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

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