Wednesday, 4 September 2013


Well it's all over and done with. Bee's first morning at school has been and gone. I was very grateful that Foz's work allowed him some time to come with me in the morning. I felt it was important for Bee to have both parents there but also important for Foz. Having to work all day means he misses out on so much so I was very glad he got to share this moment.

We got up extra early to make sure that we had time for photographs. I'd got Bee a special breakfast of a chocolate croissant but she wasn't impressed. Ah well. We spent the morning talking about school, about all the new toys to play with, the fun things to do, the friends she would make. By the time we were ready to leave the house she was very excited. 

I was the one that got her dressed, Foz was upstairs getting himself ready. I'll never forget his face as he walked into the living room and saw her. She looked so grown up but at the same time like a baby playing dress up in clothes too big for her!

All too soon it was time to head over to school. We spent some time taking photos on the doorstep then all got in the car to make the 10 minute journey.

Outside school was very busy with kids and parents everywhere so we had to park down the road. It felt strange, walking to school amongst so many bigger kids. Bee looked so tiny and delicate. On arriving at school all the children have to line up in their classes before being escorted inside by their teacher. We'd been notified during one of our previous visits that Bee's class would line up at the far end of the playground but yesterday morning was a little like organised chaos at the 'new starters' end of the playground. We had no idea who was in Bee's class and didn't want to line up in the wrong one so we just hovered near the edge of the playground and waited to spot a teacher we recognised. 

Of course Bee did not want to stand still. There were lots of other children to nosey at and playground equipment to explore. I kept explaining that we had to stand still and wait for her teacher but Bee doesn't really do well with waiting, she seems to expect everything to happen immediately as it's mentioned. She kept asking "where is? Where is?". Thankfully it was only a few minutes before the teacher appeared and Bee was thrilled to see her. We got an "ooohhhh here is" with a big scrunchy face. Success. Then there was just time for a few kisses and cuddles and she was away, happily holding her teacher's hand and not even glancing back. 

I'll be honest, I cried.

I was so thrilled that she had no fear and was secure in the company of her new teacher. I want her to be happy and confident at school, to enjoy and get the best out of it. But there was this tiny little part of me that was desperate for her to cling, to cry... to just need me.

We were one of the last out of the playground. I couldn't bear to just walk away. I'm glad Foz was able to be with me as it made things a little easier. He gave me a hug then did his best to distract me with other things as we made our way back to the car. I took him into town for work then spent some time browsing the retro games shop to cheer myself up!

For pick-up my mum and dad came along. Bee was thrilled to see us all. Her teacher told us she'd had a great morning but towards the end of her session she'd been asking for mama and daddy. A good start though!

She'd also been chewing on her tie. A lot. She'd almost chewed off the name label I had painstakingly sewn on and had been chewing on the sleeve of her cardigan. Oh dear. I asked her teacher about Bee wearing some kind of sensory chew product through the day to prevent her from destructively chewing her clothing. The children aren't supposed to wear jewellery or anything non-uniform but in this instance we really do feel it's necessary for her needs.

After school it was off to McDonalds for Bee's favourite treat of chips, then to soft play with grandma!

By the end of the session Bee was so tired she was falling asleep on her feet. It was definitely time for home and a relax on the sofa!

Her first morning at school couldn't have gone better and we're thrilled that she seems to be settling so nicely. I'm a little concerned that as her days there get longer and she begins to realise that she has to go all day, every day, I'll have a problem. But for now I'm just grateful she's enjoying it and happy to go in!

Proud of you baby girl! xx

Monday, 2 September 2013

It's Finally Here

Well tomorrow is the big day, Bee is starting school. It's the ultimate cliche but I can't believe the time has passed so quickly. It seems only yesterday we had the summer stretched out in front of us and now school has crept up to surprise us and I'm not ready. I'm not ready to let her go.

For nearly 5 years it's been just me and her, while her Daddy works I've been the one at home. She's my kid, my star, my monster, my Bee, my everything. I've seen every moment of development, every achievement she's made from the small to the huge. She's my constant companion and my best friend. Spending these precious years with my Bee has meant everything to me.

Tomorrow everything will change. Things will never be the same once morning dawns and school beckons. Tomorrow marks the day Bee will start making large strides away from the security of my side to the uncertainty of the wide world. We'll have weekends and holidays but no longer will we have our little daytime world of two. From tomorrow a complete stranger will have care of Bee for more hours a week than I will.
The house is going to seem so empty without her little voice. I'll miss the constant "mama, mama, mama, mama, why, why, why, me too, what you do?"

Foz tries his best to be supportive but I think it's harder for him to understand as not much will change on his end. Bee will be here as he gets home from work as always and they'll have their weekends together.

I'm worried about how she'll cope. I'm worried the days will be too long for her, I'm worried she'll get knocked over and picked on, I'm worried she won't cope with the lessons, I'm worried she won't sit at mealtimes, I'm worried, I'm worried, I'm worried... 

Aside from the worry (and the self-pity) I'm very excited about the challenges that lie ahead for Bee. I know that no matter how difficult or prolonged the 'settling in' period is that eventually Bee will loved school as she loved nursery. I'm excited about some of the things Bee's new teachers have planned for her and I'm very confident in all of them and their ability to help Bee thrive. 

The first day of school marks another milestone in my Bee's life and already she has achieved so much more than we could have dreamed. She makes me proud every day.

I love you Bethany May and wish you so much joy and happiness in your new adventure xx

Back to B11

It's been an interesting and eventful few days for us as a family. Wednesday brought Foz's day off and the afternoon found us at home having some dinner before a planned trip to the park. We left Bee watching CBeebies as Foz brought the washing in off the line and I nipped upstairs. We'd recently got Bee some new George Pig bedding and Bee was very excited as Daddy was bringing it in off the line.

I started downstairs a few minutes later to find Bee halfway up, unattended dragging her George Pig duvet cover behind her saying "me bed, me bed". She wanted to put it on her bed. I said her name and asked her to wait there, stay there, panicked even though I knew she was capable of climbing the stairs. It was the bedding that worried me. 

As I shouted her her feet got tangled and she lost her balance, falling face-first down the stairs. I screamed and dashed down after her, nowhere near able to make it in time and she hit the bottom with her shoulder and the side of her face. I was horrified and screamed for Foz, who came running out of the garden. I picked her up and thankfully she was hysterical (and not unconscious) but her nose was bleeding and a lump was forming on her temple. I was concerned about broken bones and we agreed a trip to A&E was necessary.

Foz held her on his knee, trying to calm her down as I dashed about packing a bag with all the essentials. Within 10 minutes we were in the car and making the 10 minute drive to the hospital, feeling like the worst parents that ever were or will be.

A&E booked us in and we went sent down to Children's A&E to wait for the doctor. Of course once we got there and Bee saw all the toys all she wanted to do was play. Typical. I've lost count of how many times I've said to a doctor "she is ill...honest!"

 After a couple of hours of waiting we were sent home with a head injury advice sheet and a warning to keep an eye on her, like we wouldn't! As she hadn't been knocked unconscious they weren't too worried about concussion and she had brightened up during the wait, even though she was still a little quiet. We took her home and kept her up for the required 2 hours before Foz put her to bed.

The following morning, Thursday,  Bee woke, seemingly o.k but as the day wore on I could tell she wasn't herself. She was quiet and wobbly on her feet, had a very snotty nose with a cough and kept stumbling. Her temperature was on the rise too. Still, there was nothing concrete to justify taking her back to see a doctor so she had some medicine and went to bed at the usual time. 

Just past Midnight I went up to bed and popped my head in to check on her. She was surprisingly already awake and so I went in, sitting with her a while and stroking her hand. She was very hot and snuffly, letting out the odd little cough. After 10 minutes or so she started making the sound that I know means imminent vomit so I sat her up and shouted Foz, who came up with wipes and other necessities. She was sick everywhere and as I stroked her back for comfort she suddenly went rigid and almost flung herself back onto the bed, her eyes bulging and not focused, her arms and legs jerking with spasms shaking her whole little body. She wasn't drawing breath. Foz and I panicked, him trying to hold her to stop her hurting herself on the metal frame of her bed and me screaming her name. I ended up clapping as loud as I could in her face, it was all I could think of to stop her. The whole thing lasted about 10-15 seconds but it felt like a lifetime, those moments where my daughter wasn't breathing and I had no idea what to do, I was helpless. 

After she snapped out of it she was hysterical. Foz and I didn't even have to say anything to each other, he started to comfort her and get her changed from the sick-covered pyjamas and I rushed around packing another bag for A&E. We were on the road by 12:40am, making the 10 minute trip. All kinds were going through my mind, my main concern was that the bump to her head had caused some kind of brain damage. Looking back it was probably a silly fear but I'd never seen her like that, never seen anything so terrifying. 

We were seen fairly quickly at the hospital, although the main A&E was busy there aren't many children need emergency care at that time in the morning. Thankfully it was the same doctor as the day before so we didn't have to try and explain everything, just what had happened that evening. He was concerned and after giving us some Calpol to put down her tube to bring her temperature down he arranged a bed on the ward.

We made the long trek up the corridor to the Children's Ward where we were lucky enough to have a whole 6-bed bay to ourselves. I'd been worried about sharing the space, as mentioned in previous posts, Bee doesn't really understand appropiate behaviour in certain situations and we would have found it very difficult (virtually impossible) to keep her quiet in respect of children & parents around her sleeping. As far as we're aware Bee doesn't know how to whisper. 

By the time the on-call doctor had been round and Bee was able to sleep without being poked and prodded it was getting on for 3:30am. We were all shattered and I left Bee sleeping to take Foz home, he was supposed to be at work in just over 5 hours! We hit McDonalds on the way home, both starving and I stayed at home long enough to eat it with him before heading back to my sleeping Bee on the ward. By this time it was getting on for 5am and as they were due to wake her then anyway (every 2 hours is standard precaution for a head injury) I paced the ward trying to stay awake. Once the check was done, she woke quickly and was alert, both she and I were able to sleep. I curled up in the uncomfortable chair next to her bed, padded it out with pillows and tried to get some sleep.

Home comforts can make all the difference
I was up again by 7am, when the shift change came in. Nurses don;t make any allowances for people sleeping and the ward gets noisy very early. Thankfully Bee slept on, the poor kid was exhausted, so I sat and quietly read my Kindle, waiting for breakfast to come round. My girl must have the nose of a bloodhound as she started to stir just as the breakfast trolley made it to the bay next to ours.

Two plates of toast, a cup of tea for Mama and some CBeebies later and Bee was looking a little brighter. Her raging temperature was gone and she was more alert.

Of course Bee wasn't happy to watch CBeebies in her cot for long so it was off to the play room, which has had a revamp since we were last in-patients. It's very hard to convince a doctor that your child is ill when she's doing this....

Around 10am the doctor came and had a chat with me. The diagnosis: Bee had a febrile seizure brought on her by very high temperature. It was nothing to do with her fall from the day before, it was simply a coincidence.

As heart complications are common in children with Kabuki Syndrome and seizures can be related to that the doctor ordered an ECG for Bee, just to be on the safe side. It came back perfectly clear and we were allowed to go home. 

Having her ECG
We are aware though that seizures can suddenly manifest in older children with Kabuki Syndrome and it's something that we need to keep an eye on. Should she have another one and there's no high temperature we'll have to go back for further tests. As it is we're on the waiting list for another EEG due to her little 'absences', moments of tuning-out.

Overall it's been a very stressful and worrying few days but Bee has come through it all fine, just a graze on her nose, a bump on her head and a bit of a cough & cold. Thankfully she'll be ready for the start of school on Tuesday, she's such a little soldier.


I want to add here that our NHS is a very important institution in this country. We've needed a lot of support for Bee since her birth and it's always been there for us, without charge. We've always received the best of care and have met some wonderful medical professionals along the way. Sometimes, when headlines like 'hospital lets patients die in corridor' etc hit the news it's easy to forget that these are isolated incidents in a huge network of healthcare that supports our entire nation using world class training, techniques and equipment FOR FREE.

It doesn't seem to really be penetrating the public consciousness yet but the current Conservative government is attempting the sly, secretive dismantling of the NHS and it's very important that every UK citizen who cherishes what we have gets behind the campaign to save it from privatisation.

This is something that is very important to me.

You can find more information here:

Wednesday, 28 August 2013

The Farm

Following on from the 'make the most of our last days' trip to Eureka! last week, this week we visit the local pick-your-own farm for some veggies. I knew from the website that they still had some peas left and as the weather was so beautiful I decided to take Bee down to pick some. I was a little uncertain as to how successful it would be as Bee really doesn't like many textures and outdoorsy things.

I'd spent the morning explaining to Bee that we would be picking vegetables to eat while we were at farm, in preparation for the difficulty she may have with it. When we got there she was raring to go, we collection our plastic tray from a staff member and made our way out to the vegetable fields.  

Although there were lots of vegetables to choose from I knew I'd have the best chance of getting co-operation out of Bee if it was something she really liked, so it was straight to the peas. All they had left were sugar snap peas and mange tout, which was good enough for us. 

Bee was happy enough to walk down the narrow, uneven aisles between the pea plants although she was a little concerned by the greenery brushing against her bare legs and insisted on holding my hand. Something silly Mama didn't think about. Sadly, as we're quite late in the season, many of the 'easy pick' peapods were gone and we had to dig around towards the base of each plant to find anything. This was totally beyond Bee from a sensory standpoint and so I did my best to find pods then manoeuver the stem towards her for plucking. This worked quite a few times and we were even lucky enough to find a few missed ones towards the top that Bee could manage by herself.

After a little while the amount of stressful texture around her all got too much and all she wanted was to be carried. Which is lovely, except when you're stuck in the middle of a field, with 2 heavy bags, a carton of peas and a very heavy toddler in the unrelenting sun. I managed by carrying Bee for a short distance towards the end of the aisle, plonking her down in a space while I looked for more peas then carrying her a little further and so on. She was happy to stand and wait while I looked, so long as she didn't have to move through the plants. She quite enjoyed standing and munching on peapods!

When we had a tub full of sugar snap peas I carried Bee back to the pram at the end of the aisle, where she sat eating peas and drinking water, ready for some quiet time after the stress of the greenery. On the walk back to the farm shop to pay for our haul we passed the broadbean section, I grabbed some of those and a raw corn on the cob from the maize field, which Bee loved eating! 

By the time we'd purchased our veg (with a few extra fresh corn on the cobs from the farm shop) Bee was refreshed and ready for the park. Sadly it's not very good, consisting of just a tall, ladder-accessed bridge and slide. Not at all suitable for Bee. After lots of asking "why" she couldn't play on the park she contented herself with sadly watching from the sidelines and chewing on her doll. My heart ached for her.

Sad girl
I managed to persuade her away from the park with the suggestion of playing with her ball on the field. Eventually she agreed and we went hand in hand back to the car to find her ball.

We took a picnic blanket and her big Minnie Mouse ball and had lots of fun playing catch and chase on the field. The park became a distant memory, all disappointment forgotten. Soon it was time to collect Daddy from work, well timed as my girl was beginning to flag. She was quite happy to continue her veggie picnic in the car though!

Thursday, 22 August 2013


As school gets ever closer I've been trying to fill mine and Bee's last days together with lots of fun. This week we went back to Eureka! in Halifax.

We last went for Bee's birthday in September 2012 & she loved it then. We haven't been back since but this week my mum and I finally made the trip over the Pennines to Yorkshire.
As before, Bee's favourite part was the mini-high street and the place she went to first. We played shops for ages, taking turns being the 'shopper' and the 'shop lady'.

It was incredibly busy this time as it's the school holidays. Last year was relatively quiet, being within term time. Yet the improvements in her language, mobility and confidence meant that she wasn't fazed by the masses of children around her or by all the noise. Although she wouldn't join in with the others she confidently moved around them and wasn't afraid to play near them without myself or my mum being next to her.

After the shop it was a visit to the post office and the house. Bee loves 'pretend play' and the Eureka! high street is the perfect play & learning opportunity for her. We put stamps on parcels and chose who to send them to, we made food in the house kitchen and played in the water table in the house bathroom. Back down the stairs and Bee had a ball playing 'knock knock' at the house front door...

There is lots of other things to do at Eureka! but much of it is too old for Bee, she likes running around the exhibits though and we spent some time doing that before we heard an announcement over the tannoy system for a puppet show taking place in the marquee outside. Brilliant! After the fun Bee had at the last puppet show we would definitely going to attend this one!

We head outside to the marquee and took our seats along the edge near to the front. There were mats set out on the floor in front of the stage for the children to sit on and I was pleased that Bee went and sat amongst them, not worried about being away from us. Her attention lasted for the first few minutes before she was up and wandering back to us looking for her 'baba', which I gave her and encouraged her to sit back down. She did and managed another few minutes of attention before she was back on her feet, wandering between us and the edge of the stage. Bee has no concept of appropriate behaviour in different situations and was quite happy to chatter to us at normal volume during the show. We got a couple of odd looks from parents but nothing I'm not used to. After the start of the show the the performer sat down on the edge of the stage with a giant box and distributed a puppet to each child, including Bee. I was concerned as it became clear that each child would have a turn on the stage making a story with their puppet. They were asked to think of a name, a job and a thing their puppet likes to do or eat. That level of pretend is way beyond Bee at the moment, she can't even say her own name and all her dolls are called 'baba' or 'doll'. Still, i was determined that (if she wanted to) she would join in like the other children. Why shouldn't she have a turn?

While the other children got up and participated I sat Bee on my knee and quietly explained to her what was going on and asked her if she'd like a turn. She seemed keen and so towards the end she was called up with another little girl. 

 I accompanied her as she needed support to climb on to the stage and to follow the instructions of the performer. I crouched down behind him as Bee took her place and tried to help guide her through. The performer made up a silly story based on the responses the little girl made and just made up Bee's part when she couldn't answer the questions he posed her. She didn't really understand what was happening and just held the puppet flopped over the curtain so the story became about the puppet fainting. It all only lasted 2 minutes or so but there was a nice moment at the end when the performer asked Bee's puppet to say 'thank you' to the little girl's puppet for helping her, to which Bee signed 'thank you' and got a clap. She was happy with that and I thanked the performer for his support and we re-took our places. What a proud Mama I was!

After the puppet show Bee wanted to go back to the shop so we headed inside and let her spend some more time there before it was time to find somewhere nice to have tea.

One of the things we did spend some time doing before we left was watching a video presentation at the start of the 'All About Me' section. It was presented by an automated robot with a video screen in it's tummy and Bee loved it. we must have watched that 2 minute video 50 times, over and over again while other families came and went. It didn't matter though, we were there for Bee to enjoy herself and if watching that robot made her happy then so be it.

My mum also spent some time outside with Bee while I went to take all the bags and the pram to the car. Eureka! have a fabulous outdoor zone with a giant sandpit (called the beach) and lots of toys and play equipment. My mum and Bee had a great time chasing the hula hoop she'd just been bought from the shop...
Bottom right is Bee's robot

After such a long day Bee was getting tired and we all were getting hungry so we got in the car, ready to head to a lovely canal-side restaurant that Foz and I had ate at last time we took Bee to Eureka!

We were all more than ready for a slap-up meal and Bee even had some leftover energy for a play on the park afterwards!

I took so many pictures during our day out yet one has emerged as my clear favourite. This is Bee 'hiding' during our game of hide and seek...

I feel she hasn't really got the idea yet...

Tuesday, 20 August 2013

School Shopping

This is the shopping trip I've been dreading: the trip to buy Bee's school uniform. It brought home just how close school is getting now and how fast the days are flying by. Summer seems to have gone in a flash. 

We made the trip into town to visit Warrington Schoolwear Center, which sells many of the local schools branded uniform. The idea was to get some branded things for there and then basics (like shirts) somewhere a bit cheaper.

Awkwardly Bee's new school has decided that their girls now need to wear a specific kilt-type skirt which you can only get direct from them or at Warrington Schoolwear Center. And they're £11. Each. I'm not very happy about this as to kit out a child for school is expensive as it is without needing to buy fancy (not to mention unnecessary) extras. I can get 2 grey pinafore dresses for £7 at Tesco.

I also noticed when going through the school uniform list that the PE kit (indoor & outdoor) has to be kept in a bag at the school for a entire term. The outdoor kit is a tracksuit with trainers. So do I have to buy her special trainers to be kept at school?

We bought the branded things we needed to: cardigan, t-shirt for P.E., bag and 2 elasticated ties then it was time for a treat at McDonalds before heading to Tesco for the remainder of her uniform. 

Saturday, 17 August 2013


Bee has found a new love - puppets!

Recently we attended a puppet show at the Play & Sensory Center and Bee was mesmerized! Methinks a certain something may be finding it's way into Bee's birthday gifts....

Sunday, 28 July 2013

Sad Goodbyes

Well it's finally happened. Bee has left nursery.

Bee started at Sandy Lane two years ago, still a baby and overwhelmed by everything about such a new environment. It took her a long time to settle and not cry at every drop-off. Yet despite the inauspicious beginning, she thrived there. The facilities and staff were incredible, as proved by there repeated 'outstanding' OFSTED reports. By the time her second year rolled around I couldn't drag her away. We've had so many wonderful times there, from farm trips to Sandy Lane's very own Forest School...

Sadly Foz had to work on Bee's last morning so my Mum and I collected her at the end of the nursery session. We'd prepared handmade gifts for all 11 of her teachers and it was an emotional goodbye with more than a few tears from all of us. Nursery gave us a lovely folder with lots of pictures and text about all the things Bee had done over the last two years, it's very special as parents don't get to see what their children get up to otherwise.

After leaving nursery my Mum and I took Bee to McDonalds for her favourite treat of chips! She's so spoilt!

I can't speak highly enough about Bee's nursery. The difference her from the baby she was to the little girl she is now is in large part down to their wonderful care and support for us a family.

Thank you Sandy Lane, we are eternally grateful. You have done a incredible job preparing my girl for the next stage in her life. We'll miss you and Bee misses you. Every time we drive past she says "mine" and signs 'nursery'.

School Visits

Since receiving confirmation that Bee will attend Bewsey Lodge Primary School in September she's been invited for three hour-long sessions to help her get to know her new classroom and teachers. I'd been a little worried about how Bee would cope without us in her new class but I needn't have been. 

Each time she's been excited on arrival and recognised her new teacher, Mrs J. She's left us at reception without a backwards glance and despite us waiting around for the full hour each time, not once has she needed us before her session had finished.

I'm thrilled that she likes her new teachers so much and seems very comfortable both with them and in the new classroom. My only concern is that currently an hour session is like a fun playtime for her. When September rolls around she'll be going from 9am-3pm. A huge leap.

 On the way home after the first of her 3 sessions (one a week) we visited the local park as the weather was beautiful.

Saturday, 27 July 2013

Holiday Book

We've booked our first family holiday for September of this year and I'm so very excited about it! It's Bee's gift for her 5th birthday and we're off to Peppa Pig World in Hampshire! It's in the New Forest, right down near the south coast and we're staying at Hoburne Bashley Holiday Park

We're only planning one day at Peppa Pig World (unless Bee really loves it) and have 4 other days to fill with fun and adventure. We're thinking maybe a car ferry over to the Isle of Wight or a visit to Beaulieu Motor Museum in honour of Bee's obsession with buses and trains, exploring the New Forest, maybe an animal park or farm, the seaside... there's going to be lots to do.

Since booking I've been worrying about how Bee would cope with the holiday. How do you explain to a 4-year-old with learning difficulties that you're staying away from home for a few days in a big box on legs? Or that for a few days she'll have to cope with a complete change to her normal routines? Bee always copes best with change when she's had some preparation so I decided to tell her about the holiday early. Of course the unforeseen problem with this has been balancing preparing Bee with her complete lack of understanding about things happening in the future. She's very excited about Peppa Pig World and asks me most mornings if we're going. Thankfully when I say "not today" the worst I get is a few whys? before she moves on!

To help with the preparation I thought some pictures would help so I emailed Hoburne Bashley and asked for a brochure that we could sit and look through together. Unfortunately when it arrived there were not many 'useable' pictures, just lots of information. I cut out the few I could use and got searching on Google images for generic pictures I could use to complement the few I had.

There was a lot of information I wanted to include about our holiday so there were two pages about where we would be staying, a page for Peppa Pig World, a couple of pages for activities we might do and a page for out trip on the way home.

Bee has loved sitting and sharing the book and I've found it a really helpful tool for talking about our holiday together.