The Favourite

~ Vickywoo ~ Leave a comment

One morning, as I laid in bed, with both of my children snuggled either side of me… Rex (who is eight), asked “Who is your favourite child?”. Of course I tried to side step and make light of this one by asking “Out of all the children in the world??”, but unfortunately he clarified “No, out of me and Audrey!”. And then they proceeded to push and pull saying “Me! It’s Me!”.

Naturally, I told them they are both my favourites and they were left unsatisfied.

But it sparked some thoughts. Because when Audrey was born, I guess I thought she could never be the favourite. She would always be the disabled child, making her somehow “less”. I do not type this lightly, I like to be raw and honest, and I remember, even after ‘accepting’ she had Down’s Syndrome and loving her, I still had that yearning to have a “normal child”. I don’t think I thought I’d be complete as a mother or that our family would be complete unless I made a “normal” child and raised it. The first time this feeling was banished was when we lost our second pregnancy (at a thankfully very early ten weeks). It was at that moment, where we had a scan and it was confirmed that we were no longer pregnant, that I gazed upon my eighteen month old (what were we thinking?!) beautiful Audrey, and I felt so incredibly grateful for her. I felt blessed and happy and realised that I no longer needed that “normal kid” and that if were unable to produce another child, well that was ok because Audrey was enough.

And let me just say, Audrey was a bit of a dreamy child at that age. She was as cute as can be, chatty, outgoing and as she could only bum shuffle, she didn’t run off anywhere and she was often perfectly content eating blueberries whilst I had a nice coffee somewhere. She napped in the cot at home so I could get stuff done or have a rest, she truly made me feel like I was bossing this whole mum malarkey.

And so, having proved herself to be an absolute angel and make me realise I was being a right dick for wishing for that “normal child”, she was not only my absolute favourite kid in the world, she had completed our family. But of course, she actually hadn’t… because we were lucky enough to get pregnant again and have that pregnancy result in Audrey’s baby brother, Rex. Rex arrived when Audrey was two and half, she was still not walking, still in nappies.

My expectations of the baby sleeping and Audrey and I continuing to live our lives (music groups, coffee dates, chill time), came crashing down around my ears when Rex turned out to be a bit of an unsettled baby who like to sleep on my body and hated the buggy (unless it was moving). So Audrey kept her prime spot as the favourite and Rex remained a blessing, but one that had me thinking regularly “I can’t do this” and “Why did we do this again so soon?”.

It was a very different experience to be the mother of Rex pre-two. He managed to make me feel like I was definitely not bossing the mum thing and I abandoned all ideas of more babies, having previously hoped for four children. But it wasn’t all doom and gloom and the two of them together unlocked a new level of love and magical moments.

At eight and ten, they are both a challenge at times, but sooo much easier than those early days and so much fun. Rex has become such a curious, clever little boy and Audrey surprises me with her knowledge every day.

Ted and I have often joked that Audrey is our favourite, (I think your first born always has a special place in your heart), but the fact is, they are both so flipping fantastic in their own different ways, it is impossible to choose!

Camp Bestival!

~ Vickywoo ~ Leave a comment

We went to our went first (staying overnight) family festival in 2019: Camp Bestival. Not being a camper or even much of a festival goer, it was a big leap for me. Audrey was in the Camp Bestival campaign for 2019, which meant we could attend at a discounted rate and it forced me into trying festival life!

We rented a camper van because camping is just not for me. Then I panicked about driving this huge camper van and roped my lovely friend into joining us and driving us.

I wrote a bit about our experience in 2019 (when Audrey was six and Rex was three), but never published it. So now I can tell you about then and now (summer 2022)…

There are no doubt lots of fun people writing about festivals with kids, but as your sensible unlikely festival goer, this is a tame take things!

2019… well, there were times when I was really stressed. There were times when I was tired and grumpy. But it was also oh so magical and some serious family core memories were locked in. I am known to be “indoorsy” (this is the opposite of the better known “outdoorsy”). I am someone that likes a sofa, films, a nice cup of tea, a hot shower, shade, warm clothes, access to a toilet, dry things. I don’t like; being in outside on a hot day in direct sunlight, bugs, dirt, grass, rain, mud, being wet, queuing for toilets, sitting on the floor, being too hot, being too cold. So yeah, a festival is a challenging environment for me!

Elements that worked well for us:

Food. We took a lot of snacks and food so we wouldn’t spend too much, but the food we did buy there was delicious and the ordering and queuing systems were pretty good.

Children’s areas: The kids were most happy in the circus skills area, with lots to play with and space to run around, they also enjoyed the big top (a small tent) at the back.

The Wild Tribe area – they loved a circle of hay bales surrounding a circle of dry mud.

Any outdoor show – the insect circus and other shows were great because the noise is easier to cope with outside.

The painting area.

Ice cream bribery and shade!

We were lucky in that we arrived on the Friday and it was dry the whole time. I hear the traffic in and out can be horrific, but we had an easy time both ways.

Watching things for the kids rather than us. Mr Tumble was a massive highlight, if the kids are happy, you’re happy. Simple.

Weather! It was dry and sunny.

Toilets- CB has an excellent amount of toilets and I never felt we had to queue (or if we did, not for long).

Elements that didn’t work:

We wanted to rent a trolley but I missed the cut off for booking online and when we tried to book one once there, they had sold out. We would definitely buy or borrow a trolley next time.

Very loud music inside upset Audrey. People dressed as monkeys upset Rex. You never really know what your kid will love or hate until you get there.

Trying to get the kids to bed at a reasonable time was not possible, but didn’t risk any late night raves with two so small. So we all went to bed together around 9 or 10pm.

We also didn’t think to book for any of the Wild Tribe activities (sword making, puppet making) and these sold out.

Planning to specifically see something was tough. We managed to see quite a few acts in a row when Rex fell asleep in the buggy, but once he was running about we had to give up and move on.

The sun. I had underestimated how difficult it might be to enjoy what was going on when we were forced to be in direct, hot sun for long periods of time. My friend had a parasol and I have to say that or our little pop up tent for shade are must haves if you are not major sun worshippers.

2022:

In 2020 and 2021 we managed to have some glamping and camping holidays that really sealed it for me, I am not a camper. So yet again, I was considering our options for Camp Bestival… and I decided on… a holiday home! Yep, we went for a holiday in Dorset for a whole week, arriving Friday, “commuting” in as day trippers to Camp Bestival each day. And I have to say, I know it’s not rock n roll, but I liked it!!

Things that worked:

Again, we arrived Friday, so the traffic was clear.

We listened to the kids and cut our days quite short. Audrey had a rotten cold, so was definitely not 100% and Rex was surprisingly tired and sensible. Our first day because they were whinging, we were back in our rental sat around eating dinner together about 7pm and Rex asked if he could go to bed!

Again, if the kids are happy, we are happy. So our biggest acts were: Cosmic Kids Yoga (absolutely packed, fab atmosphere), Mr Tumble (ditto, plus totes emosh, he’s been doing it over 20 years!!) and Yolanda’s Band Jam (just a great band for grown ups that happens to be CBeebies vibes).

The Greatest Tent on Earth- shade, glorious shade and something the kids love: kids’ talent shows!

Food: again, we packed snacks and more snacks, but we also treated ourselves to some yummy lunches.

Rides: our first trip I’m pretty sure they went on the Helter Skelter and Ferris Wheel, but then stopped there as it’s extra ££ and the queues can be punishing. This time we just thought “stuff it” and if the queues weren’t too bad (mostly earlier in the day, later or on the Sunday), we let them go for it as it made them soooo happy (most rides were about £3 a child).

We borrowed a trolley. Tough work out for Ted, but great for keeping Audrey contained.

I took an umbrella for shade.

Ear defenders. We forgot these on the Sunday (classic error) and the kids did manage without but it sealed it for us that we wouldn’t be staying late for the fireworks.

So there you have it, I guess some might think we did it by halves, but although we often throw Audrey into situations where we are unsure if she’ll enjoy it, we also do play it safe when needed. I knew that a late night music act with crowds and flashing lights would be a big stretch for her (especially when she was a bit poorly), so a nice Vics Vapour Rub and getting tucked up in bed is what she needed. Especially as she was waking twice a night because of her snotty nose. Taking it easy meant we could enjoy our daytimes there more. Lots of beautiful core memories locked in again (amongst the whinging) and that’s what it’s all about (the memories, not the whinging!).

 

 

 

 

Audrey turns nine!

~ Vickywoo ~ Leave a comment

When the birthday comes around, my musings about the past, present and future come too. So here we are. Nine years of Audrey.

My summer baby

I guess I would normally be talking about how far we’ve come since the surprise diagnosis postnatally. Sharing positives, expressing how much we love and appreciate her, but it’s also worth talking about the not-so-super-fantastic things about having a child with needs like Audrey’s.

You see, in the early Instagram and blogging years, I read a few things other T21 mums said about pushing the whole “cute” angle with Down syndrome which can be damaging, and belittle the experiences of those facing the reality of a more grown up child with DS. “It’s no so cute if they’re 18 and still in nappies” etc.

Not everyone’s reality is a “capable” child. But at the time I just felt that, well, my child is cute and loveable and easy going – I can only write and represent my own reality, right?

Whilst that remains true (I can only write about my experiences), I see more and more as Audrey grows, with the challenges we face/will be facing, why those families might feel the “cute” loveable baby that’s “just like other babies” angle is a bit icky.

Because Audrey is fabulous. She’s awesome. A lot of fun, a kind and sweet little girl. But she’s also not. She’s whiny, difficult, stubborn, she can be mean, unkind, naughty and hard work. Well, all kids are complex and can be kind but also mean… Audrey’s ability to be both wonderful and a pain in the butt is clearly something she has in common with neurotypical kids.

But the real “difference” – the real area where I feel like the mother of a child who is disabled/neurodivergent/has additional needs, are those things that separate her without question from her typical peers.

Running. Audrey likes to run down the street ahead of us. She’s pretty good at stopping at the kerb (but that’s not 100% guaranteed), but it’s still very stressful. In crowded areas, she could get lost or knocked over, roads with driveways or entries to parking areas etc are unsafe and it’s especially uncomfortable if she is able to turn a corner miles ahead of me. She loves to be free and she enjoys doing this. If Rex did the same, but I asked him not to, he would stop. Audrey on the other hand, often takes great pleasure in defying me. I can walk down the street with her younger brother and he will hold my hand, listen to me and walk sensibly. A walk down the street with Audrey can be like that (rarely) but more often than not, it’s stressful,

Complaining. This girl can whine. She can use this skill to get what she wants, but if we do stand firm, she’ll just keep doing it even if it is ruining everyone’s experience. She’ll whine if we are watching a TV show she doesn’t want to watch. She’ll whine if the walk we are taking is too long. She’ll whine if she wants to go home from somewhere we’ve just arrived at. She’s rarely shy at saying what she’s thinking, especially if that thought is “I don’t want to do this”.

Stopping. Preferable to the running? I’m unsure. The running fills me with fear, but the stopping brings out a very angry grown up mum side to me. I have very little patience with her when she just sits and refuses to move. It drives me mad. As she gets bigger I wonder how I will move her. Obviously I hope she’ll grow out of it soon.

A recent stop and sit.

Developmental milestones. This is a big one. Where other parents of nine year olds are eyeing up how close they are to an independent kid… that feels a very long way off for us, because it is. We are not even at the stage where we can trust her out of sight in the park (which is fine for her six year old brother), so getting to a stage where she’s maybe walking to a friend’s house around the corner or making us tea – that’s not even close. I know I am going to struggle when parents of typical kids start to discuss how much easier things are, and what it’s like to leave behind those stressful years of doing everything for your child… when I shall remain in it. Still reading bedtime stories, still wiping her bum…

Physical barriers. Audrey finds climbing, uneven ground, stairs and all sorts of fairly basic physical things tricky. She’s always going to have to work that but harder at things like this and it’s a shame because she loves sport, but it’s not always accessible as she can’t keep up with others and is a bit fragile (a good example would be that she loves kicking a ball around, but the reality is, playing actual football she will either never get a look in (too slow) or will get hit/kicked/knocked and be upset and want to stop). She can’t take part in the same clubs an activities that typical kids can without additional support.

Repetition. This kid can repeat and repeat. A good example would be: on Mondays, she has an after school club which means she needs two snacks (one for morning, one for after school). If someone so much as mentions “Monday” Audrey will say what club she does and that she needs two snacks. She’ll mention this on Sunday night, in prep for Monday. She’ll mention it on Monday morning, so I don’t forget. She’ll probably mention it when I collect her. And she’ll no doubt say at some point in the week when we discuss what we are doing Thursday, and she’ll feel the need to say that on Mondays she has two snacks. She is that repetitive. Yes some of it winds me up. But what I always think is – if I can only just about handle it, when I love her to bits, do other people just find her crazily annoying?!?

Societal barriers. There is no escaping that Audrey’s options are not the same as her brother’s. If she wants to do an after school club, I don’t just sign her up and shove her in. And the obstacles will increase as she gets older (for example, when Rex is a teenager, there will be no need for “childcare”, but can the same be said of Audrey in her teenage years?). And once she reaches adulthood, we have a new level to navigate (education, work, living arrangements, independence, life skills). I am not expecting an easy ride.

So there you have it, a little “happy birthday Audrey” with a big helping of real life. Audrey is a complex being! Not just the cute and hilarious kid that makes me proud. She is all of the things. She will need more help than her typical peers, but we are up for it. And nine years on from holding that scrawny little thing that looked like an orang-utan, wondering what I did to deserve a baby with Down’s syndrome, at least now, despite everything, I feel like it had to be something good.

Dancing Queen

~ Vickywoo ~ Leave a comment

I’ve just had an extremely stressful (but fun) weekend and I definitely need to pour it out here on my neglected blog. I can usually write whatever it is I want to get off my chest/share with the world via an Instagram post, but this weekend was a biggie, so here I am.

Let’s start with a brief note on Audrey’s dance history. At an early age (like many babies/toddlers), Audrey showed that she enjoyed music and moving to music. We went to all the usual music groups, as well as some a bit more different (me singing in a grown up choir whilst Audrey rolled around) and we listened to music at home, watched music channels, learned sing and sign with Singing Hands and had a boogie on the regular.

Once Audrey was nearly five I started looking for dance classes for her. She trialed ballet with Rex (he was two and just ran around), but I knew what would really make her come alive and it wasn’t ballet. So I found a street dance class for her and she loved it. Sadly, when we joined we knew the teacher running it was no longer continuing, so it was only for a few months, but it gave Audrey (and me) a lot of joy. She danced to George Ezra and Katy Perry, she learned little routines but it was mostly just good fun moving.

When that ended I got on a waiting list for a dance class (which never came to anything) and scoped around looking for another fit. Obviously Covid paused a lot of options, but at the end of 2020, I found a modern dance class for her that some of her classmates were also going to be attending. She liked it and she stuck with it (all the other girls from her class decided not to continue) and over a year since classes could take place, she has just performed in her first show.

The build up to this dance show has been a rocky road. Audrey started leaving the class (I wait in the building in a side room for her), coming to me for a cuddle, sometimes in tears. She was also rehearsing songs and dances at school and she said she didn’t want to do the dance show because: “too many shows!!”. I think of her as quite a happy girl who doesn’t stress or overthink things, but for this, she was feeling stressed. Every week she was saying she didn’t want to do the show, which was such a shame after all this time learning the routine.

We were concerned and confused about what to do as there is a fine line between “you’ve committed to this dance and we believe you can do it” and “it’s ok, you don’t have to do anything you don’t want to”. After seeing Audrey perform at her school show, I felt confident that she could handle her modern dance show too. She was just finding the repetition of the routine hard and also maybe a bit scared of the unknown – she had never been to the theatre booked for the event.

One day I had a revelation – Audrey was talking a lot about her best friend who had performed with the school at the Dome in Brighton. Her friend had showed her the routine and performed it at school, Audrey had loved supporting her. So I suggested that maybe Audrey would feel better if her friend came to watch? And it worked! Audrey was very excited by the idea. She said she would do the show.

And so we ploughed on, through some wobbles, but constantly reminding her that her friend would be there to cheer her on and we would all go for burger and chips after!

Show day came yesterday (the day after her school Summer Fair but that’s another outpouring of thoughts I’ll get to!). At 9am I took Audrey, Rex and his friend (the boys were performing tap in the show) to the theatre for the dress rehearsal morning. Chaperones were provided, but given Audrey’s nerves, we decided it made sense for me to be backstage with her. Again, I was initially torn between giving her the space and independence versus being there to give her support. My instinct was that she would need me, but sometimes I wonder how she would get on without always being micro managed.

Show day backstage

The thing is, I stress about Audrey with good cause – she needs reminding to drink water and reminding to go to the toilet. She’s on medicine for constipation and we are trying to get her dry at night, so these things to genuinely affect her mood and her routine. At the rehearsal, we initially sat in the room with the boys and their chaperone by mistake, but when we realised we were with the 44 other girls down the corridor, I had no worries about leaving six year old typical Rex to his own devices.

Audrey and I sat in the corridor as the main dressing room was simply too hectic. I had downloaded some shows on my tablet and in hindsight, I should have brought headphones as that many children together generates a lot of noise. She was doing ok though, she was in the Netflix zone (and not willing to let any other children see, she huddled close to that tablet!).

As part of the dress rehearsal we all went to wait in the wings as another dance finished. The girls in Audrey’s troupe were excited and nervous – talking about how dark it was and a bit scary! It was not helping Audrey. She was cuddling me, telling me she couldn’t do it. One girl from her school in the year below was particularly kind and helpful, she gave her a little pep talk (no doubt repeated from her parents) about how the audience was only going to be friends and family – no strangers, so not scary!

They did two run throughs of the dance and I felt a sense of relief that Audrey made it on stage and remembered the routine. Phew. After that, it was a bit more waiting around whilst Rex rehearsed tap and then we all went home for a three hour lunch break.

At 3.30pm we were back at the theatre. Along with the circa 50 little ones performing, there were now several groups of older girls milling about and the volume of chat, scream and excitement was now extreme. I was finding it all a bit overwhelming, so I knew it was hard for Audrey. She was dressed in her costume and cuddling me, saying she just wanted to get on stage, but we had over an hour to wait. After a while, we moved into the room with the boys which was still a bit noisy and chaotic, but a sanctuary in comparison to the main dressing rooms. At this point, Audrey started to get nervous again, she was tearful and told me she couldn’t do it. I hated leaving her, but I needed to take my seat in the theatre and having spoken to the dance teacher, I felt like giving her space was the right thing to do. I asked Rex if he could remind his sister she could do it (I’ve no idea if he needed to do this) and I left Audrey as she weakly gave me a little thumbs up and a forced smile.

I found Ted and Audrey’s friend ready and seated and explained that I had left her still feeling nervous. We were all worried she might not get on stage. Which was actually why it was an extra special moment, when the girls in her modern group came running on stage and Audrey was just a few seconds behind, enough to give us the fear, oh no, she’s not going to do it and then… boom! she appeared! Hurrah! Of course I was in tears through the whole dance. She looked like she was having the best time and she remembered her routine. She even shielded her eyes at one point to try and see us in the audience. It was spectacular… And this was followed by her brother Rex in his tap routine – which was quite simply adorable, so I continued to cry. He was completely unphased by the whole thing and just got on with it. I could not be more proud of them both.

Early that day there was a moment backstage where I was cuddling Audrey and she was saying it was all “too loud” and I was kicking myself for not remembering her ear defenders, that I felt envious of all the parents of the typical children. They’ve dropped them off, they’ve gone home. Done. There were reception children happily hanging about in the chaos. But my child is struggling and I’m stressed. It felt unfair. I felt like I was carrying a very heavy weight and I wasn’t sure I was up for the job. But seeing Audrey up there, performing alongside her typical peers was magical. It made it all worth it. The tears, the headache, the effort, it was worth it. Because she was given the opportunity, she wasn’t told “sorry we can’t cater for a child with Down’s syndrome”, she was included and we had a bumpy road to get there but she did it!

Walking to McDonald’s after the show

All I need now is a lie down in a darkened room for a week and I’ll be right back on track.

Let them be little?

~ Vickywoo ~ 1 Comment

Audrey turns nine in July and she still loves CBeebies (for any non-UK readers, this is a preschoolers TV channel, aimed at babies up to around age six or seven). She still loves dolls. She loves her toy kitchen. She doesn’t choose to read independently (unless it’s her assigned reading book from school), but she loves to read picture books from memory and be read to.

I am aware she is always going to be “younger” than her actual age. It’s not an issue for us and hasn’t really been a big deal, since having a younger brother has “allowed” her to continue to enjoy younger pursuits… In the same way that a lot of children with older siblings will find themselves interested in things considered “too old” for them. But who’s to say what’s for a six year old and what’s for an eight year old?

We were in a great Brighton park recently, an enclosed play area with a gate, big slide, variety of swing types, a climbing frame, sand pit… I guess I would say it is skewed towards smaller kids slightly, but still plenty to do for my two at eight and six. Rex got playing with a boy his age and the man with him (who made it clear he was a guardian but not a relative) started saying “I think you’re too old for this park now, it’s a bit boring isn’t it? I think we should stick to Preston Park.”. The reason this annoyed me was because it was the adult deciding, the kid was having a perfectly good time and didn’t say that the park wasn’t good enough. My two enjoyed themselves and I felt no need to question the targeted age of the park.

At home, Audrey’s love of (almost) all CBeebies television shows continues. Rex is very happy watching most of her choices too, but he rarely asks for them (he has moved onto CBBC shows, but prefers Netflix). For the first time in months Audrey chose to watch Bing and my instinct (probably because I’m not a fan) was to say “I think you might be a bit old for Bing now?” but of course I corrected myself and said of course, if that’s what you want to watch that’s fine. Even Rex sat watching it happily.

Audrey does enjoy TV targeted at her age as well as the mountain of much younger stuff, so why does it matter? It’s not that she can’t follow a plot or enjoy a more “grown up” show, she just still enjoys the young shows. That said, I’ve noticed she really does prefer mild stuff. She doesn’t mind a bad guy and a bit of conflict, but would prefer it to be very gentle. Shows for older kids can get very frantic, loud and full on – an assault on the senses at times! This is not Audrey’s vibe (Rex however – loves that).

Of course I understand encouraging kids to grow up and do things for themselves, but do we also have to start telling them what books/TV/toys are ok to enjoy? I mean, we excitedly read them Harry Potter, getting four or five books in before realising it really gets too old for them and they were bored/not really following what was going on. I’m relieved to be currently reading the Amelia Fang books which are much lighter in subject and length! And we still read two picture books a night because I love picture books (and so do they).

I remember I was in Year 7 (aged 11) when catching up with friends and we were talking about our Barbies. One of my friends said she wasn’t into them anymore, everyone agreed and so that was that, I got home that day and packed mine away. They had been declared uncool and too young. How much longer would I have happily played with them I wonder?

Audrey has asked for a picnic party at home for her birthday with traditional party games (musical statues etc) and I’m already worrying about whether her friends will be rolling their eyes and cringing at the choice to still play games. I don’t know what is acceptable fun for a group of eight-nine year olds!! I guess they are just going to have to accept what Audrey finds fun.

Anyway, I’m not sure where I am going with this little vent. I guess I just want everyone to consider whether you need to push your child onto the next level, the older thing, the more grown up thing… or let them decide when they are ready? I get you might not want them using a dummy at school age or dragging a teddy into college, but there is something to be said for letting kids take the lead. And for letting them be little for that little bit longer!

Audrey with the doll’s pram she got Christmas 2021 (aged 8)
Audrey with one of her many, many dolls! This is LuLu, she was 50p from a charity shop.

Mother’s Day 2022

~ Vickywoo ~ Leave a comment

Is it me or is every holiday, awareness day, celebration, commercial nonsense etc now much bigger than they used to be? World Book Day is like Halloween, Halloween is like Christmas and Christmas is… well it’s still Christmas but it starts in November.

Mother’s Day for me was always a time my family got together because we usually got together for a roast on a Sunday anyway. The only difference would be bunches of flowers and boxes of chocolates for Mum (she liked colourful arrangements and the smell of freesias, walnut whips and cards with ridiculous cheesy poems in).

Now the Mother’s Day machine is so big I get a an email from retail companies a month in advance asking my if I want to opt out of the barrage of gift options. It’s nice I can opt out (not having a mother or a mother in law), but it’s also annoying receiving those emails as a reminder of that.

My last Mother’s Day with my mum… I think I actually saw her on the Saturday. I think that was the day a lot of family came to gather around her bedside. She was at home, in a bed in the living room, dying of cancer. Just over a week later, she died. That was 2017.

You would think I’d be over it by now. I tell myself; well, if she was alive you’d still be holding the phone away from your ear when she tells you a long and pointless story and won’t let you speak. You’d still be annoyed when she expects you to have watch Britain’s Got Talent/Coronation Street and get ready to discuss it. And she wouldn’t drive down to visit you anyway as she’d grown fearful of driving “far” in her old age.

But that’s not the point. I still struggle with the why? It just feels so crazy to me that my sister had her mother her entire life, because her life ended at 45. And likewise my mum had her mum her entire life, but that’s because she died at 73 and good old Nan died at 101, three years later. My sister and my own mother never felt the pain of losing a mother, but I felt the pain of losing them.

I went to town on my own to watch Steven Spielberg’s West Side Story when it came out (it was wonderful). I expected to be a big sobbing mess because it was my mum’s favourite film and we played “Somewhere” at her funeral. I had a few little cries, but I made it through without becoming a mess!

Weirdly, I only realised at the moment it started that my mum would never see it, she would never even know they remade it so beautifully and that made me sad. I don’t normally dwell on what she’s missing out on, I’m usually more focussed on my kids and what they’ve been robbed of – the special grandparents experience that I had. Ultimately I was uplifted by watching this film that meant so much to my mum. When Tony sang “Goodnight, goodnight, sleep well and when you dream, dream of me…” I suddenly remembered how my mum used to sing that to us all the time at bedtime. A tiny thing that was part of our childhood and something I can’t tell my mum I remember and still treasure.

Mother’s Day is at least mine now. I am the mother of the day. And I know I’ll see lots of lovely posts about those of us who don’t have their mothers, are not mothers ourselves, have a difficult relationship with our mothers and so on… and I have the joy of my two magical children to help me through, but it will still be a day tinged with sadness for me.

Of course once it’s out of the way there will be plenty of Father’s Day opt out emails flooding into my inbox to contend with.

Audrey at 8 years old!

~ Vickywoo ~ Leave a comment

My baby girl turned eight this summer.

Ok, so I have been neglecting the blog, I still use Instagram as my main daily/weekly outlet for what’s on my mind and what’s going on with us day to day. It’s not that I don’t often have a lot to say, it’s just that I don’t set aside the time to write all the thoughts down…

And so, I drafted something for Audrey’s 8th birthday in July and forgot about it. I like to document her achievements and changes, so I am still going to write something, especially as it’s now October and therefore Down’s Syndrome Awareness Month.

At eight years old, Audrey is still small for her age. A lot of people have asked recently if Audrey and Rex are twins (he is five). Her favourite TV shows are Rainbow Ruby, Justin Time, Muppet Babies, most of CBeebies and Bluey. So much Bluey. Her favourite colour is rainbow (all of the colours ❤️). She likes cats, imaginative play, yoga, dance, cookery, kicking a ball and being on the swings. She can confidently sit on the ‘big’ swings, she is regularly asserting herself, refusing help and doing more for herself (like getting dressed, brushing her teeth etc).

Rex and Audrey fight a lot. She is easily upset by minor things, but they also simply like to push each other to their limits. On the other hand, she is very protective and loving, which is partly why they fight as Rex hates that! Even though they tend to fight and not play together that well, Rex often asks to sleep in her bed and I know that they will both stick up for each other when needed.

I have a reason to tell her I’m proud of her every day and I am often in awe of what her little something extra has done for us as a family. Her writing, reading and maths are all progressing and she still is very happy to go to school everyday (even if she refuses to do work when she’s there!). She loves Fridays because it’s PE day and fish and chips day.

Audrey never really asks for much (unlike Rex who wants every toy he’s ever seen) and at the moment she is really enjoying her baby doll again, being a mummy, reading her stories and giving her milk. Her little doll’s pram broke recently (it finally collapsed when a full sized eight year old sat in it) and I’ve managed to find a yellow pram for Christmas via eBay that I know she will absolutely love. £15 well spent and honestly, I know if that’s all she got, she would be thrilled. Audrey can really make you understand simple pleasures.

Audrey’s enthusiasm for life continues to shine and long may it continue! We are so lucky she has a voice and boy can she use it – early in the morning her and her brother can talk and talk at a very loud level!

Check out our Instagram for lots of DS Awareness Month posts as I am taking part in Positive About Down Syndrome’s daily posts.

Everybody died so we bought a house…

~ Vickywoo ~ Leave a comment

File this one under life milestones. At 42 and (almost) 40 respectively, we (Ted and I) have bought our first house.

I often felt like we both made some strange financial decisions to get to this age with no home of our own or assumed that everyone else just had lots of money? It shouldn’t matter how you buy a home I guess. Inheritance, hand outs or hard work, but it certainly feels strange to know that we have this specific house because we have no parents.

Whilst sharing pictures of the kids and general day to day on my Instagram, I didn’t mention our house hunt. We’ve been looking at houses for years of course, but it’s only been in this year we’ve been in a position to buy. With lockdown and various other hold ups, we found ourselves finally “ready ready” to actually buy a house, only to find we landed right in a big property boom and mega scrum for houses!

Surprisingly, we only viewed four houses in total, the fourth being the one we purchased. I’m not sure I subscribed to the “when you know, you know” school of things before this (for houses). We’ve been around the rental market enough times, where decisions need to be quick and a “this will do” attitude generally works. However, having said we would not get a house that needed a lot of work (because we are not do-ers), we walked around this (very much needs a lot of work) property feeling all the feels.

I knew pretty soon this was a probate property (that someone had died), but didn’t ask the estate agent to confirm. We left and I burst into tears in the car. It just made sense. We are able to buy because our parents died and here was a property being sold because someone had died. There were “World’s Greatest Dad” trophies and “Gorgeous Husband” cards still in the house. I knew what it was like to have someone be gone, yet still have so much of them left behind.

After a nail-biting “best and final offers” battle, we were riding so very high on being the “winners” of our home. We binged property shows, created pinterest boards, discussed nothing more than renovations and the big garden that awaited us… it felt too good to be true. Which of course it kind of was.

So many lovely friends were pleased for us in finding our big family home, saying things like “you guys deserve it” and “it’s about time” and I guess we did look back on our “bad luck” and feel relief that all the cancer, death and house selling was behind us and now we were moving forward with a genuine grown-up long-term family home. Then came the survey….

As first time buyers, we had little knowledge of how a survey is a lot like a Disability Living Allowance form or Educational Health and Care Plan (sorry, one for the SEND families!). Basically instead of it being a lovely report about the potential of a house, it’s a damning report about all that’s wrong with the place. We sat on a Friday night reading an 80 page document that made it sound like our future home might fall down around our heads or suck up all our money trying to stay up. Eek. Suddenly we had that feeling again – of course this was going wrong, things always go wrong for us. I know how ridiculous that sounds, but it was hard not to feel like this was doomed based on experience.

Anyway, after every single person we mentioned the survey to agreed they too had hideous surveys for house they purchased, we picked ourselves up and moved forward.

There is a certain sadness that we now have a big family home, perfect for entertaining with the fact that, the reason we can afford to buy it is because that family is no longer here. However here we are, moving into a big old people house (it was with the previous family for 58 years!), with a lot of work ahead of us… but also… hopefully a lot great times to be had here

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Are things getting easier or am I getting braver?

~ Vickywoo ~ Leave a comment

Half term is done and dusted. Like many parents, as half term approached, I was torn between the feeling of relief that we don’t have to rush around to be at school on time and despair that I have to come up with ways to entertain two small children for a week, whilst squeezing in work.

Train travel!

I’m often quite slack at filling a school break with daily activities, but I like to have at least a couple of things booked in. Lockdown was certainly a time where we all realised that we could survive (just about) without having places to go or things “booked in”, suddenly we just had to make do with local outdoor space, our own company and home activities. Having a child like Audrey meant that home was actually an easy place to be – but Audrey’s brother is more like a puppy – he needs his daily exercise or he tears the place up!

I always have to remind myself that with children you go through phases – where some of what they do makes them ‘easy’ and other aspects are hard. Like when a newborn doesn’t sleep well, but at least they don’t move. With a child who has additional needs, it’s harder to second guess when they’ll be “easier” and when they’ll be “harder” to deal with. For example, Audrey wasn’t mobile until she was 16 months old (when she bottom shuffled) and once she was able to walk, she wasn’t immediately the sort to wander off or purposefully run away – that came around age 5/6 ish when it made outdoor life much more tense. She was definitely what I’d call a relatively easy child when she was small. She’s more complicated now.

Beach time.

Because of my tendency to fret about the little things that could make a trip with children stressful, I usually aim to “play it safe” and take my two to places we have been to lots of times or to meet with others so I have more hands/eyes on deck. I’m usually worried about parking, distance to a toilet, their stamina for walking distances… some of this can be planned for, but general whining or dislike of the place can (and too often does) come out of the blue. You can’t always plan for a child’s mood.

So it feels a shock for me to say that this half term was a success. In the past I’ve had some disastrous days; like Audrey completely disappearing for approximately 15 minutes and me calling 999 or Rex stacking it on concrete 30 seconds into a park trip… but this week I have told my children everyday “thank you so much for a lovely time today and for being so good” and meant it! I mean, what is going on?! It had made me sit and think: are they getting easier or am I getting braver? I guess it’s a combination of the two.

In many ways, with Rex aged 5 and I’d say, quite grown up for his age and Audrey at nearly 8 but “delayed”, at times it is much like I would expect dragging twins around would be. Audrey often makes the rules, as it can be her stubbornness that dictates where we go and when we leave, although likewise she has a kind and generous streak which allows her to be convinced to give in to her brother’s demands.

This week I did things that would normally scare me (like going on a train alone with the two of them, with no buggy) and we didn’t just survive – we had a good time! We went to the cinema and Audrey wanted to go to the toilet three times during the film(!), but with a friend sat in the row behind us, I didn’t have to convince Rex to join us. In all honesty, I trust him much more to stay still or stick with me than I trust Audrey, so it was a relief she was the frequent toilet visitor and not him!

At the beach, Audrey was happy sat making sand castles for a lot longer than she usually would be. Rex adores the sea and could probably stay all day if it’s warm, but on this occasion it was a bit chilly, so he was happy to leave when Audrey was (about 90mins in). This is an improvement (it’s always a disappointment if you’ve dragged everything but the kitchen sink down there for one of them to whine and want to leave after 15 minutes!). Naturally, Audrey needed the toilet and had I been alone with them, we would have had to pack up all out stuff (blanket, water bottles, jackets, buckets… laden across the sand) and hiked back over the pebbles to visit the toilets before dragging it all back. Thankfully a friend came along with us and watched Rex whilst I took Audrey off to the loo. There’s definitely safety in numbers when you have a child with SEND (or even in fact, just if you have children)!

Ice cream fun.

Audrey still tests me of course, sneakily creating a bit of distance in the park or running off ahead around a big garden visit and she often decides she needs a wee once we are as far away from the toilet as we can be… but we got by, we had no accidents and I kept close to her without needing to sprint or feel stressed… and it’s made me look forward to the summer holiday ahead. I’m hopeful that the combination of my bravery and their progress will make for fun times all round!

Children’s picture books that deal with loss and death.

~ Vickywoo ~ 1 Comment

I usually like some sort of alliteration or pun in blog post title, it but in this case, like some of my favourite books about loss and death, I thought I’d be more direct.

Ted and I have lost a lot of loved ones and know that we will lose many more, because, hey that’s life (and death). We definitely both feel that losing our parents before the age of 40 was too soon, but the real shame is the children no longer having any grandparents.

Both grandfathers passed away before the kids were born, but our mothers died having known both Rex and Audrey and I was keen to find stories that would in some way explain what happened or at least let them explore the concept of loss.

When my mum died, Audrey was three and a half and Rex just one year old. I headed to our local children’s bookshop to ask them for books they would recommend and I came away with our first title on the subject, The Memory Tree (a couple of other titles were offered, but I’m an artwork snob to be honest) . A few others were searchable on the internet or mentioned by friends (or even kindly bought for us by thoughtful friends), but as our picture book collection grew, I realised there are several that you wouldn’t necessarily know tackled this subject.

This list is by no means exhaustive, but I am confident you’ll find a title or two you hadn’t heard of before. I also think these are great books just to start a conversation about loss and death that we might otherwise avoid having until it’s absolutely necessary. In my experience, small children are incredibly brutal and matter-of-fact about death, so in a way, it’s good to catch them at this age when they have no fear and ask a lot of questions!

These are in no particular order and FYI when I write about each book below, please expect spoilers, not that I expect anyone to be precious about the plot of a children’s picture book, but just in case!

The Memory Tree by Britta Teckentrup:

A simple story about a fox who falls asleep (forever) and a tree that grows in his place, as his woodland friends recount stories of time they spent with fox. This is a gentle book and it certainly made me feel better about my own loss – focusing on the legacy someone leaves behind and all the lives that person (or in this case fox) touched.

Duck, Death and the Tulip by Wolf Erlbruch:

Duck Death

Recommended by friends, I love how this book represents death as a skeleton and is much more direct than other children’s books. It’s simple and tender and it made my children ask some interesting questions. Death is always there and when you get to know him, he seems quite nice.

Looking for Yesterday by Alison Jay:

This one was a gift from a good friend who spent the day with Audrey and bought her some books. The good news is: no one dies! It’s about a boy who wishes he could relive his best day and his grandfather explains why you shouldn’t go chasing after yesterdays, you should be looking forward to other wonderful days to come. A story that shows what a life well-lived is all about – dancing, ice cream, mountain climbing, love…

Waiting for Wolf by Sandra Dieckmann :

Waiting for Wolf

So when I say there were some classic stories about loss and death that I chose not to buy because the illustrations didn’t appeal… well this one has the kind of artwork I was hoping for.  A beautiful, gentle tale about two friends (a wolf and a fox), wolf is older and leaves fox with the line “Tomorrow I’ll be starlight” and when fox can’t find her wolf friend, she pulls the blanket of stars around herself and spends some time in darkness. A book to treasure.

Up the Mountain by Marianne Dubuc:

Up the Mountain

This was a lovely find from my mother-in-law, who no doubt saw the relevance of the story when she bought it for the kids. An older badger meets a young cat on her usual trek up the mountain and they start a friendship, which leads to many more visits, until badger starts to become too old and tired for visits up the mountain and cat has to go alone… A tender ‘circle of life’ story.

The Goodbye Book by Todd Parr:

A very simple and colourful book about the emotions when someone has gone (in this case a goldfish has lost a goldfish friend). A good chance to discuss all the different feelings a child might experience with loss.

Sad by Michael Rosen:

Michael Rosen’s book deals with death, but also sadness for all kinds of reasons and why being sad doesn’t always look or feel the same. My two (perhaps a little young) didn’t show much interest in this book, but I think in time it will become very useful for tackling feelings.

Grandad’s Island by Benji Davies:

Bright and chirpy illustrations, this one is a bit subtle. Grandad leaves for an island and even sends a postcard? It’s sweet, but almost too gentle. I don’t think the kids really thought this was about losing someone, more about someone going on holiday.

Heart in a Bottle by Oliver Jeffers:

Perhaps a little bit more abstract for small children (but my two do like it), but then Oliver Jeffers simply knows what he is doing with children’s books. It’s definitely had me in tears. It’s about how losing someone can make you close yourself off to happiness and life experiences.

If All the World Were… by Joseph Coelho:

If All the World were

Illustrations that I love, lots of magic between a girl and her grandfather. “If all the world were memories, the past would be rooms I could visit and in each room would be my granddad”. Lovely.

Rabbityness by Jo Empson:

Rex’s preschool kindly let us borrow this book when my mother-in-law (Sarah, the kids called her Bibi) died suddenly. It’s about how we touch others’ lives and the things we leave behind/teach others and it tells this through paint splattered crazy illustrations.

The Lonely Tree by Nicholas Halliday:

Another one from preschool, as a picture book fan (and snob), I thought this one looked awful. Computer generated images of trees!? Urgh. But it does convey a message of the circle of life and it was useful for us.

Forever by Beatrice Alemagna:

For

A book about how things end, float away or disappear – and it’s beautiful. It doesn’t tackle death directly, but introduces the concept of things going away and it is lovely and funny with tracing paper pages to make things appear and disappear.

Are you Sad, Little Bear by Rachel Rivett:

Audrey found this one in the library (she has a habit of unearthing the right book at the right time!) and it’s a sweet and traditional book about a bear asking questions after his grandmother dies. What is it with woodland creatures and dying stories though? They definitely dominate the market on this subject!

The Invisible String by Parice Karst

Another one we found in the library, this is more about love and being connected whether we are together or apart (good for anxious school starters). The twins in this book do ask if the invisible string can reach their uncle in heaven and this concept could be useful for children to feel a connection to someone who has passed away.

Badger’s Parting Gifts by Susan Varley

Recommended by many, again, I was put off by it’s dated look, but it’s actually very upfront “…dying meant only that he would leave his body behind… his only worry was how his friends would feel when he was gone.” I feel the Memory Tree may have been inspired by this classic.

Always and Forever by Debi Gliori

I am not a fan of her illustrations, so had ignored this one for a while too! It’s another woodland creatures-lose-a-friend-and-recount-stories tale, of which there are a few and if I am honest I would rather chose one of the others over this one!

That’s all I have for now and I hope this collection is useful to someone and I would be happy to hear of any other recommendations – I cannot imagine ever stopping buying children’s picture books, I love them so much!