His dreams are ashes around his feet. His legs are so thin these days he has to wear moulded plastic AFO (leg splints) to protect the bones from breaking.
Worse than this, my beautiful colour filled boy is becoming black, white and grey. His head is bowed. He never watches his Michael Flatley videos anymore, he refuses to watch anything that will remind him of what he has lost.
We all do the same thing don’t we? Turn away from the bright light that we used to love, it hurts our eyes now, switch it off.
Life has gone very quiet of late. This adjustment period is breaking my heart but there is nothing I can do. I support him, I talk with him, I cajole a smile out of him, we play cards, we play Rummikub and he watches NBA Basketball videos.
I asked him if he would like to try something new, anything, join a club, make new friends, he just shook his head, shrugged and said, ‘what’s the point, they will just mess it up for me again.’ The ‘they’ in this statement were quite simply the medical profession.
Appointments these days are over very quickly. No longer does he have to go through rigorous physio exercises, he now goes in the hydrotherapy pool to relax his seized tendons and muscles, he hates the water. He hates being surrounded by it, submerged in it, he panics and is desperate to get out. I have to go in with him so he feels more secure. I have no idea where the fear comes from but it is real and he is distraught. I ask him why he doesn’t like the water, his reply floored me.
‘They might let me drown Mum, they don’t care about me, they might leave me alone and I could drown.’
I’m fucked. I can’t in all honesty reassure him that his fears are groundless. They’re not are they? So I go in the hydrotherapy pool with him. The physio (a new one, the old one was removed from his case) is most upset with the arrangement and tells me ‘you have to give him some independence mum, he’s a big lad now, nothing is going to happen to him here. We’ve got him, he’s perfectly safe.’
Really? I mean fucking really? How many times have we heard that in the past 10 years?
I nod at her and smile in a very disinterested way and disregard her instructions completely. She has been previously warned about me and she picks her battles wisely. She removes herself from the poolside and sits at her desk in the corner and scribbles copious notes about our little head butting session. Who gives a shit? Not I.
I go into the pool and I do his session with him and we alight from it 30 minutes later, none the worse for wear. I can’t be arsed having the pointless discussion with her. I can’t be arsed explaining it to her, it will fall on deaf ears and she will trot out some trite reply that is meaningless. There is no point to it. She is too late to the party to warrant an explanation. She is one of them. Not one of us. No trust in her, no trust in the establishment behind her. We are on our own in this and we will survive despite them.
We go to the Orthopods for a regular check up. It’s another New Man these days, the old new man was removed from the boy’s case. My request of course, and he was less than best pleased with it. But the threat of a law suit made them see sense. I don’t converse deeply with the new man, he’s too late for that party too. No trust in him or the establishment behind him. A different hospital, but the same shite attitude toward best patient care.
Such a shame isn’t it? I felt the need to go to those extremes to get what I need for the boy they all promised to look after properly. I had to threaten to sue.
Our Paediatrician is the only Doctor left from the original team now, the only one who shows true diligence in his work where the boy is concerned. I discuss at great length with him the boy’s new fear of water and where it comes from. The Doc is as floored as I am. He can’t comment, it’s more than his job is worth to break rank and speak out against the lumbering machine. He makes an appointment for the boy to have counselling to enable him to come to terms with the severe and sudden changes in his life.
Fuck me, the woman is a complete nightmare! She prompts him, rather than letting him use his own words, he is on it and he tells her what she wants to hear. He sees the shortcut and an easy way out. He uses the words she feeds him and he remains locked inside himself with his grief and growing mistrust of the very people who have promised most faithfully to care for him and keep him well. He has learned how to play the game and he is better at it than they are. The counselling sessions are a bust. But we do them, because we must.
Throughout the remainder of his 10th year and leading up to his 11th birthday he had three stays in hospital that were emergencies. The last one resulted in surgery. His shunt had blocked, and he had a raging headache, vomiting, he couldn’t focus, he could barely speak and he was too tired to stay awake.
Blue lights once again took the boy back to the hospital. After an MRI on his head, it was determined that it wasn’t the shunt that had blocked, it was the tube that runs off it had developed a crease and was stopping the flow.
How had that happened they wondered?
We went through his activities, it was a short list these days. We went through his appointments, a much larger list, and then we mentioned the hydrotherapy pool. The doctor raised an eyebrow and gave me a questioning look, how hot is the water? he asked. Well, I go in with him and it is tolerable but probably somewhere around 38-40 deg.C.? It needs to be hot to do what it needs to do. He nodded his head and agreed with some mmm, mm, mm. Makes sense, but he can’t use the pool anymore, I think the heat may have caused the tubing to swell and when its contracted it has creased. We are taking the old tube out and fitting a new one. He should be greatly improved when he comes round from the anaesthetic.
He was back to his old self, and I do mean that literally. He had colours again. Gone was the black and the white and the grey. He smiled at me when I walked into the recovery room to see him. ‘Hi Mum, I feel great.’
He promptly fell asleep again which was entirely expected, and timely, because I took that moment to cry, a lot. I am so constantly afraid these days that I will lose my boy. I am terrified he will not wake up from surgery and that’s it, lights out, game over, not just for him but for me too. I can see no way clear to surviving without him. He is integral to my very being. Without him I will fall and not care where I land.
But not today. Today he is just sleeping and I can stand down for a little while. He gave me his colours again. He is a Phoenix on the rise…
A light at the end of tunnel? We’ll see…
All images courtesy of the internet.