Thursday, 7 March 2013
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.
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.
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