A Mothers Ramblings: Am I Being Selfish?

Wednesday, 20 November 2013

Am I Being Selfish?

Hello Everyone,

I have a little problem and I'd rather like it if you could help me to work out the answer.

Big Boy is currently five years old and in year one of School. Big Boy is just like any other boy apart from he has an auto-immune disease which means that he needs a little more care at times.

You see in July 2012, just two months before Big Boy was due to start School, he was diagnosed as being a Type 1 Diabetic. I'm sure many of you remember my Tweets and Facebook status updates that day, and on several days since where I quote odd numbers or mention having to get up in the night to either give Big Boy food or an injection, or even ask you to remember a number for me.

Those first two months were a huge learning curve for us. We learnt a lot, despite having been the daughter to a diabetic for around 30 years (I still am a Diabetics Daughter!) I didn't know huge swathes of information about this auto-immune disease. When Big Boy started School, I was scared. Not just scared of him starting School like any "normal" parent, but scared for him with regards to his Diabetes. I mean he was 4 years old and really in the grand scheme of things only just diagnosed as being a Diabetic and although he knew that made him different and he was great at realising when he was having a hypo (low blood sugar) he was still only 4.

The School were fantastic. There were volunteers who agreed to do blood tests on Big Boy, to give him his injection of insulin at lunch and in the future if needed, one at snack time too. It was another learning curve for both me, Big Boy and the volunteers. The team were small but supportive, and it took a bit of trial and error to get everything in place that meant that Big Boy had the communication between home and school to ensure that Big Boy was safe and everything was passed between us but it happened.

Then something happened and I don't know what, because despite asking I can't be told. The two volunteers were no longer able to do Big Boys injections and only one of them would carry on doing his blood tests. Yes, I was angry at the timing, which to me seemed too coincidental, yes I was angry at the lack of communication and the feeling that I and my concerns over Big Boys safety were being ignored but you know what? It's fine. I don't need to know the how or the why, I have my suspicions but to be honest at this stage I just don't care, as this blog post will hopefully point out. The issue now is that I need to find a way forward and so what has gone on before just doesn't feature on my radar.

So just to make it 100% clear when Big Boy was moving into year one there was nobody at School who could do his injections. As a short term temporary measure it was agreed that I would go into School to do Big Boy's injections at lunch. It was to be short term, because a person had volunteered and would be taking over as soon as they had their training, they've since retracted their offer but it's okay I think I know why. Now, of course that I know that isn't going to happen the short term temporary measure is now the only way forward.

And here comes the problem part, the am I being selfish part.

As I go into School at lunch time to do a blood test and administer Big Boy's injection I can't be far away from the School. Really, I need to get them to do a test mid morning and depending on his blood sugars I would need to either be called to run in and do an injection or he could just get on with his day, so that would mean I'd have to stay at home all morning as my house is a five minute walk from School. At the moment we're just doing the test mid-morning if Big Boy thinks he needs it.

This means, I can't go to blogging events. Not really a biggie, but you know this is sort of my job and going to some of these events is something that I want to do. I recently had to turn down a holiday, a cookery session with a Chef I rather admire, a day finding out some really rather interesting facts about something I'd have loved to have learnt more about and a dozen other things. I also had to turn down paid work, a rather nice amount for a few days work that would have been handy, what with it being Winter and fuel bills expected to rise.

I can't go to friends houses or to those of my family. Some of my friends live further away from the School than I do and my family are about 20 minute drive away. If I were at their home it would make getting to School to give Big Boy his injection rather harder. And seeing as I tend to walk rather than drive it would also mean I'd need to learn how to run so as to make it in time. I can't take my Mum to her hospital appointments, so it falls upon my sister. You know the one with five children and a day job.

I can't work. I had a job lined up for this September, nothing big or fancy, just a few hours doing something that would lead to something else and hopefully give me the career I've wanted. Something I couldn't step out in the middle of. I managed to persuade the people giving me the job, to put it on hold until January and they agreed. Apparently I'm worth waiting for. Yet, if nobody is able to take over doing Big Boy's injections then I can't take the job again and even if I was worth waiting four months for, I'm pretty sure I'm not worth waiting four years for (9 years old is when Big Boy should have the motor skills and strength to inject himself it could of course be sooner but who knows). Not taking the job, means less money. Less money means no petrol (hence the walking thing), less new things, less getting out of debt, less everything really.

Of course none of that matters. What matters is Big Boy.

Big Boy sometimes cries when I leave him at lunchtime, or begs me to take him home. It's soon forgotten but is me going into School everyday helping him? It doesn't help me to think of Big Boy being upset when I leave him.

Big Boy is looked at as being different by his peers. None, of the other children's mums come in everyday. If I continue being the one to do his injections then it'll have to be managed more tightly, I could be going in three times a day to give him an injection. Did your Mum come to school three times a day to do something for you?

Big Boy isn't able to be as independent as the other children. Every trip out of School, I have to be there to administer his injection, to do his blood test, to be the responsible adult for him. I'm his Mum, so of course I don't mind this, but did your Mum go on every School trip?

This could all be over in the New Year when Big Boy gets a pump, then again new issues could arise. If Big Boy decides he doesn't like the pump we'll be back to this situation. If being on the pump doesn't agree with Big Boy we'll be back to this situation. Back to me going to School everyday, sometimes three times a day to make sure that like the rest of his peer group he is in positive health and able to take part in all activities and able to be a good student.

Of course with Big Boy being on the pump it doesn't mean the end of injections, or the end of having to deal with needle type things.

The pump could fail and he might need an "emergency" injection of insulin. The Pump could have a blockage in the cannula, or a kink that means he isn't getting the correct dose and he'll need an "emergency" injection of insulin to bring his sugar level down.

Big Boy will need to have his pump removed when he does PE, and reattached to the cannula when he has finished PE.

The cannula could work it's way out of Big Boy and need to be reinserted.

All of those reasons will mean even when Big Boy is on a pump, that he'll still need me on standby. Just in case I'm needed, just in case he needs an injection, just in case he needs a cannula to be reinserted.

And then on top of this there is my other worry.

I'm the only one that is local, the only one available during the day to do Big Boy's injections or sort out his cannula. What happens if one day, I'm driving to School from a friends, or my my families home or back from the Supermarket and I have a car accident? Who'd help Big Boy then?

What if I have to go to an appointment and I'm running late getting to School? Who'd help Big Boy then?

What if I have an appointment that I can't cancel or rearrange, that I know will clash with Big Boy's injection time? Do I have to keep Big Boy off School for the day? Will I get fined for keeping him off School?

So there you go. What do I do? Do I change BB's school to one where the staff have already volunteered to do injections on another child, and would happily add Big Boy to their roster? Do I carry on with going into School to do his injections? Is there a third option that I haven't thought of?