I saw on Facebook yesterday that several of Joshua’s peers had sat their last A level examination and so their high school career’s were over and university would be , all being well, beckoning them in the Autumn. I wish them well and hope that they get the A Level results that they need to progress. I am able to be pleased for them, while at the same time, being sad for Joshua, that he is not on the brink of the same exciting experience. Before Joshua was born, we would have expected our offspring to go to university, like his parents, to complete a degree and go on to develop a career. But those hopes were dashed when he was 4 days old, when we had to adjust our expectations, to focus on achieving more basic milestones such as walking and talking. I have had 18 years to adjust my expectations , so this realisation is not as painful as it might once have been.
I am very thankful that Joshua has the benefit of an additional year at school still. I am attending an Open morning at school tomorrow, and I already have a list of questions for his teacher about his year ahead. When he joined 6th form two years ago – where did that time fly to? – they were clear that 6th form was all about preparation to leave school and certainly we seem to be on the home straits now. I am hoping that school staff will be able to guide us through our search for appropriate daycare. Having recently searched for , and found, respite locally, I am more confident than I was this time last year. I am also more confident in Joshua’s ability to adapt and embrace a new provision. He has made me very proud over how well he has taken to his new respite provision, without so much as a backward glance. Surely staying somewhere overnight for the first time, must be more daunting than going somewhere for 6 hours in the day, and he has taken his weekends away, totally in his stride.
I find that it is not helpful to spend too much time speculating over what might have been. It is much more useful to focus on where we are now and the road we are travelling on, rather than still dreaming of the detour we might have taken once and where we might have ended up. My Mum was pragmatic like that, she would not have entertained any fanciful daydreaming about what should or could have happened, she would have kept me on the path where we are and would be cheering from the sidelines, every step of the way. So that is what we are going to do, play out the cards that we have been dealt and celebrate every success along the way.
Every hospital appointment that we have with Joshua, we usually have some hope that the Doctor can improve Joshua’s quality of life in some way and yesterday was no exception : Joshua suffered a stroke at birth and as a result his right side is weaker than his dominant left, he has always walked with a limp, his right leg is much shorter than his stronger left. In 2014, he underwent brain surgery to try to improve control of his epilepsy, and while it has reduced his seizures, this surgery also has caused his right wrist and foot to tense up and contort. We have an appointment about his hand/wrist in a couple of weeks, but yesterday we took him to see a local orthopaedic surgeon to see if they could intervene and improve his foot position and consequently help with his walking and comfort.
We hardly had any wait at all at our local hospital, we were called in to see the Doctor before we had even sat down in the busy children’s waiting room. We had not met this registrar before and he fired questions at me, while I was trying to control Joshua, who wanted to use his telephone or keyboard and did not wish to sit down. Rather than read Joshua’s notes he asked me when he last had botox in his legs and what age he was when he walked, he had no rapport with Joshua at all – as opposed to his hand doctor who I love , he always asks Joshua if it is OK if he speaks to us, his parents for a while. This Doctor asked if I could “make him lie down” and he made me feel pretty uncomfortable while Joshua was lively in his consulting room. I was able to make him lie down, with some encouragement, so that the Doctor could see the different leg lengths for himself.
Joshua stayed on the couch, all the fight gone from him, and began to doze while the doctor delivered his verdict to us, we have seen him use this coping mechanism before when he is not impressed by being the sole topic of conversation : There was nothing surgical that he could do to help Joshua’s malformed foot. Tendon lengthening surgery was unlikely to be sufficient and he did not think that Joshua would be able to comply with 6 weeks of non-weight bearing after reconstructive surgery, which could mean that he could be less mobile after surgery than he is now. We were not keen on the idea of surgery anyway, but if he could have given us convincing arguments and made promises about Joshua’s improved walking ability or comfort then we would have faced it, but given the doubts that he expressed, it was clearly a non-starter and he seemed delighted to discharge us. He even complimented Joshua on how well he had behaved during the consultation as we were leaving!
I was disappointed as we left, as I had had my hopes dashed yet again. I had gone into that appointment thinking that we had options and had left knowing that we had none, so it reinforced how cruel life has been to Joshua during his 17 years. Looking for a silver lining, at least we do not have a difficult choice to make now, there was no choice, he is only looking at a continued life wearing splints and built-up clumpy NHS boots to try to compensate and support what has happened to his right foot. That is better than nothing, I am always grateful for his splints – or AFOs as the professionals call them – as without them he may never have walked as a toddler. But it does feel like another slap in the face for our brave son.