Monthly Archives: July 2013

Taming the Green-Eyed Monster

Image

Ok, you probably won’t like me much when you’ve read this post. I’m not desperately fond of myself at the moment, either. But the deal I made with myself was that this blog would be me warts and all. Otherwise, what’s the point?

So here goes. Me in all my most resplendent unattractiveness. I have been wallowing in self-pity for much of the day. Boo seems to have plateaued developmentally. His low trunk tone is stopping him getting much further and no matter what or how much I do, I can’t seem to fix this. I am desperate for him to sit. For the hope that him sitting would bring me. The hope that some gross motor milestones might actually be his for the taking. But I’m also a bit desperate for my back, too, if I’m honest. It’s not coping fabulously at the moment.

I hoped when I told the physio this morning about my fears that he was slowing down that she’d tell me I was being daft. She didn’t. She agreed. She referred us to wheelchair services for an adjusted buggy. We talked about how desperately we need our OT referrals to come in. (We have be one the waiting lists for some time.) We talked about how the fact he doesn’t currently have adequate seating is keeping him back and may cause damage to his back. While trying to process all this I spent ages on the phone looking into conductive education and feeling overwhelmed by the prospect and commitment it would take. Let me be clear, I am 100 per cent committed to Boo’s health as it is, but there’s not much slack in the system to take up for new things. Something would have to go. It can’t be precious time with Sissyboo, or, unless we totally reconfigure life and up sticks and move schools etc., my work. Maybe it has to be my sanity. Then a bunch of trivial things went wrong. A bit fell off the car etc. You get the picture. Wallow, wallow, self-pity, wallow, wallow. See what I mean? Not very attractive. It gets worse…

I had to get Sissyboo from school and I stared hard at my iPhone as if I was doing some really importantly work (actually I was tweeting, maybe that constitutes important work, in a way). I didn’t want to be approached by anyone. I couldn’t stand even overhearing their conversations. Like the Mum who was saying ‘what a nightmare it was’ and how ‘stressed’ she was about trading in their colossal 4×4 for another new 4×4, or the other parent who was irritated that their 6-year old didn’t do as well in their grade 2 piano exam as they’d hoped, or another who said she and hubby had been out so many times this month that they’d run out of babysitters and would have to miss out on a dinner party next week. None of this is made up.

I gritted my teeth and tweeted harder, hoping the tears welling up in my eyes wouldn’t show behind my sunglasses. I should have such nightmares, I thought. You don’t want to know what mine are like. I don ‘t get them every night. But then I don’t sleep much. Boo may never walk, let alone tickle the ivories and if The Grumposaur and I go out again before I’m 50 (still some years away, I hasten to add), well, I’ll be amazed.

Walk a day in my shoes, I internally screamed. And then my anger turned to me. Who the heck was I to belittle others’ problems? I may never have owned a 4×4 and my dinner party days are long since over, but I have had the luxury of being a parent to a neurotypical child before having Boo. I got stressed at times and life often felt difficult. I didn’t know I was born.

I’m glad I had that experience. And I wouldn’t really want others to feel bad about having it good. Because to feel that way, you’d have to have had a glimpse of the bad. And I would do anything I could to stop others having it bad. Like us and so many families like us or in much worse situations than us. I am glad the playground mums’ problems extended to cars, pianos and nights out and not anything worse. I really was.

By contrast, I will never be glad that Boo was premature. Never be glad that he is disabled. Never be glad that Sissyboo has to be affected by things that no child should be affected by. But then I looked at Boo’s dopey, sleepy happy grin (aka his seven dwarfs grin) after I gave him his bedtime bottle just now as Sissyboo read me her school home reader and I cannot imagine being happier.

Enough of the jealousy, then. Life is hard as hell some days. And I refuse to pretend on my blog, as I often have to in life, that it isn’t. But I really wouldn’t want it to he different. Let it go, Mrboosmum. This is your world now and it may not all be trees of green and skies of blue, but it’s still wonderful.

Advertisements

Milestones Aren’t Just for the Little People

Image

If you’ve read this blog before, you will know that milestones figure hugely in Boo Land. I wish they didn’t. I didn’t know how lucky we were with Sissyboo. She was sleeping through at 3 months, sitting at 5, crawling and pulling to stand at 8. She walked at 12 months. Spoke in complete sentences, well paragraphs, really, by 2 years, and otherwise was a little miracle.

But I didn’t know that at the time. Not until I had Boo and saw/see him struggle to do any of these things. At 13 months corrected (15 1/2 months actual) he cannot do one of them. I have spent 12 months trying to teach him to roll. Not happening. I think he will sit at some point, but I may be drawing my pension by the time that happens. Helping him to achieve these elusive goals takes up so much of my time and mental energy. All that physio and therapeutic handling. I spend hours and hours doing it every single damn day.

And if there’s a choice between doing something with Sissyboo or fitting in an extra bit of physio with Boo, it’s always a hard call. She doesn’t need me in the quite the same ways as he does. His needs are more obvious and more acute. But she needs me, just as I need her. She is the first light of my life. And even Boo cannot eclipse that.

Juggling the competing needs of Sissyboo and her brother is one of the hardest things I have had to deal with since his birth and it causes me much guilt and sadness on a daily basis. In recent months, much of this guilt and sadness has centred around something really trivial, in the grand scheme of things: her bike riding, or rather, her inability to ride without stabilisers.

Now she’s 5 1/2 and quite honestly, I didn’t think it mattered all that much. Although she’s had a bike for ages and most of her friends got off the stabilisers in the past year, in my mind, she’s still a wee thing. Frankly, it didn’t seem very important to me. In some ways, it still doesn’t. But for the Grumposaur, this was a huge deal. Saying he is a keen cyclist doesn’t cut it. As he frequently tells me, there are only three important things in his life: the three of us, his job, and the many bikes he owns. I don’t think I’ve put that list in the right order, by the way.

Riding without stabilisers is always a rite of passage, but it became symbolic of all sort of things in Sissyboo’s case. Boo probably won’t be, as his Dad hoped pre-birth, the next Bradley Wiggins. He may never be able to pedal on a bike. So getting Sissyboo over the hurdle of riding without stabilisers became a bit of a Grumposaur mission. She might be the next Nicole Cook. And it should have been easy to get her turning the pedals, right? This wasn’t a milestone that necessitated rerouting round brain damage or endless hospital appointments, after all.

Except Sissyboo resisted at every step. She was nervous. She didn’t care (or actually, I think she realised how much it mattered to her Dad and that worried her). We didn’t give it/her enough time, because we were busy trying to reroute around her brother’s brain damage. And then she outgrew her bike. It was clearly too small for her (and had never fitted her well in the first place, I might add.)

So we held out the promise of a new bike as a treat if she learned to ride without stabilisers. So stupid. She wasn’t fussed and if she minded at all, then that was too much pressure to put on her. So one day, The Grumposaur just bought her the new bike anyway. She was thrilled and last weekend, on the day we were celebrating as my birthday, we went to the park to try it out.

She didn’t want me to let go of her. She wobbled a lot. She didn’t want to let anyone down. She was convinced she couldn’t do it. But a new bike, her brother watching, lots of encouragement and the promise of honeycomb ice cream and she rode 3 seconds without Mummy holding on. Then she rode 5 seconds, then 10, then 20, then 30, then a minute. She stopped after 60 seconds. 60 seconds that felt like 5 minutes. She’d proved her point. (Boy had she proved her point.) She’d deserved that ice cream and asked if she could have it. She did. And I was so proud of her.

It was a truly magic moment, and a reminder to me that she needs us as much as her brother, even if the stakes don’t obviously seem quite so high. Trying to make sure that we don’t let her down as we work with and advocate for her brother is never going to be easy, but it’s our job. And the pay-offs are huge.

Well done, Sissyboo! Your courage and sensitivity amaze us every day. And if your brother has an ounce of your determination and good-naturedness, then his future is bright.

Good News Friday #13

Sorry this is going up a bit late (again), but you see my first bit of good news this week is that Collin Brewer (the councillor who talked about doing away with disabled children like lambs smashed against brick walls) has resigned. And I had to write about it. So I messed up my own blogging schedule by writing a post about that. But you know, it was important and good news, so hopefully worth delaying this.

This week’s had it’s challenges, I must say. Boo has lost his one-to-one at nursery as we move from one funding pot to another. The new funding should kick in in 2 weeks and buy him more one-to-one each day, but in the meantime I’m putting him in nursery for as short a day as possible on the days I work to have him with boot camp mummy for as long as possible. The result: working until the day after today most nights. But I wouldn’t do things differently. However, the tiredness (although not as bad as you’d think) certainly made an unexpected appointment to discuss an EEG Boo had 5 weeks ago and we were told was OK (98% normal) a bit harder to take. Turned out it was a wasted appointment where I was just told the same things again rather than the bad news I feared I’d been called in to receive. Never have I been so glad of a wasted appointment.

In other good news, I really feel a huge weight has been lifted from my shoulders after telling so many people I work with about Boo. Getting through the first day of last week’s conference, during which over a hundred people asked me how Boo was doing, was pretty hard. But it is such a relief to know people know now and to see that it hasn’t changed anything in terms of how they see me. I’m still me. Just a slightly more ragged and, in other ways, more improved me.

I’m happy to report that Sissyboo is doing well at school and outside school (post about that planned for Monday for Magic Moments), although her maths needs work (in other words, Mummy doesn’t spend time doing numbers with her because we are too busy). I cannot believe she has only a few days left in reception. How did that happen?

What else? Oh yes, the sun in shining and I had a lovely day with Boo and some friends from the US at Dover Castle on Tuesday. (Note to self, lugging a 10kg, non trunk-controlled non-toddling toddler to the top of the Great Tower is not great for your back!)  I even got out for a run. My fitness has plummeted since getting injured after my half marathon and going back to work so let’s hope I don’t get that London Marathon ballot place. No: let’s hope I do. I will get fit again.

Oh and I was listed in the Tots100 Fresh Five this week by the lovely Mummy Pink Wellies. I am humbled, gobsmacked and otherwise thrilled.

I hope you have found lots of sunshine through the clouds too, this week. I love hearing from you. So please share your good news below.

Cllr Brewer’s Resignation: or, why I’m not popping a cork just yet

Cllr Collin Brewer of Wadebridge East, Cornwall, has officially resigned. Finally. (In case you don’t know who he is, you can read my earlier post about his improbable re-election to the local council earlier this year and his horribly offensive comments about disabled children here.) I met the news of his resignation as it broke yesterday with relief and some delight that someone with a modicum of political sway had been prevented from allowing the phantoms of personal prejudice to find a voice in public discourse and, possibly, to affect the lives of disabled people like my son, Mr Boo, in very real ways.

But rather like Hayley of Downs Side Up, for whose peaceful blog protest linky against Brewer I wrote a post some weeks ago, I couldn’t get too excited about this. Why I kept asking myself? Common sense and compassion had prevailed. This was a good thing. But I still felt uneasy. Correction: I feel uneasy. Why?

It’s partly that Cllr Brewer was re-elected in the first place. His discrimination against disabled people (especially children) was already well known. He shouldn’t have been allowed to stand and he really shouldn’t have been re-elected. And when he was re-elected and again indulged the press with his concerns over how children with additional needs placed unacceptable pressure on scarce resources and, where possible, should be terminated at birth, there should have been systems in place to remove him from office. There weren’t. He could, in theory, stand again.

But all’s well that ends well, right? Well, no. Not really. The real source of my disquiet is that I know that Collin Brewer is not a solitary figure; he’s just a public one. He had the nerve to say what he thought to the papers. Others say similar things to their friends or families in pubs or living rooms. Their comments are no less insidious for their privacy. Quite the reverse. I know people who hold such views are in the minority. I know they are wrong. It doesn’t stop their views hurting, though.

You see as Boo gets older his disabilities (epilepsy and as yet formally undiagnosed, but likely, cerebral palsy) are becoming more apparent. He may have been born 11 weeks early but he doesn’t look it. He looks like a one-year-old in size and stature. But you don’t have to look too much harder to see he can’t carry himself like one. His trunk is floppy, his head control weakens when tired. Most noticeably (apart from his very noticeable, and very cute, glasses) he can’t sit, roll, crawl or stand. People notice this in parks or public places. We are there to have fun. Instead he and we are judged. We go to cafes or restaurants and we get offered a high chair for him, we politely decline (he can’t sit in them) and then the cogs start turning. People often don’t know what to say or think. Some show or even verbally express pity. Others look at us as neglectful parents. How come we haven’t taught or child to sit? Bad parents! Others, I fear, judge Boo rather than us. In a few seconds of looking at him it’s as if they have mapped out his life. And I don’t think they see Paralympics. They see special school, a life on benefits, a drain on resources…

I’m pleased Brewer is gone, but I don’t feel I can pop a champagne cork until everyone who thinks like him learns to think differently, to open their eyes to the amazing achievements and life-enriching contributions disabled people make to their families and their communities. This skirmish is over but the battle is ongoing. And eventually, not now but some day, we will win. With words and love.  Now, I’ll drink to that.

Cheers!

 

Rare sighting of the Boo Bear

A Post about Toast

toast

This isn’t a post about Nigel Slater, although for the record, I am a huge fan of his, and would happily have him round to dinner any time. I’d even cook for him. I’d just like to have a natter with him really. He writes so well about food. And he knows that food is about so much more than calories and ingredients and processes. Food is the stuff of life and memories of meals carry intense, visceral feelings and memories. And on top of all that he just seems like such a nice bloke. But I’m getting carried away. This isn’t about Nigel Slater, as I said. No. This post is about piece about lightly cooked bread and butter and another nice bloke in the making: my Boo.

Boo loves food. He has the most extraordinary appetite and there is no way that you would know he was a premature baby. He is huge as my back will tell you after a day of carrying all 10 and a bit non-trunk supported kilos of him. He will eat anything put in front of him and hoovers up veggies, noodles, pasta and pretty much anything like his life depends on it. But nothing excited him so much as plain old bread and butter. If he sees it anywhere near him when he is eating he won’t eat anything else. If he seems reluctant to eat something new, I put it on bread and butter soldiers and he laps it up. There’s only one thing he likes more than bread and that’s toasted bread.

But bread is also a great source of frustration to Boo. You see, he can’t engage in his favourite activity (eating) himself. He loves finger food, but can’t take it to his mouth as his arms are prone to stiffness as he raises them when in a sitting position. His hand function while seated improves all the time, but he has a very long way to go. It will never be like yours or mine. And it makes me incredibly sad that Boo can’t be independent in this most fundamental of human ways.

He is not easily deterred, though, and has developed his own strategies for getting what he wants. Mr Boo has worked out that while spoons and other finger food are beyond his reach he can grab my hands as I feed him and will hold onto my fingers and pull them (and whatever they’re holding) to his mouth. Or, if you leave food on the tray of his Cushi Tush (just about the only feeding seat he is vaguely upright in) he takes his head to the tray to attempt to get nearer to what he wants.

But then last week, another little miracle occurred. It’s not a regular occurrence yet, but we all know about small steps on this linky, right?

I’d been feeding Boo a boiled egg and toast while his sister was merrily scoffing down her own when she spilled her squash all over the dining room floor. I got up to get stuff to clear up the mess and as I was walking back I saw Boo (piece of toast in hand) get it to his mouth.

I couldn’t believe it. Neither could he. He could not stop laughing in sheer joy that he had finally fed himself and neither could I. It gave me another tantalising little glimpse of a future I want for Boo; a future where he can be independent and take what he wants literally and metaphorically by the hand.

You’re right, Mr Slater. Food is never just about food. And toast will never be the same to me again.

Ethans Escapades

Liebster Award; or, Getting to Know Me

OK, so this is not the kind of blog post you expect from me. I blog anonymously, and although I share a good deal about myself on the blog (maybe too much?), I do so within fairly narrow parameters. So I thought twice when Mummy Zen nominated me, along with 4 other bloggers, for a Liebster Blog Award. These are awards for bloggers with fewer than 200 followers and those nominated should:
1. answer the questions set for us and link back to Mummy Zen’s blog
2. share 11 random facts about themselves
3. nominate 5-11 other blogs
4. create 11 questions for them to answer
5. tell them they’ve been nominated.
Now, despite being flattered, I wouldn’t write such a post if just anyone asked me to do so. But Mummy Zen? Well, she’s rather lovely and, as any reader of my blogroll will know, she’s one of my favourite bloggers and Twitter buddies.
So here goes. A bit more of me than I thought I’d normally share…
Why did you start blogging?
I started blogging the week after my son, born 11 weeks prematurely in April of last year, turned 1. It was a very emotional time for all of us and it coincided both with the end of a short bout of cognitive behavioral therapy and with the weeks running up to my return to work. You got it. This is partly blogging as therapy.
What are one or two of your favourite blogs to read?
This is tough. And I thought you were nice, Mummy Zen… I guess two of my favourites about prematurity (and life in general) are Not Even a Bag of Sugar and Ain’t No Rollercoaster. Not Even a Bag of Sugar was the first blog on any subject I ever read in my hospital bed on the night Boo was born. I have not stopped reading it since. Ain’t No Rollercoaster is by the wonderful Tatum, who I swear I must have been separated from at birth. She takes things I would say and says them, well…, better!
Who or what inspires you, in life generally?
This will sound corny, but it’s true. My kids. Boo’s determination to do things against the odds and his sister’s love and belief in him get me out of bed every day.
What’s your life philosophy?
Treat others as you would wish to be treated.
What’s your favourite book/movie/song?
Let’s hope no one I know in real life reads this as it’s transparently me, but the answers are: Jane Austen’s Persuasion; Billy Wilder’s The Apartment (I love Jack Lemmon); and Cole Porter’s ‘Night and Day’.
How do you like to spend any time you might get to yourself?
Having some quiet time to read a book. Although I can’t remember when I last did that. I really can’t. Must remedy that asap!
What’s your favourite way to spend quality time together as a family?
I love big days out visiting new places and trying out new things together, but I also love quiet days at home when we’re not distracted by mundane things and can just enjoy being in each others’ company.
What’s your favourite cuisine?
I’m vegetarian, but love most cuisines because I LOVE food. If you put a gun to my head, I’d probably say Italian. No Thai. No Moroccan…
What were you doing pre-children?
Thinking I was terribly busy and not realising how much time I had on my hands.
What do you find most challenging about being a parent?
Trying to be a good role model for my kids.
If money and time were no issue, where would you go on your next holiday?
New Zealand.
11 random facts about me
1. I once met David Tennant at a party. We had a long chat, drank wine and he was wearing a kilt.
2. I only learned to swim as an adult.
3. I like sewing, but don’t like to admit it.
4. I can quote the entire script of the Wizard of Oz (and several other films, especially musicals) verbatim
5. A very fat man once broke my big toe by standing on my foot for about a minute (I was in too much much pain to be able to tell him). I was in France at the time.
6. I have been a vegetarian for 25 years.
7. I have been with my partner for more than half of my life and am not yet forty.
8.  The last time I moved house, I moved 300 yards.
9. I have 3 degrees and have belonged to 4 different universities.
10. I will happily drink tap water but would prefer it if it came out fizzy.
11. I ran my first half marathon in March of this year.
Here are the bloggers I would like to nominate for a Liebster Blog Award
And here are the questions I’d like to ask them:
1. What brought you to blogging in the first place?
2. What keeps you blogging?
3. What makes you laugh?
4. Facebook or Twitter?
5. What famous person would you most like to go to dinner with?
6. If you could go back in time to any period when would it be?
7. If I could plug you in Matrix-style and teach you a new skill at the touch of a button, what would you like to learn to do?
8. What’s your favourite season?
9. Has having children changed you and, if so, how?
10. What gets you through the difficult times?
11. What do you like most about yourself?

Good News Friday #12

I’m having blogging anxiety. I haven’t posted anything since last Thursday because I was away with work for three days and then had a birthday-that-wasn’t-my-birthday day of celebrating yesterday. Oh, and I’m very grateful to Mr Murray for putting on such a good show in my honour. Thank you, Sir!

 
But it’s meant no blogging and that’s made me feel very odd. A bit disconnected. A bit more independent, on the one hand, and a bit more isolated, on the other. I figure this anxiety makes me a true blogger or neurotic. Whatever: it’s a good job this isn’t handwritten as you might see the shakes in my letters…
 
But all of this is actually good news . If you read the post I wrote last week you’ll have seen how nervous I was about leaving the kids and of having to explain to so many colleagues and friends what has happened to Mr Boo since his birth last year.
 
But you know what? I pulled it off. I actually pulled it off. It was hard, but it got easier. The more people I told, the more easily the words tripped off my tongue. People were sorry but I didn’t feel pitied. I was treated to a wonderful surprise party in a pub thrown by some of my good UK and US friends on my birthday. I had used up a year’s supply of hugs by 09.45 on the first day. I felt loved and I feel incredibly lucky.
 
I won’t lie. It’s bloody hard not having family live near by. It’s especially hard that my sister and my other best friend live so many hours drive away. And I know there are lots of lovely folks who would freely offer more hands on support if they lived nearer us. But they don’t and can’t. The logistics of our everyday life are overwhelming at times. But I realise I have something as important as practical support. I have many lovely and amazing friends, who care deeply about us, even though I don’t get to see many of them often.
 
They and the lovely people who read this blog, chat with me on Twitter or email me show me that I am not alone at all. And the past few days have shown me how much both of these communities (my work colleagues and friends and you lovely bloggers and blog readers) mean to me and how much I rely upon them emotionally, if not practically.
 
At 37 I feel more rooted, more sure of my priorities, and more connected to others than I have ever done before. 
 
Roll on 38, I say!