and she laughed in her sleep

What a christmas. B has been in hospital since midday christmas day. She has been unwell since last saturday and not eating/drinking, vomiting, fever etc etc. I was scared to put her to bed christmas eve. Doctor admitted her christmas day morning and we have been there since. She has a bad infection and her body can't cope with it. She is now on IV fluids to get her hydrated and antibiotics to fight the infection.

right now she is sleeping. She feel asleep and then I heard a giggle in her sleep. That just made my tears dry up and my hope return.

I love you B. Please get well soon.

As it draws nearer, my thoughts are with my friends

Those whose children passed away in years past and those who have passed away in weeks past. I know that the first and every christmas is hard and you are in my thoughts; you, your families and your little ones for whom I will say my own way of praying for.

Wishing you a christmas that will be joyful in its own way and a lot of love for you and the ones you will miss.

xxxxxx

What causes the blips?

She had seven weeks without an observed prolonged seizure so we were hopeful the medication was working. Until monday night when she had a 5 minute unresponsive one followed by a morning of uckiness.

Hormones? tiredness? shape of things to come?

Wish someone would tell us

All's well that ends well

A day I was worried about but went swimmingly. The southern SK Xmas party. We had Santa visiting (bless him, he was a little poorly too) and everyone brought food and I managed to scrape some stuff together to give the parents a free raffle so everyone (except one kindly person!) got a gift. Fun, activities and catching up with old friends. B even came along for a bit. Didn't want to visit Santa though... Afterwards drove home, quick cuppa before driving all the way back to school (which is literally 10 minutes from where we were) to drop off a weepy B and therefore a weepy me. I am so tired its an understatement but I chose the career change which involves long days and night shifts so its my own fault! lol.

Today, B starts her new eating and drinking regime. Thickened drinks and hawk eyes on food. No thin liquids especially in food with mixed consistencies. I had trouble with the thought of this earlier last week. End of another era, beginning of the next. But if it keeps her safe we have to do it and I know its just par for the course. My adaptable daughter will cope...as long as her daily diet coke can be thickened ok..that's all she is really worried about..lol!

Another day..another challenge...bring it on...

Christmas Past-Times

A friend shared a clip of her 6 year old sons nativity play with me today and it got me thinking about a video I had taken of B when she was 5 at her first. She was mildly ataxic and it was the calm before the storm. I love these two clips and I remember them like yesterday. She was a sheep and I remember having real trouble finding her a "coat". She walks in not able to see where she is going! and sings her little heart out. I love it.

and added value - her fifth birthday two days before.

Pics from the weekend

Saturday, B's birthday started with her opening some presents. Absolute joy at getting a Troy from HSM birthday card (thank you Whsmith!) and her requested purple phone. Followed on with lunch with nan and her godparents and then a lovely walk in our nearby common woods. Afternoon completed by getting a tree and decorating it. The evening consisted of dinner at the Harvester where B loves Nachos and we were joined by M's parents.

A really lovely day.

and then she was 14

she nearly came today, 14 years ago. She came at 23.25 on the 6th. We were all determined (especially me) to get her out before midnight. A mop of black hair, a little wee thing of 6lb 2. I remember being so overwhelmed by her and then scared stiff when 2 hours later this little thing started hollering like anything and I had no clue what to do. Our first two years together were tough. I was on my own, although living with my wonderful mum who gave so much to us. There were times I thought I couldn't do it but I did. She was a beautiful baby and a beautiful toddler.

It felt like no sooner had she learnt to walk that her toddling soon became wobbly, The little girl with so much determination started to find things hard. Playgrounds became a huge fear for her, she hated to be off the floor as she must have felt like it was all moving. Walking down the street she would stumble and hurt herself so much. But in true B fashion she picked herself up and got on. No-one really felt much was wrong. But I did. I knew. When she was just 5, she became quickly very ataxic. Brain tumours were mentioned, MRI showed otherwise - other things happening - a potentially shrinking part of her brain. I was devastated but hopeful that it was not going to continue. They tested her for lots of infantile and childhood onset life threatening disorders. For 3 more years. When she was eight we got her diagnosis, unexpectedly. She had a label at last. A horrid, extremely rare label. My beautiful B would end up permenantly in a wheelchair, she would lose feeling and use of her limbs, and there was no clue on her life expectancy. and 6 years on, as things progress, she fights all the new battles that her condition brings her with fierceness and spirit. I fight all the other battles for things that her condition dictates she needs and between us we try to love and laugh as much as we can. We are a team and we are best friends. Last week we found out some bad news about her swallowing and today I live in more fear but yesterday she was 14. I am so thankful for that. I am so lucky to have her for 14 years. She has brought so much joy to my life. I would be lost without her.

Happy Birthday my wobbly pumpkin.

Happy Birthday my B

14 today! Unbelievable. Tomorrow I will write more. For now, this picture just sums up you. Your laughter and your smile. I love you...

Spot the difference

The birthday cake that B wanted for her birthday on saturday and one of our cats Mimi. I may feel a bit strange eating the cake. I have to be honest......

Apologies

If you are one of my readers with whom I should be getting in touch with. Life is manic at the moment. Placement means leaving the house at 6.30 and getting home at 9.15pm 3 or 4 days a week and then trying to sleep, do B and SK stuff and be with B and M the rest of the time. When I get home in the evening I am not good for anything but a ready made meal and an hour in front of the TV.

So this will last 10 days more then I have a break until early January. So if you don't hear from me regularly or or at all before then, I am thinking of you, it is just not possible to fit it all in.
much love
Rx

Going down the wrong way

After a horrid few months, B has been relatively well the past four weeks. No seizures since we increased her meds, her pressure sores on the underside of her heels healing nicely, the folliculitis on her back and chest has healed on her chest and her knee pain is less often therefore much better. Thursday she went for a videofluroscopy/swallow study. Mainly because she coughs alot when she is drinking or has dryish food..has been for quite a while. Her dysphagia specialist from school came and has said she also has co-ordination problems with her swallow..not uncommon with ataxias. I espected her to cough and them to say yes her swallow is altered but its ok to proceed as we have been. Well instead she didnt cough and silently aspirated (means it goes down her airway into her lungs rather than down into her stomach) on the first drink. They stopped it immediately and thickened it up and she didnt aspirate after.

Food wise we didnt really simulate what causes her issues because the barium liquid just made everything slicker. The outcome will be sent to me in a report but basically she appears to be silent aspirating but not majorly otherwise she would be getting chest infections (although I have been informed it is still as dangerous without the chest infections). However it may need some minor changes such as drinking thickened drinks or such like. She also appears to have issues with mixed consistencies. So something that has liquid and solid e.g cereal and milk, tablets and drink. This became evident whislt eating a piece of pineapple where the juice runs out first. So we may have to do something about that. Whether its a new thing I dont know but we have a baseline now. I am kinda dumbstruck by this to be honest. I didnt expect her to be silent aspirating, I kinda thought she was coughing it back.

Friday when i picked her up she complained her foot hurt. I looked at it and her left underside heel is developing under skin sores. the opposite foot to the last one. and her left foot was so red, hot and swollen whilst the left was freezing cold. this neuropathy thing does my head in. anyway according to school nurses, beth is having muscular contractions almmost like spasms which force her legs down into the base of her heels..so they arent pressure sores as such as rubbing, they are more like compression sores and not alot we can do about it with all the padding in the world (and beleive me she is well gel'd up) it still will have an impact....She was crying in bed over it friday night with pain

Just scared that its not going to be the disease that stops her standing anymore but these painful sores instead.

Wand - magic...? send it her way please.

The importance of being deputy head girl

It means you have to remember to go to the meetings with the head girl/boy and the headmaster. But apparently they are at a time which is silly. 1.30pm, which she asks "is that before lunch?" No, its after. But "2pm is better, is that before lunch?" No, that's after 1.30. Anyway she missed last time but made it this week.

Topics of discussion this week included the seriousness of the level of noise in the dining room but most importantly apparently that a boy has been calling another boy Carrot-top head.
Ok it isn't funny for the boy but when it comes out of my daughters mouth in the way she speaks, I found it very chuckling worthy.

Her final comments were - I am going to tell Mr D (the head) that I order him as deputy head girl to have our meetings at two o'clock.. She was joking of course and Ok you have to be there to appreciate it but I find it very endearing that because she cannot tell the time, everything has to be at an o'clock time and to her own timetable.

The best thing was, she said she didn't need to be reminded to go to the meeting today. Her teacher came to find her to remind her and she had already gone. She was really proud of herself for remembering because she misses so many things because she normally doesn't. I was very proud of her too!

(and yes she is home tonight as we have a hospital appointment tomorrow - swallow study - and its nice to have her home mid week)

B meets Holly

B met Holly Willoughby (of Xtra Factor/Dancing on Ice fame) at her hospice a couple of weeks ago. She sent through a signed photo this week which I have scanned. A dvd is due out soon with her on it too.

sorry for being quiet

I started my new nursing placement on monday and worked three 12 hour shifts this week. So not had much time to do anything but recover! I love it. Its a childrens neurology ward (brain tumours, shunts to drain excess brain fluid etc), an 8 bed ward, and also has some general medical cases if the other wards are full. Feeling quite nurseyfied now. A way to go yet but I can see that there is some hope I will know what I am doing in the end! (you will be pleased to read!).

B has not had a seizure this week which is when she would have usually as far as I am aware which is very good news. It means that her epilepsy medication is working. I am very thankful for that.

She has a swallow study next week to see how her swallow muscles are coping. Some of you know my concerns on her coughing when she drinks or eats and the risk of her aspirating into her lungs. She has been seen by a swallow specialist at school who says she has witnessed issues with her swallow co-ordination but thinks she isn't aspirating into her lungs which hopefully the swallow study will show. She is coming with me which is even better!

Right now I am preparing for 11 mums, 11 of my southern (and one welsh!) friends to come visit tomorrow. 11 who all have children with special needs and ALL of them need a break. We are going to go christmas shopping and in the evening out for an Italian. Then a few of them will be staying for a pyjama party :). Really looking forward to seeing them and missing those who cannot come.
Let the party begin....

Painting by hand

We went to the children's hospice for the past weekend. B had fun making some prints of her hands which were then placed on top of a christmas tree on a wall and she had a little sing song

and on the saturday evening we relaxed in the teenage den watching x-factor on one of their massive tv's and eating crisps and dips!

Another balloon

That is what LM's dad said to me today. Another balloon to be let go next year Robyn. He is referring to our balloon release at our charity annual event in memory of the children that have passed away . His 2 year old daughter with special needs died suddenly yesterday overnight. The second child in 5 days from our SK community. LM's parents organise the ball in aid of SK and other charities. They are wonderful wonderful people and I am just devastated for their loss.
We don't understand why so many of our gorgeous children are being taken at the moment. All we can do is just hold out our arms to their families.

D, A and T - in my thoughts today and always.
LM - rest in peace little one.

and I am so very scared.

Catch a glimpse of B on video

She is part of a video made my her hospice. We have the full version here which she appears in twice but can't upload that. The short one on the site, its on the bottom right at http://www.chasecare.org.uk and B's smiley face appears quickly near the end.Tissue alert!

Maybe a miracle? a chance at least!

all my love and thoughts with H tomorrow as she goes into hospital for possible treatment. We love you baby!
R, M and B xxx

thankful for small things

after 10 weeks, a period of mandatory hoisting, dressings, new boots, extra padding on the w/chair, pain etc etc we finally have a result...I am pleased to say that B's pressure sore on the underside of her heel is FINALLY getting better. It sounds like a tiny victory but believe me when I say that one small thing was life changing for her for too long.

Everything crossed it stays that way and no other of the little bu&&ers show up!

Walking in that room

Sometimes I wake and I do not hear the sound of B. She should be awake. These times I am struck with fear. I do not want to walk in that room, to find something I cannot face. I share this feeling with others I know who have poorly or children with complex medical needs. When one of our friend's child is taken this way as what has happened this week, it makes our fear seem much more real and our fear goes up a notch.

I do not know what I beleive in but I hope that someone will keep my girl and my friends children safe in their sleep. However if or when their time comes, I know that they will have many little friends who will welcome them and keep them safe wherever they are.

Rest in peace dear L

Today we found out that one of our longterm SK Members children, L, had passed away, very suddenly. To say we are devastated is an understatement. L had Retts Syndrome, but as far as we are aware was well at the time. It has shocked and upset all that knew her. I remember her as a child that loved to make noise, to be around her sisters and to hear her voice heard. She had her good times and her bad times.

My thoughts are with her parents and sisters today and always and for all of us who fear.

This candle is for her.

xxx

Brief update on B

She now has her Balder wheelchair back with extra padding on the foot plates and realigned to support her legs more in order to avoid future pressure sores. Her right knee is causing her severe intermittant pain so hopefully physio will sort that out. Her skin infection on her back has spread to her chest but the doctor wants to continue with treating with special body wash. Says it will take a long time to get better. The good news is that it isn't really irritating her. Her pressure sore on her right heel is still there but not got any worse. She now has bigger boots and she wears gel lined socks all the time. Hopefully in time it will go. She had pain in both her feet this weekend but it seems to have gone now and thankfully she is able to stand transfer again.

Our main concern is the seizures - she is now on 200mg a day Topiramate for them. We will wait to see if that makes a difference.

She loves her new hair style and is still smiling
x

Monty loves high school musical 2 (too!)

Happy Halloween

Today we went and did this.

Six inches off and she looks wonderful! I had mine cut to neck length.

and then we tried to make this:

it is supposed to be a bonfire cake (see the bonfire in the middle, the flames/fireworks and the catherine wheels)...we are proud of it, even if it's a bit sloppy/lopsided and I had no orange food colouring for the icing. First time i have made a cake in years and licking the bowl still has the same attraction...

We had a nice mum/daughter day today.

Challenge for you - things to make me laugh

In need of some chuckles, so please post in comments anything that you think may make me laugh or even smile!

but beauty does come in threes

My weekend in Switzerland

My god-daughter

Her sister
and the newest arrival

And aspiring to take after her Gotte?

I had alot of "plasters" put on this weekend :)

I would actually settle for bad things that come in threes

would be quite nice actually rather than in droves!

Lets pick the main three though from this week:

1) Some kind person takes £1100 out of my account without asking (half isnt actually money I have so now my account is a brighter shade of pink i.e. RED!)
2) Today I fall down the steps at university and have suspected broken thumb. Thankfully its just majorly swollen and is now strapped up...its my right hand...yes I am right handed. Lovely big sore hip too,
3) B had another seizure at school.

ok with my glass is rarely half full head on I can say
1) I will get it back in about 3-4 weeks hopefully. In the meantime I can live off my partner
2) It isn't broken and I get to take some painkillers that give me the same effect as lots of wine without having to pop a cork.
3) sorry, can't think of one for that...

hey not bad for one handed typing!

Losing one of our "family"

Yesterday we lost one of our special needs family. A child who suddenly got ill and has been fighting for a week to stay, with 100s of mums and dads across the UK willing him and giving him strength to fight for a bit longer. He decided it was time and now our community opens its arms further to virtually hold his parents and other loved ones.

We all feel it, for them, for us and for him.

Go play little man. It's ok.

Friday

A morning of paperwork - letter writing, SK stuff. Making a few phone calls where no-one is around which is hugely inconvenient to my well planned day - that throws that out!

I attempt to tidy the living room - how do i get so much paper to throw out? Where does it all come from?. Half of it seems to be because someone has decided I like children's catalogues, you know the pretty pink bedroom type ones. Well a) my child is 13 b) my child has special needs and can't use all those great fiddly things you put down there nor the lovely fairy castle bed c) how many different companies are there out there that seem to sell the same thing? and d) WHO? gave you my details in the first place. Please do thank them from me.

I go to Windsor to meet an old friend whom I haven't seen for ages. We had a catch up over coffee and a quick look in H&M (and I bought a skirt and top each for me and B) and Zara (in which she buys the most beautiful dress and I convince her that her knees do not look knobbly - they don't!) and then it was time for me to RUSH back to meet B's van due at 4. On way home, I ring school to find out how B has been. "Oh she has been great, she is here, do you want to speak to her?". What do you mean she is there? It is 15.25, she should be on her way home. 45 minutes later, it appears the transport company thought they didn't have to pick her up today. So she then had to wait for alternative transport. This is the umpteenth time since the beginning of term we have had transport issues.

I come home via the off-licence shops and admire the fact I can now see at least part of the table my computer is on.

Ah there is the dulcet sound of a large van approaching.....

finally she is home!

Edited to say: actually it wasn't her. It is now 18.07 and she is not home. Apparently though she is 10 minutes away. Over 2 hours later than she should be. Not a happy mummy here! Heads are rolling.....

How to tug at your mommy heartstrings in one easy step

An email from B from school.

I miss you
B

I miss you too baby

xxxxxxlove youxxxxxxx

Today was a better day

Uni was ok, the lectures were really interesting. Afterwards I got one of my presentations finished and spent 3 hours doing the other so its nearly done and felt much better for doing it. I revised by dictaphone for my exam and decided to start my cut down drinking again today.

So today was a good day

The Sleep EEG with no sleep

Today I took B to have her sleep EEG to see if we can get any hard evidence of the recent seizure developments. It consists of giving her enough sedation (melatonin) to knock her out sufficiently for them to capture what happens in her brain during sleep as her incidents tend to happen when she is exhausted.

But of course I should have known. The girl who at six had enough melatonin to knock out an adult and still wouldn't go to sleep, wouldn't today either. She dozed twice but got a pain in her knee both times that required repositioning (she is getting stiff knees very easily at the moment) and woke her up from her doze.

I very much doubt anything was caught. The technician said (and backing up what the Paed has said to us before) that sometimes nothing shows. Just recently a child whom the doctors felt very sure had epilepsy had their 5th EEG and finally they got something. All the others did not. Same with another little girl I know and the same with B. When we suspected just absence seizures, nothing..three EEGs before have shown nothing. Now there is more chance today's will because we have seen new types of seizure occurring and much more prolonged. But I very much doubt it.

Of course I don't want anything to show up but the fact its very likely she is having them, I would like some brain evidence, so we can say once and for all. I pushed the technician to tell me if she saw anything but she said she couldn't. I will have to wait for B's doctor to call me.

Anyway they finished, the doctor came in to make sure she was fit to go home. He said it has never happened before that someone hasn't slept on the melatonin and he wouldn't be surprised if she sparked out in the van on the way home.

nope....he just doesn't know her very well does he...
She is now playing the PlayStation. Right as rain...

Whatever the results it is agreed that we will medicate on low levels of epilepsy medication and see what happens.

Something to make me (and all those who need it!) feel better

From Lipstick Jungle....
IT'S OK TO LOOK!

All work and no play makes Robyn a dull girl..

for next week I have to prepare a 7 minute presentation on health factors that influence an adolescents growth and development, complete a 5 minute presentation on a summary of the 1992 white paper - Health of the Nation, revise over 200 slides for a mock exam on embroyology, growth and development for pre-school, school age and adolescence, attachment and bonding etc etc AND make a toy for a hospital staying adolescent and a 250 word summary on how it applies and incorporates a psychologist theory.

and go back and forth to school for various appts to sort B out.

best cork up the wine then and keep level headed for the next 8 days. mmmmm not easy when your emotions are running wild and your brain is dreaming every night about an annual event that occurs every august....i..e its just happened! why am i worrying about next years! its subconcious i promise!

padded cell may be good idea....as long as there are cockles, a good chablis and a decent fictional novel to lose myself in..

failing that under the duvet is a great hiding place.

Is there an art to hoisting?

I have hoisted B more times this weekend than I have in her entire non ambulant part of her life. She isn't allowed to stand transfer right now because of her pressure sores on the underside of her heel. Interesting it has been. What usually takes 1 minute now takes 15 and my back is killing me (Yes I know, it means I have not been doing it the way I have been taught in Uni but hey this is real life now).

But worst of all, is there a secret behind getting the hoist sling to fit perfectly each time? Its good that B has a sense of humour. I cannot tell you how many times this weekend a hanging loop has got caught and picked up a commode handle, a wheelchair armrest etc etc thus hoisting not only one young lady but the thing she is sitting on also. We did laugh though.

A couple of times she has been almost horizontal in her sling. Other times in a nice sitting position. Once we went up and down several times when the sling legs were digging a bit too deeply into her thighs. eek! quickly rectifed.

and how tempting has it been to say, oh just quickly shuffle round on your feet.......VERY! We had to once because she needed to lie on the sofa as she had been vomiting today. The sofa is to the floor so there is no way of getting the mobile hoist legs underneath it to do it. So we did a quick stand and shuffle and lay down. Had to be done. 9/10 times hoisting is gonna help surely.

So B and I are now expert hoisters...a real team. Just need some extra hours in the day to accommodate it now!

Old hoisty pic:

Top to toe? nope Top to Paw

sttreetttchedddd outttttttttttt

11 years of watching

can be slightly draining. Watching for change, the next thing, debating normal versus possible abnormal. Picking up the fallen child, picking up the many pieces, trying to fit those pieces continually into one everlasting puzzle.

but even then, even with some concerns on minor activity, I never thought I would need to buy this:

but it seems I do. Well they think I do. The outcome of this weeks Paediatrician appointment who had conversed with the Neurologist is that the activity last week and during august may be seizures, they may not but the description sounds like they are. Why now? They don't know. Yes her underlying condition makes her more subseptible but sometimes they just don't know why. She will have a sleep eeg next friday but even if it shows nothing which is not uncommon even with activity they will treat for it. So now her new medications previously for migraine relief are being gradually upped to epilepsy levels.

Good right? It means they will be treated, be kept under control. And if not, we raise the levels again. Fantastic. Great. Whoopy doo.

what it means is something else wrong with my baby, something we didn't mentally prepare for and something else we have to watch for, pick the pieces from and find their rightful place in her puzzle.

Some of you will not know what was said, as above, on Wednesday because I haven't shared with my family or non SK friends yet because I just haven't been able to get my head there. I have kept myself full-time busy since then. Now I have a couple of hours to cry and grieve a bit over it because it is breaking my heart but not too much, I just can't go there and I just can't talk about it with people right now.

I just hope the side-effects from the medications do not strip away her beautiful funny personality.

In the meantime, I am concentrating on another bit of her puzzle. Her increasing pressure sores on her feet. Let's get rid of them because that is the ONE thing we can.

Crazy pets.

Sent to me by my big sis to make me smile

THIS IS WHAT A BAD MOOD LOOKS LIKE

THIS IS WHAT TIRED LOOKS LIKE

THIS IS WHAT SORRY LOOKS LIKE

Hey good looking

just keep yourself safe ok? Beat off those nasties, tell them to go away and remember that we love you; our beautiful girl.

Laughter

IS the best medicine.

On a lighter note...

Just found out that Beth's hospice - Chase in Guildford - have given us 3 tickets to see Disney on Ice's Finding Nemo in October half term.

YEAH! What fun!

B and I will go with her Godmother, Julie, who is a big kid too :)

Is someone trying to punish us?

I think its very ironic that on International Ataxia Awareness day I find out that B has had more seizures. Tuesday apparently. Two lots of "absence" lasting 5 and 15 minutes...15 minutes is a LONG time not to respond to someone asking you if you are ok, trying to get your attention...30 minutes and you are calling an ambulance....

what the hell is going on.....

leave her alone...whatever it is...its not going to get her, I wont let it.

25th September - International Ataxia Awareness Day

Photo and video editing at www.OneTrueMedia.com

I am writing this tonight because I am working a 12 hour shift tomorrow at the hospital so will unlikely get a chance to.

When B was born over 13 years ago, I would never have dreamt that B would end up with an extremely rare condition called Ataxia Oculomotor Apraxia 1. When she was 3, I have never even heard of ataxia. There are a handful of children in the UK with her condition. A few hundred in the world.

Ataxia means "problems with balance/co-ordination" and it is a symptom. http://www.nhsdirect.nhs.uk/articles/article.aspx?articleId=2292&sectionId=10

It is not a condition on its own. There are many types. Some children are born with a condition where ataxia is a feature and it doesn't get worse. Others get a condition, during childhood, such as B that is generally progressive in nature. Some are pure ataxias, others are part of a wider disease. Some people get an ataxic condition as an adult. Most are genetically inherited, it used to be mostly recessive in childhood, mainly dominantly in adulthood but nowadays its a mixed bag. B's particular type causes the cerebellum to shrink during early childhood causing her very wobbly body, causes her eyes to not move correctly and then due to a protein deficiency the DNA repair in her nervous system stops working so gradually she has lost/will lose complete sensory feeling and motor use between her brain and her arms and legs.

International Ataxia Awareness Day strives to raise awareness of all of this and to make known the amount of research that goes into helping those with progressive ataxias and to find reasons behind these faulty genes.

For more information on Ataxia conditions and the charities that support people like my B, go to
http://www.ataxia.org.uk/, http://www.atsociety.org.uk/ or http://www.ataxia.org/

Thanks for reading.

What day is it? and do you know how much I love you?

I really thought it was monday.....it isnt is it?

I am starting to get used to my B not being around in the week. I miss her so much, the past two weeks have been really hard but I know she is ok...as long as I do not hear from her, I know she is ok. I just have to get used to the emptiness of the house when she is not here.

As a family, our sunday was wonderful. As a family, we do laugh. She laughs, we laugh. I love them both very much. My beautiful B and my wonderful M.

It really is.....

The Cat's Whiskers

Today the 3 of us went to RHS Wisley. We have lived in this area for 7 years and we have never visited. It was a beautiful day and the gardens are just wonderful. They had a sculpture exhibition on too.....Some highlights:

The hungry carp

The Mesh Muse

Giant rhubarb - imagine the crumble!

Ahhhhh a pumpkin patch

this amazing sculpture - from the front/side

and then from the back

Wolf - Mother and Child

and the best display of all