A little boy with ice skates on, a smile on his face, with a penguin called Rob? That's what I see too. In this quick photo that took less than a second to take, this what you see. You see what I want you to see. You see the good part of this particular experience. Would anyone really want to see the reality of the before and after of this situation? Before this he was quiet, unsure, a little scared, it took quite a lot of convincing to get him out of the wheelchair and onto the ice. He was only out of the wheelchair for about 5 minutes. But it was the best 5 minutes of the entire experience. He kept saying 'I'm doing it Mummy, I'm really doing it'. He shocked himself! He really didn't think he could do it. He was proud of himself and so he should be! This is what taking the photo is about, remembering the good part. When I got Rowan and his siblings home from ice skating, the 'aftermath' kicked in. The pain kicked in, his back, his legs, his tummy, everything hurt, he was exhausted, there was lots of screaming, lots of crying, followed by lots of leg rubbing, back rubbing, a warm bath, loud music, everything we try first, ending up with Tramadol, so he could relax enough to sleep, and once he woke up, he was in a better position to function throughout the day.
When you look at this picture of Rowan, what do you see?
A little boy, making his Beaver promise, proud of himself once again. Smile on his face, happy. He is now officially a Beaver! (The youngest section of scouts if you have no idea what this is). Maybe you see the TPN in his backpack, maybe you see the drainage bag dangling by his feet. Maybe this disgusts you, maybe it makes you curious, maybe you don't even see them? Maybe you see the cuffs rolled up of his jumper that's just that little too big for him. This is a milestone in Rowan's life. A huge one. It's also something that he does with other boys (girls can attend too, but there are no girls in their group at the moment, just to clarify), boys his own age (actually technically he's the youngest right now, but not for long), interacting with them, a little bit of normalcy. He is finally beginning to feel comfortable within that group. You don't necessarily see his needs. You can't see the TENS machine on his back because it's been playing up all week, and this takes the edge off a little bit. You don't see the risks, you don't see the fact he has to have a specially trained adult with him at all times, you don't see the 2.5 hour nap he had before this, just so that he wasn't too exhausted to attend. You certainly can't see the aftermath. Within 10 minutes of being home from this fantastic milestone, Rowan transformed. He was angry, very angry, screaming, shouting, I believe there was some swearing, there was certainly some kicking and punching (sorry Denise!), he was inconsolable, and irrational. He didn't know what he wanted, nothing was good enough, he wanted everything but nothing. As a parent, or any adult around him to be honest, it's hard to know what to do. He is in pain, a LOT of pain. Does that make it acceptable for him to behave like that? Do you let him get away with it as 'he's in a lot of pain'? Or do you discipline him, as it's unacceptable behaviour? Sometimes all you can do is walk away. Eventually I managed to calm him down (and apologise to Denise). We talked (well he sobbed), put his pyjamas on, turned up his TENS machine, got him a hot water bottle, a drink, and Denise read him a few stories to calm him down. It took 2 adults to get him into bed, and calm enough to rest. This was the aftermath of going to Beavers for an hour. Many people ask if it's worth it. Is the pain worth it? Is that hour of Beavers really worth the aftermath? Absolutely. If I asked Rowan if he still wanted to go to Beavers, even after that, he says yes. In Rowan's life, I have to make decisions that don't always make sense. Beavers offers Rowan something that he can't get anywhere else. I have to balance Rowan's needs, his educational needs, his emotional needs, his social needs, as well as his physical needs. His physical needs are just a part of him.
How about this picture, what do you see?
|Rowan, and Jock.|
Rowan riding a pony. The last couple of weeks Rowan has started riding with the RDA (Riding for the Disabled Association fantastic organisation). Anyway, he's on a pony, he looks so tiny! Smile on his face, yet again. Maybe you see the backpack. This for Rowan, is physio, it's 30 minutes of riding a pony, up and down, playing little games, collecting toys to throw in a bucket, or flowers to give to Mummy (who's eyes are bloodshot and puffy, and leaking, struggling to breathe, Mummy is very allergic to horses!!). Riding builds Rowan's core strength, he is really weak at the moment, but in time his posture will improve and strengthen, the way they need to sit on top of the horse pushes them to sit upright, and this will strengthen his core muscles. So, why is he horseriding when Mummy is so ridiculously allergic? (Honestly it's bad!) Because why wouldn't I? If Rowan was allergic, that's different, but he isn't, I am. He needs this. Rowan hasn't been having regular physio for quite a long time now, as he has gotten so weak, they haven't known what to do with him. He started hydrotherapy, but that had to be stopped for safety reasons. No one has been around to advise me, or help us. I am the one who has spent hours researching, looking at what activities build up which muscles. No one recommended horse riding, but as soon as I said he was doing it, the professionals were very enthusiastic about it. Something else no one has ever suggested would be beneficial for Rowan, from any kind of perspective is a bike. He can't ride a 'normal' bike, he doesn't have the strength, or the balance, and having accessories (drainage bag, TPN) means that it's not safe. Why is there no professional helping me with these things?
So why didn't any other professional suggest a bike? Something else I had to do by myself. Because professionals don't seem to be able to see Rowan as a little boy, they don't see what I see, they don't see what everyone else sees, they see their speciality, not a child. Rowan is now the proud owner of a bike. It's a special bike, it's therapeutic, it's complicated as to how it's different to a normal bike, but basically he has to pedal more to make it move but by pedaling more, the effort needed is less. Again, however it's normalcy. Every other little boy his age has a bike, his brothers have a bike. He now has a bike and he is very proud of it. But once again, I was the one who had to look at the physio benefits, any potential issues, research what kinds of bikes were out there, and then try and find the right one, get quotes, and then apply to charities. (Thank you Boparan Charitable Trust).
When I look at Rowan, I see a little boy, with a fantastic smile, a good sense of humour, an ability to manage the unmanageable, determination and a thirst for life. He also happens to have some very specific and unusual physical health needs. Rowan just wants to be like every other 5 (very nearly 6) year old. he wants to go to school, he wants to have friends, he wants to ride a bike, he wants to go to beavers, he wants to play in the park, he wants to go on holiday to the beach, he wants to be a minion, he wants to go to parties and have friends over to play, and most importantly he wants to go and meet a minion (once we overcome the fear of 'people in costumes'). Rowan is a person, not a medical statistic, not an anomaly, not a hospital number, not an interesting case. A child, an amazing child infact.
When professionals look at Rowan, they see a system. If they are a gastroenterologist, they see a gut, in Rowan's case, a broken gut, stomach distention, gut dysmotility, gastric output, blood results, weight loss/gain. If they are a physiotherapist, they see weak muscles, poor posture, fatigue. If they are an endocrinologist, they see a small hypothalamus, hypothyroidism, a lack of height, and blood sugar issues. If they are the pain team, they see pain, chronic pain.
I can see those in Rowan, but I also see a little boy who deserves a quality of life. He deserves to do these things that other little boys do. And we just about manage them, by the skin of our teeth. We do them, at a cost. There is a price for Rowan to pay for being a little boy, and he'll pay it, over and over because he won't let his pain rule his life, he just needs a little hand with it.
Recently some decisions have been made, without my involvement, input or opinion, around Rowan's medical care. When I have been informed of the new plan (after attending many appointments miles away from home, a plan was formed, a month later they had a 'professionals meeting' took place, and the whole plan was changed, the whole plan), I became very upset. What I want for Rowan, and what Rowan deserves, often becomes blurred. Rowan's quality of life often gets forgotten by doctors/therapists. They have their goal in mind, and forget that their 'system' is inside a little boy. I argued the plan, I tried to get my point across, my opinion, for the first time in a really long time was worthless. The fact that I am the one that has to put this plan into place, against my instincts, is cruel and unfair, they are not the ones having to input the plan are they? They aren't the ones dealing with the fall out of their plan, Rowan is, I am. And there is more to my life than Rowan's medical care, more that it will affect. There is more to Rowan's life, than his medical care, life that will be affected.
When you look at a picture, at a child, at a parent, at a situation, just remember there is more to the story, There is always more to the story. Don't judge their entire life on a snapshot. Don't assume decisions you make are the right decisions for other people. Involve people in decisions, however small they are.
What you see, is not always what you get, you see what you want to see, or what I want you to see. Don't just see, look. Don't just hear, listen.
Unless it's this picture, this picture is exactly what it is. If you want to see more this, come and like Rowan's page on facebook, Rowan's Reality, please.