabled child.

On the surface, what EACH gives us is very simple: they give us a break. They take Maggie and allow us to have a few days and nights off. But more than that – much more than that – they make Maggie’s life richer. The people there aren’t just carers, they’re professionals who are dedicated to making disabled kids’ lives better. So Maggie gets physiotherapy, cognitive support, music therapy, play therapy and all kinds of good stuff that will enable her to have a better chance in life. She also gets love and care and undivided attention.

In this respect, EACH has been, I’m sad to say, more of a friend to us than quite a few of our real friends. A consequence of having a disabled child is that you become isolated. Not simply because of the practicalities associated with caring for a child with a disability, but because people don’t seem to want to know you. Or they just forget you. But with EACH we get help and support and understanding, both at the hospice and here at home when they come out to give us respite or to babysit. As a result of this, Maggie has grown very fond of many of the people there. So much so that these days she even looks forward to her visits.

One of the things I like about EACH is its purity. It’s a charity that looks after disabled kids and their families. Kids and families who, through no fault of their own, lead extremely difficult lives. (I should point out here that there are families who use EACH whose lives are much more difficult, and sadder, than our own: it’s not called a hospice for no reason.) Which is why it’s almost scandalous that it’s a charity, rather than an essential service. If we’re talking about the most vulnerable people in society, the most deserving even, then I’d have thought that disabled children would be the ones most in need of care and attention. I’d think that, by the way, even if I weren’t the father of a disabled child. Yet EACH has to fight it out with all the other charities out there.

Here, again, is the link to Ryan's Justgiving page:

http://www.justgiving.com/rwnl
.

Happy Mother's Day Shannon!

As you may have seen from the previous post, Shannon’s been struggling a bit with being a mum. Or, rather, struggling with being the mum of a disabled child. Or, rather again: struggling with the guilt and worry that comes with being the mum of a disabled child.

Which, as someone pointed out, is more evidence of a what a great mum she is. Because she does genuinely worry about all that stuff and does genuinely beat herself up about it.

That she doesn’t need to beat herself up is a given. Of course she doesn’t need to beat herself up. But she does and she will.

I think part of the problem with this is that we’ve both been pretty good at putting on a brave face and getting on with it. If you only know us from this blog then you might think that all we do is moan and get upset. But that’s not true. This blog is a specific outlet for that kind of thing. In reality, in our day-to-day life, we just get on with it. For instance, when we’re asked by friends how things are, we tend to reply: “Oh, you know, the usual.”

To be honest, I think that may be part of the problem: we don’t give ourselves enough credit for how hard all of this is. We take it in our stride but are occasionally tripped up. I used to think, when people said “I couldn’t do what you do” that they could. But now I’m not so sure. Being on Twitter these past three years has opened my eyes to how some people can’t seem to cope with even the most trivial upsets. The big babies. But then, maybe I’m being unfair – maybe Twitter is as much an outlet for their moaning as this blog is for ours. And of course everyone’s entitled to their problems and everyone’s entitled to moan. I appreciate that.

But – and this is leading somewhere- I genuinely believe that not many people could do what Shannon does. It’s not just the coping and the managing and the getting things done. It’s also the dealing with this not being what she thought motherhood would be. And dealing with the sheer fact and heartbreak of having a beautiful daughter who is severely disabled. Who will always be severely disabled. This isn’t the same as having a difficult baby or troublesome kids or whatever. This is for the rest of her life.

I wanted to write something for and about Shannon on Mother’s Day. But I didn’t want it to be just the usual dippy ‘best mum in the world’ stuff. Besides, what she has to deal with often isn’t just the stuff you’d normally associate with being a mother. Shannon isn’t just a fantastic mother because she’s great at all the maternal stuff. She’s a fantastic mother because she’s a fantastic person. And yes, this might sound trite but: both of our girls should be very happy and grateful that they have her for a mother. They could have had someone else. Someone not nearly as brilliant and as wonderful as Shannon is.

Mother's Day (Shannon)

This Sunday is Mother's Day in the UK - and the whole mum thing is something I've been thinking, and worrying, about a lot lately. Not just lately, actually - I think and worry about it pretty much non-stop. Which is very annoying - like having Guilt FM broadcast through my mind 95% of the time. And playing loud too.

For obvious reasons, being a mum isn't how I thought it would be. Or how I thought I would be. All my life I've been good with kids - fun, patient, natural. I liked them and they liked me. It was easy, and yet being a mum isn't at all. It's really, really hard and although I do still feel natural, I don't feel like I'm fun or patient. And I move constantly in my feelings about that - from beating myself up for not being happier, more patient and more fun to resenting the circumstances that have made it so difficult to be all those things. There are so many, many times when I'm not enjoying being a mum, and that just feels wrong and awful. It isn't how I'm meant to feel.

I wasn't expecting this landslide of guilt every day - especially with Maggie but also with Alice. I don't put Maggie in her standing frame every day like we're supposed to. I don't do anywhere near enough physio with her. The same goes for her body suit, her sleep system, her splints, her communication. I think I just want to be a normal mum, and those things aren't normal. But not doing them will wreck her physically over time - and for all the guilt 'normal' mums have for their children, they don't have to deal with that.

But I do. And moving in these disabled circles, so many other mums do too. The last time we were in hospital to change Maggie's tube a severely disabled 11 year old girl was just across the way. She'd been in hospital for four of the last six months and she was dying, her brain was shutting down bit by bit. As much as I have to imagine with Maggie, I couldn't imagine that - and I felt lucky. Going to Quidenham often makes me feel lucky too. It could be so much worse - and I am so grateful that Maggie is as bright and responsive and happy as she is. That she knows we love her so, so, so much - and that she can express her love for us.

I know I'm a good mum to Maggie and to Alice, but I'd like to be better. I'd like for it to be easier but I fear it's going to get harder instead. And sometimes I'm not sure how much harder I can handle. They're such beautiful, wonderful girls, my girls, and they deserve the mum I was going to be.

Maggie

A rather nice photograph of Maggie, taken by my dad yesterday.

Alice and The Beatles

It's not all doom and gloom around here. One of the things that's made me very happy recently is Alice's discovery of The Beatles. I encouraged her a bit, of course, but even I was surprised at how much she's taken to them. In fact, she's getting a bit obsessed.

At this stage it's mainly about Yellow Submarine - the film, the book and the CD. At night she insists on having the music piped into her bedroom and during the day it's either demanding to watch the film or read the book. More than that, there are constant conversations about them: who sang which song, where Ringo lives, re-enacting scenes from the film etc. Our car is now the Silver Submarine.

It's all very sweet and I love how she's aware that there's something magical about The Beatles. It all fits with the way she is: bright and imaginative and full of wonder.

Anyway, here she is singing The Beatles. As audition tapes go, it shows real promise for a three-year-old. But if she really wants to make it, I think she's going to have to at least wipe her face, control the coughing and maybe think about getting a different backdrop.

More of The Same

Maggie's just been rushed to the hospital because the feeding tube that goes deep into her gut came out. The hole that's left in her stomach heals fairly quickly so they have to shove the thing back in as soon as they can. Actually, that makes it sound more straightforward than it is...

The last time the tube came out they couldn't fit one because they didn't have one. Despite the fact that they should have had one. Why didn't they have one? No-one knew. Just one of those things. You know, the usual hospital bullshit.

Shannon rang this evening to check whether they've got one this time (which they should have because they promised us, what with lessons being learned etc.) and they had no idea. No-one was answering the phone down at the department where they keep all their tubes or wherever it is. But she's gone up there anyway.

The reason I'm writing this, really, isn't because this is out of the ordinary. On the contrary, it's because it's all so commonplace. To the extent that we've just sort of accepted that Maggie has so much shit that she has to deal with. And I think this is why I haven't updated this blog in a while: because it's all so much a part of her everyday life that it hardly seems worth mentioning. Or worth moaning about. It's just the way it is.

But occasionally it gets to me a bit. So I write something like this. And although nothing changes, it makes me feel a little better.

Update: Maggie returned home last night with a makeshift tube that only allows for daytime feeds - rather than it being the combined tube that allows for overnight feeding. As I mentioned, they're supposed to have the proper tube at the hospital - especially because they promised, after last time, that they would have. We've just been called by one of the surgeons from the hospital: they've had to order a tube and don't know when it'll be delivered. Hopefully by Friday. When I pointed out to him that they were supposed to have one on site, he replied: "Ah, yes, er, well...".

As I said earlier: the usual hospital bullshit.

We Don't Have To Legally Do It!

I just had a row with one of the blokes who works in the office at Maggie and Alice’s nursery. As I pulled in this morning I noticed that the bays where the staff park had all been cleared of snow. The parking bays for parents – and particularly the two disabled bays – hadn’t been cleared of snow. I remarked to one of the receptionists - as I struggled past carrying Maggie, pulling her (very heavy) chair, keeping an eye on Alice and propping open the doors with my feet – that I thought this a little odd. Yes, it is a bit, she replied.

After dropping off the girls at their class, I returned to reception to ask whether I could expect the disabled bay to be clear when I returned to pick them up. The receptionist started to say yes but a voice from the back of the room shouted: “We don’t have to legally do it you know!” This made me angry: “Oh, you don’t have to legally do it? Fine. I’ll just slip and drop Maggie shall I?” I then stormed off.

As I got a few steps out my anger made me turn back. The bloke who’d shouted had the same idea and we met at the door. He started ranting about how he didn’t have to legally clear the snow from the disabled bay or from any bay for that matter all we have to do is clear the road and I’ve been out here for four hours this morning clearing all this and whah, whah fucking whah. To the latter point I suggested he take it up with his employer. To the other point I responded that legally people don’t have to do lots of things – but they do. It’s what makes us nice, decent human beings.

And, of course, he didn’t have to legally clear the staff parking bays either. But he did. If all the parking bays had been left covered with snow I wouldn’t have said anything.

Most days – twice a day – me or Shannon struggle through those nursery double doors carrying Maggie and pulling her chair and keeping an eye on Alice. We haven’t ever – not once – asked for assistance. Even though we’re running the risk of dropping Maggie or doing ourselves an injury. And every day the people in reception watch us doing this. Today it would have been good to have had a little assistance. Or, rather, to have had a little consideration.

But really it was the “we don’t have to legally do it” that boiled my blood. Two things: it’s a very mean-spirited view of the world and, worse, the implicit suggestion there is that I was asking the fucking earth. Who do we think we are with our pain in the arse disabled kid and unreasonable demands?

NB: The girls’ nursery, by the way, is fabulous. The staff there are great and Laura – the young woman who looks after Maggie – is marvellous.