Twiglet no more

On By huntersmumIn family10 Comments

To my oldest little boy,

You’re growing up.

From your too-short trousers to the five slab-like new teeth in your mouth, from your enthusiastic love of The Kinks to your adult way with words sometimes, I can’t help but notice it. Often lately I look at you and see the teenager you will become. It will be a while yet, but you’re more than half way now.

It is bittersweet sometimes thinking of your future, wondering how far along that path your brother will follow you – mentally or physically. But whatever you do, I’m pretty sure you’ll be a heart-breaker. I can’t quite believe I gave birth to such a handsome boy (yes, I know I’m not allowed to say that, but it’s true).

Your emotions can still be a little…um…shall we say, volatile at times (can’t blame you for that one really; mine are too!) but you are getting so much better at weathering the storm. You stomp upstairs as if the world is ending but a minute later you’re back down like nothing happened.

While we had to move Pudding to his own room to keep him safe, I’m also glad we did it for your sake. I love that you now have your own space to retreat to in times of need. You can shut the door to keep your brother from destroying your precious things and spend hours in there listening to music and acting out elaborate scenes with Lego.

I’m sorry I get frustrated sometimes and snap at you. I do try to stay patient, and I hope that soon you’ll understand that the things I say over and over again (like ‘Don’t bother your brother right now, or he’ll hit you’) are usually for your own benefit.

For now, I guess the most important thing is that however upset you get with me, you always seem to have more empathy with Pudding. Even though you hate getting hit by him, you show your love for him every day in so many ways. You look out for him at school and tell your friends about him proudly. You encourage him to join in games with you and build him towers to knock over. You spring to his defence if I ever joke that I’ll put him in the dustbin. Even a grumpy old Mummy like me can’t stay angry with you for long when I see you run to him for cuddles.

It is not always easy having a sibling who is a bit different and yes, it does mean that sometimes you miss out on things we would be able to do otherwise. But along the way you’ll learn a lot too. You already have – after all, there aren’t many six year olds who can read the word ‘mucopolysaccharidosis’.

Boy running away from camera on a sunny spring day

When I first started this blog, I wanted to keep a bit of privacy for our family and not use our real names. I decided to refer to you as Twiglet and Pudding – both names that I used when I was pregnant. Pudding is still just one of the many nicknames that I use for my littlest boy, and one which I am pretty sure he won’t grow out of in a hurry. Twiglet though…? Well, now you’re nearly seven it just doesn’t seem to fit our closer-to-growing-up boy. So, it will be T from now on.

Bye bye, Twiglet. It’s been nice knowing you. As you run into your future, I look forward to getting better acquainted with your alter-ego. I think he’s going to be amazing!

Yours for ever and ever,

Mummy

PS. Getting to your chest of drawers is a bit of a Lego minefield. Do you think the minifigures could retreat to a more strategic location every so often?

 

Mummy Times Two

Happy New Year

On By huntersmumIn family2 Comments

Christmas is over for another year.

With a change to normal routine, festive food and many opportunities for sensory overload, I know many families with disabled or additional needs children can find the period a struggle. But for me, unlike other holidays, Christmas means lots of other adults around to help take on ‘Pudding duty’.

Just before Christmas we had a lovely holiday with my extended family in Center Parcs. We didn’t book any particular activities for Pudding – the only one he would have liked would have been football. The sessions for his age-group were a bit beyond him, and if we’d booked him on the younger session his hard accurate kicks could knock the tiny two year olds down like skittles.

He had not been in a swimming pool for 18 months and it wasn’t a huge success then, so I was a bit unsure what he’d be like this time. He loved it! Straight into the water and happily throwing his ball to anyone nearby. And the other thing he loved was our family photo session where we played to the camera beautifully.

img_6993Christmas itself was much quieter. Was he excited about presents? Well, not so much. Breakfast was far more important in his book. But he definitely enjoyed playing with new toys once they were open. And he gave the rest of us a great Christmas present too – an afternoon nap, which is happening less and less these days. This meant we all had time to play Twiglet’s new board game, impossible when a little whirlwind is around to grab pieces and knock the board over.

So now is traditionally time to look onwards to the next year and wonder what it will bring. Politics aside, I find I can welcome 2017 in with a bright heart.

Yes, it will bring down days and medical stuff, including another general anesthetic in less than two weeks. But it will also bring more progress (we hope) in Pudding’s skills, more new friends, more laughter, more love and light.

Here’s wishing you all oodles of the good stuff in 2017 and the strength to deal with any of the bad stuff that comes your way.

Festive fun

On By huntersmumIn family1 Comment

As I said last year, I’ve always loved Christmas. I know it’s not for everyone. And there are some people out there who prefer the wild partying and heady celebrations of New Year. But for me, Christmas is family and warmth and lights on the tree and food and… Oh, loads of other things that make this time of year special.

This year seems just a little bit more exciting to me and the reason is, of course, partly due to my Pudding.

In the run-up to the festive season I’ve had a number of people ask the usual question. ‘Is he looking forward to Christmas?’ The answer is still that he hasn’t any idea what is happening tomorrow, let alone a week or month ahead.

He can’t write his own Christmas cards, or sing any carols, or tell us what he wants from Santa.  He won’t ask ‘Is it nearly Christmas yet?’ or get excited about putting his stocking out on Christmas Eve. But this year there are a few little differences.

Since he was a toddler we’ve always put the Christmas tree up in our bedroom, out of reach on a chest of drawers. Sparkly things can be enticing for impulsive fingers. But this year he does seem a bit more sensible so it’s downstairs. On the first day he did hit one of the baubles repeatedly but has pretty much left it alone since. There is still the possibility that his giant Olaf toy could be used as a baseball bat on it, but hey, sometimes it’s good to live dangerously.

img_6850The big man in red is still a bit of a mystery to him but given his sociability, Pudding is always happy to meet anyone. Last weekend we took a train trip to see Santa. Pudding was the first child to to receive his present and was really chuffed with it. He held it, showed it to everyone on the train, put it in the bag, took it out again, showed it to everyone again… He didn’t seem to have much interest in opening it, but I think we can safely say that this year he’ll like receiving presents!

He may not be terribly keen on our lovely vegetarian Christmas dinner (he would definitely prefer the meat option), but I look forward to his enthusiastic signing of ‘cake’ repeated over and over again. And I know he’ll be happy with the relaxation of rules about no chocolate at breakfast time.

Of course the biggest change has been on the medical front. Last year, Pudding had just had a bad reaction to his second home infusion and we were facing the prospect of going back into hospital for the next one. We were also waiting to hear whether he would get onto the clinical trial to stop progression of the condition in his brain. One year on, and he’s had no reactions to ERT since. He also seems to be doing well on the trial as far as we can tell, and we do have hope for the future.

I’m writing this early in the morning as I wait for everyone to wake up for a fun-packed day with our extended family. Pudding will run around with a ball and cause chaos, revelling in all the attention of grandparents, aunts, uncles and cousins. Despite some emotional posts lately, life is good.

I’m unlikely to receive the best Christmas present ever – a cure for Hunter Syndrome – but in the meantime, a cheeky grin and vigorous cuddles will do me. Christmas Pudding, anyone?

Nativity

On By huntersmumIn school7 Comments

Ah, the school nativity play.

That time where parents struggle politely for the best vantage point to watch their sweet child parade onto the stage with all the others. The tinsel, and cobbled together costumes. The angel so busy looking out for her parents that she carries on walking and nearly trips over a shepherd. The child who says their words so quietly that no-one can hear. Another who shouts down the microphone making everyone jump. Teachers scurrying around organising everything yet trying to stay unobtrusive as this is the chance for the children to shine. It’s guaranteed to set off the happy tears in all but the grumpiest of Scrooges.

I so wanted this to be a positive post. I was looking forward to the nativity and watching Pudding join in with his peers in his own fashion. I pictured him smiling and waving, going in the wrong direction and making us laugh.

img_6929He had been cast as one of the stars and we’d agreed beforehand that his special chair would be brought in to the hall. This meant that he could be strapped in safely when waiting rather than having the danger of falling off the stage. I knew this would make it very obvious how different he is from the others but decided it was for the best. His difference was highlighted even more when he wouldn’t allow his star costume anywhere near him, so was the only one in school uniform.

It was clear from the off that he wasn’t happy. Bribery with food worked for a while as it usually does. He did enjoy ringing bells at the end, and joined in the dancing very briefly. But as I watched him pulling another star’s costume and hitting the TA behind him, I was crying and it wasn’t the happy tears. I don’t like being hit by him myself and I love him. While I sat up there in the audience powerless to do anything about it I felt worse and worse. How long would others put up with that treatment before they say ‘enough is enough’ and ask politely whether this is the right place for him?

Having a child with additional needs is full of ups and downs of course. And those moments when it is hit home to you quite how different they are from other children their age are definitely responsible for many of the down times.

Thank heavens for others who understand. Later I bumped into someone else who has a child on the school’s SEN register. I told her that I had cried at the nativity and not in a good way, and she instantly knew what I meant. Though our children’s diagnoses are not the same, we share many aspects of experiencing difference in a ‘normal’ world. It was definitely a silver lining in that cloudy day and helped me put things back in perspective.

Pudding’s TA told me the next week that it hadn’t worked out as well for him as the team had planned and how bad they had all felt. But I didn’t blame them at all. They’ve done a fantastic job at making him included – including using Makaton during the performance to wish everyone a Happy Christmas. If anyone I blame myself. He had been off school the previous two days because of a cold, but I thought he was ok that morning. Now of course I have to ask myself whether I really thought that, or whether it was just because I wanted him to be. If he’d been feeling more himself he’d probably have revelled at the chance to perform and show off to an audience, but as it was he just didn’t want to be there.

When Pudding first started school I insisted that I wasn’t sacrificing him on the altar of inclusivity. If mainstream wasn’t right for him then we’d look at other options. What I need to remember is that this applies to the little things too. Inclusion isn’t always the right thing. Not if it makes him unhappy. I have my own hopes and dreams for him, but ultimately I want him to be happy. And if he is, then I will be too.

 

Sleep like a baby?

On By huntersmumIn Uncategorized2 Comments

Having written about emotions last time, I’ve come to realise something (probably fairly obvious) this week. I am so much better at coping with everything when I am well rested.

I’ve had a few late nights recently, and I find it leaves me in such a fragile state of mind. When I’ve slept enough, I can keep things in perspective, write a reasoned blog post and get on with life. When I haven’t, I spend the day with a cloud of impending doom hovering over me and dissolve into tears at the slightest thing. And that can be hard to explain to outsiders. If they notice that I’m not being myself and ask what’s up, I have a choice. I can burst into tears and blurt out and say it’s nothing specific, ‘just everything’. Or I can blame the redness of my eyes on contact lenses that I’ve just put in, and to be honest that’s probably the easiest.

Recently I heard someone mention sleep deprivation after a few late nights. I didn’t comment!

I used to be a ten-hour-a-night girl. I lived in Sister’s house until Niece was a year old, but I would put ear plugs in and sleep undisturbed. When I got together with Hubby he could get up in the morning for his walk to work and I would roll over and sleep longer. If I had a late night, I’d be tired but knew I’d catch up with sleep the next night. I never questioned that luxury.

IMG_7007Then I had my own children. Everyone knows the theory – babies wake up all the time, but you get used to it, and eventually, sooner or later, they sleep through. And the sleep deprivation eases. I bought into that illusion. And yes, it did work with Twiglet. When he moved to a big boy’s bed (aged two and a half) we did have a few broken nights, but on the whole he sleeps like a log.

Pudding on the other hand…

Part of the problem I know is that since becoming a mother I think I simply don’t sleep as well as I used to. There is a small area of the brain that just stays on alert the whole time, listening out for the slightest sound, the slightest hint that your child needs you. And boy, does it get a work-out with Pudding!

Since he was a very young baby, he just hasn’t slept as well as ‘normal’ children. (Something I now know is common in MPS as well as other conditions such as autism) Every night he will wake up, perhaps at 9pm, perhaps at 2am, and have what I can only describe as a party in his cot. He’ll laugh and kick the bars and shout ‘You!’ at the top of his voice. He always sounds happy and goodness knows how he can have so much fun in the dark by himself, but I’m grateful for that at least.

Melatonin has helped. His wake-ups don’t last quite as long now – often more like half an hour rather than two hours. But in different surroundings, such as the hotel room in Manchester or the hospital ward, it can be difficult to persuade him back to bed once he’s awake and decides it’s time to play.

At home he has always been contained in his cot but this can’t continue for ever. With his size and slightly increased flexibility (a benefit from his weekly treatments) there is now the very real possibility that he could climb/fall out. So we need to move him to a bed. We’re currently in the process of clearing out the office so he can have his own room, as Twiglet probably wouldn’t be appreciate being jumped on in the night.

I’ve no idea what is going to happen. Will he stay in bed? Will he spend all night banging on the door to get out?

Wish us luck! And expect some more emotional sleep-fuddled posts from me in the near future….

The ‘new normal’

On By huntersmumIn Uncategorized1 Comment

Last week I was having a conversation with someone about emotions. Of course when Pudding was diagnosed with Hunter Syndrome I went through all of them – anger, guilt, desperation. I was drowning in the strongest emotions that I’d ever felt. When you first hear that your child has a condition that may kill him, your world comes to an end.

But now? When asked how I felt now, I was at a loss. My first reaction was ‘I’m fine.’ I’ve mentioned before the ‘new normal’. It is a phrase used to describe what happens to us after diagnosis. For a while everything is rocked, and then gradually we get used to our new life – it becomes normal.

Yes, on the surface of it I am fine. Life continues with its little triumphs and annoyances. I plan meals, pretend to be a superhero on the school run, tut at clothes left on the floor. Yet that isn’t really the full answer.

mum picHunter Syndrome bubbles along under everything. Even when I think it is all is going along swimmingly, the bumps are only hidden just under the surface. It doesn’t take much to make me wobble. Sometimes just a kind act lets the tears flow. And I know that I may have to get used to a new normal many times.

There are so many worries that beat around my head. Whether I give enough time and attention to Twiglet. Whether the clinical trial will have provable benefits and whether it will be made available as a treatment on the NHS. Whether the next general anesthetic will go well. Whether gene therapy will come in good time. Whether, if Pudding reaches adulthood, there will be the support in place that he is bound to need.

And yet… and yet because of the friendships I have made and the blogs I read I know what other parents have to deal with on a daily basis. We are luckier than many.

So it is sometimes a surprise to me when mums in the playground show amazement at our new normal. A normal that now includes regular prescriptions, weekly treatments, and trips to Manchester children’s hospital every month. And these are things that I am so grateful for, though none of it is ideal.

If I stopped to think about it too much myself, I’d probably be amazed too. And overwhelmed. And when there is shopping to be done, and washing, and a family to care for, overwhelmed would not be a good thing. I just couldn’t live with such heightened emotions for month after month after month. So for now I continue on this new road and try to look out for the bumps on the way. I’m still not entirely in control but hopefully I can steer around the worst of them.

How do I feel? It’s ….complicated.

Time sponges

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I always expected that when my children were old enough to go to school, I would start work again. I used to be a therapist, but stopped when Twiglet was six months old. I became a stay-at-home mum and also did childminding for Niece and Nephew. I suppose this has left me with some self-image issues but maybe that’s a whole other post!

Whatever this has meant to me, it’s probably been very useful to us as a family since Pudding’s diagnosis. I can’t think there are many employers who would be understanding about the huge number of absences I would have taken over the last year or so. Even now, I would need to find a Monday-Thursday job where they don’t mind me going to Manchester every four weeks. Oh, and only during school hours in termtime. That’s unless I put the kids into more out of school provision, and I really don’t feel that would be the right decision for Pudding at the moment.

So for now, I’m continuing to do some volunteering on a Monday and stay at home with Pudding on a Friday for his enzyme replacement therapy (ERT). I blithely thought that would leave me three whole school days to finish my novel and get loads of other stuff done.

There are many SEND parents (those who have children with special educational needs and disabilities) out there who have no choice but to work outside the home, and hats off to them.  I’m going to risk saying something I warned against in a previous post – I don’t know how they do it!

I don’t mean this in a ‘Oh my, they’re such amazing human beings’ kind of way. That goes without saying. All mums are – working or non-working, SEND or not. I mean it in a ‘how do they cope with all the time sponges?’ kind of way.

img_6720You know what I mean by time sponges? Those little things that should be simple but seem to take up a ridiculous amount of time. The sort of things like going to put some air in your tyres and then realising that actually there’s a great big nail in one which means you spend the next hour and a half getting it fixed.

We all deal with little frustrations like this (though I admit to a certain amount of huffing last week when the tyre fiasco happened). But when your child is a little bit…different, it seems like the time sponges just multiply.

Time sponges like a simple form that needs to be filled in that has two lines for ‘any health concerns’.

Like all the email arrangements that need to be made for our monthly trips to Manchester – travel, accommodation, who’s picking Twiglet up from school.

Like waiting on hold for an hour to request a lost Disability Living Allowance form.

Like trying to sort out electronic delivery of Pudding’s prescriptions to the pharmacy. An ‘easy service to sign up to’ that required three trips to the GP’s reception when no-one knew how to deal with his complicated medicines on the system.

Sometimes school run rolls around and I can’t believe how little I’ve managed to achieve. The thought of trying to do all this stuff on an evening when the kids are in bed or during a snatched lunch break just defeats me. I reckon the only feasible solution would be to wait for the time machine that Twiglet has promised to invent for me. Until then I’ll just have to get better at multi-tasking. I should probably be doing the cleaning while waiting on hold with someone right now.

PS. I admit it, I don’t always use my time as efficiently as I could. But sometimes a morning of hot chocolate and chat is a sanity saver…

 

Products that I love

On By huntersmumIn Uncategorized6 Comments

This is a post I’ve been meaning to write for ages but never quite got round to. One thing I found when I joined the strange new world of additional needs is that I had no clue what sort of products were available to help us. Not the big equipment sort of things like special needs buggies or high chairs – occupational health and physio have been great with those. But the sort of products that fulfill a need many parents aren’t even aware of. Some of these products were recommended by other parents of disabled children, others I have come across myself. Parents of toddlers may also like them! Sorry about the bad quality photos but still waiting for our camera to be sorted out.

Click on the title for each product to take you through to the company. Mostly these are in the UK, apart from Dr Barman’s which are also available on Amazon, etc. (I’ve not received any freebies or payment for promoting these – purely writing this as I hope that others may benefit too.)

dsc00121Tot seat –  This has been a fairly recent purchase. Pudding doesn’t like staying in one place too long (even during his favourite activity which is eating) but settles down when he is secured in.  He is getting far too big for standard high chairs and meals out had become punctuated by dashes to recapture him. Not ideal, particularly when I was managing him by myself on visits to Manchester. I knew there must be a solution out there somewhere, and found this – a cloth ‘chair’ that fits over every seat that I’ve tried it on and fastens at the back to keep him secure. All the pictures on their website were of it being used by babies or toddlers so I got in touch to ask about whether it would be suitable. The reply came back very quickly explaining that other parents of special needs children had found it useful too. The adjustable straps mean it can fit many different builds, though you do have to be careful not to leave them alone where the child could tip the chair over. I went ahead with the purchase and have not been disappointed. It’s simple to use, very portable and makes eating out so much easier.

dsc00122Dr Barman’s Toothbrush – I used to despair of keeping Pudding’s teeth even vaguely clean. If he wasn’t running away, he was chewing the brush and I knew that 20 seconds of brushing wasn’t going to win me any medals from the dentist. A discussion in one of my Facebook groups led to buying this toothbrush. Three heads that can brush all the teeth surfaces at once? Oo, yes please! (I have found that it tends to get a bit gunked up, but combing the bits out seems to work…). Edit – nowadays there seem to be a lot more similar brushes on the market!

dsc00123Safe sip – this works by magic. Ok, ok, I know, that it’s actually something to do with physics. A clever little silicone top that you can stretch over any cup or tumbler. Put in a straw and hey presto! you have a non-spill cup. I didn’t believe it despite a recommendation but it really does work as long as the straw is fully in. Pudding can drink from a normal cup, but has problems with clumsiness or deliberate spilling so this is excellent to have in your bag for emergencies.

dsc00127Go To Bed covers – the duvet cover in this set zips to the bottom sheet which also has an integral pillow case. That way, nothing can be kicked off or lost in the night. Doesn’t work for everyone – as proved by someone I recommended it to – but it’s been great for Pudding. We will probably have to make the transition from cot to bed sometime soon, and I’m hoping that this will make things easier. (Not cheap, and I did try to save money at first by using his existing duvet but he kept kicking it down within the cover. The one they sell poppers into the cover and stays much more secure.) Available in single and cot bed sizes. Edit – we now use the single bed size and continues to be a hit!

ID band dsc00128– Many of you will have gathered by now that Pudding is a bit of an escape artist. I keep a pretty close eye on him when we’re out and about, but do often worry about the ‘what ifs’ of him running off. Another worry is about a medical emergency happening when he is not with me. His key workers know the important things to be aware of, but what if someone else was handing him over to a paramedic? If his IDDD was mistaken for a normal portacath and they tried to access it for bloods, it could be nothing less than disastrous. Both these problems have been sorted by this wrist band. It has the medicalert symbol signifying important medical information. On the reverse there is space to engrave name, contact details and so on. And it looks cool too! (The company have a few different designs – this one had the most space for his complicated medical details.)

So that’s my current list of favourites – if you’ve got any other suggestions, share them in the comments!

 

Party!

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Last week Pudding had a party to go to. One of those ‘Turning 5, and inviting everyone in the class’ sort of parties. I looked forward to it as a great opportunity to see Pudding in a large group of his peers and watch first hand as he interacted with them. It would also be a chance for me to see how he compares to them.

Thankfully, it wasn’t a party where the kids are expected to sit down and watch a magic show or something. I don’t know if I’d have said yes in that case! There was to be a DJ and bouncy castle and I decided that would be ok. (Though there is always the worry that vigorous bouncing or bumps could damage one or both of his portacaths).

The party ended up pretty much as I expected:

One child didn’t join in most of the games.

One child ran off with the parcel when it was their turn at Pass the Parcel

One child clung to their parent the whole time.

One child sat waiting for the food for ages and then had a tantrum when he was told no more crisps.

One child tried to escape out the door several times.

Can you guess which one of those WASN’T my Pudding?! Yes, the clingy one…he did all the others.

I was that helicopter parent who hovered near her child and sat down for a total of about 10 minutes. It was pretty full on! But at the same time it was kind of brilliant.

It was very apparent how much less understanding and compliant he is than his peers. But after only a few weeks of school, the other children in his class obviously accept him and his ways. Some of the boys were encouraging him to join in with one of their games. Another took it very well when Pudding was very much in her face. I saw him join in the Hokey Cokey for the first time ever and he did actually Pass the Parcel once without help. (We’ll gloss over the running away with it!)

As soon as we arrived he did head straight for the bouncy castle, but thankfully realised that he wasn’t keen when lots of other children were on it. When some of the party games and dancing were on though, he had the chance to bounce by himself. And there were balloons to chase and bubbles to pop so he was a very happy boy.

The birthday girl’s parents even took the time to learn the Makaton sign for ‘Thank you’ when we were leaving.

I did chat a bit with another mum while the kids were eating and I would have loved the chance to get to know some of the other parents too. (Because it’s hard to miss Pudding’s difference I’m sure lots of them know me, so I’m at a disadvantage!) However, I don’t really feel like I missed out. Pudding so obviously enjoyed himself that it was a joy to watch.

I’m afraid that sometimes on this blog I may focus on the negative a little too much – it’s easy to get caught up in that. But every so often I think I may be getting the hang of this ‘living in the moment’ thing. I do have a great little teacher…

Things people say

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It happens to all parents of disabled children. The questions and comments from other people who don’t quite know how to interact with us now. I haven’t really had any negative comments yet but there have been a few times when I’ve been a bit stumped as to how to answer.

I think the hardest one has been someone saying (before I actually told them about MPS) ‘At least it’s not xxx, because that would be really bad.’ In those sort of situations mostly I feel sorry for whoever has said it, as I tell them a little more and they realise that Hunter Syndrome is not something to wish on any child.

Below are three of the most common things I get told and also the answer I should give if I wasn’t feeling shy/uncomfortable/too tired at the time!

I’m probably asking too many questions

To be honest, I really don’t mind. Despite being an introvert, I’ve actually always been quite open about things. The fact that I blog about our life with Hunter Syndrome shows that I don’t mind putting things out there. Mind you, the same won’t be true for everyone with a special needs child. Take your cue from who you’re talking to and as long as you’re coming from a place of genuine interest and caring, I’m sure you’ll be forgiven a lot.

It’s not as bad as what you’re dealing with

Never say this to me. Your problems are your problems, whatever they are, and as a friend I want to be there for you, just as I hope that you would be there for me. OK, if you need a good whinge about how your child is not yet fluent in Russian despite three month’s of private tutoring I might not be the best person to talk to. But that’s not very likely from my friends anyway. So please, let’s leave my issues aside for the moment, and tell me what’s bothering you. To be honest, it will probably do me some good to think about others.

I don’t know how you do it

Um…that’s a simple one to answer. I do it because I have to. Sometimes it is easy. We have our routines for treatment and trips to Manchester. He watches far more TV than I would really like.  Sometimes it is more difficult. When he wakes up and starts shouting just as I want to go to sleep myself I may mutter a few choice words. When we’re out and he disrupts some other children’s game my heart sinks as I know they might not understand. When he runs off in the opposite direction to where we just parked the buggy I have to make a snap decision as to which one to temporarily abandon. (The buggy usually wins that toss-up: whoever steals it is more likely to get some stinky nappies than anything valuable.)

It’s not the life I would have chosen. But it’s our life. He is hard work, yes, but he is also undeniably, unbearably cute. I couldn’t choose not to love him, therefore I do it because I have no other choice. You would too!