Tuesday 25 October 2016

Dreams Really Can Come True!!

So, it's been a while since I blogged, sometimes there is just so much to blog about, that you don't end up blogging at all!  Not to mention that there seems to be absolutely no time to sit and actually type.  Sometimes however, something happens, and I am just compelled to write about it.

So, Rowan, as some will know, absolutely loves music.  He loves nothing more than to put his headphones on, turn the tunes up really loud, and sing as loud as he can.  He says it helps him with his pain, and when he feels a bit sad.  

Rowan's got quite an eclectic taste in music, ranging from Piano Guys, to Queen, Coldplay to Christina Perri and everything and anything in between, more recently adding in Taylor Swift.  However, if you look at Rowan's 'most played' list, there are just 2 bands on that list.  One being Imagine Dragons, the other, Sunset Sons.  Who? You may ask? (don't ask Rowan, he gets very cross if you don't know who they are!).  Yes, a band called Sunset Sons.  

We first heard them about 18 months ago, when checking out the supporting act for Imagine Dragons who we saw in Birmingham.  They were an instant hit with Rowan, and he absolutely loved seeing them as the supporting act.  Since then, his love for Rory, Pete, Robin and Jed has just grown and grown exponentially.  The release of their first album (Very Rarely Say Die) cemented Rowan's love for the band. In the height of any hospital admission, or rough day, while feeling frustrated, upset, in pain, and exhausted, he plugs himself in, and listens to September Song.  'hang on, it's not over, we can find a little somewhere to be, hang on, it's not over, just take a little moment to breathe'.  Being only 7 years old the lyrics for this song may, or may not, be meaningless to him, but it's amazing to watch him try to distract himself this way.

In August of this year, ironically during a hospital admission again, Rowan was listening to his favourite song, Remember.  We were waiting for doctors, and tests, and a plan, he was nil by mouth, and he was in pain.  As he has done a hundred times before, he plugged his headphones in, and turn up Remember so loud, I could hear it word for word, through the headphones.  I snapped a quick picture, and tweeted it to Sunset Sons, I thought they would like to know how much their music helps Rowan, genuinely!  To my utter surprise Rory tweeted us back!  A day or so later, Rory appeared in Rowan's bed space in hospital, while we were waiting to go to theatre for surgery.  I won't divulge the conversations they had that day, but I can say I think it was enlightening for everyone!  The nurses may have all been a bit weak at the knees (after spending 24 hours being briefed Sunset Sons and every single song by Rowan) but Rowan was the epitome of cool, calm and collected.  The one thing Rowan kept saying was that he only had to wait 7 years to come to a gig.  You see, all the gigs so far have been 14+ (except the festival ones) due to licensing and venue rules.

A few days later, another message pinged through twitter, 'How would the big man like to come to a sound check?' I knew how much that would mean to him, but I didn't want to get his hopes up, in case things didn't quite work out for him.  Turns out, it DID work out.  The long awaited sound check day was yesterday.  We came to Helen House for a few days respite, the plan was, we would go to the sound check, come back, put Rowan to bed and then Denise and I would go to the gig in the evening at the O2 Academy in Oxford, leaving Rowan literally around the corner at Helen House.  It was all set, and planned to perfection, as has to be done with a child with complex medical needs like Rowan!

Sound check time!!
All yesterday morning he was counting down the hours, minutes, and seconds to the sound check.  We had Remember on repeat, ALL MORNING.  345pm arrived, and off we went.  Rowan was SO excited, he had even picked a top he thought Rory would like!  As we approached the O2 Academy, we had a welcoming party!  Up the stairs we went, as the band were continuing their sound check, Rowan announces 'it sounds really real'.  We're not really sure what he expected, but he was in awe.  As we walked in the door, the reality of the situation hit him, and he just didn't know what to say, standing right in front of him, was the band he listened to every single day.  Priceless.  Rory asked Rowan which song he wanted (even though we know Rory already knew!!)  Remember, obviously!  Rowan sat on the stool, bouncing his feet in time, taking it all in.

Once the checks were all done, the band descended from the stage to say hi to Rowan.  Somehow Rowan ended up on the stage! Playing the drums and keyboards with Rory.  It's hard to explain how it feels, as Rowan's mum, watching a guy that doesn't really know us, or Rowan, or a whole lot about our 'back story' see Rowan for who he is.  Many, many, people shy away from Rowan, with his backpack, and tubes everywhere, drainage bags etc.  But not Rory!  I deliberately didn't want to give a whole sob story about Rowan, I don't like it when people feel sorry for him, or pity him. Rowan doesn't have it easy that's for sure, but that's just not how we see things, and that's not how Rowan sees himself.  

My favourite picture of the afternoon!  Drumstick up your nose Rory!
As Rowan was banging away on Jed's drums, and Rory was teaching Rowan the beginning bars of Remember (by the way Rory if you see this, can you let me know the notes, Rowan is trying to practice it, I can 'play' piano so can teach him it), under the watchful eye of Pete.  Dave and I had a little chat.  Dave said something to me, that no one has ever said before, and it is something that will stick with me forever.  'What are they treating him for?'.  Dave did not ask me 'what's wrong with him' which is what I usually get asked, and I hate it when people ask that, there is NOTHING wrong with Rowan, his body may not work like yours or mine, but there is nothing WRONG with him.  So I gave a little more information, while trying to watch Rowan.  He was in his element, quiet, taking it all in, cool as a cucumber.  It was time to go, and as we walked back to the hospice, Rowan was singing, and chatting, and he was just amazed.  He said it was the best day of his life, ever.  His dream literally had just come true!

On return to the hospice, Rowan was telling everyone, whether they were busy or not, where he had just been, and who he had just met.  At about 1845, Denise and I were getting reading to head out to the gig, when my emails pinged.  Amongst it, was a Twitter notification,  I quickly checked it.  Went and got Rowan as quickly as I could, and got him to read it.  'We've sorted it so that rowan can come to the gig toni-' Rowan stopped reading, ran around, screaming, jumping up and down, he was SO excited, it was priceless.  I videoed it.  Suddenly he was getting in the wheelchair, barking orders at nurses for medicines, and jumpers, he was over the moon to say the least, kicking his legs, and squealing!

Waiting for the gig to start!!
Off we went, where we found a lovely security guy from Showsec, who handed us a pair of ear defenders that had already been waiting for Rowan, and escorted us upstairs, across the room, to the foot of the stairs to the stage.  Harriet from the O2 Academy also appeared, and got Rowan a chair so that he was comfortable, and introduced us to another security guard, who stood with us the entire gig!  It was amazing!  Rowan was exhausted, Sunset Sons didn't start their set until 915, but after a power nap from Rowan, he was blown away.  The shout out to Rowan when Remember was played, was something he will never ever forget, watching Pete play the bass TO Rowan, was amazing.  The high fives, and fist bumps as they entered and left the stage, Rowan really was treated like a rock star (we are working on the black Rory!).  

Thank you so so so much Dave!
I spent some of the gig watching Dave, watching Rowan.  Rowan was just a little boy, clapping along, singing every word, completely immersed in the music he loves.  Dave was watching, and smiling at him, you did that!  Dave, you made Rowan's dreams come true, and for that we will be forever grateful!  You may never truly understand what that experience meant to me, as Rowan's Mum, it's not something I can put into words. I honestly felt like you guys didn't see his disability, his difficulties. Last night Rowan was in so much pain, his muscles literally gave up holding him up, we had to support him. But there he was, singing his heart out, enjoying himself, something far bigger to concentrate on than his painful legs, and back.

When the gig was over, we headed, escorted, down the back stairs, avoiding all the tipsy crowd, where we were met by another Showsec security guard, and Rowan's wheelchair, Dave took a selfie with Rowan, which is on Twitter! We walked back to Helen House, and Rowan was absolutely exhausted in every possible way, but buzzing!

This morning he got up, and has played the album ALL morning. He even sang responses to questions, in the tune of various sunset songs.....it's amazing how he can turn 'I need, fluconazole, it's already 8 o clock' to the tune of 'I win, you lose, it's only for us two'. He went into the hospice's music room, and was practicing the drums, and trying to remember the keyboard part Rory had taught him. Rowan said to me this morning 'I don't really have any friends at school, but it's ok now, because Rory said I am his buddy, so now I have a friend'. It's hard to explain sometimes, how lonely and isolated Rowan can be. He doesn't get invited to birthday parties, or play dates, he isn't included in many things children his age are doing. People don't always understand Rowan's needs, and he has to miss out, because the forethought wasn't there, or people are too afraid to just ask. Yesterday, Rowan's needs were thought about, nothing was too much trouble for Dave, Harriet, or the Showsec team. Rowan was treated like a VVVIP!!

Dave, thank you so much, words will never be enough. You made one little boy realise that dreams really DO come true if you just be yourself. Sunset Sons, you guys made Rowan feel important, and loved, and gave him an experience he will never forget. Rory, you are absolutely amazing with Rowan, don't ever change, and thanks for making Rowan feel like he has a friend in this world. Harriet, I have no idea what strings were pulled to make last night happen, but we are eternally grateful for everything you did, I mean EVERYTHING! And to Showsec, for ensuring Rowan was safe, and looked after, from the minute we arrived, to the minute we left, and not making us feel like an inconvenience!

Dreams really DO come true.

Tuesday 29 March 2016

The verdict is in......undiagnosed.

It may come as a bit of a surprise for those who know me, that I didn't really accept that we were 'official' members of the undiagnosed club until 9 months ago.  Rowan had lots of labels, which I won't bore you with again, and life over the last almost 7 years has been complicated, rough and down right terrifying at times.  I was living in a kind of denial for most of it if I am honest. On the outside it would appear that I understood and I was fully on board with the whole 'no diagnosis' thing, and I was comfortable with it.  And I was, logically.  I could say it, but I didn't feel it.  Deep down I still thought we could find out what was going on, and either give him a medication, or a trip to theatre, or the right diet or change of treatment plan and within a few months I would have a relatively typical little boy again, and that chapter of the story would have ended.  Just like had happened with Ayden and Cameron when they were diagnosed with Coeliac Disease.  I wasn't expecting a 'cure', that I accepted a long time ago, but I didn't expect this 'no diagnosis' thing to be an ongoing situation.  I mean he has lots of 'symptoms' and he has lots of 'complexities' and he has had a ridiculous amount of tests, and we are under the world famous children's hospital along with many other specialists, and professionals.  Logic says there is enough evidence, and enough professionals involved that SOMEONE would know what's going on, right?  Wrong.

We're in this 'no diagnosis' limbo for the foreseeable, it's not just while we're waiting for test results, it's not just while we're waiting for a referral to a new doctor.  There is no medication, or diet change, or surgery that will fix all the problems, and there is no 'eureka' moment imminent.  There is no 'final piece' of a puzzle that will complete the picture, we have lots of pieces from lots of puzzles, and we're trying to fit them all together somehow.  You know when you go to the doctor, with a lump.....and you go through the process of blood tests, and scans, and ultrasounds, and you're terrified the whole time, what is it, what could it be.....imagine that, every....single....day.  That anxiety of what tomorrow could bring.  What if?  What if?  What if?

With Rowan at the age of nearly 7, I think every day 'What if?'  What if today is his last day?  What if this opportunity never comes again?  What if we never get a diagnosis?  What if....this is it?  Those 'What if's?' never go away.  This 'undiagnosed' situation isn't temporary.  Our journey with Rowan has a beginning and a middle.......the end is pending.  It's hard work, it's frustrating, it's lonely, stressful and demoralising, it's depressing at times, and it's scary.  But......it's not all bad.  Rowan is Rowan, regardless of whether he has a diagnosis or not.

It has taken me a long time to come to terms with the fact that being undiagnosed isn't a temporary stage, it's not just that we haven't 'looked hard enough', it's not that we are waiting for results.  We've done the tests, some were pretty horrific, and some, as you may know, went horribly wrong.  The results are in, they have been calculated and verified, and the verdict is in.  UNDIAGNOSED.  It was an adjustment and a lot to get my head and heart around.  

So, I have finally, officially, logically and emotionally accepted it, and have come out of the closet. We are HAPPY to be undiagnosed, and we are PROUD to be a part of a pretty amazing, unique, and diverse community that is SWAN UK, every single one of us different, yet every single one of us united.  And from this acceptance, has come motivation.  Never will we let an opportunity go astray and never will an opportunity to educate a person about being undiagnosed be missed.  To you we may just be one undiagnosed family, but actually there are thousands of us.  

Friday 29th April 2016 is Undiagnosed Children's Day, this is a day where 'we' (members of SWAN UK) raise awareness for our children's situations.  To try and raise a little bit of understanding as to why being 'undiagnosed' is important to us, and some of the additional challenges we face.  All families who experience disability face challenges, many of which are similar, and yet some of which are unique to our community.  We also like to raise the profile of SWAN UK so that other families out there can find us, and we can all stick together through the good times and the bad.  Did you know 75% of parents, who's child doesn't have a diagnosis says that they feel isolated?  I am one of that 75%!  Just by networking other families together, through social media or through local meet ups and coffee mornings, that figure should reduce.  Why should we all care??  Because every year 6000 babies are born, and will have a disability that will be undiagnosed.  In 2009, Rowan was one of those 6000.  It happened to me, it could happen to you, or someone else you know!  It matters because Rowan matters.  It matters because I matter.  The 6000 babies born every year matter.
Rowan, 4 weeks old, before it all began

Tuesday 9 February 2016


Better late than never.
Isn't that how the saying goes?  I have been itching to write this post for 2 weeks and I have had all the right intentions, however between the demanding children and their needs, and university work, and meetings, and appointments, plus trying to factor in sleep it just hasn't happened!  Until today that is.
A couple of weeks ago, whilst Rowan was an inpatient at GOSH, I got the opportunity to go to the Rare Disease AGM.  I had absolutely no idea what that was, but, Lauren (from SWAN UK) invited me to support another SWAN Mum, Lisa (Click here to see Lisa's blog), who was speaking.  To be honest it's everything I hate.  People, strangers, new environment, and a real lack of what exactly it was, however Lauren can be somewhat persuasive when she wants to be, and off I went, leaving Rowan at GOSH with the nurses.  It was time to practise 'adulting', but do I know how to be an adult?  I wasn't so sure!
We arrived at the venue, found where we needed to be, and got a coffee.  There was a bit of 'hanging around'.....which I believe other adults may have called 'networking' but, you know, I am new to this game, and yet to learn the rules!  The AGM then began, there was quite a lot of paper!  Lots of lists of names of attendees, and I think the thing that struck me most, was all these names, and then 'who they were' written next to them, there were lots of people from lots of different organisations.....I was sat in a room full of professionals, me, and them........professional adults.  Crap, I was still a beginner to this 'adulting' and here I had landed myself in a room of 'professional adults'.  I felt like a fish out of water.
However, Alistair Kent, who is the Chair of Rare Disease UK, began to talk.  Rare Disease UK is an initiative of Genetic Alliance UK, in a similar way that SWAN UK is also an initiative of Genetic Alliance UK.  Rare Disease UK supports those people with a 'rare disease' and SWAN UK supports those who 'have no diagnosis'.  There were technicalities around the AGM that went over my head, but the whole experience was mind blowing.  As Alistair Kent began his speech, there was a realisation on my part, he GOT IT.  Everything he said, was true.  Everything we discuss, as parents, privately, within SWAN UK, came out of his mouth.  I got goosebumps.  There was this big realisation that, SWAN UK, is not just a little desk in the corner of the room somewhere, in the dark.  SWAN UK is a part of something far, far bigger than I had ever considered, going right up to the government.  Whilst living without a diagnosis does have some unique challenges, specific to a lack of diagnosis, there are also a number of similarities 'no diagnosis' shares with 'rare diseases' and this was echoed by Alistair Kent.  A man I had never met, was talking about some of the struggles, and the complexities that we face. 
In that one singular speech, from a stranger, I suddenly felt validated, that someone cared, that someone was looking out for us, that someone was trying to make things better for us, that rather than just being 'us' over at SWAN UK we were just one part of a very big community, rallying for change, shouting loud at the right people to be heard.  It was amazing. 
There was a lot of technical information, lots of damning statistics, lots of comparatives from a previous AGM, case studies, a discussion about a new centre opening up at BCH, lots of very impressive adults, talking about very adult issues, and plans.  And I just sat there in awe, inspired.  I literally felt like the world just opened up, and I wanted to be a part of it, but how could I be a part of it?  I was still only practicing at being an adult, and I don't like people, and I don't like new situations, and I don't like anything that would be required to get involved in anything.
However there was this overriding emotional response to the day, that I just wanted to DO something, I want to be a part of something that was bigger than just me and the kids at home.  I wanted to be a part of the change in those statistics, and I wanted to become more experienced at being an adult.  Throughout this complicated, stressful, frustrating, journey with living with a child without a diagnosis, the times I have felt most proud, are the times my knowledge has helped someone else.  I'm not talking about 'solving' someone else's problems, but by fighting my way through the system, it means the next person doesn't have to fight so hard.  That is what I want to be doing, trying to make future generation's lives that little bit easier.  But how can I do that?  How can I get involved in that?
Thanks to the Rare Disease AGM, and Alistair Kent's inspirational speech, I am tackling all those things I don't like, all those things I struggle with, head on.  I am going to be a part of the change, whether I like it or not.  I'm not saying anything else about this right now, but watch this space........
And a big thank you to Lauren, without your persuasion, I would never have been inspired.  You may regret this in the near future, but thank you for letting me practise at being an adult, for a little while.  Who knows where this may take me! 
And if you want to find out more about Rare Disease UK, here's the link Rare Disease UK

Tuesday 20 October 2015

Fundraising for a Quality of Life!

It's been a while since I have written a blog post but as many of you know I have not been doing nothing.  Behind the scenes, and through Facebook, Denise and I have been working our socks off trying to get our fundraising for Rowan off the ground.  It's been a rocky process, and I really didn't think it would be this difficult, but it is what it is, and I will not give up or be beaten!

So, a question I am often asked is 'what are you fundraising for?'.  Now if you'd been with us at the beginning of the journey you would know that we were fundraising for the down payment for a Wheelchair Adapted Vehicle.  Rowan was meant to be getting a power chair, and therefore we needed an adapted car to transport the power chair.  More recently however, there was some difference of opinion amongst professionals and therefore, as it stands at the moment, Rowan will not be getting a power chair.

I was really hurt and upset at the time, and I had to take a time out.  It took a few days, maybe more for me to get my head straight. I was worried that I had misled everyone who had already donated, that I had let everyone down.  I was ready to give up fundraising and hand back all the prizes we had had donated.  Give everyone back their money for tickets to the disco we had arranged, and call it quits.  If i had done that though, it would also have meant the money we had in our just giving account (nearly £300 at the time) would have gone elsewhere, and I didn't want that to happen either.
The fact still remained however, that Rowan was in pain every single day.  The fact still remained that as his Mum all I ever want to do is take that pain away, and I can't.  A significant part of my day is spent distracting, soothing, making hot water bottles, rubbing, massaging, stretching muscles, strengthening muscles, encouraging pacing, running warm water over various body parts, and crying inside.  It's horrible having a child who is in pain, and knowing there isn't much you can do about it, but you try anyway, just in case THIS time it makes it go away, maybe it's the 876th time you rub his back that's the charm.  Some days are better than others, some days are a lot better than others, but whether it's a good day, or a shockingly awful day, the one thing we, as a family (and Denise), are determined to do, is give Rowan and his siblings the best quality of life we possibly can.   His pain will not rule our lives, and it will not limit his life experiences, nor his quality of life as long as I breathing.

This determination not to be beaten was, ultimately, the thing that made me dry my tears, put my big girl pants back on, and work out what the next steps were (with lots of help from Denise).  So, the underlying purpose of fundraising was to make sure Rowan had the quality of life he deserves, the quality of life he fights every day for.  That has not changed, and will not change.  What has changed however is the aim of fundraising.  We have 2 immediate targets, that will enhance Rowan's quality of life, and a longer goal as well.

The first is to purchase a Nutribullet pro 900.  Some people may know what that is, and some may not.  In Rowan's words it is a 'fancy schmancy whizzer'.  Rowan currently can't eat very much, both in variety and in quantity.  In order for him to taste things it has to be a smooth consistency which will drain out of his gastrostomy (the tube in his tummy) into a drainage bag (I know it doesn't sound pleasant, but it's a part of our lives).  This does cause him some pain, but he says it's pain he can manage and it's worth it. There becomes a point (after 2 years) that you just get bored with the same jelly, yoghurts, custard, ice lollies and soup.  I had a hand blender, but it was inconsistent, and unreliable and basically has now given up (I used it to puree food for Katrina as a baby 12 years ago, so it did it's job!).  The last few times we have visited the hospice, one of the things Rowan has looked forward to is mealtimes, they have one of these fancy schmancy whizzers and it means he can eat ANYTHING after it's been in the Nutribullet, because it's more powerful than other products of a similar nature, it's a fantastic piece of kit!  Rowan is extremely excited about the prospect of eating things he has missed out on, flavours he has missed, curries, cheesy veg, spag bol, lasagne, all those things I cook everyday that smell so yummy.  I have even said I will whizz a McDs burger and see what happens, we can experiment!  These currently cost approximately £130, but will make such a huge difference to Rowan!

Rowan much prefers it in blue though!
The second item is a bit more boring.  As many people who read my blog and have liked Rowan's facebook page will have seen, we like to take every opportunity and run with it, wherever it may take us.  We travel all over!  From Nanny and Grandad's in Sussex, to various hospitals, up to Louise in Tamworth for yummy cakes, to the Natural History Museum, West Midland's Safari Park, Paulton's Park, all over!  And we have many, many more destinations to visit on our list!  Obviously this means lots of travelling time in the car, and up until the last 9 months or so we have been just fine, however, more recently Rowan is experiencing more and more pain in his car seat.  His back hurts, his legs hurt, and he gets pins and needles in his feet.  He can't be in his car seat for more than about 45 minutes before the pain sets in, and even after we have stopped and got him out the car, stretched and done anything we can think of to make him more comfortable, after another 20 minutes he is back to being in pain, crying, complaining, screaming.  We have tried everything from rear facing, to forward facing, crossing his legs, leaning them on the seat in front, a tens machine, nothing really works that well.  Just to get to Great Ormond Street is about a 2 hour drive (on a good day) that's 2 stops each way, and lots of tears (Not just from Rowan usually!)  If we are travelling 'to' a destination, it means before we even get there he is in pain, and sometimes that does impact on the experience although we try hard not to let it, although the journey home is often.....challenging.  I have researched, a lot, and asked a lot of questions, and it would seem the way forwards is a new car seat.

Only, as soon as you add the infamous title of 'special needs' it automatically gives the right to suddenly multiply the price by 10!  Rowan needs a car seat that will support his back, keep him sitting in the best position, prevent him from slipping down and sitting on the bottom of his back, support his feet, and just make sure everything is lined up exactly how it's meant to be.  This then, should mean that his pain is reduced, and he can rest properly in the car, and be comfortable while every part of him that needs supporting is supported in the right way.  There are 2 car seats that I have come across that will give him what he needs, both, I have been told are approximately £2,500+  Is it worth it?  Absolutely.  You just can't put a price on things like this!

You may see Rowan walking around and can't work out why he needs these things, because he 'looks' just fine, but looks can be very deceiving.  Rowan's muscles just aren't as strong as they should be, he has to do exercises every single day, and despite these he still gets completely and utterly exhausted, to the point where he physically can't walk up the stairs and his legs give out from beneath him, he gets pain from doing the simplest of things, that we all take for granted.  Unfortunately Rowan's body just doesn't do what he needs it to do, no matter how much he wants it to, or how hard he works for it.

In order for Rowan to live the life he deserves, the life he fights so hard for, he needs a bit of an extra helping hand.  I would love to be able to afford these things on my own, and not have to ask for help, but it just isn't going to happen.  I know in the current climate everyone is strapped for cash, it's not easy for any of us, but every penny (or cent, or euro etc) gets us that little bit closer to our target.  Every penny someone donates, is making a positive impact on Rowan's quality of life.

Rowan has his own just giving page if anyone would like to make a donation, I just want to point out as there has been some confusion, the money you donate does go directly to Rowan.  Tree of Hope are a charity that helps families like ours to raise money, they hold the money for us, and we apply to them to release the funds, it gives those who donate a reassurance that their donation is going on what we say it is, it also gives us the advantage of a text to donate number, and a charity number as well, but it does go into a fund specifically for Rowan.  Here is the link Rowan's Reality

However, if, like many people you want to get fully involved in the process, Denise and I have worked our socks off organising a Halloween Disco this Sunday (25th October) in Kingsthorpe, Northampton.  There are about 20 tickets left, and the information is below, if you'd like to come, let us know! There is a mobile number, and an email address below, or message us through Rowan's facebook page and we will get you sorted out.  Denise and I have a couple more ideas for fundraising events once we have gotten over this one (and some time to recover) and we are grateful for every single one of you who are behind Rowan, and believe in him like I do, even if you can't donate, even if you can't come to our events, please share his fundraising page, like his facebook page (Rowan's Facebook Page), and see for yourselves the difference you are making.

Wednesday 15 July 2015

Single Parenting and Hospital Admissions.

I realised a few days ago, that no one really understands the logistics of what happens with Katrina, Cameron and Ayden when Rowan needs to go to hospital, whether that's the local hospital, or GOSH. You would assume they'd go to family or friends, I mean that's what happens with most siblings isn't it? My situation is a little different however.

Due to circumstances I don't have family who are able to help out, either through work commitments or logistics, and actually the vast majority of family would not offer anyway, due to them just not being part of our lives. The 'other' side of the children's family either don't know my children, have never met them, or are not allowed contact with them, which has been decided by a court. This only leaves friends. I don't have many friends, in fact, when it comes to needing someone to help out with the kids the list is pretty much non existent.

So what happens with the kids? Depending on which hospital Rowan happens to be in, and what days of the week it is. If it's certain days of the week, I have one friend who helps out, whether it's sitting with Rowan, or looking after the other kids, or running to the shops, or whatever will be helpful. If it's the other days of the week, I am alone. It's hard. Very hard. 

If he is in the local hospital, my routine looks a little bit like this:

6am Get up get the kids ready for school, including putting dinner in the slow cooker, hoovering, dealing with the dogs, tidying up, putting a load of washing on, putting the dishwasher on.
815am Take the kids to school
830am Go to visit Rowan, trying to get there for 9am and wait for ward round
9am-3pm deal with doctors/nurses/Rowan, getting him up and dressed and washed, and fed, and entertained, medicines done, out for ward leave, IV to do, checking his temperature, cuddling him, comforting him, popping to the shop to top up supplies, dealing with blood tests and other tests, as well as a constant influx of calls, texts, and emails about everything, and yet nothing all at the same time!
3pm leave the hospital to go pick the kids up from school
430pm arrive back at the hospital after picking all the children up, nipping home to collect ipods/tablets/toys/dvds and anything else Rowan has requested.
430pm-6pm entertaining all the kids in a very small space, getting homework done with them, and reading, games, watching TV, more meds, more doctors and nurses to deal with, emptying drainage bags, getting Rowan's Pjs on, teeth brushed, sorting out what needs to go home, and what needs to stay, tidying up his cubicle.
6pm-730pm I.V.s and TPN connection to happen, getting Rowan into bed, and settled for the night, leave him crying because he wants to come home.
730pm head home with the older 3 kids, now grumpy and tired!!
8pm- Arrive home dish up dinner, to find I forgot to buy potatoes/chips/rice/cheese etc. Hunt in the cupboard to find something to substitute! While getting the kids to feed the dogs, tidy their rooms up, find their stuff for tomorrow.
830pm Kids eat dinner, put their Pjs on, and go to bed, then I eat (or not, which is more likely).
9pm Spend time playing with the dogs, topping up their water bowls, fold the washing out the tumble dryer, put the wet washing in the dryer, put dirty washing in the washing machine. Unload and then reload the dishwasher, clear up after dinner, sort out whatever Rowan sent home or requested for the next day. Catch up on emails and messages on the answerphone, write a few emails, open the post.
1030pm Call the hospital to see how Rowan is.
11pm Go to bed, but now I can't sleep.
12am, the hospital rings, Rowan's TPN pump won't stop beeping and I have to talk them through step by step how to shut it up and get it running again after they have done his I.V.s
1230am, try and sleep.

It's absolute chaos as you can see, trying to run a house and feed the kids, and keep them all at the things they need to be at. This is a normal day, on a Wednesday or a Thursday, it's even more complicated as it's Guides/Beavers/Cubs. But it needs to be done. The dogs don't get walked, I don't get to go for a run, I don't get to clean the bathroom/toilet/mop/dust, I don't get to go food shopping. It's lonely, and isolating, stressful and exhausting! The few times I have asked people to help me out, I have either been told no, or people are busy, that they find it hard to see Rowan poorly, or something else. I understand people have lives to lead, and sometimes I get really upset that no one will give me a hand. I may appear that I have it under control, but I am often falling apart. I often go all day without having eaten anything, because I just can't get away. When Rowan is really poorly I don't even get to the parents room to make a coffee as he just wants to be with me all the time. Sometimes I physically can't eat, the emotional drain of it all, and the worry of him being poorly, he never has to stay for something 'simple' as I can do so much of his care myself, so when he is in hospital, it's serious, and having to leave my 6 year old in hospital all on his own every single night, hurts in ways I can't explain. Would you leave your 6 year old alone in hospital overnight, I mean it's not like a sleepover is it? He's there because he is very poorly, and the time your child needs you is when they are poorly and I just can't be there with him, because of the circumstances. How would that make you feel? What would you do?

If Rowan is in GOSH the whole thing is completely different. Due to having no one around to help out, after several years of constant fighting and arguing and failed placements and complete nightmares, and me having to sort childcare out mid admission because whoever has the kids can't/won't have them any more, the social worker at GOSH said enough was enough and she intervened after I literally had a breakdown mid-admission with the stress of it all. My older children now go into foster care while I am at GOSH. I usually have to fight for it for each admission, and it has to go to panel, and there is a whole process to go through and usually requires a lot of input from other professionals to justify the hospital admission. I didn't want this for them, but I have no choice. Usually they get to meet the foster carers before they go into care, see where they will be staying, get to see who else lives in the house, any pets, choose their bed (for the boys), ask any questions they have, I can talk to the carers about the best way to manage the kids, and feed them etc. Then when they are in foster care they can ring/call/facetime (the brilliance of apple products and wifi!) me as much or as little as they want. The placement is stable, it's not going to fall through, and while it's usually a little more complicated than that, arranging time to see them, and spend time with them during the placement etc. I'm not going to find myself with nowhere for the children to sleep or stay. So for this particular admission we had weekend leave, so I picked all my kids up from school on Friday, Saturday we nipped to the shop, and did a bbq and did marshmallows and smores, and ice creams, the kids had a water fight, and watched a film (or went to bed early in Rowan's case) and had them until Sunday evening, when I returned them to their foster carers and return to GOSH ready for the second week.

When I say my kids are going into foster care, it's always assumed it's a bad thing, or a negative thing, or that something has happened, or that I have done something wrong. It's not like that, and I wish they would call it something else rather than foster care, respite care, or something. It's pretty rare to be in the situation I am in, and therefore lots of the protocols we have to go through are exactly the same as when they remove children from parents and that's hard to stomach sometimes. Then it's a case of making sure the forms are filled out in a way that reflects the situation, as they just don't work otherwise. For example, I usually I get letters a few weeks after I have got home again with dates and times for medicals, which is standard practice when a child is put into care, and I have to ring up and cancel them, because my kids are back at home, and they don't need medicals anyway. There needs to be more awareness and different processes to go through in this situation, however unusual or rare it is, it still happens!! It's hard enough having to leave your children with strangers, even though you know they have been through rigorous processes, without leaving them with a big 'LOOKED AFTER CHILDREN' form, that makes you feel inadequate as a parent.

So as I type, Katrina is with one foster carer, and the boys are with another, and I am at GOSH with Rowan. It works, in as much as the kids all get a break from each other, and they are in a stable environment continuing with their routine and going to school etc. It's hard for them emotionally to be split up, and not at home, and not with the dogs, nor in their own beds. I would love to say it gets easier each time, but it doesn't. This is one of those things that happens when there is a practically non-existent support network. We get through it, but it's not one of my favourite things that's for sure, and it usually ends up with me making myself ill! That and the kids are all over the place emotionally, one has meltdowns, one cries all the time, and the other gets super hyperactive!

I guess the point of this post was to give you all a little insight into how absolutely chaotic life can be with a child who needs frequent medical attention and hospital stays. Especially as a single parent. Especially with a minimal support network. My advice to you would be, if you know someone in a similar situation, don't assume they have it under control. Just because it happens regularly, does not mean it's easy, or organised. Offer to help, whether it's school runs, bringing dinner, bit of childcare, visiting the hospital, bringing lunch, magazines or coffee, offering to walk the dog, or have the kids for a sleepover. I can tell you now, someone in the situation I am in, would be more grateful than you can ever imagine. That person would also often be the first one to offer you help if you were in need of it. Friendship is a two way street, sometimes it's hard for people to ask for help, and there are only so many times they are willing to ask and be told no before they start believing no one cares. Don't just say you care, when there is a crisis and help is needed, show that you care.

Friday 3 July 2015

The Plan is......No Plan

So as you all know the clinical error occurred (check out Clinical Error).  Since then we have really been trying to adjust, dealing with a few line infections, and waiting for more tests so we could move forwards.

In January we went into GOSH for 3 weeks for various testing.  Some were routine, and some were meant to be diagnostic.  I won't go into the tests themselves, but the main one was a nuclear transit study, he was only the 3rd to have that one,  It was pretty traumatic, he ended up on ketamine for pain relief, but we got the test done.  This test involved a number of scans, every day for 5 days, watching a very special dye go through the system (it's not the same as other dye type tests although I don't know why).  After a couple of days the dye wasn't moving, I didn't think anything of it to be honest, and carried on, by day 4 it still hadn't moved, so I asked the guy doing the scan, and he said it did seem to be stuck.  Uh oh.  We were meant to be going home for the weekend on the Friday, after the scan, however the scan revealed all the radioactive dye was still inside him.  Stuck.  We had to have a weekend of laxatives to get all the dye out, thankfully it worked (there was a little bit left but they let go) and we moved on to the next tests.  I was really hopeful this would lead us to a diagnosis and a plan, it was an abnormality, something we probably would have seen in manometries if they had been successful!
Just a picture of Rowan,
because he's worth it!

I had a few chats with a few doctors before we came home, and it seemed like an ileostomy was going to be the way forwards.  (an ileostomy is a stoma, that brings his ileum to the skin, and then a bag is attached on the outside, and basically his 'waste' goes into the bag, rather than him doing a number 2 on the toilet) I spoke with his consultants, I tried to get my head around it, I googled, I asked friends who had ileostomies, I spoke to nurses.  I complied a list of questions, I asked about the process, the positives, the plan afterwards.  It looked as though once the ileostomy was in and healed, we would go back to gosh to try feeding him again, and then increase the feeds and reduce the TPN and we could go back to pre-clinical error state.  For the first time in a really long time, something inside me had hope.  Hope that he would be able to go swimming, be off TPN during the day, be able to eat whatever he wants, whenever he wants, gain weight be strong again.  I could see a little bit of the future, and if you'd asked me 3 years ago, if I was happy with the way things were with Rowan, I would have said no, but now, I would do anything to go back to that.

So, at the end of April, I drove down to GOSH for a meeting with the motility team and his usual TPN team.  The purpose was to discuss the plan (aka ileostomy).  I phoned the CNS the day before and clarified that's what we were there to talk about and she said yes, and that the problem they found in January, no one had said would 'fix itself' and therefore everyone was on the understanding this was the way forwards.  I know it sounds silly, to phone the day before and ask about the content of the appointment, as surely that's what the appointment is for, but I don't manage things very well when unexpected things happen, no one does really, but I really really don't manage it well.  So I drove down to GOSH, finding that part of me that I needed to be Rowan's advocate and ask questions, and have the confidence to air my opinions if they differed.

First off, the first thing we do is height and weight.  He had lost weight, quite a lot of weight in fact.  Bugger.  So the appointment started off with his usual team, tweaking his calories, adjusting the rates and volumes, adding in more of the things his bloods said were lacking, had a look at his medications, nothing remarkable, just a typical nutritional appointment for us.  Then it was time for the motility consultant to talk.  He started explaining to me what they found in January, that the left side of his colon doesn't seem to work.  (I already knew that).  That's why we have so many issues with constipation (I knew this too).  So then his usual consultant said 'so the plan will be an ileostomy' to which the motility consultant said 'no'.

No.  No?  No.  No?  No.  Huh?  The room was silent, the atmosphere could be cut with a knife.  Blindsided, shit.  His consultant turned to the motility consultant and just said 'why?'  I could tell she was as shocked as I was, if not more so!  He explained that the finding, while significant, was insignificant.  While it's an issue, and previously would explain some of his issues (pre clinical error) it's currently not causing an issue as such.  I think I must have had that 'what the heck' face on, and I just couldn't talk.  So he tried explaining it to me 'if we get Rowan feeding, IF, then this will become a problem and he may then need an ileostomy, however, if we put an ileostomy in now, it won't make any difference to his current feeding situation, therefore it's unethical to put him through surgery, when there is no benefit'.  I understood.  But I was still confused.  So basically, we needed to get him to feed.  Why can't he feed?  Why can't he eat?  Why can't he have milk feeds into his jejunum (small bowel)?  Why?

'The clinical error probably did something, to something, we just don't know what either of those somethings are'.  Oh.  Shock again.  Ok so more tests right?  More tests that we run to find out what those somethings are? No.  They had a bit of a conversation amongst themselves, trying to work out the plan, if there had been any tests that they could do that we haven't already done, that weren't potentially too risky considering the clinical error, and the answer was no.  Everything they have done shows the problems we have when he feeds (along with videos I have sent them), however they just don't know why, what, or how.  Completely undiagnosed once again, a complete mystery.

The plan was NO PLAN.  The plan was 'go home and have fun'.  Accept that Rowan is on TPN long term, that at the moment we can't feed him, this is it for us for the foreseeable.

I kind of went into shock for a couple of days, literally.  I couldn't talk about it, couldn't process, and certainly couldn't accept it.  TPN was meant to be short term, temporary, we were nearly off of it, now we're 100% reliant on it.  This was not what was supposed to happen!  I went through a whole grieving process I think over the next few weeks.  I had to accept a lot of things, that I hadn't been willing to accept before.  Adjust to this being our life, and not just a phase.  Then I had to start telling the professionals.  This no longer had an 'end date' that I needed to get to, before everything would be 'normal' again, and they needed to be aware of that, and look at long term, rather than 'in the interim period'.  This then meant a lot more meetings, a previous consideration of reducing Rowan's respite hours was thrown out the window (sharpishly) and he was re-awarded the same as he already had (phew).  School plans have been considered, and we're trying to get him on a different timetable to access more of the curriculum, as he isn't coping for more than a couple of hours.  Physio and OT and I had discussions around ways to help him be independent, while being dependent.  My life was once again turned upside down.

But it's worth it, it may not be the life I wanted, it may not be the life he deserves, it may not be the life he would have had, or should have had, but it is his life.  And no matter which cards he has been dealt, he will end up with a royal flush, and a big confident smile.  His cards will mean he is a winner every time.  I will make sure of it!

Thursday 23 April 2015

How do we feel about being Undiagnosed?

Friday 24th April 2015 is Undiagnosed Children's Day.  A day where we (those of us with children without a diagnosis) try to spread as much cheer awareness as possible.  By celebrating our amazing children, writing blog posts around it, composing exposés about how life really is for us, the battles we truly face, the let downs from services, and revealing our feelings about how we live life with a catalogue of unknowns, all down to the fact we can not fill in the 'diagnosis' box, or tick a pre-assigned box on a form.

I could do the same, but I won't.  I have more than my fair share of negative stories to tell, the number of let downs, the number of battles and arguments with services to fight for what Rowan deserves.  The number of days I have spent terrified for his health, the amount of hospital visits and tests we have done, the number of inpatient stays, and blood tests.  The things Rowan regularly goes through are well documented.  I could write a thousands posts on just these, and some of the stories may shock you, and leave you horrified.  They may even upset you.

Instead, this post will be about the other side of life without a diagnosis.  Some of you may not understand what 'other' side I am talking about, so read on, after a cute picture of what my 'without a diagnosis' child looks like.

                                                                A recent hospital stay, doing music
                                                             therapy with Thomas's fund as distraction.
So, this 'other side' of having a child without a diagnosis, from my perspective.  I don't know what the future holds for Rowan, and I can't speculate, no one can.  The doctors have no new ideas, and while we occasionally get a little bit of information that tells us something new, it doesn't explain the whole picture or lead us any closer to that elusive label.  Having spent a number of years looking for that label, over and over, desperate to grasp hold of something, to explain it, to negate my assumptions I did something wrong, I failed, I could have done something different, I missed the whole point of becoming a Mummy.

When Rowan was 18 months old, he was admitted to Great Ormond Street for his long stay.  I could tell you exactly what his weight had been for the last 12 weeks, and on which dates, I could tell you blood test results, I could tell you exact dates he had met certain milestones, and I could recite every single medical person's phone number, email address, postal address, and full name and job title, the last time I had seen them, how long the visit lasted, and exactly what was discussed.  I thought that that was my job.  The doctors looked to me for those answers, those details, I had to have them.  If I didn't have them, I wasn't doing my job properly.  I soon discovered I was very, very wrong.

Someone, not long after we had been admitted, asked me what Rowan liked to play with.  He was a very poorly little boy, and it suddenly dawned on me, that I had absolutely no idea who this little person in front of me really was.  Don't get me wrong, I loved him with everything I had, I just had no idea what he liked to play with, what his favourite colour was, what he liked to watch on TV, what kind of music he liked, he was 18 months old, the age they really, really start to build into a little person, and I'd been missing it.  My little boy could be gone, and I never would have gotten to know him.  That day, my life, our lives, and mine, Rowan's, and all the other children's relationships changed, for the better I believe.

I stopped asking what blood results were, I stopped examining, weighing and measuring bodily fluids, and getting worked up about his weight, or lack of.  We were in a hospital, the nurses and doctors were there to deal with all that.  I took this opportunity to become his Mummy, and his friend, finally.  I went into the hospital toy room, and had absolutely no idea what to choose for him to play with, he had hundreds of toys at home, which ones did he actually play with?  I didn't know.  It took me a few days, but I worked it out, he likes the little tykes car, anything that played music and flashed, the noisier the better, he hated messy play, or getting dirty, I was started to learn who he was, and he was a cheeky monkey!! We started to learn makaton together, and we were finally communicating, together.  

I came home from that hospital stay with a whole lot of medical care to do, high risk medical care, that is extremely time consuming.  But, all I wanted to do was go home, and repaint Rowan's room, mickey mouse, because that was his favourite.  Red was his favourite colour, and he had an eclectic taste in music.  I wanted to get him home and introduce him properly to his siblings, and let him be himself.  That hospital stay was the most enlightening stay for me, it changed everything.  It changed my perspective of everything.  
This has been my second chance and this time I am doing it differently.  It's not easy for doctors to hear a parent tell them no when they want to run a particular test, and mean it, especially when they are so used to you always agreeing with them.  I made choices for Rowan, not just for the reason of finding a diagnosis.  I made balanced decisions, if a test was not going to change the treatment plan we were already actioning, whatever the outcome, I would now say no. It made me a better parent, a better advocate, a more confident person.

So this other side of not having a diagnosis, has taught me the value of the other things in life.  It's taught me the only thing that matters in life, is the quality of it, not the quantity.  I don't know what's around that corner, with, or without a diagnosis, no one knows, but without a diagnosis you really have to learn quickly to appreciate the fragility of life.  I tell people we can't tick a box, that means that we're filling the rest of the page, and we're really going to fill it.  Quality of life decisions can be hard to make, but I take one day at a time, one step at a time.  Rowan has a life, and he's going to live it.  He is going to experience as much as physically, humanly possible, whether he likes it or not.  And that's what we do.

So, recently Rowan has started horse riding, started, and become invested in Beavers.  He's had music therapy, we've been camping, we've been to a theme park, we've been to a festival, we've been to the beach, we've walked countless country parks, gone on easter egg hunts, been to the cinema, chalked on the patio, had a bbq, made cakes and biscuits, been to meet Paul Hollywood and Mary Berry, we've been geocaching, we've been to a farm, and a safari park, we've been swimming......and this list is still growing.

I just have to double check with myself sometimes, that I haven't spent so long fight battles, that eventually I often win, but not always, that I have sacrificed Rowan's quality of life in the meantime. It's a real juggling and balancing act, it really is like a circus in my house. There is a very fine line, and everyone's line is in a different place, but the medical side of Rowan, is not Rowan.  It's just a small part of him.  And even if we got a diagnosis tomorrow, it would not change who he is, who he has become, and who he will be.  He is the same, very very nearly 6 year old, with, or without a diagnosis.

Being undiagnosed can be isolating, terrifying, lonely and leave you feeling helpless and hopeless.  You're expected to fight battles that you just don't have the time and energy for.  You have to fight for absolutely everything your child deserves, equipment, respite, schooling, care, therapies, appointments, medications, you name it, without a box to tick, you have to fight for it even harder.

 We now have a place to go to vent all these issues, get support, and see how other people have done things.  Yes, every now and again there is a disagreement, but that's bound to happen when there are over 900 people in the group, but it often gets sorted out in the end!  But we also share the celebrations, we share how we accomplish things, we share how we adapt activities to make them inclusive.  This place is SWAN UK.  It's our little exclusive, yet inclusive club, no diagnosis allowed (unless you are a graduate Swan).  It's our little sanctuary, where we share things we wouldn't share with other people, from silly stories about the most embarrassing thing that's ever happened to you, to heart wrenching emotions when things don't go so well, sharing pregnancies (not mine), to sharing losses.  But we all have one two things in common.

  1. We have a child without a diagnosis
  2. We want our children to have the best quality of life they can

For us, as a family of 5, the focus is on experiences, living life to it's full potential, disability or no disability.  I know most of Rowan's medical stuff, it just sticks now, naturally, but I'm not afraid to tell the doctor I don't know when he first smiled anymore, and make them look it up.  I don't care when he first smiled, my only concern right now, is that he keeps on smiling.  Unless he is in time out!

So, the other side of having no diagnosis, learning to appreciate the little things, and life live one day at a time, and experience everything you can, no matter how big, or small.  Battles will always be there to fight, pick them wisely, and don't miss out on finding out exactly who it is you're fighting for.  I have maintained my promise to myself, Rowan's favourite colour is red, his favourite programme on TV is Jamie Oliver's 15 minute meals, he likes watching stampybloodylongnose on youtube, he still isn't a great fan of messy play, but does love to bake (and eat) brownies.  He absolutely loves minions, but his favourite film to watch over and over at the moment is Rio/Rio 2, that's until Annie is out on DVD!  He loves Imagine Dragons, as well as Taylor Swift, however his favourite song is Red Balloon by Charlie XCX.  When he grows up, he wants to be an ice cream man, with Ayden driving the van, and when it's not hot anymore, he wants to be a taxi driver.  I know who Rowan is, I know who all my kids are (apart from the preteen, she morphs every minute into someone new!) and we're going to fully live our lives, together.

We're off to get sorted for our next new experience, a certain someone's minion birthday party.  Please click the links below to read other blog posts to support Undiagnosed Children's Day