Goodbye Childhood Hero

It's been a long time.  I have ummed and ahhhed about the whole blog thing for the last 18 months or more. It's all been a bit chaotic, but I feel compelled to pick it up all over again.  I kind of miss it.  And I know a few of you (just a few) have missed me too, I know this because you keep asking me if I am writing again. So here I am.

As we all know, ok maybe you don't ALL know, in fact, maybe none of you know, but anyway, my absolute, 100%, favourite actor died earlier this week.  Robin Williams did not just have one stroke to his brush.  He did a bit of everything, and I can honestly, hand on heart say he did it all very well.  He really did have a go at everything, and gave it his all.  He entertained me as a child with Mrs Doubtfire, Flubber, Toys, Hook, and plenty more, and he still entertained me as I was as adult, with What Dreams May Come, Insomnia, RV, World's Greatest Dad and many more.  And to this day, he entertains my children, he made films that are timeless.  Not to mention the stand up comedy!  No matter what my mood, what my mental health is doing, there is a movie for it all.  Whether it's enteratining the kids so I can pee in peace, or whether it's watching something that requires my undivided attention (once the dog is fed, the kids are in bed, the IVs are done, the housework.......sod the housework)

Robin Williams' death, has reported to have been suicide.  I have avoided most articles written about the event.  I don't want to know.  I don't feel it's my business to know.  I don't have a hunger to read absolutely every article that has been released about his death, or his mental health, or anything else right now.  I don't want to read people's opinions on what he did, or why.  His suicide has affected me in so many ways, that I really didn't expect at all.  He was my only childhood hero.  And that never wavered.  Only a few weeks before he died I watched What Dreams May Come for the millionth time (or so it seems) and it never gets old.  Despite not wanting to know what the various forms of media are reporting with regards to the death of such a legend, it is hard to avoid absolutely everything.  And while I am pleased that there has suddenly become such a huge awareness of depression and suicide, I feel a little disheartened at the general misconceptions around depression and suicide, that don't seem to be challenged.

The few things I have seen recently, that made me sad are as follows

Suicide is a permanent solution to a temporary problem - who knows that that problem is temporary?  Who knows the true reasons a person committed suicide in the first place?  Do you really know what suicidal feels like?  At that given moment, when you feel suicidal, you feel like there is NO other options, and while you, as the 'non suicidal person' may see 1000 options, that doesn't mean, for the suicidal person, those are viable options.  

Suicide is selfish -  This one bugs me quite possibly the most.  Suicide....is....selfish.  Really?  I understand to an extent, that people think those who commit, or attempt suicide, have no forethought about how those closest to them, may feel.  Now I have been there, more times than I can count, and I can tell you know, it's not for selfish reasons.  The thought pattern that I, and many people I know who have felt suicidal, is that the world would be a better place without you.  Your mother/brother/father/sisters/children/friends would be free, happier without dealing with a depressed person, you feel like you drag them down and are a burden on them.  Is that selfish?  And while many people do think about those they love, and this deters them, there are those who truly believe that their friends/relatives will, in time, get over it and move on, especially as their lives will be better without said person.

S/he should have gotten help -  Who says that suicidal people don't ask for help?  Some do, some don't.  Some do ask for help, but that help comes too late, or they live in an area where that help is not available, or it just doesn't help.  Sometimes the person offering the help, makes the situation worse.  And yes, some people don't ask for help (like me), and we fit into the difficult box, no one knows.  And, if no one knows, then no one can help.  But....what if you ask for help, and it doesn't help.   What if you ask for help, and someone laughs at you.  What if you ask for help and that person doesn't take you seriously, and just thinks you are 'doing it for attention'.  What if, that person, wants the complete opposite, to be left alone.  Doesn't tell anyone, because they don't want people looking at them sideways, reading your every movement and breath, worrying about them constantly.  There are often too many what if's, with undesirable consequences.  

Depression, I feel, is a word that is used WAY too often in society now.  'I'm feeling a bit depressed today'....no you are feeling sad.  I even hate 'this weather is depressing'.....and while 'depression' is 'sadness', to an extent, it is much much more than that.  Feeling suicidal is a symptom of being depressed.  This kind of blase use of the word depression, while many think it's a good thing, I think is wrong.  I believe, and have experienced, that 'being depressed' then becomes a bit of a 'fad'.  Everyone is depressed.  So and so was depressed monday, wednesday, friday, and alternate sundays.  It doesn't work like that.  Not for me, or many people I know who have depression anyway.  It's there, constantly, like a nagging.....naggy thing.  And every day you battle it, no matter what, some days you win, some days you don't, but it never goes away.  Never.  Even, on the best day you have ever had, it casts a shadow, and taints it in some way.

Many people believe a depressed and suicidal person, looks like one of two things.  Either,  they are expected to be pretty much unable to function.  Don't wash.  Don't eat.  Just sleep.  Stay in bed, all day, every day.  Literally do nothing.  And people assume feel sorry for themselves.  Then there is the kind of suicidal person who self harms (by the way, people self harm for MANY reasons, not just because they are suicidal), stands on top of car parks threatening to jump, explains in great detail how they are going to do it, write suicide notes, rings everyone to say goodbye, it's almost predicted.  And while I don't doubt for a second there are people like that, there are also many, many, many people who function at a completely normal level, for a long time, there are people who function under immense pressure and stress, and its when that fades, that's when they actually end their lives.  There are people who go to work, socialize, do their housework, eat properly, don't drink, don't smoke, exercise, all those things we are told to do to improve our mental well being, and yet still, think about suicide, on a daily basis.

I often don't talk about my mental health, as I feel it's a protected, and very personal thing, not to mentioned the fact I live in complete denial 90% of the time, and, as I am sure I have mentioned before, have experienced and continue to experience the most shocking level of discrimination, from the most shocking places.  However, unless you have felt suicidal yourself, you have no idea how that feels.  So don't say you do.  And, even if you have felt like that, even attempted it, and survived, you STILL do not understand how that person feels, as it's unique to them, to me.

I guess the point of this post, was more for my benefit.  I am genuinely upset that Robin Williams ended his life, and that he is gone, and although he leaves a huge legacy behind him, no one will ever forget that he ended his own life.  The world is full of judgments, and none of us will ever understand the reasons he did what he did, or how he felt.  Some of us may have an inkling, but his suicide was not for publicity, or selfishness, or whatever else I have seen.  He was a man, in pain and suffering, who could see no other way.  I wish everyone could analyse a media article, and believe, for a few minutes, that they may be fabricating or embellishing many of the 'facts', and then consider the fact that a man has died, tragically.  Instead of using this as gossip, or in a negative light, look around you, and wonder whether than lady who just walked past you is suicidal, maybe that man over there, with the huge grin on his face while his kids play in the park, has made his suicide plan.  Maybe your friend, who seems a bit down recently, is more down than you thought.  Maybe that friend who ALWAYS refuses to go out with you, is feeling alone and suicidal or depressed and just wants someone to make them a priority, just for once.  Open your eyes to the world people, it's happening all around us.  If Robin William's story does anything for this world, other than leaving an amazing legacy, let it be him that opened your eyes to the reality we live in.

Sorry for the absence!

So, I haven't been here for a while.  I feel I owe you all an apology!  The last few months have been absolute chaos.

I'm not really sure where the beginning is, but towards the end of last year, September in fact  my little family went from a two parent family, to a one parent family.  I am not prepared to go into details.  But it was a whirlwind of court, changing the logistics of the house, there was a kick back from the children, to see how far they can now push me, and it's been quite chaotic!!  All this, while being very depressed, and being offered no extra support whatsoever.  Where I live I have no family support nearby, and very very few friends.  It's been far from fun, but I am pretty sure the children and I are on an even keel now!!

So, during all that, in October, Rowan and Ayden were admitted to GOSH, under the Endocrine team for testing.  These tests were mainly for Ayden to be honest, and just a general 'let's check Rowan too' type thing.  

We found those magic wants you are all looking for!

So they did a profile for Rowan, and a fast, to see how long he can fast.  He managed 4 hours.  Which is about the same as last time thankfully.  So that means he can go 4 hours without eating or drink anything but water, before he gets to a 'dangerous' level.  While we were there, Rowan's gastroenterologist came to see me.  They are concerned about the way that Rowan eats (like a pig) and the quantity and frequency he eats, and that the more we reduce his TPN by, the more he seems to eat!!  There are a few things they would like to test him for, the main one being Prader Willi syndrome.  It's highly unlike to be this, and if it is, then it's the most unusual presentation they have seen, but the fact that he has hyperphagia (obsessive compulsive eating) is the biggest factor in PWS.  They also are looking at a referral to see another doctor at Addenbrooks, to look at the chemicals in Rowan's brain.  There are problems again with Rowan's weight, but more to do with being too heavy for his height.  In reality he's not gaining very much weight at all, but he's not gaining any height, meaning his BMI is getting too high.  Due to this we are now cutting down his TPN, to try and get him off of it, or at least to a 'static weight' situation.

For Ayden, there were a few developments.  Ayden had a test that stresses the body, and then they check levels of hormones to see whether they are working correctly and at the right level or not.  For Ayden they wanted to check his growth hormone mainly.  A previous test at another hospital deemed his growth hormone level too low, therefore he was on daily injections to replace this hormone in the hopes he would gain height.  This test however, resulted in completely normal growth hormone levels.  It looks like he just needed a little 'jump start'.  Now he no longer requires growth hormone injections!  The main reason that Ayden needed to be under GOSH though, was his blood sugar levels.  I stated that they were too low, the local hospital decided I was a paranoid parent.  I managed to get another doctor to refer us to the same Endocrinologist as Rowan.  So we went in for 'controlled fasting'.  There was a big discussion between the doctor and myself about what the results may or may not show.  So we began the fast.  I had repeatedly said that Ayden was waking up at 3am, with his blood sugar being too low.  We were eating dinner at around 5pm.  Therefore only managing 10 hours.

Basically, we starved Ayden, and checked his blood sugar every hour, to see what was what.  After 8 hours, his blood sugar was 3.4.  Usually we would be treating that.  However, in order to try and find the cause, his blood sugar needed to go under 3.  2 hours later, 10 hours into the fast, it was 2.9.  Just as I said,  10 hours and it's way too low.  It took quite a long time to get the 'results'.  The results were this 'Ayden fits into a very very small group of children who can not fast, for reasons that are unknown.  We are pretty sure that, like the other children he will outgrow it by the age of 8 or 9.....so only another 5 years to go' in the meantime, he can not 'fast' any longer then 10 hours maximum.  That means waking him up before I go to bed for a drink, with some carbohydrate powder in.  And it means a very specific plan if he's unwell.  Lots of blood sugar testing, and precautions.  Generally though, he's ok!  I was a little upset to start with, at the prospect of blood sugars for the next 5 years and precautions and worrying about ANOTHER child's blood sugars, but at the same time, I was relieved that the doctor took me seriously, and identified that I was not a paranoid parent, just seeing problems in Ayden because Rowan has problems.  You'd have thought by now, with all the 'little things' they ignored with Rowan, they'd be a little more cautious as the 'little things' are actually 'big things'!

 We went to a Pirate Party at Hamley's!!

Since then we've just been battling through the days, me and the kids.  Re-jigging life, and trying to get things working for the new setup.  Working as a new team.  Lots of trial and error.  The biggest battle I have had though, is getting support.  I was assured that once I became a single parent, I would get a greater level of support, especially with my mental health issues being present.  This wasn't true, and still isn't.

Rowan is due to go to GOSH at the end of January for some motility testing, to try to understand how his gut is (or isn't) working.  These tests were first mentioned when Rowan was 9 months old.  He will be 4 in April.  Originally these tests were going to be done in November, but with the change of situation at home, it was pushed back to January.  I knew the exact dates during the admission in October.  The plan, from what I had been told, was that social services would find me a 'respite family'.  So, if Rowan ever needed to go to hospital, or I needed a break, or a school run doing or something, I would call this family, and they would have the children/child for me.  To offer me a safety net, and options.  So...I informed social services of the date of the admission as soon as I was told it.  Nothing was really said.

Time has gone on and on and at the beginning of December I started to worry that this 'family' had not yet been found.  (I was also getting extremely frustrated that at that time, they hadn't actually done anything to help me, despite me struggling with the logistics of school runs etc).  So I started hassling.  We have 6 weekly meetings to discuss what's going on, who needs to do things, what I need extra help with, any concerns etc.  These meetings tend to always go the same way.  Although, the meeting just before the children broke up from Christmas, was shocking to say the least.  I was informed, a month before the January admission, that they had known about since October, that they would NOT be offering me ANY support.  No childcare.  There are no 'resources'.  So what am I supposed to do?  I have a child that needs to go to GOSH for tests that have been on the cards for 3 years.  And I have 3 other children who can not come with me, need to go to school for consistency  need stability.  As I said earlier, I have no family nearby and very few friends.  (2 in fact!).  What was I supposed to do?  Social services weren't interested.  They came up with a whole host of suggestions all completely unsuitable, from putting them with family members hundreds of miles away who don't know my children, or their needs, missing school for the period of 2-3 weeks, to asking me to leave Rowan at GOSH, visiting him at the weekend.  

I was distraught, and felt very very let down.  I was also very very angry at the suggestions, I am trying to keep my children as stable as possible.  Give them consistency   School is the constant that they will need at a time when Mummy and their little brother will be away.  They need to feel secure and know what's going on and when at all times.  Social services were not concerned about the same things I was.  For them it was a 'resources' issue.  Not a 'need'.  And who bares the brunt of the lack of resources?  My children and I.  So, I had been put in a situation that meant I wouldn't be able to take Rowan to GOSH, for the much needed tests.  Therefore, not meeting his medical needs.  However, I had no childcare, therefore I'm not meeting the other children's needs either.  I can't win can I?  I was called manipulative and obstructive and all kinds of other things.  Is it so wrong that I want what's best for my children instead of what is best for their budget??

Trip out of the hospital for a 'offee' with Mummy (ok his is tea)

 In the middle of all this, Rowan was admitted to my local hospital.  He had to stay in overnight.  He needed IV antibiotics for 10 days, 4 times a day.  For a feeding tube that had been infected for close to 5 months with no let up for more than 48 hours.  I was distraught.  I was on my own, with no help, and now I would have one children in hospital and 3 at home.  What was I meant to do?  We called on social services.  It's a crisis right?  They are there to support me right? WRONG.  Social services weren't interested.  They told me Rowan was safe in hospital and what was my problem, leave him there and go deal with my other 3 children.  They have no idea.  Would you leave your 3 year old in hospital all by themselves?  I have to admit the play staff (also known as pink ladies) were fantastic with Rowan, as they always are, and without them I don't know what we'd do!!  The nurses fed Rowan food that he was intolerant to, clearly not reading his notes AT ALL.  And were are not talking ONE thing, we are talking LOTS of things, from toast, to glass of milk, to cereal with normal milk on, allsorts.  Rowan spent a LOT of time on that ward, they are supposed to know him.  And yet, they got his diet SO wrong, when he's been on the same diet since he was born!!  We had all kinds of incidents, from TPN being connected 4 hours late (and risking his blood sugars dropping, but no one checked his blood sugar so they wouldn't know if he was hypo or not) meaning he was connected 4 hours longer the next day, preventing him from being to go out for walk, or anywhere infact, to not changing his nappy frequently enough leaving him in a right soggy dirty mess.  This is where he's safe yes!?  Really!?  He wasn't poorly, he just needed some IVs, therefore on the priority list, he was fairly low down.  But like I said, the play staff were fantastic, as always.  They are completely indispensable. 

Somedays the pain wins.

Anyway, social services clearly didn't help. I ended up a frazzled mess, couldn't work out where I was going or when or anything.  I had the RSPCA turn up, accusing me of having a dog 'living in filth' which was rubbish, and the case was closed.  School pulled it out the bag.  They put all 3 of my children into their after school club.  Which I must remember to call 'zigzag' or Ayden shouts at me loudly!!  So for the whole 10 days (well 8 school days I think it worked out to be) they made space for my children.  That way I could take them to school, run home, do an hour housework, and then dash to the hospital to see Rowan for the day, pop out for appointments/supplies, then pick the children up from school later on.  It was chaos, as I also needed to make sure Katrina still got all her activities in that I had promised, Brownies, young carers, and other activities too.  I made it through though, by the skin of my teeth.  Still very concerned about the GOSH stay though.

Then, my Christmas Miracle occurred   It appeared in the shape of a Head Teacher.  The head teacher was at my meeting, as he is now regularly, and is a wonderful source of support and information for me and my children.  He had a suggestion.  A suggestion that sounded ridiculous to start with.  A suggestion that seemed pointless and hopeless, but I was desperate.  What was the suggestion?  That he would write a letter, appealing to the school community to help out in this situation.  I had nothing to lose.  I wasn't overly convinced that there would be any response, we are talking 3 children, for 2-3 weeks.  Who in their right mind would take that on?  I suggested to the head, that dependent upon the response, I would be happy for the children to be split up if necessary, maybe the break from each other would do them good?  Appreciate each other a bit more perhaps.  It may be easier to find people to have them.  And if it meant they could still go to school, then it would be worth it.  I wasn't hopeful though.

The meeting was held on the Friday.  Monday morning I proof read a copy of the letter that was sent out.  Here is a copy of that letter:

The letter went out to all the parents on Monday at the end of the day.  This was the last week of school, the children finished school on Wednesday for Christmas.  Tuesday morning, the childminder dropped the children at school for me (which I pay for).  I took Rowan up to 'nerfery' for his last day, and his Christmas party.  (By the way, for anyone who is interested, Rowan LOVES his nursery!!!)  As I stood in the queue to collect Rowan at the end of the party, 3 members of staff informed me that the head wanted to see me.  Cameron and Ayden were going to the childminder after school, and usually Katrina would too but she was due to go out with Young Carer's that day so I was taking her home.  I figured I had enough time to pop and see what the head needed to see me for, before Katrina came out!  I found the head, and he informed me that he'd had a really good response from the letter.  Less than 24 hours after it went out.....we had had responses.  He'd looked in his diary at the list of names and I was gobsmacked.  Very very very shocked.

Some of the names I didn't recognise.  Others I did.  At that moment it hit me, these people care, and want to help.  School asked people to open their homes to my children, and so many did.  Some people offered to have one child, some offered to have 2.  With the amount of names on that list, I knew that we could sort this.  As I said, some of these names I recognised.  Why did I recognise them?  They were my children's friends right? Wrong.  They were teachers.  Yes.  Teachers were offering to look after my children for me while I take Rowan to GOSH.  I cried.  I just couldn't believe what was happening and I wasn't really paying attention.  The head told me that he would be happy to have ALL 3 of my children at the weekend, so they were together for weekends.  Another teacher at school also offered to have them for the weekend.  The school will police check all the people that offered to make sure they are safe (school suggested this, not social services).  So, on the Wednesday I know a few more people approached the head, and even now as I type this, I am in shock, and disbelief.  

Why did I write this?  I just want everyone to think a minute about their school.  Would you approach them to ask for help in my situation?  If you work in a school, is this something that your school would offer vulnerable families?  Would you even consider asking them?  In my situation I have found an amazing school.  I have said that repeatedly, and it's just confirmed for me over and over again.  I never would have asked.  I am not a social butterfly.  I appear at the school, and get the kids into the classroom, dash home.  I appear to collect my children, no conversations, grab all the children, dash home.  My children don't have play dates, or sleepovers.  I don't meet the other mum's.  I don't stop and talk to other parents if I see them in town.  While waiting to collect my children I find the quiet corner.  And yet....everyone knows who we are.  OK, so the small child in the wheelchair with mickey mouse wheels probably screams 'GOSH patient' but still.  If your school sent a letter home asking for help, would you help?  Would you see if a family member of yours would help?  Grandparents?  It is such a simple idea, and for me had huge results.  It highlights the importance of a good school.  Not only that, but for me, it highlights that the head teacher of my children's school has the confidence in the school community that they would help.  That says a lot about him.

Social services budgets are being cut.  Resources are being withdrawn.  You've probably heard this on the radio or news or read it in the paper.  There are lots of things we 'used' to get, that are no longer available.  From school runs, to sessional workers, to respite, to play schemes being paid for, to a lift to appointments.  I get nothing.  I do not agree in any way shape or form with the way my case has been and is being handled.  I do not believe that a family in the situation I am in, should get no help.  In this case, social services' cut backs, would be preventing Rowan from receiving tests and treatments that he desperately needs, and has needed for a long time.  This is exactly what is happening around us, you may not know about it, it may not affect you, but it's happening.

Ayden had his face painted as Batman!

So, I am just going to finish by saying, that we WILL be going to GOSH at the end of the month, and while this is far from an event to celebrate, I celebrate the fact that the school community, the parents, and teachers, TAs, dinner ladies, cleaners, receptionists, and the headteacher.  Everyone is so important, and so supportive.  I just wanted to highlight the fantastic school that my children attend.  And to anyone from the school community who reads this, I just want to say Thank You.  Even if you couldn't help out, the fact you maybe thought about it, or read this blog, tells me that you are interested (or very nosey!) and spent a few minutes (ok maybe 10 this is a long post) thinking about me and my children.  Thank you.

Rowan has new 'Mr Tumble' wheelchair gloves!

Cameron was evacuated! And LOVED it!

Katrina had her face painted at the 'Believe in Magic' party!!

Latest addition to the madhouse......

The latest addition to the madhouse, is definitely not what you'd expect.  The reaction to her, I didn't quite expect either.  It arrived a couple of weeks ago, and came complete with an 'adoption' certificate.  We had no idea what to call 'it' and, infact, we weren't even sure if it was a boy or a girl.  So we decided to ask the children.  Cameron and Katrina decided they would just pick names that they liked, and shout them out for the rest of us to comment upon.  Ayden sat quietly, looking at 'it'.  Then he declares 'It's a girl'......so I looked at him and said 'Ok, it's a girl'.....and he said 'No, look, it has a bottom.....but no willy, because THIS is a tail, I have a bottom and a willy because I am a boy.....no willy means a girl'.  I wasn't quite sure to address that, other than that clearly he was right.  I found it rather fascinating that neither Katrina or Cameron were even bothered, and clearly saw 'it' as an 'it' where Ayden saw 'it' as a.......well.......personality.

No one could still think of a name for our new addition however.  We searched and searched and searched.  It was harder to find a name for our new addition than I would have thought.  So.....what is this 'it' we are talking about??  We would like to introduce you, to our latest addition........

DOMINO

Rowan has become very very attached to Domino.  We had a few settling in problems, and it took a little while for us to work out where Domino will be sleeping, and apparentl what she likes eating, but both Ayden and Rowan have decided that Domino likes McDonald's chips with curry sauce, along with diet coke to wash it down.

Domino's first outing was a big outing.  Domino had to come with us to the hospital.  Rowan hates the hospital.  So we decided that Domino deserved her first day out, and Rowan could show Domino all the things we have to do at the hospital, this made things a lot better for Rowan!!

So here are the pictures of Domino's trip to the hospital.

First we had to sign in, and then we have to wait to be called.

While we wait, there are toys we can play with, Rowan decided that Domino needed to try some new foods, McDonald's chips just aren't good for you.

When the lady with the blue T Shirt on calls your name you have to go into a special room, where they weigh you and measure you to see how big you are growing!!  Domino didn't like the scales, she kept sliding off, oops.

Once that's all done, we have to wait for the doctor to be ready.  Rowan's doctor was a big grumpy and wouldn't let us take a picture of Domino with the Dr.

After the doctor's appointment, we have to walk through our town to go back to get the bus.  In the town we live in, there is a really nice art project.  It's called 'Wild In Art'.  Last year, it was the 'pride of Northampton' so all the schools, and lots of other organisations too were delivered a 'lion'....they were plain white model lions.  Each school then decorated them, then they were displayed throughout the town.  They were absolutely gorgeous.  Some adult artists made some too, and there were lots of different ones. Outside our main shopping centre was a Lion that looked just like Alan Carr!  With the goofy teeth, and the glasses, Alan Carr came from Northampton!  It was very very funny!  So this year, because the project was so successful, it has been expanded to cover all kinds of different animals, with all kinds of different designs.  So Rowan and Domino went through town seeing how many different animals we could find, what they looked like, and then posing for photographs.  It gives a little bit of interest to our town!  And they are hiding all over the place!!

                                         

  A Rhino, depicting the Balloon Festival that is in Northampton every year.

Domino couldn't climb onto this one, there was nothing to hold on it, and it was so tall!

  This Gorilla sits in the middle of town, Rowan thinks he looks a bit like a security guard, but the label says he's a pilot.

Rowan helped Domino climb onto the back of this Lion for a picture.

                             Oh that is a lot better, a tiny gorrila, much easier to climb onto!

This Hippo is a giant blackboard!  Everyone writes on it with the chalk out of the pink cups!  Rowan and Domino made their mark too :o)

This is Rowan's favourite animal in town.  We decided though that the Rhino needed more Spots.  Lots of animal prints all in one.

We thought we lost Domino, but no, she was sunbathing on the pink flower Rhino, phew.

It had been a busy trip to town and both Domino and Rowan were very tired!

Goodnight Domino and Rowan, sweet dreams!

I would just like to say a big Thank You to the guys and girls at Post Pals, for running this project, the Dotty Project, and Thank You to Dotty for allowing us to adopt one of her Littermates.  We are looking after her well and she is enjoying many days out, she is a valuable member of the family now.  We have been to GOSH, we have been to the park, Domino comes everywhere with us now.  Thank you.  She gives us another focus when we are out and about, and has allowed Rowan to be much more interactive, although without words still.

Sometimes, you have no choice but to give up.

Just before I begin this blog post I want to say that I am not going to name names, because actually that would make no difference anyway, and would open me up to possible legal stuff going on.  I will use the abbreviation CIN for 'Child in Need Team' and DCT for 'Disabled Children's Team', SW for Social Worker and SS for Social Services.  Mainly because I am just lazy!

So.....Rowan went into GOSH for his admission and his liver biopsy was done.  We are STILL waiting for the results however.  3 weeks later, over 10 days after we were told the results would be in.  I have had contact with the team, and they are constantly checking for results but so far nothing.  Is that a good thing or a bad thing?  Some people say no new is good news, but what actually would qualify as 'good news' and 'bad news'.  Good news is what?  Things come back normal and we are no closer to a diagnosis, no closer to finding out what's wrong, no closer to finding a better treatment plan?  Doesn't really sound like good news does it.  Is getting an answer good news?  What if that answer is a terminal answer, what if that answer means that nothing can be fixed?  What if the results come back as showing something that will require an intense treatment plan that requires lots of hospitalisation and still no 'cure' (we are fully aware that there is probably no cure for Rowan especially as he still has no diagnosis).  Is that good news?  Or is that bad news?  I guess there is no such thing as 'good news' and 'bad news' at this stage, it's just 'news'.

So whilst dealing with all this, I had news that the DCT was closing our case for Rowan.  Basically, since Rowan has been born, we have been escalating up the 'social work team' ladder.  We have been stuck amongst all the changes to the teams, so in the last 4 years (from when I fell pregnant with Rowan) we have been under 4 different 'teams' with 7 different social workers.  Each team deeming us 'too complex' and moving us up the ladder.  So.....last year after the child protection conference (which SS initiated) we ended up with two 'teams'.  The DCT for Rowan (as he is a disabled child) and the CIN team for Katrina, Cameron and Ayden as they are deemed 'Children in Need' with having Rowan as their brother, their own needs, and an 'unstable' mother.  The DCT funded a childminder for the older 3 children on a Thursday as an assessment they did said that we would hugely benefit from a 'break' a 'day to ourselves' seen as our family is so full on all the time.  A day that I didn't have to rush to do the school run as our childminder picks them up from home and drops them off at 6pm.  They also sorted out a play scheme for us last summer holidays so the older 2 children went for a week each, and Ayden went to a childminder too.  They used to organise taxis for school runs when one or the other of us was away, I can't organise it myself, because of their ages, they need to make sure the driver is all checked, and therefore another organisation need to book it (even though it's the same company we always use). 

So....Rowan has his nursing care package which is funded 80% by health (so the NHS) and 20% by social care (SS).  Then the childminder started to be paid by the CIN team as it was for the older children.  SS made promises that they would input support so that I could do my DBT course as safely as possible.  So they'd put extra childcare in.  I was feeling fairly......supported?  OK so I'm not a huge fan of social workers, well, my social workers.  I hold a grudge because of the child protection process, and the amount of times they've promised things and taken them back.  But I did kind of feel like we were getting somewhere.

On the Monday we were off to GOSH, I checked my emails on the way.  I had an e-mail from the DCT SW which basically said that they were closing the case.  Now,  I was somewhat shocked, but they tried assuring me it would all be ok, and they weren't closing the case, they were moving him to a more appropriate team, to be with the other children so we have one social worker, not two, it will be more co-ordinated.  My team went nuts.  There was no question time, no discussion opportunity they were just closing the case, end of story.  No room for movement at all.  I was not happy either.  They were trying to assure me that all would be ok again.  We wouldn't really notice any change, everything would carry on as it was.  I don't handle change very well, and was really worried.  Who was now paying Rowan's care package as it comes from the DCT budget.  No one would answer me from the DCT as the case was now closed.  So I started emailing the CIN SW to find out, again she was ignoring my questions.  The worst things you can do to me is lie, ignore me, or hide things from me. 

I repeatedly asked over the course of the week (while I was in GOSH) what was going on and if someone could explain to me what was happening to the promise of support and I heard nothing.  So instead of stressing over it, I concentrated on Rowan's admission and keeping my mind focused on what was happening at the time.  If you've ready any of my posts from that week, you will know that it was pretty chaotic. Due to the stress of the journey home, both for Rowan and I, and the change of going from hospital to home, it always takes a couple of days for everyone to settle back to reality.

The Saturday was filled with cleaning, washing, tidying etc.  And then Sunday was a PJ day.  At about 2pm I checked my emails, just expecting the usual junk mail, maybe someone tagged me in something on facebook, or some company offering me 99% off deals.  And there appeared an email from the CIN SW.  Yes it was a Sunday.  The email basically asked me if I could update her on an appointment I took Katrina to, as she was completing the core assessment on Katrina before they closed the case.  Erm......hold on......CLOSE THE CASE? So I emailed back, just clarifying what she was saying and yes, they were closing our case.  All 4 children's cases.  So all that 'we're transferring Rowan to a more suitable team' stuff was complete crap.  When I asked how long until the case was closed I was told 10 days.  We had a meeting between that Sunday and the following Thursday and she was going to say something then with her manager there.  So actually they were only going to give us 7 days notice.  Once again, no room for discussion nothing.  So, I had lots of questions.  Here were my questions with the answers I was given.....

1.  What is happening to Rowan's care package as SS are paying 20% of it, how can they be paying a package for a child who has no open SS case, and if that's the case, who will be reviewing the package?  (basically every 3 months two people come out to discuss the care packaged and decide if we need more, or less hours, and one person is from the NHS, and the other is a SW, as those are the two 'organisations' funding the package.)

Well, it's highly unusual, but someone, somewhere, somehow will be funding the package still.  Don't worry.  Oh and we have no idea who will be reviewing it, probably just any social worker.  (Going to make decisions based on a child they know NOTHING about......going to be interesting!)

2.  What is happening regarding the childminder we have for the older 3 children?

Well, that will no longer be funded as you will no longer have an open case to SS.....(This is where I lost my rag, and responded with 'How the hell can you assess that I need a childminder, fund it, then take it away with no warning, all along you've bleated on about how my children need stability, and then remove one of the most STABLE situations they have right now.  One adult they trust that's not a parent.  And what is meant to be happen now, I have made commitments (OU) based on that childminders support).....and that is was NEVER going to be long term (although we were also never told otherwise).  They said they were not saying that we did not need or benefit from a childminder, but they wouldn't be funding it.  So we need to fund it ourselves, and any extra childcare we need will have to be bought in by ourselves.

3.  Ok, so what if I can't afford the childminder, that you as a services assessed that I needed a year ago, and despite the fact that the situation has not changed, you now decide no longer needs to happen?

Um.....well......tough (Ok, maybe they didn't say the word 'tough' but that's what I heard).

4.  Why are you closing the case?  (Ok I guess most people would have this as question one, but I was MAD)

There are no child protection issues, the children are well looked after, there are no concerns about them, we are good parents.  Therefore we do not meet their criteria as they now only deal with children on a child protection plan, or children they are removing from their parents.  So.....if you are a good parent, sacrificing your own health, your own sanity, your own life, then you don't need (or deserve) any help looking after your children in order to be able to look after yourself a little bit.

5.  You say there have been big changes in our circumstances, can you name some?

Lots of things have changed.  (Like what?)  Lots of things (Such as?)....well.....um.....

6.  We have a child in need plan, not all of the 'actions' on that plan have been completed, yet you are closing the case?  How?

All the actions are completed.  (So what about the ones about seeking help, for me to explain self harm to my children?)  There were no resources available, so there is nothing we can do.  (That's a rubbish excuse, that I have been fobbed off with for 6 years now, and you lot told me you would help me with it, and now it's not possible!?)

7.  So when do we actually lose the childminder?

Well we will pay her until the end of August.  Then it's up to you whether you continue to pay her or not.

8.  So, I assumed the help that was promised for me to do my DBT course is also revoked?

There were never any promises made.  (This is where my mental health worker chips in 'erm, yes you did, you asked hours, what the commitment was like, what CMHT (community mental health team) were asking for') and their response, was 'we understood the commitment, but we never said we would help with childcare.  There is nothing documented to say that we said we would help' (equally, when discussing the situation, not once did you say you were NOT going to help)

So, whilst all this discussion was going on, I started asking other questions, such as, what happens now then.  I had given up fighting.  What was the point? No one was listening to me.  No one was going to listen to me.  And I just started getting upset.  I worked my arse off of my kids.  I tried so hard to help myself, I agreed to therapy that I'd said no to for years, I started an OU course, and it feels like I have been penalised.  We were in a meeting with all these questions.  I started to raise my voice.  The SW told me she'd 'sort this' and 'phone them' and 'do this' and 'do that'.  I was seeing red.  So I told her to 'stop feeding the room bullshit, you are leaving in a week's time, these things have been outstanding for over a year and now magically you are going to solve all the problems in a week, bollocks'.  The SW manager pipes up, and tells me to calm down, and that SS closing is a good thing.  (Clearly I don't see it that way).  Basically at the end of the meeting it was agreed that we would step down to a team called the 'core offer team'.  They have service coordinators that help sort out messes likes ours.  We were under that team before, until we were moved to the DCT.  They are not social workers, but we felt so supported under them.  They do not have a budget though, so they can not pay for childcare.  I felt like I got the consolation prize.  But I had to admit defeat.  I wasn't going to win. 

My mental health worker tried.  He said things in that meeting that I really didn't want people to know.  And although I know some things are my fault, because, although I will sit here, on the Internet, and admit to the world that I see and hear things that aren't real, there are thing that I do not share with anyone, and only share with my mental health worker at a push.  I have real issues with trust, especially with professionals, and this is exactly why.  They make promises, then say they didn't make them at all.  Making me feel like I made it all up in my head.  I came out that meeting feeling awful.  Some of the way that I have been feeling recently was made perfectly clear, the amount of 'risk' I present to myself was also made clear, and yet, despite SS stating on numerous times that my 'mental health is just as important as the children's health' they basically told me at the meeting that they don't care.  My ever decreasing mental health state, has nothing to do with them, because they are children's services.  My mental health state is to be sorted by the community mental health team.  So all this rubbish that is told to families about 'working together' and 'looking at the whole family' is a load of rubbish.

Leaving that meeting with the consolation prize, I tried to move my focus to looking at the core offer team, and hoping they will be able to help me feel more secure.  A couple of days after the meeting, the SW emailed me again.  We do not fit the Core Offer Team criteria either.  They are refusing to offer us a service.  I felt like I'd been repeatedly kicked in the stomach.  I am trying to help my children as much as I can.  I do the work of several professionals, paid in love and smiles and cuddles by the children, and I do not deserve to have an identity of my own it would seem.  Basically my mental health worker told everyone in the room that I have a 'suicide plan, with intent'.  Now, it's not an attention seeking plea, it wasn't a 'last ditch attempt' to get them to keep the case open.  There are lots of the things going on for me that are causing huge problems for me.  I have had a really big downward spiral with my mood in the last few weeks.  And this whole situation made me feel completely worthless.  Like I meant nothing to anyone except my children.

So, where does that leave us now?  With a CAF.  Do I have any hope that this will work out OK in the end?  No.  Do I have any choice but to just let it happen?  No.  I had a CAF when I just had Katrina, single parent, mental health issue.  No physical health issues at all.  And there wasn't much that could be done for us then (before all the budget cuts).

Right now, I have given up fighting.  I have given up arguing with services over what I want and/or need for my children, and for me.  I have given up fighting to keep my mood stable.  It's through the floor and below.  I have given up fighting my way through each day.  I let chaos happen around me.  I don't chase things, I don't argue, I don't question things.  That requires energy that I just don't have.  Maybe not fighting, in time, will make things better.  If I'm not so hung up on being combative with everyone, maybe, even though nothing will be sorted, I won't be so stressed.  I attend appointments, but with no 'everything is ok' face.  I shrug like I can't be arsed, I am physically in the room, what more do they want?  Services are not there to help out struggling parents, who are saving the government thousands every year by doing the job of therapists, nurses, PAs, doctors, taxis, educators every single day, trying to enable our children to reach their full potential.  Don't ask for help if you need it.  The answer will be no anyway.

Since I originally type this out, my mood has further deteriorated.  I have shut down.  I don't want to be around people, I don't want to join in idle chit chat.  I do the bare minimum to get through the day.  Right now we are in limbo, no social work team, no caf, no core assessments completed.  No hope of Rowan starting nursery in September.  I don't want to reply to texts, or emails or phone calls.  I don't want to bring anyone else's mood down.  Like I said I do the bare minimum.  I had to take Rowan to the hospital today to get more antibiotic as the poor little dude is in pain constantly and is having issues with a recurring rash, and losing weight etc.  I don't want to be so miserable, but I can't change it, if I could I would.  I wouldn't even bite your head off if you insulted me or my children. 

It has also transpired, that this whole situation may have come about, because Rowan has no diagnosis, and therefore fits no box.  Therefore SS don't know what to do with us, what help we need, or where to send us for advice/support.  So they close the case because they have 1000s more that they do know what to do with.  Obviously that's not official, but it's the general feeling a lot of our team have, and a lot of people I have spoken to.

So for now, I am existing, not living.

Postive Post.

I have noticed that a lot of my posts appear to have a little bit of a negative twist to them.  I don't mean to do that, but our life is full of bittersweet situations.  Also, I am not a naturally positive person.  Experience has taught me that nothing is truly positive, and I handle life a lot better if I can see the negatives, and predict them, and then they don't hurt so much.  I am what would be known as a pessimistic person, and I'm comfortable with that most of the time.

I have decided to try and have as positive post as I can.  Without too much medical stuff in it.  Showing the world that while my family is so amazingly different to so many other families, and certainly local families, we are also very much the same, we just have to approach life differently sometimes, and think a little harder, prepare a little longer.

Rowan is a 'pal' of a charity called 'Post Pals'.  If you want to read about this charity then go here: Post Pals basically this is a charity that sends letters, cards, postcards and sometimes little gifts to the children who are 'pals' and their siblings.  It's a fantastic charity, and puts smiles on the children's faces on the darkest of days, often created by the cost of a postage stamp, and a thought.  Sometimes all these children need to know is that someone cares, that someone has spent a few minutes that day thinking of them.  Rowan has only been a pal since just before Christmas and LOVES his post.  As do the other children, especially when Rowan is in hospital, or has not been too well demanding more of our time than usual.  This year we went to our first every 'Post Pals Party'.  This is an annual event, where all the volunteers who write to the children throughout the year, and all the 'pals' and people who are interested, or support post pals, all get together and have a fun day.  The people who write to the children get to know the children a little better, you get to say hi, and thank you.  You put names to faces.  So this year we went for the first time ever.  I took Cameron and Rowan with me.  They had an absolutely amazing time.  Every single person at that party had something they could have moaned about.  It could have been one of the most negative atmospheres ever.  And yet, every single child and every single adult was smiling.  (Some, including myself were freaking out on the inside however).  Every single child had fun.  It was a place where no one cared about your difference.  No one stared, no pointed, no one had any negative comments to make.  It was one of those events that I will never ever forget.  As a parent of a 'pal' it was rather odd, all the people who write to Rowan, know what he looks like.  There is a photo on his page : Rowan's Pal Page (please look through the pals, choose one, and write a letter, or a note, or just write 'Thinking of you today' in a card, how about a list of jokes, or that story about your pet, use your imagination!!)  However I didn't know who ANYONE was.  So everyone was there 'Hello Rowan' 'Hi Rowan' and I'm stood there just smiling like a Cheshire cat.  I told a lie, I did know a couple of the other 'pals' and their families, and so it was a nice time to catch up with them, that wasn't in a hospital setting.  It was also good for Rowan to see his friends outside of a hospital for the first time ever.  And it was good to confirm to Rowan that boys have tubies too.  (He has only ever met girls with the same tubes and lines as him).

There were lots of things going on at the party.  From a HUGE inflatable slide, that I think made a lot of parents hearts skip a beat as their child hurtled down this slide, with a squeal and smiling from ear to ear, and I think a lot of adults actually went on the slide.  I will raise my hand and say when we got there, way before most people turned up, I went down this huge slide with Rowan.  He wanted to go on it.  I was determined to let him go on it.  So we climbed up, I sat him on my lap, I made sure all his tubes etc were safe, and he absolutely LOVED it.  I think Cameron spent most of the party on that slide!  There was a bouncy castle, and a ball pit, a Peppa Pig Treasure Hunt, a buffet, face painting, and a raffle where the children just kept on winning, and kept on smiling.  I kept noticing how many people were smiling. 

The other thing that happened at the Post Pals Party, was something that I will remember forever and then some.  Singing Hands were at the Post Pals party.  Who are Singing Hands?  Pardon?  You don't know who Singing Hands are? You haven't lived.  Singing Hands are a group of people who use singing and signing together.  If you don't have a small child, or a child with additional needs you just won't understand how amazing they are.  For us, there are three reasons we (and Rowan) love Singing Hands (if you want their website it's Singing Hands ).  When Rowan was in his 8 month stay at GOSH, stuck in his cot, I spoke to one of the other Mum's who did signing with her daughter, and we borrowed these DVDs from them, they were Singing Hands DVDs.  I watched them with Rowan, and he started to sign.  I honestly believe those DVDs, and those two ladies, have a massive part to play in Rowan's life.  If it wasn't for the signing, (which is always used with the words) he wouldn't be talking today.  He still uses his signs if what he is saying isn't too clear, or if he's not comfortable in a situation he sometimes won't talk, but he will sign.  It gave us something positive to focus on in such a negative situation.  Singing Hands used to go to the cubicle of the little girl who we borrowed the DVDs from to do a 'sing and sign' session.  One of the first times Rowan bottom shuffled, it was to get to the cubicle to go and see.  He didn't go in, he didn't make his presence known, he just sat in the middle of the corridor and watched.  When he was well enough, we started taking him to the Activity Centre at GOSH on a Tuesday.  This was the ONLY thing that was focused on Rowan being Rowan, not Rowan being poorly.  It was often the only time he would leave the ward, a change of scenery for him.  I started to plan my week around that trip to the activity centre.  It was a time that Rowan and I bonded over.  It gave us things to praise and celebrate, the new signs he was doing, and he picked them up so quickly! 

When we came home from hospital, Rowan used to ask for his 'hands' all the time.  We watched all the songs on you tube that had singing hands on or in them.  He was hooked.  It became a bedtime ritual.  Needless to say we bought him the DVDs, so every night, Tracy and Suzanne are in Rowan's bedroom, singing and signing.  Sometimes it's at bedtime, sometimes its at 2am when he can't sleep.  Singing Hands offers Rowan the distraction when his pain is bad.  In fact as I type this I am aware that one of the DVDs is in the CD ROM drive of my laptop.  Still in there from last weeks GOSH stay.  So Singing Hands were at the party.  All the children were amazing.  Rowan.....shy, quiet, selective mute, anxious Rowan, suddenly evolved into confident, lets get stuck in, trying to sing and sign the songs he knows so well, smiling.  It honestly made me cry.  And for Cameron, also usually a shy and quiet child, he was the showman.  Boogieing away, singing, signing, they have been as much a part of his life, as Rowan's and mine.  It truly was nothing but positivity.  So much so, during Rowan's GOSH stay, I took him, on Tuesday, to the activity centre, to see 'Singing Hands'.  Once again I scheduled it into his week, and he was even more involved in his signing.  You may think I am being a bit over the top.  But you have no idea how much a tiny thing like that means to you in a situation that is nothing but negative.  And I know a lot of parents in a similar situation feel the same.

Rowan may have a lot of differences to the 'average' child.  But he does the same things as other children too.  He has just started to do pretend play.  And he thoroughly enjoys playing with all kinds of pretend play toys.  From toy kitchens, to baking, hoovering, to happyland.  Amongst all the medical stuff, he does lead a fairly average life as a 3 year old.  It may take 30 minutes of medical care things before he can go to play, rather than spontaneously deciding to play, but he does still get to play.  And he plays with his brothers and sister.  And some of the time, they even manage to play together without scratching /biting /smacking /shouting /squealing /crying.

And some days he doesn't get dressed until 11am at the weekend, just like everyone else :o)

This is one of Rowan's favourite games.  The 'phone' in our house we have lots of kinds of phones.  Rowan likes pretending all kinds of things are phones.  From an actual toy phone, to a book, to his hand, and to his foot.  This 'foot phone' is currently a favourite.  And it makes international calls to his 'Aunty Vowry' all the way in the USA, as well as to Daddy who is sitting right next to him.  He does absolutely love telephones.  Talking of 'Aunty Vowry', this is someone else who makes Rowan smile.  Rowan and me both.  Valerie is not only an amazing lady, and an amazing Mom, and an amazing nurse, she is also an amazingly creative person, who puts smiles on hundreds (maybe even thousands!!) of children's faces who have feeding tubes, and other medical devices.  Valerie makes what she calls Belly Buttons.  Seen as I am having a bit of a 'linking' blog post, I will link you to her website too, where you will find Rowan and lots of other gorgeous children, with gorgeous smiles. Belly Buttons  Belly buttons are cloth pads, that go around feeding tubes.  The boring bit is that they collect gunk that leaks out, and they help with granulation (extra skin).  They help stop little (and big!!) people's skin from getting irritated and sore and just generally not feeling happy.  Valerie makes these sites happy.  It also makes these feeding tubes fun.  It makes them less medical.  Lots of children (including Rowan) thoroughly enjoy 'choosing' a pad (or two in our case) every day.  It gives them a little bit of control.  It teaches them that it's not so scary.  It makes them proud of their tubes, not terrified.  Rowan for sure has gone from hiding his buttons away, to proudly displaying them to anyone who wants to see them.  Valerie also makes 'Belly Belts' to protect tubes, and hold the feeding tubes.  And what's even better, is that these aren't about making money for Valerie.  She genuinely loves these kids, and loves making them happy, and loves seeing the pictures.  It is a labour (or is that labor) of love for Valerie.  We Love Aunty Vowry.

Although this is a fairly bad photo (blame the photographer) it is also one the most amazing photos I have ever taken.  The meaning behind this photo is more important than the photo itself.  This is Ayden, riding his little brother around the 'track' at his nursery.  Rowan went to nursery for an hour, a taster, a settling in period, evidence gathering type visit.  This is the nursery that Ayden already attends, and we can't wait for Rowan to attend to.  Ayden has done amazing things at nursery, despite the odds being stacked against him, and we're sure Rowan will do the same.  This is the first time, that Ayden has really been able to be a 'proper' big brother.  I know that sounds ridiculous, but he has never been able to do anything with Rowan.  Ayden, like every 4 year old is clumsy and heavy handed and we spend the whole time telling to 'be careful' around Rowan, that it's really only been the last few months they've really properly interacted.  Most of that interaction is fighting and shouting at each other, but sometimes you get little glimmers of the brother love I want my boys to have.  Ayden was massively protective of Rowan at nursery 'mind, it's my bruvva' as Rowan is trying to manoeuvre his way through the room, or the garden, 'Rowan look at this' it was genuinely all positive interactions.  They sat nicely together at the computer, and played TOGETHER.  It really makes me appreciate how much they have BOTH been through the last 3 years, and that actually, even though they spent the best part of 2 years apart, their bond runs much deeper than we ever realised.  It made me feel really proud of my boys.  Rowan climbed on the back of this bike (with Ayden's help) and sat down.  Ayden then sat on the front.  And he pedalled Rowan around the track several times.  They were both so happy.  They did something together that didn't need an adult.  Rowan relied on Ayden, Ayden was the big brother.  And he absolutely loved it.  When it was time to go, I left Ayden at nursery, and went to take Rowan home, and Ayden was absolutely heartbroken.  There was me, thinking it was me he didn't want to leave, and it was Rowan.  He didn't want Rowan to go home.  The bottom lip came out and he was genuinely upset.  It actually made me cry.  Through all the fighting, all the crap they have dealt with, they absolutely love each other to pieces.  There was not a hint of anything negative in Ayden when we left him.  I am so proud of them.

Some of you may know that we recently got a dog.  As if 4 children and 2 cats weren't enough.  We have a dog, yes we are nuts (I have proof on a piece of paper!).  His name is Luca, and he is 15 months old.  He is a Husky.  He is absolutely gorgeous.  Obviously, being a dog, there is a certain level of responsibility.  Katrina has taken on the job of 'Luca feeder'.  She feeds him twice a day, and it is one of her 'jobs'.  She seems to really it.  Luca, although technically still a puppy, (a rather LARGE puppy) is very well behaved.  Sitting down, he stands just a little bit taller than Rowan.  We were originally a little wary of him around Rowan and thought we may need to do a little bit of rescuing Rowan, where Luca knocked him over, or constantly licked his face, or something else.  However, Luca has been absolutely amazing with Rowan, and in fact all the children.  Ayden is not exactly gentle.  He hugs Luca so tight sometimes I think his eyes are going to pop out.  Ayden has fallen on him, stood on him, he's leaned against him.  He winds him up something chronic.  And Luca just takes it all in his stride.  I'm not going to say he's the perfect dog, he hates being left on his own and howls (sorry neighbours) and he pulls a lot on the lead, but we're working on it!  Generally though, it was one of the best decisions we ever made, and I don't for one minute regret it (the cats however may disagree, we're working on them too).  Obviously having a dog, means that he needs walking, regularly.  It's given me an opportunity to escape.  When I just want time on my own, the dog needs walking.  It's given me an opportunity to explore our local area a little bit (and get lost, which I did last week, and had to use google maps to get me home!).  It also gives us the opportunity to let Rowan experience things he hasn't really before.  He loves picking 'Fowers' and giving them to everyone.  Something so simple, but he hasn't ever really been around grass and outside spaces.  He does like going out.  He likes taking Luca for a walk.  Luca has increased Cameron's confidence too.  I think he likes being about to talk to his friends about his dog, rather than his poorly brother.  When we go out, people tend to comment more on our 'gorgeous dog' rather than our 'disabled son'.  Luca brings a lot of joy into our house.  And a lot of adventure too.

I'm just going to post a series of pictures now.  More of Rowan.  From laying with Daddy on the floor with his 'massager' that he was given by someone from 'Post Pals', a picture of the smile on his face when he received his new Bizzies, again, from someone through 'Post Pals' (notice how this charity really makes Rowan smile!?) to Rowan falling asleep on Daddy's lap, and picking the fluff out from between his toes.  All the medical things that go on with Rowan, and yet, underneath it all, or on top of it all, is a 3 year old little boy, just trying to live his life, the same as you and I, he just has to go about his a little differently.  His rules are slightly different.  And while you are teaching your child to not climb on things, I'm teaching mine how to safely climb on things to reach them.  While you're teaching your child to not touch things, and not eat with their fingers, I am teaching mine to do the complete opposite!  We all live life our own way.  There is no right way.  As long as it contains a smile, then it's your way.

 Rowan picking out his toe fluff (above)   Rowan realising he has 'big boy bizzies' thanks to Denise. (left)

                                                                             Falling asleep while having a 'Daddy cuggle'

 

                       'Look Luca, Fowers'

                                                                              Rowan's back is hurting, Daddy is fixing it with his massager, thanks to Ally.