Monthly Archives: January 2014

Dear Matilda Mae

Dear Matilda Mae

I hope you don’t mind me writing to you. I feel a bit presumptuous doing so, to be honest. You see I never met you. I so wish I had.

But without you or your Mummy knowing it, before that terrible day last February, you had already had a big impact on my life. I found your Mummy’s blog on April 3, 2012, the day after my little boy Boo was born 11 weeks early. I have never been so afraid. And I looked far and wide for comfort. I found a blog by your Mummy’s friend Kylie, which took me to Edspire, where I learned about the amazing resilience and humour of your lovely big sister and brother. I read every post. Each one gave me hope. Each made me smile and laugh. The love imbued into every word your talented Mummy chose made me feel optimistic and strong. I felt less alone.

I hadn’t sought out your Mummy’s blog to find you. In those early days, I’m ashamed to say that news of healthy, term pregnancies made me envious and sad for all we had lost with Boo’s  early arrival and the complications that ensued. But I was captivated nonetheless. You gave me hope of a different kind. A beautiful reminder of a world beyond prematurity that I might have forgotten about totally were it not for you.

You were born a month after Boo and a month and a half before he was supposed to arrive. Watching you grow and develop into a beautiful little girl hitting milestones Boo has still to reach might have been difficult for me as I tried to adjust to our ‘new normal’, but, honestly, there wasn’t a shred of that. Like everyone else, I was just entranced by you. By your smile, your cheeky expressions. By the bonds between you, your Mummy and Daddy and your sister and brother.

And then you were gone. It was unimaginable.

Boo had only just come back from a series of hospitalizations following the onset of dangerous seizures. He had medication-induced insomnia and barely slept 3 hours a day for months. But that night, the night I learned of what had happened to you, Matilda Mae, I was, for once, glad he couldn’t sleep. Glad that I had to cuddle him all night long. Glad I could.

Matilda Mae, you have touched our lives in so many ways. We talk about you a lot. My daughter adores her Matilda Mae dress and is sad she is outgrowing it and that it doesn’t come in bigger sizes. Every time she wears it people comment on it, and she talks about you.

And I want you to know that you have made me more grateful for this new and sometimes difficult life we lead. Not just because I (selfishly) realise how very lucky we are that Boo survived, but because I feel I have learned so much about the importance of life through your example. That I now know how much impact one small but towering personality can have on the world around them.

And then late last year, I unexpectedly got to meet your Mummy. Your beautiful, compassionate and eloquent Mummy. There was precious little of any of those virtues elsewhere in the room we met in that day. And she wasn’t there to talk about you, but about Esther and William. But you were there, Matilda Mae. You always are. And the pain of their birth, of your death, filled the room for a while. Until, that is, your Mummy started to speak. And then the pain (though still there, it will never go of course) was swamped by a tsunami of love and pride that caught everyone up in its force. Your power. The power of the love you, Esther and William and your Mummy inspire.

Thank you Matilda Mae. For all you have taught me.

Love Mrboosmum xx

There are many, beautiful letters to Matilda Mae on Ghostwriter Mummy’s blogYou can read them here.

Letters to Matilda Mae

The Role of Play

Sissyboo has lots of toys. Sometimes I think she has too many. Not because we have overindulged her, necessarily, but because she doesn’t really need them all. Who does?  She seems to need them less than some, though. For all that she loves her dolls and books and board games  she will honestly have more fun if you give her a pad of paper, some kitchen roll insides, a blanket and a wooden spoon. This child of ours makes Robinson Crusoe look like an amateur. She can always make something amazing out of nothing much at all.

Role play has always been important to her. At the age Boo is now (19 months corrected) Sissyboo was talking 19 to the dozen in complete sentences. Well, I say talking, I mean ordering. She was making up games of her own devising and we had to get with the programme and play our allotted parts. She still does this on an almost daily basis. Sometimes the rules are tortuously complicated and often she takes the trouble to remind me, when I get too involved in them, that ‘we’re only playing a game, Mummy. This isn’t real.’ Good to know, of course.

Role play has been a huge part of Sissyboo’s life so far. She has a wonderful imagination and it’s undoubtedly helped her learn as she imagines herself and others into all sorts of situations and environments she may never been in first hand. It’s been a heck of a lot of fun, too.

But with Boo, as in all things, it’s been different. With Sissyboo, the fun came first with the role play; the learning was a happy by-product. With Boo, I feel like I never just play with him. Play has been substituted by therapy (therapeutic play is the watchword I was given when he was just a few weeks old and not even supposed to have been born yet). He can’t access many toys conventionally. He can’t really play independently yet either as he loses grasp of what he has. And when he wants to play (which is most of the time) we have to use this opportunity to development his gross and fine motor skills. He can’t even shake a pom pom without me checking and correcting his grasp, his wrist angle and elbow position. Poor lad.

I guess he knows no different, but sometimes I feel sad about it. I miss the days of unthinking play I had with his big sister even though I have a tonne of fun with Boo every day and I think (and hope) he does too.

I especially miss the role playing games. I didn’t realise quite how much until a few weeks ago, when we were having one of Boo’s weekly Portage sessions.

Portage, for those of you who haven’t heard of it (I hadn’t before having Boo) is a pre-pre-school (that’s not a typo, by the way) educational therapy based on the principle of learning through play that takes part in the home. Sadly, it is not offered all over the country, so we are very lucky that we have access to it.

I haven’t blogged much, if at all, about Portage since we started it in April 2013. The reason? Well, at first, I really couldn’t see the point, to be honest. Our teacher was a lovely lady, but all she did was dangle a different coloured toy in front of Boo each week, try unsuccessfully to get him to do Makaton (no mean feat with his stiff arms) and regale us every week with a catalogue of the catastrophes in her life. The hour long sessions only ever lasted 20 minutes maximum because she was always at least 40 minutes late.

As we approached the summer, I thought about dropping Portage. It wasn’t doing anything accept eating into our precious time together unnecessarily. It was one appointment we could do without. But the guilt of giving something up, of not doing all I could for Boo, meant I gritted my teeth and we stuck with it. But as time passed and nothing got better, and after talking to a few people, I thought I would take the plunge and drop it. I didn’t want to hurt anyone’s feelings or be seen to be a bad parent, but we could do without this. And as I summoned up the courage to say this in our last Portage session before the summer break I was told by our teacher that she was moving on and we would be assigned another teacher from September. I decided to wait and see what would happen.

Our new teacher is, frankly, a phenomenon. She is deeply knowledgable, caring and committed. She has met with Boo’s OT and been into nursery twice. She has played a vital role in formulating his IEP. She has come to physio and SALT sessions and revised his programme and targets in light of what she’s seen and learned. Boo has fun with her. He learns; I do too.

And she has re-introduced role play into our lives.

Every week she brings a bag of toys to help Boo achieve his goals. He is very easy to motivate and we never get through all the toys she brings as he finds it difficult to give up each new discovery. One week, he caught a glimpse of toys meant for the child his teacher was visiting next.

A tea set and doll.

He started making his cute squeaky noise that means ‘ooh, I need that. I need that right now!’ and so his teacher got it out of the bag and pretended to give the dolly a drink. Boo went nuts. He doubled over in laughter and screamed for her to do it again. So she did. Same thing happened. And then she asked Boo if he would like to feed dolly.

The laughter stopped. This was a serious business. Feeding is a hard thing in Boo Land. Self-feeding is very difficult, although he can manage odd bits of finger food by dropping his head to his arm, or eating off a spoon with my hand over his. But as always, he tried to rise to the challenge. With deep concentration on his face, he lifted the spoon as near as he could with his tight arms to dolly’s mouth and we helped with the last bit by putting a guiding finger on his elbow. The giggles came back and then he kept doing it. It was so much fun!

I told Sissyboo when she came home from school. She got out several of her many dolls and her plastic tea set and started playing picnics with her brother. I nearly cried. Yes, this was still therapeutic play (all play is educational in some way or other, especially if you have additional needs). But Sissyboo was playing with her brother for play’s sake. As it should be.

Since then, we have tried to incorporate more role play into the day-to-day. While finishing making their dinner the other night, I got fed up of picking Boo’s bells off the floor for the 50th time he chucked them off the seat of his Bee chair tray and decided to give him a wooden spoon and a mixing bowl, so it looked like he was doing the same sort of thing as Mummy. He screamed the place down in joy, especially when his sister fetched him his Eeyore toy and they pretended to feed him.

I don’t know why he was laughing exactly. Because it was a daft thing to be doing? Because, like his sister, he thinks his Mum sometimes forgets when she’s playing that these things are just games and you can’t really feed a toy Eeyore with imaginary food made of pure air? Because it was just fun? Probably a bit of each of these things.

And me? Well, I laughed too. Imagination is a wonderful thing, and when your body can’t always do what you want it too, it’s pretty great.

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Gotta Run

Almost every email or phone call or conversation I have these days begins with an apology. ‘I’m so sorry not to have done this earlier’. Or: ‘So sorry not to have been in touch for ages, things have been unusually busy lately’. In fact, lately I’ve actually started to ditch the ‘unusually’. Because it isn’t unusual for things to be busy for us. It’s the norm.

It’s not just the regular stuff that fills our days. You know: keeping us all fed and watered; getting Sissyboo to school and to after-school activities; doing her reading and homework; getting Boo to nursery; and getting me to and through work. It’s all the appointments (we’re still averaging 3-4 a week, sometimes more). Then there’s the stuff that needs to be done post appointments, letters to read, reports to sign off on, equipment to source and information to pass on to other people involved in Boo’s care. And then there’s the therapies… Each day we try to include 2 physio sessions, standing frame time (30-60 minutes a day, building up to 2 hours) and speech and language work. There’s not much time for anything else. And because I often work in the evenings and because Boo’s sleep leaves a lot to be desired, I consider lucky if I get to watch one 30 minute comedy on DVD before bed. I rarely switch off.

Of course, there’s a lot of fun to be had in many of our daily activities, and I quite like being busy, but sometimes, it feels like a bit of a treadmill that I can’t get off because it’s moving so fast and I’ll be flung off the end if my legs stop moving and really do myself a mischief.

My solution to all this: add something else to the list.

Running.

Barmy? Me? Never!

Actually, I’ve come to the conclusion that running is one of the sanest things I can do.

I started running in the summer 2012, when Boo was a few months old and a few weeks out of hospital. Somehow, I went from being chronically unfit, overweight, sleep deprived, breastfeeding and stressed out to someone who in March 2013 ran a half marathon in 2 hours 11 minutes. It was a minor miracle I crossed the finish line. The onset of Boo’s epilepsy, his medication induced insomnia and repeated hospitalisations and my development of severe depression and panic attacks screwed up my training as well as my mind, but somehow I did it.

My legs and lungs didn’t carry me to the finish line, though. I know that. It was my head. My determination not to give up and to earn every penny in sponsorship I could to start giving something back to Bliss who had done so much to help us following Boo’s premature birth was what got me through it. And it was a great feeling. You can read about my half marathon experience here.

But then I got a bad leg injury. And then I went back to work, which is good for the ever-strained family money box but terrible for my health, I have discovered. Once again, I am sleep deprived, a bit depressed, overweight etc. etc. Why? Because we have too much to do. Because life if hard sometimes and always hectic. Because I don’t get enough sleep. Because I don’t always eat well.

My solution? To enter another half marathon in my home town.

It’s not until September, but I will need every week between now and then to regain my fitness, especially as the last half I did was on a flat course and I live in a very hilly part of the country. But I need and want to do this.

If you met me you wouldn’t think I’m a runner. I sure as heck don’t look like one. But running has become a strangely important part of my life, post-Boo, not just as a thing I do, but a sort of mindset I inhabit.

I need some me-time badly, but find it hard to grasp. And this is a way of me getting guilt-free me-time, where I am doing something for me that I can feel OK about because it’s also for others (and where I can’t check emails or make lists or do some tidying at the same time). Because my running body is something I can use to give something back. Last year was just a start. I want to raise lots of money for some of the many organisations who have helped us since Boo’s birth. Lots and lots of it. My ultimate goal is to be able to do a full marathon in 2015 or 2016, although even I don’t quite believe I can do that yet.

And as much as I want to show how much I appreciate these organisations, I also want to show through my running how much I appreciate my kids. Life is not easy for either of the Boos, no matter how much I try to make it so. They both struggle, in different ways, with the bombshell that was Boo’s prematurity and the cerebral palsy that resulted. And yet we expect them to carry on, one step in front of the other towards the future. Everyday, I push Boo in physio or other therapies, distracting him when he’s tired or bored so we can eek out a few more minutes of practice that might make all the difference one day. He never gives up. Neither does his sister give up for herself or for her little brother. I have two wonderfully happy and determined children. If I had only an ounce of their guts, I could eat 26 odd miles for breakfast.

I must admit that training hasn’t got off to the best start. Boo was very ill from January 1st and I didn’t start running until the 10th. Since then, I have only managed five 2.5-3 mile (most 3 mile) runs. But it’s a start. And I already feel better for it. For 30 minutes to myself where I can think about what I want to rather than working my way down a to-do list. 30 minutes where I can push myself to reach my goals, rather than trying to push Boo gently towards achieving his potential. 30 minutes where I can show my kids that Mummy tries to be as determined as they are.

30 minutes where, despite the fury of my racing heart and aching limbs, I can actually relax and get off the treadmill.

 

motmonday

Good News Friday #42: The First Straw

Well, we’ve nearly done it. We’ve got through the first week of our new routine with my two long commutes and a different work pattern. It hasn’t been especially easy, at times, not least because nursery called on Wednesday (when I was 65 miles away) to say Boo needed to go home as he had been vomiting. There was nothing wrong with him. His anti-seizure medicine makes him a bit nauseous and if he eats too close to having it (they gave him a second breakfast without telling me they were going to do that), he spits up. They still excluded him for 2 days even though there is nothing wrong with him and dealing with that has been difficult. But we coped and having had a rough start means we know that we can deal with things when they don’t go to plan, which is good news, in a perverse kind of way, I guess.

But I won’t say it’s been great. Bearable mostly. But very good in places, and there have been some very, very good Boo moments that I just have to share and which have made it all so much better.

1) New sounds: We have ‘Wuhs’ and ‘Bs’ here now. And most people seem to be called ‘Bob’ (which makes a change from ‘Dad’). (‘Bob’, by the way, is not as random as it sounds. It’s a version of one of his good friends’ names at nursery). We also have had a lot of in-context ‘yeahs’ this week and Boo even showed them off to his developmental consultant on Wednesday, which proves that sometimes, at least, he is happy to play the part of performing seal.

2) Appointments part I: Our first physio appointment for a month wasn’t great. I had hoped Boo would show his physio (one of his favourite people – and mine, I might add) some new tricks. No deal. He just sobbed uncharacteristically. We had no idea what was wrong with him, except that his OT was there too. He likes his OT, so it wasn’t anything personal, but he is a stickler for routine and context and I think, in his head, she wasn’t supposed to be there and he was confused. And then she pulled bandages around his middle in an attempt to see if they improved his trunk tone. It didn’t make her any more popular with him, that’s for sure, but it did improve his trunk control and with it his arm function in quite startling ways. So we have been referred for orthotics with a view to getting Lycra garments. The funding needs to be approved first and then we go on the waiting list, but this is a very positive step, I think, for Boo.

3) Appointments part 2: Our other appointments this week (Portage and the consultant appointment) went much better. We hadn’t seen the consultant for 9 months (she’s three months behind on 6 month reviews). She is lovely. She has this wonderful knack of accentuating the positive and was full of praise for all the things Boo could do. These are some of the only appointments we have when I walk through the door and feel happier than when I’m standing outside it. And I think it the good vibes rubbed off on Boo. The appointment was at the most rotten time of the day (tea time) and he went in 30 minutes late. He was starving and grouchy. He had been sent home from nursery and (like us) couldn’t really understand why as he was perfectly well. But once he was in the consulting room, he showed off right royally, as if to repay the faith the consultant had put in him in her positive take on reading through his biblical sized file before seeing us. I was so proud.

4) The first straw: And then we went to conductive education, which Boo loves. He had a great time as usual and participated in all the activities enthusiastically, watching his older classmates show off their new sitting and crawling tricks. Boo’s not there with either of those particular skills yet, but he doesn’t like to be outdone. So at his favourite times of the session (snack and lunch time) he decided to show what he’s made of.

He’d worked hard and he was thirsty by the time juice and biscuits came out. For once, I had remembered to take with me the therapy bottle his speech and language therapist had suggested we try him with to encourage lip closure and tongue retraction (although the latter isn’t really a problem for him). I must confess, I don’t use it at every meal and haven’t got one yet for nursery. You see, the bottle has a straw in it, and learning to use a straw is tough if you’re Boo. It’s a non-collapsible straw, which helps, but it’s also not fixed in the bottle, and Boo learned in about 30 seconds that the best game in the world is not using the bottle to drink out of, but to pull the straw up to irritate Mummy.

But we keep trying. A little and often, as is our way. But I was beginning to give up after 3 months of trying. I was using it at fewer meals, keen to get fluids in him and prevent constipation. But I said last week that I would take it to conductive education this week, so I did.

Boo walked over his seat (with a ladder back chair and arm splints and a bit of help, but you know, still, he walked) and sat down. He enthusiastically chose grape juice when offered that or water by his teacher. And then we sat down to drink. I held the bottle and was in the process of asking if we could have cup of juice made up too so he could get enough liquid inside him to hydrate him for the next set of activities when the usual 3 seconds of unenthusiastic straw sucking ceased.

And then I started talking to Boo and one of the other children before absent-mindedly saying ‘Gosh, Boo, you are a thirsty boy today, you’re wolfing that down’. What had I just said? I paused and did a double take. The liquid level had gone down an inch. An inch! And not down his front. He was sucking effectively through a straw. And it wasn’t a fluke. He did it again at lunchtime and tea time. He has learned to use a straw.

And once again, I realise that for all my research and my efforts as an amateur therapist, it’s Boo who does most of the teaching around here. It was as if he were saying don’t give up. Keep plugging away. Things will happen if you just keep trying. Noted, Boo. Noted.

OK, so those are our highlights from this week. I hope your weeks have been filled with good news. Do feel free to let me know what nice things have been happening in your worlds in the comments below. We love to hear from you!

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GoTo it Boo!

Few words, in my experience, offer a more stinging (if metaphorical) slap in the face to parents of children with developmental or physical or cognitive challenges than ‘normal’. Soon after our lives have changed forever, we are encouraged by well-meaning friends and family to embrace the ‘new normal’ that is prematurity or additional needs. We can call it Holland, if that makes us feel better. It doesn’t always. But the ‘new normal’ gets accepted because frankly, what choice do we have?

Then after a while, if you’re anything like me that is, you find you can’t utter the word ‘normal’ any more at all (‘neurotypical’ is my current word of choice). ‘Normal’ sticks in your throat and if you manage to expel the word from your diaphragm you feel this instinctive urge to move your fingers in that ‘air quote’ kind of way, even though instinctively you throw up a little bit in your mouth when anyone else uses air quotes in your company.

Because you realise that the word ‘normal’ is a sham, a lie that attempts to cover up the beautiful complexity and messiness of life. And it’s not a white lie. It’s a big, dark, vicious lie that those who lay claim to being ‘normal’ use as a weapon against those who just happen to have bodies and minds that don’t conform to rules arbitrarily created in the mists of history.

I despise ‘normal’. But all the same, sometimes, all I want is a little piece of it. I’m not saying I want Boo to be anything other than the amazing, funny, beautiful and smart little boy he is. But I would like a bit of normality in our life. The ability to do things others take for granted but that are very difficult for us. Like shopping in a supermarket without crippling my arm by crooking it through a handbasket and trying to steer an impossible heavy buggy with a mind of its own at the same time.

Or going to a coffee shop, cafe or pub, or just to a friend’s house for a cup of tea. You see, Boo can sit for only very short periods independently, but not reliably. And even so, to do this, he needs to sit cross legged or with legs at a 90/90 angle. I haven’t found a single commercial highchair he can sit in. (I have tried lots.) A brave attempt to have a family meal out on New Year’s Eve involved much staring as we tried to wedge Boo in the lovely wooden highchair provided with rolled up and strategically placed picnic blankets. When after 5 minutes, he inevitably slumped and we put him on our laps, indigestion and more than usual back pain ensured. Dining out has become contact sport for us.

The easiest thing for us to do is not to do things like this. To give up on these things. The little things in life. The things that are sometimes not even all that exciting (online grocery shopping will always come close to the top of my list of the world’s single greatest achievements- really, I hate supermarkets) but which become impossibly seductive when you can’t do them any more.

But now, we can.

Last week, after much deliberation and consulting folks on Twitter and the blog’s Facebook page, I ordered Leckey’s Firefly GoTo! seat, which promises a life where normal activities become possible.

The seat is a liner, which is strapped to the back and bottom of dining room chairs, trolley seats or even certain playground swings. The child is secured in it by a five-point harness, which, when tightened, also brings the low sides round the child’s pelvis and fixes it.

I have tried a seat liner/insert before. It was made by a different manufacturer. It cost a fortune, but I would have got the money together to buy one if it worked. But it didn’t. I was sure it would. But Boo’s trunk was too wibbly. It couldn’t support him. Thank goodness I didn’t buy it. Thank goodness a friend had one and kindly let me borrow it before I parted with Boo’s precious DLA money.

I didn’t want to make the same mistake with this seat, but ever since I saw a description of it on Special Needs Jungle and then in Cerebra‘s newsletter (Cerebra receives 7% from all sales) I wanted one for Boo. I wanted it to work for Boo. I wanted it to make things possible that were a pain before. I saw it as our ticket to a piece of normal. To visits to friends’ houses and the High Street. The fabulous videos on the website looked so good. Too good to be true. Surely this couldn’t work. It looks so simple. So slight. Since having Boo, I’ve come to think that every piece of effective equipment needs its own house extension.

But tweeps and Facebookers said that they had heard that this might work and maybe I should try it. And so I contacted our OT to ask if she could get me one to try. She had never heard of it. She says reps don’t visit our hospital routinely. That it would be difficult. I gave up. And then I contacted Leckey (who were incredibly prompt and helpful in their reply to my email) and after expressing my concerns, they told me of their ‘unsuitable goods’ policy. If it didn’t work for Boo, as long as we sent it back in the original condition, we would be refunded. I couldn’t pass up on that.

And this is what happened.

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This is Boo, sat on on of our dining room chairs. His hands are blurred because he can move them. Because the seat gives him enough support in his marshmallow trunk (a trunk so low tone that Lycra garments have been recommended) to use his often very stiff upper limbs.

This isn’t the best photo in the world. I have others. Lots of them, and they are lovely, but this is the only one I could crop so his anonymity could be retained. The lighting isn’t right and the focus and composition leave lots to be desired.

But this, for me, is a photo to treasure. Because it isn’t just a blurry picture taken on an Iphone. It’s a little glimpse of normal.

Watch out High Street. Here we come!

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A New Start without Homestart

Let me tell you a secret. I am not looking forward to this week. Not one little bit.

There are the four medical appointments for Boo, but that’s not it. To be honest, that’s fairly normal for us. No: it’s that this is the week my work pattern changes in quite a big way.

I have been back at work since May. It’s been hard, but also good to have something else to focus on and, honestly, I have no choice but to work if we want to keep our house in our town and keep Sissyboo at the school she’s at. But I have been unfeasibly lucky so far. I went back on a phased return initially and then was on a sabbatical of sorts that meant I focused about 80 per cent of my effort on things that could be done at home, electronically or on Skype. I’ve worked long hours, but flexibly. It’s worked. Mostly (although working through the night to make up for time lost to appointments can be grueling and is temporarily stymied because of the Boos’ sleep problems). But I am still standing anyhow, which is surely one marker of success. Some days I feel it’s the only one we have.

And I have a flexible working contract (thank you, lovely employer) so that I can still work a couple of days a week at home on days when Boo often has appointments. But on Tuesdays and Wednesdays I will now have a 130 mile round trip commute by car. I will work late in an office. I won’t be able to pick Sissyboo up from school. I will spend even less time with her and with Boo. Goodness knows when all her homework will get done or how we will get him all the standing frame time he needs.

And just as this change kicks in, we have to get used to another major adjustment: the absence of Homestart in our lives.

If you have read this blog before, you’ll know I’m a huge Homestart fan. Homestart entered our lives when things were terrible and no one else seemed able to help. I was severely sleep-deprived after 3 months of no more than 3 broken hours of shuteye a night and I was severely depressed. The world felt like it was made of cotton wool. I trudged through it with leaden feet and bleary and tearful eyes every day, but was disengaged from reality. I couldn’t keep on top of the house. I needed quality time with Sissyboo.

Homestart gave me something priceless. Three hours a week of respite, of a friendly and sympathetic ear can work wonders. It did for us. Sissyboo’s mood lifted. Things were still frantic, but the oasis of calm 180 precious minutes a week provided was something I always looked to to get me through the tough times.

We are in a better place now than in the darkest days of infantile spasms and steroids, and others need the service much more than us. So our volunteer visited us for the last time before Christmas. We are grateful for all Homestart has done for us and I will do all I can to help raise awareness of the amazing things they do for vulnerable families with young children on this blog and anywhere else I can.

But I am also very, very sad and somewhat at a loss without them. We are not coping fantastically at the moment. Sissyboo misses her afternoon with Mummy each week. She is very moody (she is just not her really, which is sad to see) and is not sleeping well. Boo’s sleep is, as always, much worse still. The atmosphere at home, especially in the turbulent evenings or desperately-seeking caffeine mornings can be tense. It can all feel a bit relentless.

But work, as one organisation who helps families like ours (but wasn’t in a positioning to help us) said to me, is my respite, surely? It has to be, was my response. And that organisation had a point. I am lucky to work. To be able to work, I mean. I don’t take that for granted and know of many who would welcome my problems in this respect.

But let’s be honest, here. Work is not respite. It’s a sometimes diverting, enjoyable but stressful and multiply demanding distraction. And while I wouldn’t change things (I think…), work takes with one hand (quality time with Sissyboo and what little energy I have left after all the therapies, anxiety and worry) what it gives with the other (a roof over our head). My colleagues are lovely, in the main, but they haven’t got a clue what my life is like.

Work is a lie. It’s a place where I cover up the reality of my life rather than a place where I truly escape it. That’s an important difference, I think. It’s exhausting leading this double life.

But I have to try to ensure that the new changes ahead on the work front don’t eclipse the knowledge I gained from our experience with Homestart. Little things, like the value of drinking a hot cup of coffee without distractions; the importance of taking a breath to catch up with myself; and above all, the importance of making time for our daughter. We don’t need formal respite to tell us these and similar things.

Now all I need to work on is how to make them happen, but for your sake, Sissyboo, I’ll try. I promise.

Good News Friday #41: On a roll

It’s been a soggy, busy and quite relentless week this week. I’ve really struggled to get into the new year routine (why it’s the middle of January, for crying out loud?) and I’m sad about leaving some things behind, particularly the absence of Homestart in our lives (more about that next week) and having to work in a different pattern that means I’m missing Sissyboo a lot. Boo’s sleep has been a bit erratic, which doesn’t make things easier, but it has been so much worse and I am filling in a sleep survey for Cerebra diligently and optimistically so they can offer us some targeted advice via their amazing sleep service.

Amid all the hustle and bustle, it’s often hard to take stock, but there have been a catalogue of small things this week that Boo has done that have made me smile. Each and every one is tiny, but the bigger picture that these inchstones are starting to build up is looking rosier all the time. So, here’s my good news this week, which I’m linking up to Jane over at Ethan’s Escapades, Small Steps Amazing Achievements. Because, frankly, I think they are pretty amazing.

1. White noise. We have started using a white noise machine in Boo’s bedroom in the past couple of weeks. It hasn’t been a miracle cure, but it is certainly helping his sleep a great deal and it’s frankly the best £19.99 I have ever spent. Boo’s preferred white noise of choice is ‘woodlands’ (chirping birds and all that – God, I hope this doesn’t mean he’ll want to go camping one day). It makes him a bit more calm as we try the sometimes seemingly endless process of settling him, but once he’s asleep, it seems to help him block out other sounds and stay asleep for longer stretches.

2. The other white noise. I realised earlier in the week, that I like white noise, too. I usually have the radio on while I work. I listen to Radio 3 (I am only 37, honest) but it helps me block out other audible distractions and get more done. I also realised that the problem with embracing white noise in your life is that sometimes you don’t really hear the things that matter. Like Boo’s speech. I am so used to his incessant babble, the ‘eggs’, ‘ugs’, ‘da-das’ and so on that I hadn’t noticed new sounds until I stopped to listen. Just this week we have ‘en’ and ‘Nan-Nan’ (cue crying from my Mum when I see her later today, I guarantee) and then yesterday ‘wuh-wuh’. I swear I heard ‘woof’ three times this morning, so maybe our 3 weeks of doing animal noises in the mirror while Boo laughed at us is working. There is also a rumour, spread by Sissyboo, The Grumposaur and my sister that ‘Mum’ has been heard. I haven’t heard it myself, but I am desperate to believe it.

3. Steps in the right direction. Boo loves to stand, but can’t do so unaided because of his wibbly trunk. He used to like trying to make little steps too, if you held him tightly enough under his armpits. But this was never easy for him. His leg tone meant his legs scissored a little and lifting his feet off the ground was tough. Then he got Piedro boots which are pretty darn heavy, if completely amazing. They stopped him standing on tip-toe and helped stabilise his ankles and hips. But they also made him lose interest in lifting his feet off the ground completely. That was months ago. And then earlier in the week I was supporting him in standing when his Dad came home from work. And what did he do? He started doing voluntary steps, one by one, left, right, left to get to him. Neither of us could believe it, so we made him do it again. He did. It was obviously tiring for him, so we stopped then, even though I think he would have kept going. We hoped he would do a repeat performance at conductive education this week, but no. Have to remember he’s not a performing seal. All in his own good time, Mrboosmum. All in his own good time.

4. Rolling. OK. You’ll know, if you read this blog regularly that we have been trying to teach Boo to roll from when he was 3 months old (corrected age). He is now 19 months corrected and we have a 3/4 roll. If positioned on his side, he can roll to his front. On his front he can (but doesn’t always want to) roll to his back. But back to side is proving elusive. But then Boo developed an obsession with pulling off his nappy before bath time (he likes pulling off his socks too). I have to bath him and his sister separately now, because his bath seat is so huge no one else could fit in the bath with him in it. To be frank, the bath seat barely fits in the bathroom. So I normally strip him down to his nappy while getting his sister ready, she jumps in and he watches and we blow bubbles until it’s his turn. But the other day, after I’d briefly left the room to check the water temperature, with Boo on the bed, head on a pillow (hang-up from the reflux days), and safe in the knowledge he couldn’t go anywhere, I came back in to see him doing a mini sit-up, trying to reach down to his nappy. And then he grinned, and twisted and used his head to get enough rotation to pull his leg up and over and roll onto his tummy. Much hilarity and clapping ensued from me and Sissyboo, despite this not being the most elegant of moves and he repeated it a few times before collapsing into his trademark fit of giggles.

Now this doesn’t mean he can roll yet. He certainly couldn’t have done this without the advantage of head height or the motivation of pulling his nappy off (this is not a move he’s ready to replicate yet with clothes on) but it’s a start. And when the door is open a crack, we just keep nudging it open bit by bit until one day, we hope, we can fling it wide open.

That’s the Boos’ way. Because to be honest, there is no other.

OK, that’s our good news and Boo’s achievements. I hope you have lots of good news to share too. Do get in touch. We love to hear from you.

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Versatile Blogger Award: 7 Things you Won’t Know about Me

 

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A while ago (OK, quite a while ago), the lovely Mummytries nominated me for a Versatile Blogger award. You can read her post here. The idea is that you offer up 7 random facts about yourself and then pass on the brief to some of your other favourite bloggers.

It’s taken a while to sift through the randomness of my life to pick out a few things you won’t know about me or that eat away at my anonymity, but here they are. Random, huh?

1. I have been in the same profession now for about 11 years, but before that I had a range of jobs, including working in a petrol station, working for a car finance company and working as a bank cashier in a very badly fitting, hot-flush inducing uniform. The glamour of it!

2. I love a good fictional murder, in books, films, or on TV. I have quite a particular soft spot for Agatha Christie, Dorothy L. Sayers and virtually any of the nordic noir writers.

3. I can play several musical instruments quite badly: the violin, organ, different recorders, the flute and guitar.

4. I have been driven round racing tracks and rally courses by world-class drivers and never want to do this again because it is frankly terrifying.

5. I have read the novels of Jane Austen more times than is normal.

6. Since Boo’s birth I have been mistaken for a medical doctor four times and twice for a paediatric neurologist.

7. I once met David Tenant at the BAFTAs, just before he took over as Dr Who. We drank champagne and talked about Cassanova for a while. If I hadn’t actually been there I’d think I was making this up too. The glamour of it!

OK, so now to pass this on. I can nominate up to 13 people, I think, but that seems a bit much, so I’m opting for just 3: Abstract Lucas, Ethan’s Escapades, Beadzoid

 

Sealed with a Kiss!

We had to cancel our first SALT (or speech and language) appointment this year because of Boo being ill. He also missed a joint OT/physio appointment. I minded about missing the joint appointment lots, partly because we have been waiting so many months for it. I missed SALT, well … not so much. You’ll know if you read the blog regularly that I find speech and language sessions depressing. I worry Boo has been written off a bit in the speech stakes, despite being young (still not quite 19 months corrected) and making lots of noise/sounds odd words.

Most of Boo’s appointments begin with the dreaded question: ‘So what’s new with Boo?’ Usually I scramble to find a more optimistic sounding way of saying, ‘Um, not much, but I think he’s doing what he could do before a bit better’. But I actually did have something to report for SALT. A small thing, but a big deal. And something pretty special to me. As I couldn’t tell his therapist, I’ll tell you guys instead. Honestly, I think you might even appreciate it more, too.

Drum roll, please: Boo can blow kisses!

Lip closure is something we’ve been working on for some time. And it’s been an odd one for me. You see, I hadn’t really thought it was a big issue for Boo before he started conductive education back in September. You see Boo can close his mouth. He has never had an issue with feeding/eating (for which we are all enormously grateful) and munches away with his mouth closed. But he does dribble a bit when he drinks out of anything other than a bottle and when he’s excited, which is most of the time, he has a big, wide smiley grin on his face. He couldn’t/wouldn’t close his mouth on demand to copy others. In the warm-up at his conductive education sessions Boo and his pals are asked to do some breathing exercises and make ‘ah’ (big, wide smiley face) and then ‘mmmmm’ (lips closed) faces and sounds. Boo just giggles. It is funny. But was he laughing because he saw how daft everyone looks and sounds or because he couldn’t do anything else, I wondered? Probably, I sadly realised after several sessions where he was asked to pop bubbles with closed lips (of course he just tried to eat them), the latter.

Our speech and language therapist also wanted us to work on lip closure which is so vital for feeding and speech. We were advised to start trying to get him to drink through a special cup with a straw and have started to have some small success with this, in that he’ll take a few slurps before biting the straw and triumphantly pulling it up out of the cup with his teeth. But that’s it. So what can we do but persist, like we always do? I started introducing bubbles at bath time and trying to get him to pop them with closed lips, like at conductive education. The result: plenty of giggles, but no lip closure on demand.

Until very recently, that is.

All of a sudden, Boo has started to blow kisses when we blow them to him. It is frankly the most adorable thing I have ever seen and he is mightily chuffed with himself. And in the last couple of days we get them without demonstrating. If you ask Boo for a kiss without demonstrating what you mean he obliges by blowing one right back at you.

When Sissyboo started doing this, I thought it was cute too, of course. But I had no appreciation of the skills that go into making something apparently so simple happen. Boo has had to learn to copy others, to work against involuntary tone and muscle movement to close and open his mouth when he sees fit. And then he has had to learn that the word for that lip movement is ‘kiss’ and if Mummy, Daddy or Sissyboo ask for one and he makes the right mouth shape we’ll clap and grin like buffoons even more than usual.

And this is just the start, potentially. This might be the route to less messy drinking and to new sounds. Maybe one day I won’t just get a kiss, maybe one day I’ll hear the word ‘Mummy’ or ‘I love you’. I won’t take them for granted. That’s for sure.

I love you too, Boo.

Because I am especially happy about this, I am linking this post up to two of my favourite linkys: Magic Moments and Motivational Monday in part as a thank you to two ladies whose blogs help keep me going when things don’t feel quite so magic or motivational.

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Good News Friday #40

Like most of you, it’s been back to reality for us this week. A return to school, to work, to nursery. Oh, and because we’re the Boos, appointments, illnesses, out of hours doctors and all that jazz. Monday was supposed to be the most depressing day of the year (and to be frank, if you read my post on Monday, you’ll know that ours wasn’t great), but the week has got better and better as it’s gone on and I am quietly optimistic about what lies ahead. 

So here goes. Our good news…

Boo got better! Thanks to The Grumposaur’s Dad arriving with an unexpected gift on Christmas Day (a stinking cold and chest infection), Boo spent from January 1 until Monday pretty sick. His fever came and went for the first few days, but by the early hours of Sunday was up to 40 almost constantly. His breathing was shallow and rapid. I was worried to put it midlly. We had quite a saga trying to see an our of hours doctor, but eventually got antibiotics and he’s doing so much better now.

I’ve written about this before, but when any child gets sick (especially when they can’t communicate what’s wrong with them), it’s awful. Sissyboo’s major illnesses always knocked me for six. But with Boo, or with any premmie, or any child with complex health needs, it can be devastating. You end up trying to fight not just the big that they have, but have to wrestle physiologically and emotionally with the underlying problems that make them so vulnerable to things that would make you and I feel a bit out of sorts for a few days. You confront you fears of the past the present and the future. And it’s blooming exhausting. Thank goodness we made it without hospitalization this time.

We got some sleep. OK, this is a story of two halves, or 5/7ths and 2/7ths to be precise, but still, glass 2/7ths full and all that. Boo’s sleep problems have been awful for months (most of the time since birth, actually). Worse still, they have deteriorated rapidly since November. Settling him is a battle that can take hours only for him to wake 50 minutes later. He has started to bite, pinch and pull our and his hair before sleep too, behaviours we never see at other times. If he naps on us in the day, or on his tummy and a sleep mat at nursery, he sleeps well. I’ve been trying to work out what the problem is. I’ve (almost) set aside the partly irrational fear that his epilepsy is returning and come to the conclusion that there are some sensory issues at play here (about needing sensory feedback to comfort himself) but also that he needs pressure and a good deal of support to fall asleep. Sadly, I can’t let him sleep on his tummy at night. They can do this at nursery because he is constantly watched, of course. He can head turn, and can roll front to back but not reliably enough for me to think that if he got into trouble, he could get out of it.

The effects on us all have been, frankly devastating. The exhaustion is awful. The frayed tempers worse. And this week, it was clear that it was starting to affect Sissyboo, too. And there I draw the line. I wrote to her teacher to explain that she might be tired at school but vowed that I was trying to get help. I am trying. Hard.

So I want to say a big thanks to all those tweeps and especially the many lovely people who commented on or messaged me through the blog’s Facebook page with advice, anecdotes, tips and solidarity. Thanks also to a lovely friend I happened to meet for an all-too-brief coffee for the common sense she imparted. We have introduced some new things. I have set up an elaborate home-made sleep system involved supports under his sheet to bolster that given by his v-pillow. I have bought a white-noise machine, which we clearly need to leave on all night. I have contacted Cerebra, who run a sleep service that has clearly helped so many and I am about to receive some info from them that will allow them to assign us a sleep practitioner. And, of course, I will speak to Boo’s consultant about this when I see her in 10 days. 

But touch wood (and with crossed fingers in case I jinx this) the last two nights have been better. Much better. And the effects all round (on Boo on us) are terrific. This is going to be a long battle for us, I suspect, and like many of the ones we fight, the goalposts will probably change a lot, but I feel positive that we are doing things about it and that doing things is making a difference. 

Exercise. I have entered a half marathon in September. This will be my second in only my second year of running. Well, I say second year… I haven’t run regularly for many months and regular running really stopped last March after I got an injury. I had intended to start building back up to regular running this week, but things have been too hectic with Boo’s illness and a scrambling to catch up at work with time lost to his illness that it hasn’t happened. But I have done some school/nursery drop-offs on foot (a round trip of 1.5 miles) and even doing something so small-scale has helped me to clear my head and make me feel a bit better about life. I have written run in my diary for today and Sunday. It might just happen, fingers crossed…

Conductive Education. Sadly, I had to work this week on the day I normally take Boo to conductive ed, but The Grumposaur took him. I want to write more on the blog next week about what Boo’s being doing in conductive ed lately and how it’s helping him, but for now, I thought you might like to see some of the fruits of his labour in the form of this little snowman masterpiece.

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One of the things I love about conductive education is that it doesn’t base activities around what it thinks children with cerebral palsy can do (knowing that many mainstream activities can extremely challenging for many of them). Instead, it asks how we can enable children to access all the activities that we would expect kids their age to do.

And that’s what I want for Boo. A life where we provide him with strategies (however unconventional) so that nothing he wants to engage in is in off-limits. Surely that’s the kind of life we all should lead…

Anyway, that’s my edited highlights of the week. I’d love to hear your good news in the comments section or on the Facebook page. I love to hear from you!