Wherever the day takes us, I am never short of people remarking about how happy Corry is, that every time they see him he is smiling, how he always seems so cheerful.
He has the most gorgeous nature. A sociable, very cheeky and loving smile, with just a hint of naughty. A dimple for added wow. Big, dark dashing eyes, like his dad, and a look of real joy at being greeted by you, whether it is a first time meet or a millionth. He is a people person, a social being. He longs to be in company. He doesn’t expect anything more of you than to be there with him. And when you move on, he will retire into relax mode. He shall allow himself a breather until you meet again and in that moment his smile will light you up another time. It won’t have faded. I’m lucky to experience it more than most. I merely leave the room and re-enter. (This applies to you doctors and nurses also, unless of course you come wielding a needle, tube, or medical instrument, in which case he will merely pull the covers over his head and pretend to be a rock.)
From what I can tell, without want to stereotype, most children who have had there share of hardship, a real run of the mill, tough old time, seem to have an ability to be content, to simply be happy with everything around them. I can say that for knowing Corry in depth, and by meeting and coming to know other children in these circumstances.
I can’t help but think if my path had been paved differently and I had been dealt such a hand, I should never smile again, I should withdraw and except my fate without fight. I should quite easily never look at another flower and admire it’s beauty or take note of the bitter cold being inhaled in to my lungs, whilst walking under the winter stars, the condensation surrounding me like a mystic fog. And yet I see in Corry how his whole body is alive when he experiences such things. He adores the moon, it’s illuminating quality. He loves to be taken out late into the evening to point out all the stars and the hidden trinkets of light. The sound, the beauty of a raging river; to be near it, he is at ease and he is at peace. He points out the tweets of the chifchaf birds covered by the bushes, wanting to catch a glimpse of them.
I’m glad people see that Corry is happy because he really is. I’m glad they are aware that despite having a life limiting condition, the feeling of joy and peace is never far away if you allow it. I’m glad he can show you that he is more than a title, that it will not consume every morsel of him.
It’s important to me for you to realise that his ability to be so bright to all in his proximity, by no means rules out the fact that he suffers, daily. And he suffers hard! It’s important for me that you know how he hurts so, because otherwise this just becomes something that can be coped with, something that can be allowed to happen. An everyday, get on with it, job. Something that can take people’s lives so viciously, so cruelly going about its business, wreaking havoc as and when it sees fit. I want a cure for this. I want to push so hard for the research, for a treatment, a management even, anything that will make this right. You have to understand that this is downright devastating. For us all.
These god awful diseases knock the shit out of a person. Alexander’s disease leaves Corry weak and fatigued to the point where some days he can’t muster up enough strength to push himself up to a sitting position. He cries out in distress when his arms and his legs just give out on him during what would have been fully contented play, and he gasps in fright when he can’t catch his breath from the violent reflux that consumes his body. It is more often than not that he will feel anxious and tense sometimes an hour before his sickness actually presents. He is hurt and emotionally discomforted at his body forcing him to wake during the night in pain. If not that, he will be thoroughly annoyed with me and his feeding pump waking him all night long because it has an air bubble, a kink, a blockage. How he gets so damn cross with being pushed to do what is felt best for him, be it walking in his frame, keeping out of his comfortable, stabilising ‘W’ legged position, and up until now the constant battle with food which would quite frankly leave him a distraught wreck at the mere ping of a microwave.
The psychological impact that a disease can have on any person, let alone a child is huge. And it can be catastrophic. It can destroy your every fibre. I’ve seen it. I’ve seen him so low and weak that he doesn’t want to get off the sofa, that he is so worn he will sleep the entire day. I’ve seen him cry and shriek for so long that there are no more tears in him to shed. It sucks. These conditions suck.
That’s what I need for you to know.
You can also know that when we wake each morning, I really have to encourage him to let me wash him, to dress him, to get in the car and come to school, that given the chance he probably would choose not to. After a night of pain; a very long night of little sleep and the prospect of a day spent fighting each battle that presents itself to him, who could blame him!? This isn’t a one off night, it’s every night. It is every day.
But yes, he will come, and I will pick him up out of the car seat, and he will once again beam a smile that compares some what to the sun… He will show you his painted, coloured hands in attempt to converse with you, and he will flutter his eyes at every passing being. Because he is wonderful, and he is amazing, and I believe he wants nothing more than to make you feel that way too.
Do keep Corry in your mind. Do keep the many children who are struggling with whatever condition, disease, difficulty they may have to face in your mind. Keep them in your mind as the beautiful, joyous beings they are. You are not wrong. Keep them in your mind as the Warriors they are, fighting each day behind a smile. Because by heck, they are fighting, always. A Battle like no other, always behind a smile.