Saturday, 14 July 2012

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.








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