Tag Archives: siblings

Small acts, big heart

I’ve written a lot on the blog about what having a child born early or with additional needs (or both in the case of Boo) does to your sense of perspective. To say it changes your view of life is the understatement of the decade.

Choose your metaphor… Having a child with development delay pulls the rug from under your feet. It shakes the foundation of how you think the world works. It shifts the goal posts (forgive me: it is World Cup season…).

With Boo, the tiniest things always get celebrated. The smallest things. Whether it’s the formulation of that elusive ‘g’ sound, or getting him to swallow when I ask him to, these things are like winning the lottery. Every task is so hard won for him. Each goal achieved is completely amazing. And I celebrate many of these goals in life and on the blog, encouraged by Jane’s at Ethan’s Escapade’s lovely linky, Small Steps Amazing Achievements.

Things have come so much easier for Boo’s big sister, Sissyboo, of course. And since Boo’s arrival, I worry I might have sometimes been guilty of overlooking how tough things can be for her. Her many achievements are rarely as hardly won as her little brother’s, but they are just as amazing. I know that even if it it’s not always evident on the blog.

Take this week, for example, when my strip of wind six-year-old had to do a distance attempt in one of her swimming lessons. Sissyboo has been going to swimming classes, with a few breaks, since she was a baby. The intention was never to turn her into Rebecca Adlington (much as Ms Adlington is one very cool lady). No: it was just to make Sissyboo safe in the water, because I wasn’t at her age. (Inheriting my Mum’s phobia of water, I learned to swim at the embarrassing age of 18. Don’t tell anyone I told you, OK?)

Mission accomplished. Sissyboo loves being in the water, but the lessons, that The Grumposaur has taken her to since I was 20 weeks pregnant with Boo, have become a major bone of contention. She doesn’t listen to her teacher, messes about and generally behaves like a six-year-old. Her technique is not great, I’m told (what would I know Mrs Swims-breast-stroke-with-her-specs-on?) because she doesn’t care or listen to her teacher. To be honest, I don’t care much either, as long as she’s safe. But the lessons are expensive and it’s not clear that Sissyboo is getting much out of them any more. So we won’t be renewing her lesson subscription next term. I am going to take her myself for fun swims on a Sunday.

So last Saturday was the last chance that she has to do a distance swim with her swim school. The Grumposaur wasn’t optimistic. Sissyboo wanted to get a badge. But at her last distance swim she swum an astonishing 500 metres. The chances of her beating that to achieve the next badge up (600m) when we couldn’t get her to sit still enough to eat a decent lunch or drink some water at lunch time were slim. So Boo and I went along for moral support (even though Boo sweltered and generally had a rotten time, while carrying him as I walked up and down along the poolside crippled me).

Within minutes of her getting into the pool, even a rubbish swimmer like me could see that Sissyboo was making life hard for herself by being all enthusiastic in the water, unlike some of her dophin-like classmates. She wasn’t going to do it. I could see that.

As she reached the end of a tired 450 metres, I told her how proud Boo and I were of her. I told her how she was a much better swimmer than Mummy she was and that she didn’t need to carry on. She asked how many lengths she needed to do to get a badge. The next badge was set at 600 meters. 6 more, I said. That’s too many, I added. Takes some bre… Before I had the time to tell her to take some breathes, she was halfway back down the pool with The Grumposaur chasing after her. She wouldn’t stop.

We often call Boo the Duracel bunny for his tenacity in therapy and determination to complete any task, whether it’s a filling in a form board or feeding himself. If he the Duracel bunny, then his sister is surely the original.

The next thing I knew, she had swum 600 metres. I asked her to stop. She wouldn’t. At 700 metres (700 metres!!!) I told her that she wouldn’t be allowed to stay up late that night and help me make dinner if she didn’t stop. She would have carried on. I was worried she was pushing too hard. The bribery worked. She reluctantly got out of the pool.

How amazing. A big step. A big achievement. And I am so proud of her.

But you know, I’m also proud of so many other things that Sissyboo has done in the past few days. Lots of things. Small things.

Like the way she spent her pocket money on a Mr Tumble comic for her brother. Like the way she made him a pirate hat and wrote a book about Boo the pirate and his pirate princess sister. Like the way she made him a retrospective sticker chart for not waking Mummy up in the night.

In many ways, these things make me even prouder than her massive achievement in the pool. Because these small acts show what a big heart my little girl has.

Her achievements, like any of the achievements that really matter, can’t so easily be quantified or measured in lengths or rewarded with badges. Her achievement, quite simply, is being her.

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Good News Friday #12

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What a week! Boo’s diagnostic tests came and went and left quite an emotional trail with them at the beginning. But they are done, and at this point, I’m not even worried about the long (probably two month wait for results). The rest of the week has been very unusual and all the better for it. Yes: the good news for this week is that so much of it has been about Sissyboo.

Sissyboo has more to put up with than any 5-year-old should. She adores her brother, but knows things are not well with him. She has to accept the enormous amount of care and attention he needs as a child totally dependent on others 24 hours a day. She doesn’t have her Mummy in the same way any more. Boo’s physio takes priority over most things. It would be silly to pretend we could live our lives in such a way that she wouldn’t be affected by Boo’s disabilities. She will be. My mission is to try to make sure the effects are minimised and as positive as possible. I don’t always get it right. I often get it wrong. But the simplest things make such a difference. A half an hour here ten minutes there and her week is totally altered. As is mine. I miss my little girl.

But this week it has been more about Sissyboo than it has been in a long time. On Wednesday, she took part in her first school sports day. Before the fun began I had flashbacks to her preschool Olympics last summer in which she refused to take part and then walked through a running race, holding her keyworker’s hand while staring with singular determination at the playground tarmac. What a difference a year makes. She ran her heart out in the running race and laughed her way through the team obstacle race. I am so pleased about how she has grown in confidence and how comfortable she is at her school. Later that day our Homestart Volunteer came round to look after Boo and Sissyboo chose an activity to do with me for a couple of hours. She picked modelling (one of the many things she is currently obsessed with).

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We spent 2 hours making a house out of an ice lolly box, complete with beds, wallpaper, stairs, TV and chairs. And we had a ball. Apparently, she’s decided she’s going to be an interior designer when she grows up.

Sports day was followed by the first of two inset days. The working mum in me is screaming (you are kidding me, I am so behind already and can’t lose any more sleep through late working) but other me was just thrilled to have time to spend with the Boos. We went to see a friend and her new baby in Oxford. It was fabulous to see them. She’s a good friend I don’t see enough. This is how good a friend, she took us to the open-air swimming pool opposite her house and looked after Boo so I could go swimming with Sissyboo in the lido. It was just about one of the happiest hours I’ve had in ages; messing about in the water, playing in the splash park with her, trying to perfect the art of swimming holding hands.

We spent so long in there that we left too late, got stuck in awful traffic; ended up peeing in bushes, eating at a fairly grotty services and getting home at 9 o’clock. When I got back The Grumposaur looked at me sympathetically and said, I bet you’ve had a rough day. No, it wasn’t. It was the best.

Over to you now. Here’s hoping you have lots of good news to share.

 

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A Thank You Letter for Volunteers’ Week

This week (1-7 June 2013) is Volunteers’ Week. I couldn’t let this pass without expressing my gratitude for the millions of people who freely give their time, energy and compassion to help others and, in the process, not only contribute billions to the economy but also make millions of individuals’ and families’ lives a whole lot better.

But first, I need to backtrack a little. Last week I participated in a Twitter chat about making time for ourselves as parents. I had blogged about respite last week and, judging by the many comments, tweets and emails I’ve received, this is a pretty hot topic. And whether it’s something we’ve found in our lives, don’t feel we need, or are desperately seeking, it seems to be a subject we all have an opinion on.

I thought I had things to bring to the virtual table when the chat went live. But I am very aware of two things that make such online encounters difficult for me. First I am a new girl on the blogging scene and I am still learning the ropes. But bloggers seriously are the nicest people, so for the most part they help me overcome my insecurities. Until, that is difficulty number two rears its ugly head. My biggest difficulty is fear of difference. I blog in part to connect with others, to find common ground, to feel less isolated. And I do feel much less alone now than I did 8 weeks ago when I started this blog. But then there are those moments when someone says something, meant kindly or innocently, that in my mind, although I’m sure not in theirs, puts up fences between us, between the greener pastures of parenting in general and the wilder terrain of prematurity and special needs childrearing.

This happened during the Twitter chat last weekend when the conversation turned from how we find time for ourselves to making time for our kids. At this point I mentioned my lovely Homestart volunteer who comes over for two or three hours a week, originally to help me get through the especially difficult time when Mr Boo developed infantile spasms, but now to look after Boo to give me a little time each week with Sissyboo to help her with the difficult adjustments she has had to make since her brother was born. Someone responded by saying they wouldn’t be comfortable with such an arrangement. This is completely understandable and, truth be told, I probably would felt the same if someone had told me a few years ago that we would be relying on the generosity of a volunteer in the future.

I left the conversation feeling quite sad: sad that I had been struggling; sad that I wasn’t as self-sufficient as I wanted to be; sad that I needed help; sad, most of all, that my daughter needs help. Sad, if I’m honest, that I didn’t have the luxury of feeling discomfort at the prospect of accepting help.

But after mulling it over for not all that long and chatting about it a bit more with some kind tweeps I got over these feelings and got over myself. I am astonishingly grateful for the help we have and don’t feel ashamed about it at all. And in honour of Volunteers’ Week I thought I’d share just a few of the reasons why I feel this way. I can’t share the name my Homestart volunteer, a wonderfully generous, smart recently retired woman with a long career behind her and more energy than I imagine I will ever have. She doesn’t know that I blog and I blog anonymously anyway. So let’s call her M. This is what I’d like to say to her.

Dear M

I never thought I’d be writing a letter like this. I used to volunteer myself as a teenager for various animal charities. And I always thought that as an adult I would volunteer again. I  am planning to, for Bliss, in the near future. But if I’m honest with you, I never thought I would need a volunteer’s support myself. I’ve always prided myself on my independence and can-do personality. I am lucky enough to have reasonable health and a good job. I come from a loving family (although a widely spread one) and I have some fabulous friends (similarly widely spread). I never expected that I, that my family, would be utterly sideswiped by prematurity and disability, that my beautiful boy would suffer so much in such a short period of time. That the worry and anxiety over his health would see me develop a severe anxiety and depression that would paralyse me and impinge on my abilities to be the mother, partner, colleague and friend I wanted to be. I didn’t realise how fragile my long-won security in life was. How it could break down so fast. How quickly I would morph from the person who always  helped others to the one who needed the help of strangers.

As I fought back tears after weeks of no sleep and watching my son like a hawk in case he fitted again during an appointment with a Health Visitor I was told that I should consider accepting help from an organisation called Homestart which helped families with young children who were struggling in various ways. I was reluctant to consider this. I was worried others might be more deserving of help than us. That we would be taking something we had no right to. I didn’t want to admit I was struggling. But I couldn’t fake it any longer. I was in bits and I was too tired to protest to the suggestion.

A regional co-ordinator came round shortly afterwards and explained what Homestart could do for us: provide a few hours a week where I could nap if I wanted (I never did) or get on top of Mr Boo’s medical admin (a part-time job in itself) or just talk through the challenges we were facing as a family. I still felt awkward, but started to feel excited too. She went away to match us with a volunteer. You.

In the days that passed before you came round for the first time, I thought several times about saying ‘We’re OK now. Thanks, but we don’t need your help.’ But I didn’t. I knew I was lying and my kids needed this as much as I did. That’s how I rationalised it. They would benefit from this too. This wasn’t about me being a bad parent, it was about me being a responsible one.

My nerves about meeting you quickly disappeared. As we chatted that first time we met about our families and our shared professional commitment to education I forgot you were a volunteer and started to think of you as the friend you have become.

Your visits have helped in so many ways. You’ve picked me up on down days, allowed me to take a bit of control over a life complicated by the demands of looking after a little boy who needs 24/7 care. A boy who cannot be left to play independently, who often sleeps dreadfully and who is frequently ill. Most of all, you’ve given me time to spend with my daughter, time when she’s not constantly told ‘after we’ve done Boo’s physio’, ‘after we’ve  gone to the chemist’, ‘after Boo’s had his bottle’. 

You listen to my concerns. You don’t pretend they will go away or diminish their significance. You offer help and advice on local services a d shared ideas for dealing with some of the practical problems we have (like trying to bath a nearly 10kg baby who can’t sit). You don’t judge. You don’t intrude. You just let me be me and offer oodles of encouragement.

I can’t imagine you not coming round any more but can see that day will come. And we will be forever grateful for the help you have given  us: a bit of breathing space, a bit of time to attend to the difficult things that have come to us as a family with Boo’s birth. A bit of time just to be.

We needed and still need help. I am comfortable with saying that now. And I won’t feel ashamed about it any more.  Moreover, I pledge that one day, when things are better, because I know they will be, I promise to help others as we have been helped. Because I am grateful for all that you and others like you make. And because I know what it’s worth, not just to the economy but to families like ours.

Thank you. The words are inadequate, but thank you.

The Boos

Links to other Volunteers’ Week Blogs

If you’ve enjoyed this post and want to find out more about volunteering and the CSV’s Volunteer Champions campaign please see this lovely post by the fabulous Dorky Mum.

If you want to here about Volunteers’ Week from the volunteers’ perspective, please hop over to visit Ruby+Lottie where Kimberley has posted a wonderful piece about what the volunteer gets out of volunteering.

 

Good News Friday #8

I won’t lie: writing Good News Friday has been hard this week. I spent ages earlier trying to work out what I could possibly write. This is ridiculous. There are lots of good things in my life right now, in fact I’ve blogged about some of them already this week. But my mood is pretty low and the wood and trees are utterly indistinguishable. I’m struggling with the pressures of juggling the needs and demands of the kids, Boo’s appointments and my work. I have been working ridiculously late after the kids have gone to bed to catch up (not a popular domestic arrangement) and Boo has been sleeping terribly (3-4 hours a night) for a week. The cumulative effect of over a year of grotty sleep is really showing. But worst than all of this is waiting for the anniversary Mr Boo’s due date.

His actual birthday on April 2 was nice but tough in pretty much equal measure; his home-iversary on May 19 was lovely. But the wait until June 16 is unbearable and I can’t quite explain why yet but I know has something to do with the fact that every passing minute (and there are a lot in 11 weeks) brings home how much he missed out on. Just how premature he was; how vulnerable he was and still is. It’s left tensions running high in Boo Land and it hasn’t been a very happy place to be this week, to be honest. But there is still good news. And I will take time to enjoy it, PTSD be damned!

First of all, it’s half term. My child care arrangements for Sissyboo for the time I needed to work were flexible (coughs: non-existent) so we headed to my parents’ for as few days. I so wish I loved nearer my parents and sister. Those extra pairs of hands and sympathetic nods are priceless and the Boos love them so much. I didn’t have to cook for several days or do our laundry. Even though Boo slept appallingly, it was restful.

Second, today I had some dedicated time with Sissyboo to do whatever she wanted to do. We very rarely get this now and I miss it (I miss her) terribly. She called the shots and opted to spend our couple of hours going to the park and then gardening. Well, I say gardening. In reality this meant Mummy weeding the front garden and Sissyboo making a ‘special snail garden for all the unloved snails so they can live as a big, happy family’ and involved lots of chatting to the snails and confusing the neighbours and odd alcoholic walking to the corner shop two doors down.

But here is the big news. Why didn’t I realise it earlier? Why hadn’t the town council hung out bunting or set off fireworks? I know this will look like I’m shouting, but heck, I am shouting:

WE HAD NO MEDICAL APPOINTMENTS THIS WEEK.

None. Zip. Nada. Not even an emergency one. Now before you get too excited this is not because Mr Boo has made a miraculous recovery of the kind folks I talk to seem to think might happen any day. He’s stuck with brain damage, I’m afraid. Frankly, it’s mostly because the world, his wife, and most of the NHS are on half term holidays, but still. This is the first time in the 54 weeks since Mr Boo got home that we haven’t had a minimum of 2 appointments in a 5-day working week. Our record is 8. It feels odd, but good. And we will be making up for it next week with 4, but still. Here’s hoping there will be more weeks like this to come. Lots of them.

OK over to you. I hope your good news comes more easily to you than it has to me this week. As always, I’d love to hear your good news in the comments book below, on the blog’s Facebook page, or on Twitter (@premmeditations). And I promise to be a bit cheerier next week. Promise!

Have a great weekend!