Bubbles for big William

When William was born we read that children rarely live past 2 with his condition. We also read that the number of people born with lissencephaly was so low we didn't think there would be anyone else living with the condition for miles and miles. 

I remember distinctly one of our first meetings with Williams neurologist discussing the prevalence of lissencephaly and the moment she told us she had another patient living locally with the same condition and that he was in fact 16. It was a significant moment for us, it made us feel a little less alone, it gave us hope for more than 2 years and it gave us confidence knowing that this was a road our neurologist was already on with another child. 

Over time we learnt extra little pieces of information about this other family living with lissencephaly. Their child was a son also called William. From then on he became known to us as big William and our William became little William to their family. We learnt we shared the same occupational therapist, our VI teacher had worked with him in the past and the nursing team who comes in to provide respite also looked after him. Another friend of ours told me one day she had met him on the children's ward and reported what a lovely family they were. We were so keen to meet the family but unfortunately big William was having a rough time with his health and it was just never the right time.

Both the Williams were known to be great sleepers, they could both fall asleep anywhere. They seemed to share so many characteristics. Both of the boys are well known on the local children's ward and at the hospice and we'd recently been discussing with the nurse how we couldn't keep calling our William little William as he was getting so big, and maybe he'd have to become known as long William!

This week we got the devastating news that big William had passed away last week after a short illness. We are sad we never got to meet him but we feel like we know him in our own special way. We have cried many tears this week for his family, for all the people that loved him and for ourselves because we know one day it will be us walking that horrible path. 

Today is his funeral so this afternoon William and I have been in the garden blowing bubbles to big William. We want to say thank you for the hope you gave us for little Williams future, for walking the path before him and helping us to know where to go. We hope you're now free from the ties of this horrible condition and we hope one day little William can meet you and you can run together. 

On a cheerier note...

Things aren't always rubbish....

Difficult days

I wanted to write about what makes some days with William really hard.

It's been a difficult month. After several months of exceptionally good health we've had a string of little things going wrong. His seizures have been still amazingly controlled but he suddenly started suffering with severe constipation which is common in children with neuro problems and children that don't move. He then caught conjunctivitis. After previously having had a serious eye infection we are understandably nervous about his eye so we were watching it like a hawk. The constipation continued, we started a new med, but the only way he would go the toilet was after a suppository. He then started being more sick and his gastrostomy got infected so we got him checked out and he had tonsillitis as well as a gastrostomy infection. He was started on antibiotics which got rid of the tonsillitis but gave him terrible diarrhoea and bad nappy thrush. They then discovered the antibiotics he was on weren't the best ones suited to the infection in his gastrostomy so after a week of the first course we are now on a different second course for a week. The new antibiotic is making him sick, after every dose, but the diarrhoea hasn't set in so we are back to constipation.

So none of these things are really particular to child like William but the difference is the effect on me.

We don't get out a lot in general. We go to some special needs children groups, we pop to the post office, but there's not a lot else to do. Not much point going to the park, there's not much point going anywhere, William can't see, he's not usually too fond of being in his chair and in general would rather roll one the floor at home. On top of that he's heavy and awkward to move. He also has a cough/gag that scares people, a lot, so taking him out in public gets a bit uncomfortable. When he's ill we don't really go out at all. Not necessarily because he's too ill, but because I don't want to spread infection to the other vulnerable children we see and because if managing out the house was a challenge, managing him with sickness and diarrhoea out the house is really difficult. Most places have no where to change him, I would have to lie him on the floor in the disabled toilet.

Add on top of all this the anxiety problems I've been battling of late, and the motivation to do anything is small.

I don't know what it's like having a healthy child, but in my head if I imagine the last month with a healthy two year old, we would have at least managed some trips to the park to get out. We could have done some painting, crafts, playing of many varieties. They'd have kept me busy and if I'd have needed a break I could have left them with nanna and grandpa. Maybe that's too idyllic.

When Williams ill there is nothing to keep us busy. I could paint with him, I do paint with him sometimes, but can you imagine what it's like to do that with someone who shows no enjoyment, no recognition what they're doing. We can play with lots of things but it gets very boring very quickly. William barely interacts with anything, he smiles away but most the time he would be smiling if he was just left on his own to play. I might do an activity with him but at the end of it you can't help thinking, what's the point.

So we got to yesterday, I was fed up from not being out, I needed to do something for my brain. William had been much better and was booked to go for two nights at the hospice. We were going to go shopping in Cambridge for the afternoon. Nothing major, but I was really looking forward to it. It was something! Yesterday arrived and he slept nearly all morning, never a good sign. Then he starts vomiting more and coughing more and he does his poorly face. So we cancelled his respite. They would have taken him, they would have managed fine I'm sure but I know from experience that leaving him when he's poorly does not make for an enjoyable break for me.

You see with William, any cold could become a chest infection and a chest infection could become a bad chest infection and it could kill him. When he's poorly his seizures often worsen. At any point he could have a seizure that would kill him. One of my biggest fears is him dying and me and steve not being there. I know it's unlikely that he would deteriorate so rapidly that we wouldn't have to get to him but I feel like when he's ill, as his mum, I know exactly what things to look out for. I know his indicators that show he needs treating sooner rather than later. I know how to manage his feeds, his positioning to try and minimise the damage done by be illness. This isn't stuff I can teach to someone, this is stuff I know from being with him all the time through every illness, it's my instinct. When he's poorly I feel he needs to be with me.

So yesterday happens and all I was hoping for was a little shopping trip out and I feel like that one little bit of something for me is taken away. And this has happened so many times before. There can be so many wonderful respite services in place but often using them is hard. We use them because I make myself, I know it's good for us, but with a child who can't communicate what he wants and relies on you to figure it out, leaving him with anyone who knows him less than me is hard.

We've been thinking a lot about having another child. It would be hard when Williams poorly to have someone else to think about but I think it would do us good. Someone to make us want to make the effort to go out and do things because with them there would be a point to it. But it's really really scary. What if they have the same condition as William, what if they have something more complex, what if they need more hospital treatment. I seem to have stumbled across a lot of news stories and blogs recently about healthy children dying unexpectedly. What if this happens. Will I ever stop worrying about something happening to that child. I often describe living with William as living on the edge. We cope with it, we often cope well with it but I feel like we couldn't cope with anything else. So I worry a lot about Steve dying, about me dying, about a grandparent dying, about something happening to us that would make us unable to look after william, about Steve losing his job, and about something happening to other children we will hopefully have.

I believe everyone in life has their struggles, some are harder than others, often we feel like ours are bad, maybe the worst. I don't think ours are the worst, but they are hard. There's not a day goes by where I don't think about what it will be like when William dies, will I cope, how will I ever get over the pain of missing him. While death is a certainty that could happen at anytime, I doubt many of you with healthy children face the reality of daily worrying when your child will go. I'm sure it crosses your mind, but I carry that all the time and it never goes away. Add on to this the sadness of knowing william will never say my name, never look at a toy and play with it, never walk, never sit up, never enjoy food, never put his arms round me and give me a big hug, never do any of those things that you might take for granted, and it makes for a whole lot of sadness some days.

I'm sorry this is a sad miserable post but I needed to say it.

A re-vamp!

You might notice I've given the blog a bit of a facelift! I was getting a bit bored so have changed a few things around but it's still basically the same!

I've been wondering for some time about the point of the blog. I read quite a lot of other people's blogs, mostly blogs written by families in similar situations to ours. A lot of those blogs are really lovely and well written and I couldn't see the need for another blog on a similar vein. But then I realised I only read those blogs because I'm interested in what they have to say because we're in similar situations. Many of the people that know us won't know other people in similar situations and therefore probably don't read any other similar blogs. So the long and short of it is that I'm going to try and update the blog more often to try and offer an insight into life with a disabled child to those that wouldn't read any other similar blog. I'm also going to try and use it to give information on William specifically to friends who are keen to understand more about him as an individual. 

Recently we've been trying to understand more about how best to communicate with William. We've started having input from the charity Sense who work with deafblind people. It's really made us think differently about how we communicate with him. Before we had William we wouldn't have had a clue how to start trying to communicate effectively with someone like William. Sometimes I take a step back and look at William and try to see him how other people might see him. I see this floppy boy, eyes rolling in his head, not focussing on anything, often making no sounds. Maybe when you've seen severely disabled children this is all you see. Let me tell you there's so much more there and when you start understanding the reasons behind their actions it starts to make more sense and you start to see past their seemingly weird behaviour. Have you ever seen a disabled child being pushed down the street and they've got a look on their face that says 'nobody's home'? They might have their eyes open but they look completely out of it, like there's nothing going on inside. Well did you know that for children like William with brain disorders, it takes so much more time and energy to process what is going on around them. When William is out and about there are so many new sights, smells, noises, people, etc that it can become overwhelming for his brain to try and make sense of it all. It's tiring for him and so often he just switches off. There's too much for him to make sense of so he closes down. 

William has a visual impairment called cortical visual impairment which I'll talk more about another time. We spend time, using light up toys and his ipad, getting William to practice using his eyes. When we do this we try to remove all other stimuli. We turn the lights off and we don't talk to him. This helps him to use all his brain power to focus on trying to interpret what his eyes are seeing. 

Next time you see a disabled child, try and see past the obvious and through to the little person in there and spend time getting to know them. They have personalities too, likes and dislikes, it just takes more effort to figure them out!

Many of our friends are wonderful at getting to know William. They ask us questions about what he likes and dislikes and ask us about his different responses. But there are still some people who to be honest seem a bit scared of him! I know this comes from a lack of understanding and they simply don't know what to do. I don't blame them, I would have been the same before I had William! So here a few pointers in communicating with William. I'll add to this over time and it'll hopefully be helpful. Feel free to ask any questions about specific things you are interested in.

1) When you talk to William it's good to touch him, because he probably can't see you. Perhaps stoke his arm, hold his hand, stroke his cheek. Some children with disabilities don't like being touched, especially if they have sensory processing disorders  William doesn't mind being touched at all but it might be a good idea to ask the parents/carers if their child will mind. 

2) Don't feel the need to chitter chatter, speak clearly, focussing on the key words. You might say: Hello William, it's (your name). You could repeat your name a few times to help him to remember who it is. You might choose to always greet him in the same way to help him too. 

3) If you are speaking to William in a noisy, busy environment you can get close to his ear to help him to hear you better.