That was the year that was….

 

Pretty difficult to say the least!

I hope everybody reading this had a good 2019 and I wish you all a very Happy New Year.

There were high’s as well as low’s to 2019 for us,  which is at least a good thing.

Our Social Enterprise, Spectrum of Misconception did really well selling autism awareness Christmas cards.

The very lovely Malini Croxson who is an artist from Hertford did the illustrations for us, they were warm and beautiful images which conveyed a powerful message regarding autism as well as being Christmas in an image. Mal was wonderful to work with and we were thrilled with the end result.

We had the cards by late September so were ready with plenty of time to start selling, we had some of the cards which Laura Dixon did for us last year left so sold them too.

The cards flew and once again we are very grateful to everybody who ordered and sent a message with their card regarding autism.

Zach did brilliantly, he is involved with putting the orders together, making up the boxes, packaging the cards, and then taking them to the post office.

We used a small local post office in Sele Farm and the staff were very helpful and quickly got to know Zach.

Around the second week in December ‘Mind the Gap’ the shop and café at Hertford North Station started selling the cards for us. Zach’s support team often drop in there on their way to and from work so have good banter with the guys there. We were really grateful for this extra exposure and hope we can get them in there earlier next year.

We have sold 2500 cards this year which is brilliant in just our second year. Zach once again stepped up to the challenge and with the expert support from his team did everything that was asked of him.

An absolutely massive thank you to all who have supported us and continue to do so, you are the kindest and the best.

Zach really enjoyed taking around cards and a small gift to those places he visits regularly. One for his hairdresser, Bobbie at Cut Loose, the security guard at Tesco’s Hertford, the guys at Mind the Gap, and for staff at trampolining and golf that he goes to very regularly.

He then chose me a beautiful bunch of flowers from Tesco and came home with a beaming smile on his face as he thrust them into my hand. There was also a Christmas card (Spectrum of Misconception of course) signed by him, it was lovely.

So that was all great and to be honest a very welcome distraction from other things.

My beautiful Mother passed away in September, she fell in August 2018, went into hospital with a broken wrist and never walked again (She had walked half a mile the day before the fall).

The care at the hospital was pitiful and I just had to get her out of there so she went to a local nursing home that my Father could get to every day. Unfortunately they didn’t walk her either and despite regular physio and me and other family members attempting to get her moving she spent the vast majority of her days sitting in a wheelchair which was only made for occasional use.

I didn’t miss many days visiting in the year she was at the home. I worried for her welfare. Boring days spent sitting in a wheelchair wasn’t what she was used to, Mum loved being around people who were chatty and cheerful. Some were, but plenty weren’t.

I went to the residents meetings to ask about trips out, activities and so on. There was a shiny brand new mini bus parked outside but I think she went out twice. I couldn’t get her into the car anymore because she was panicking when mobilising being so used to the wheelchair

Dad visited almost every day, they would sometimes sit and hold hands and nod off to sleep just as they had at home.

While Mum was well and the weather was fine we would walk down the lane and chat about the birds and flowers. On a Friday I was her only visitor and we would do something like play a game, do a jigsaw or I would give her a manicure or other beauty treatment. Sometimes we would listen and sing to music, sometimes dance with me holding her hands and moving the wheelchair in time to the music.

I will always treasure all the time I had with my Mum, she was 95 and I feel so lucky to have had so much time with her in my life. Mum was always so appreciative and enjoyed and got joy from such simple things, her face would light up when she saw me arrive.

Mum stopped eating, she had been suffering terribly with gingivitis (bleeding and inflamed gums caused by bacteria in the mouth, caused by not having teeth cleaned!) I was doing thorough mouth care every time I went in,  a very good friend who is a Dentist had visited and told staff what they needed to do but it didn’t improve.

She was losing lots of weight and the GP told me that Mum was dying, which I sadly knew but it was still hard to hear. The GP told me this with Mum in the same room, I winched in pain for Mum being present to hear this. Hearing is the very last thing to go when somebody is very unwell and it was both unprofessional and clumsy of the GP to do this.

The next two days were the brightest Mum had been in weeks and I like to think it was a middle finger from her to the GP. We talked and laughed and enjoyed the Summer weather.

From there things went downhill though and I was spending most of every day by Mum’s side doing what I could to make sure she was comfortable.

It was a terrible struggle for me, as a nurse who has spoken up for so many patients over the years, making sure they had the care they deserved and were pain free to be having to do it for my own Mother.

My heart is incredibly heavy in the knowledge that the expertise of care that was needed was not given. Care Homes must not be afraid to use end of life medication to ensure comfort and peace for those in their care and their families. They must also ensure that carers are aware of the need for extra care to be given to palliative patients.

Mum passed away on the 26th of September, just over two weeks after her 95th Birthday. In the final week of her life I know, that Mum knew I was with her, she would still put an arm around my neck when I kissed her and also smile at me right up until the morning of the day she died.

I am finding that I am struggling more now than I did when she first died, the longer I go without being able to put my arms around her, the first Christmas, and now a year in which she has not lived but I am sure time will heal and I will find ways to keep busy and keep smiling as Mum would.

Elderly care, since I have been involved in some capacity, which is now 36 years (scarily) has never been what it should be. However I am increasingly upset and concerned when I visit patients who have had a stay in hospital and have not been got out of bed at all because there isn’t time. Short cuts are constantly being taken with some of the most vulnerable members of our society. It is, as it always has been the people who are least able to speak up for themselves but these people deserve respect and care just as the rest of us do.

They haven’t always been elderly, they have lived and worked, raised a family, travelled and some including my Mum been in a World War. They are people, someone’s Mother, Father, daughter or son.

The other big change is that after 11 years of volunteering with the charity Mudlarks I have for a number of reasons finished. I have enjoyed almost all my time doing things with and for the charity and the way it has grown over the time it has been running is amazing. I miss the team I worked with at the café and being part of that but will move onto pastures new, I am not sure which pastures yet but I am sure I will find something! I wish Mudlarks ongoing success, the café which I loved so much is moving to a new building shortly and will only improve I am sure.

So all that is left is for me to apologise for my sombre post, I hope I haven’t dampened your spirits too much. I know that my spirits will lift once I have my new goals and interests worked out.

In memory of my wonderful and incredible Mother, Peggy Margaret Bruton 1924-2019, never to be forgotten.

 

 

 

 

That was the year that was….

 

Pretty difficult to say the least!

I hope everybody reading this had a good 2019 and I wish you all a very Happy New Year.

There were high’s as well as low’s to 2019 for us,  which is at least a good thing.

Our Social Enterprise, Spectrum of Misconception did really well selling autism awareness Christmas cards.

The very lovely Malini Croxson who is an artist from Hertford did the illustrations for us, they were warm and beautiful images which conveyed a powerful message regarding autism as well as being Christmas in an image. Mal was wonderful to work with and we were thrilled with the end result.

We had the cards by late September so were ready with plenty of time to start selling, we had some of the cards which Laura Dixon did for us last year left so sold them too.

The cards flew and once again we are very grateful to everybody who ordered and sent a message with their card regarding autism.

Zach did brilliantly, he is involved with putting the orders together, making up the boxes, packaging the cards, and then taking them to the post office.

We used a small local post office in Sele Farm and the staff were very helpful and quickly got to know Zach.

Around the second week in December ‘Mind the Gap’ the shop and café at Hertford North Station started selling the cards for us. Zach’s support team often drop in there on their way to and from work so have good banter with the guys there. We were really grateful for this extra exposure and hope we can get them in there earlier next year.

We have sold 2500 cards this year which is brilliant in just our second year. Zach once again stepped up to the challenge and with the expert support from his team did everything that was asked of him.

An absolutely massive thank you to all who have supported us and continue to do so, you are the kindest and the best.

Zach really enjoyed taking around cards and a small gift to those places he visits regularly. One for his hairdresser, Bobbie at Cut Loose, the security guard at Tesco’s Hertford, the guys at Mind the Gap, and for staff at trampolining and golf that he goes to very regularly.

He then chose me a beautiful bunch of flowers from Tesco and came home with a beaming smile on his face as he thrust them into my hand. There was also a Christmas card (Spectrum of Misconception of course) signed by him, it was lovely.

So that was all great and to be honest a very welcome distraction from other things.

My beautiful Mother passed away in September, she fell in August 2018, went into hospital with a broken wrist and never walked again (She had walked half a mile the day before the fall).

The care at the hospital was pitiful and I just had to get her out of there so she went to a local nursing home that my Father could get to every day. Unfortunately they didn’t walk her either and despite regular physio and me and other family members attempting to get her moving she spent the vast majority of her days sitting in a wheelchair which was only made for occasional use.

I didn’t miss many days visiting in the year she was at the home. I worried for her welfare. Boring days spent sitting in a wheelchair wasn’t what she was used to, Mum loved being around people who were chatty and cheerful. Some were, but plenty weren’t.

I went to the residents meetings to ask about trips out, activities and so on. There was a shiny brand new mini bus parked outside but I think she went out twice. I couldn’t get her into the car anymore because she was panicking when mobilising being so used to the wheelchair

Dad visited almost every day, they would sometimes sit and hold hands and nod off to sleep just as they had at home.

While Mum was well and the weather was fine we would walk down the lane and chat about the birds and flowers. On a Friday I was her only visitor and we would do something like play a game, do a jigsaw or I would give her a manicure or other beauty treatment. Sometimes we would listen and sing to music, sometimes dance with me holding her hands and moving the wheelchair in time to the music.

I will always treasure all the time I had with my Mum, she was 95 and I feel so lucky to have had so much time with her in my life. Mum was always so appreciative and enjoyed and got joy from such simple things, her face would light up when she saw me arrive.

Mum stopped eating, she had been suffering terribly with gingivitis (bleeding and inflamed gums caused by bacteria in the mouth, caused by not having teeth cleaned!) I was doing thorough mouth care every time I went in,  a very good friend who is a Dentist had visited and told staff what they needed to do but it didn’t improve.

She was losing lots of weight and the GP told me that Mum was dying, which I sadly knew but it was still hard to hear. The GP told me this with Mum in the same room, I winched in pain for Mum being present to hear this. Hearing is the very last thing to go when somebody is very unwell and it was both unprofessional and clumsy of the GP to do this.

The next two days were the brightest Mum had been in weeks and I like to think it was a middle finger from her to the GP. We talked and laughed and enjoyed the Summer weather.

From there things went downhill though and I was spending most of every day by Mum’s side doing what I could to make sure she was comfortable.

It was a terrible struggle for me, as a nurse who has spoken up for so many patients over the years, making sure they had the care they deserved and were pain free to be having to do it for my own Mother.

My heart is incredibly heavy in the knowledge that the expertise of care that was needed was not given. Care Homes must not be afraid to use end of life medication to ensure comfort and peace for those in their care and their families. They must also ensure that carers are aware of the need for extra care to be given to palliative patients.

Mum passed away on the 26th of September, just over two weeks after her 95th Birthday. In the final week of her life I know, that Mum knew I was with her, she would still put an arm around my neck when I kissed her and also smile at me right up until the morning of the day she died.

I am finding that I am struggling more now than I did when she first died, the longer I go without being able to put my arms around her, the first Christmas, and now a year in which she has not lived but I am sure time will heal and I will find ways to keep busy and keep smiling as Mum would.

Elderly care, since I have been involved in some capacity, which is now 36 years (scarily) has never been what it should be. However I am increasingly upset and concerned when I visit patients who have had a stay in hospital and have not been got out of bed at all because there isn’t time. Short cuts are constantly being taken with some of the most vulnerable members of our society. It is, as it always has been the people who are least able to speak up for themselves but these people deserve respect and care just as the rest of us do.

They haven’t always been elderly, they have lived and worked, raised a family, travelled and some including my Mum been in a World War. They are people, someone’s Mother, Father, daughter or son.

The other big change is that after 11 years of volunteering with the charity Mudlarks I have for a number of reasons finished. I have enjoyed almost all my time doing things with and for the charity and the way it has grown over the time it has been running is amazing. I miss the team I worked with at the café and being part of that but will move onto pastures new, I am not sure which pastures yet but I am sure I will find something! I wish Mudlarks ongoing success, the café which I loved so much is moving to a new building shortly and will only improve I am sure.

So all that is left is for me to apologise for my sombre post, I hope I haven’t dampened your spirits too much. I know that my spirits will lift once I have my new goals and interests worked out.

In memory of my wonderful and incredible Mother, Peggy Margaret Bruton 1924-2019, never to be forgotten.

 

 

 

 

Looking back, keep moving forward.

Saturday was miserable, rain, rain, and more rain. I decided to go into our loft and have a sort out, just the kind of job to be saved for a rainy day.

I found many things I had forgotten that we had, many of which should have been thrown away without actually ever making their way to the loft.

Anyway I started sorting, charity shop and bin.

I came across a file which was full of information about Zach going back to when he was first diagnosed with autism at 2 years 8 months.

I decided it was time to clear some of this stuff out, we just don’t need it anymore. I was looking through to make sure that I didn’t throw away anything which we may want to refer back to. What I read made memories come rushing back of some really difficult times, things which I knew were being done to my son and was powerless to stop.

Zach’s first school was a local Severe Learning Disability school. It was the choice! The only school available.

The nursery at this school was such a loving, nurturing environment, the staff were so professional and keen to help the children.

Things quickly changed when Zach left the nursery. We were investing a lot of money in PECS ‘Picture Exchange Communication System’ to help Zach to communicate. He was very quick to pick it up and extremely capable.

School didn’t seem to be using it with the exception of snack time, imagine if the only communication efforts you could make were to ask for food and drink. It is tokenistic at best.

Despite me working hard to have a good relationship with school I was frustrated that more was not being done.

Zach spent some time in the autism base where he seemed to be happy but when he left the base things very quickly went down hill at an amazingly fast speed.

We limped along, I looked at other schools, I wanted Zach to enjoy school and to learn, I didn’t feel that was happening. He would melt down almost every evening when he arrived home having been trying to hold it together all day.

I approached education about him moving school but was told the school were meeting his statemented needs, I didn’t feel they were.

I wished I hadn’t read some of this stuff on Saturday, the memories are some which I did not wish to revisit, but at the same time having watched the recent Panorama programme about the systemic abuse at Whorlton Hall in Durham it is so easy to see how those who have autism and complex needs end up being sectioned and sentenced to a life of frustration, anger and disappointment.

The document I found which hit me hardest was a report which was written following Zach coming home with marks and bruises on his torso, front and back and finger bruises on his inner arms. Zach was 10 years old then, he was a tiny boy at 10. The report made me feel heartbroken and intensely angry at the same time.

Zach’s crimes that day included trying to take instruments from a box in the music lesson, he was told to sit down, he did that for 30 minutes! That is a very long time for Zach and he then got up and returned to the instruments. After sitting for 30 minutes Zach deserved a massive reward, but no he was repeatedly told to sit down again and then someone held his school shirt to keep him on the chair. Staff seemed surprised that Zach’s reaction was that he began to aggress to staff. He had done what he was asked to do but that wasn’t enough, there was no positive reinforcement, no verbal praise just an expectation that he would continue to comply with no reward.

He was then restrained.

The day continued in a similar vein, reading it is hard, knowing that my boy was reaching out to staff at the school, trying to build relationships and all his efforts were rebuffed.

The day was full of sitting, assembly, music, then an achievement assembly. He was restrained again in achievement assembly after becoming unsettled. Allowed out into the playground where he wanted to take his school shirt off, he was repeatedly told he must wear his shirt, then allowed to take it off for 10 seconds and was then told to put it back on! All these mixed messages would confuse most people, imagine trying to comply when the message is so unclear.

He was then taken back into assembly and tried to take his shirt off again, was taken out again, then back in, then back out!

When the car crash of a day was at it’s end Zach was led to the transport by two staff who were restraining him.

At the end of the report it says that his mood had not been good all day….which was surely no surprise to anyone.

I still remember that day, he was happy to be home and went outside to the trampoline. It was a boiling hot day and he took his shirt off and I saw his little body marked and bruised and couldn’t quite believe what I was seeing.

We should have called the police, it should have gone straight to safe guarding but I phoned the school and was told by the Headteacher that Zach had, had a very difficult day….she was telling me.

The incident was heard at a County Council pre-safeguarding hearing. The Head Teacher was invited to explain, she apparently claimed all the injuries were inline with what you would expect when using that method of restraint. They accepted this despite it being totally inaccurate. Neither Zach or I were invited.

The next morning the transport arrived and I opened the door to take Zach down to it and he shot off as fast as he could, running up the road away from the school bus. I kept him at home, I just couldn’t bear to put him through another day at that school.

Zach did go back to school after this incident but not for long, we were fortunately near the end of term and in September the Head temporarily excluded him very shortly after his return, she eventually permanently excluded him, much to my relief.

I am probably a nightmare parent, I will fight for my son to receive the correct support, in the best environment possible. I will aim high for him to live a happy life where he is treated with respect and given the dignity we all deserve.

I knew that the way the school had excluded Zach was unlawful, I knew that they hadn’t been complying with his statement and I knew that they hadn’t followed correct procedures to try to help Zach within the school.

There were autism experts available to give the school guidance but the school would not reach out to those experts. The school was using Teaching Assistants as teachers, young people straight out of University. The school just didn’t understand autism and complex needs or that functional assessments and positive rewards are needed.

The school had a battle of wills going on with a 10 year old boy, they wanted to control Zach and he didn’t want them to. They took away his only method of communication, his PECS book because they said he was using it to gain control!

Can you imagine having your voice taken away as there was a danger you might ask for what you wanted?

Zach did not learn anything positive at that school, the wonderful work the Nursery team put in was quickly forgotten. What Zach learnt were great avoidance techniques, how to get out of doing something he didn’t want to do.

The school sent so many mixed messages it must have been hard to understand what it was that he was actually meant to be doing.

We appealed against the exclusion, which went before an independent panel. The panel found the exclusion unlawful, they found the school had failed Zach in many areas while he attended. We asked that he was not reinstated even if the extra support was put in place.

Since Zach’s exclusion in 2008 a number of other young people have been excluded from the same school, all have autism and complex needs. The school clearly learned nothing from failing Zach, all these young people deserved to be listened to, to be allowed to communicate and grow and learn.

I suppose I felt the need to write this post after watching the panorama programme as the behaviour of the staff at this school was inflammatory to Zach. The school totally and utterly refused to believe that they were in anyway implicated in the way in which Zach behaved.

I have kept these records, they are a reminder of why we fight with everything we have to make sure that Zach is continuing to learn, to live a good and happy life and allowed to express himself.

Positive Behaviour Support is teaching Zach better ways to communicate his likes and dislikes and to give him choice. Zach’s team fully recognise that he is intelligent and needs to continue to learn and acquire new skills as we all do, we just need to be given the right opportunities to allow that to happen.

 

 

What Christmas means to me…

Christmas is probably not for most parents with a child who has autism, quite what we thought it would be.

As a child I loved Christmas, my Mum always used to buy us the most wonderful and unusual presents and I can remember the thrill of opening them on Christmas morning. I loved the stocking fillers my Dad found in Covent Garden and Neal Street, I loved Christmas dinner and all the family being together, seeing friends and that general feeling of goodwill to all men, it was a happy time.

As I grew older through my late teens and early twenties the meaning of Christmas was lost, it passed in a haze of over eating, alcohol and hangovers! (I guess (and hope) I’m not unusual in this!) My parents moved to Spain when I was in my very early twenties and we no longer had a family home in this country which meant that Christmas was no longer a family event, we did see each other but it certainly changed things.

And so in my early thirties having my beautiful baby those memories and the magic of Christmas came back and I wanted Zach to experience the happy times I had as a child.

I probably went over the top (some might say I always do!) but I made the house look beautiful, the tree was big and covered in pretty trinkets and baubles and Zach’s pile of presents was like a small mountain. My disappointment at Zach’s lack of reaction at his first Christmas was probably far less than I felt the following year and the year after that….

All those carefully chosen presents and the hope that this year Zach may rush downstairs with excitement etched on his face in anticipation of  the gifts he was going to receive and tear the paper off them and play and engage with the treasures he found. It would be fair to say that this has never happened. Obviously the disappointment that this never happened was mine and John’s, Zach wasn’t bothered about presents especially in the early years. In those years our disappointment was huge, it became more and more difficult to find presents that Zach might just like, it was usually very hit and miss and I found myself spending more and more in desperation that he may actually like something!

As the years have gone by we have learnt a lot about Zach (obviously) and what Christmas means to Zach. Although Zach does now like opening presents it usually takes him well into the New Year to finish opening his, this year he didn’t even look into the big red sack which holds his bounty. I did manage though to persuade him to open two presents yesterday 🙂 he was vaguely interested. We realise now that what he really likes are all the little stocking fillers, and although I usually do spend a small fortune we don’t need to. I am going to see if I can get him to open a couple more presents later today.

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Christmas certainly hasn’t always been an easy time of year for us and we have still in recent years had tricky festive periods which have certainly not made us feel festive at all.

Christmas has become possibly one of Zach’s favourite times of year. He loves seeing the decorations going up, not because of the sparkles and shine but I think because it signals the start of a time when we are all relaxed and happy and spend quality time together without having to rush off to work or other appointments, he is simply happy for us to all be together. He enjoys seeing family and friends, a room full of people laughing, chattering and smiling. Zach loves people who smile and are happy, it doesn’t matter what time of the year it is, this is something which makes him very happy.

As a result of Zach’s love of Christmas, even though it has not been what we expected John and I love Christmas. It is a precious time and for all the right reasons.

Christmas for many people who have autism is a terrible time of year. For those who live their lives bound by routine, find it very difficult to socialise and dislike surprises it is very difficult. People with autism often have much heightened senses and so the lights and noise at Christmas can become over whelming to them causing sensory overload, resulting in meltdowns, aggression and more. Some families just do not celebrate Christmas so stringent are the demands of their young persons autism. It can be a time when the different lives we lead are even more pronounced and it can be a very miserable and sad time.

I often think that there is much that we ‘neuro-typical’ types can learn from people who have autism. Material possessions are completely unimportant and although Zach loves technology he isn’t bothered about whether his current tablet or computer is the one with the highest definition, pixels, the colour or cost. He forgives instantly and loves unconditionally. He shows incredible patience when he is trying to communicate what he needs or wants. He is content with so little, just happiness, smiles, family and time.

So for us as a family, Christmas is a very special time. We have changed our expectations (plus Zach is of course now 19) and we know that the presents are way down the list when it comes to why Zach loves this time of year. We still buy presents for Zach, but we know that it will take him a while to get round to opening them, some will be hits and others will be complete misses! But that doesn’t matter, his contentment at this time of year is something money can’t buy and it makes us feel the same way and count our blessings.

 

 

Still stumbling through the woods..

After a long period with no blog post from me, due to despair and general exhaustion bought about by the difficulties of trying to beat the system I would like to be able to tell you all that we are out of the woods however…..

We have funding until April but have received notice on Scott House! Mudlarks have used the wonderful Scott House for the last three years as a base and it has been a brilliant base. We have had many events there both in the house and in the beautiful garden but the Landlord has sold it to a developer and we need to be out by early February.

We have worked so hard to make the rooms we have at Scott House to be a great environment for Zach to learn and relax in and it feels rather as though we have just got it as it needed to be and we need to be on the move…however we are very grateful to Mudlarks for giving us the space and we now know that what we have set up works, we just need to find another space for it to work in!

If anybody can think of a suitable space please let me know, we need a space close to a main line station, and close to the community as it is vital for Zach to continue to be able to access it. Our budget is very small, but if you have any ideas please let me know.

Mudlarks will also need a new base, preferably with storage, parking and accessible. We would love to share a building with Mudlarks again but if you know of anywhere which may be suitable for them please also let me know.

In other news a friend and I have started a monthly disco for young people with additional needs. We have called it ‘Zambo Dance Nights’ and it is being held at Hertford Theatre, The Wash, Hertford SG14 1PS. The room we have is perfect for our young people, it is a large space with glass windows looking out onto the rushing water of the river Beane going through the weir, so very sensory.

zambo-dance-nights-002

We have held two so far and they have both been great nights. One of the things I am really enjoying is the unbridled enjoyment on all the young peoples faces, nobody is bothered whether they look cool or not and that includes the parents and support workers :p

Bradley Clark who goes into Scott House every Tuesday to do DJ’ing with Zach has been providing the music and lights which every one has enjoyed. We have use of the theatre foyer which is a nice area and the bar is open for refreshments.

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Our next event is:-

The Zambo Christmas Special

21st December 2016

7.30-9.30

£5 entrance and support/parents go free

web address is http://zambodance.wixsite.com/zambodancenights

It will be a great night with loads of cheesy Christmas tunes! If you can make it please let me know, we do have a limit on the room so if your name is on the list you are definitely coming in.

Here’s hoping someone knows of somewhere wonderful waiting to have lots of life breathed into it! 🙂