Andy's Story

Andy Blagden is a young man, married to Charlotte and has 3 children; Lauren, Katie and Nathan. (The children were 12, 9 & 2.5 years old at the time of diagnosis).
Andy was diagnosed with a tumour in his spinal cord in June 2013. The tumour was at spinal level Cervical 3 going down to Thoracic 2 (C3-T2). This is incredibly high up the neck and the only option was to operate. This in itself was not without risk but after a 15-16 hour operation the tumour had been removed. The outlook was good. Then Andy became ill....
Early September Andy contracted pneumonia and then sepsis, Andy's kidneys then failed and he was put on constant dialysis for a month and required a blood transfusion during this time.
Andy came through all this but he now lives with the consequences; paralysed from the shoulders down and unable to breathe without ventilatory support, this is his ongoing story of rehabilitation with the goal of getting back home to his family and his future.

Saturday, 25 July 2015

Parenting responsibilities.

It's been getting on for 7 weeks since I last blogged, I know I'm not a reliable blogger so I do thankyou for sticking with me on this journey and looking to see if I've written anything new only to find not!!
I do keep thinking "what have we done that's exciting to write about?" And in short, I can't remember now because it's been so long - ha. I then also get reminded that this blog is like a diary for us as well and whilst I haven't disseminated my feelings or thought processes on here and I don't want to use this as a 'pity party' platform, these last few weeks have been very busy for me as a parent and seems a good time to write about it.

The last term of the holidays is always a busy one and it's been particularly so this year as 2 of the 3 are changing/starting schools and the third is starting GCSE years. Most of you will know what that entails but for those that don't or can't remember it's something like this;

- Taster days at school. Nathan has gone with his playgroup and I took Katie up.

- Transfer of CAF's to relevant schools. A CAF is a formal way of stating a child needs extra support because of whatever the issue is. Each school does one for their child but Harewood were good enough to do one for Nathan too. It allows me to access funding for extra support if and when needed though it usually requires a contribution from the parents these days.

- School reports.

- School summer fetes to attend, especially as they sell the uniform there.

- School sports days to attend.

- End of year picnic at junior school.

- Leavers parties to send children to, Nathan went to cattle country and Katie had an activities day and disco. More money!

- Meet and greet at the infant school to pick up uniform ordered and take home a holiday pack for Nathan. His first topic is 'journeys' which I'm excited about as we are going to do a lot of them over the holidays!
That's an idea of what's gone on and doesn't include the emotional side of it, which I think has been heightened this year somewhat especially knowing Andy isn't able to participate in these activities. Re-read the 'guilt' blog because that always likes to rear its ugly head from time to time.

I remember saying to Andy years ago when we had our pizza shop, and only saw each other as passing ships, that I would never let him leave me as I was never going to be a single parent as it was too hard (we didn't have Nathan then either). Well, I have become a single parent to all intents and purposes. I know this statement could be taken the wrong way so I hope to qualify it here and now. 

Andy is still their Dad and I always treat him as such and expect it from him too BUT he currently isn't in a position to be able to actively parent outside of the times we go to his. He also can't actively parent when we do come, to a certain degree. 
- Because of his speech difficulties it makes instant decisions difficult for him to voice, such as 'stop' if Nathan was about to run into the road.
- Because of his speech difficulties his conversations are longer to voice than mine and Nathan, in particular, gets bored or forgets the first part of a sentence.
- Because of his lack of movement he can't go after any of them, again Nathan in particular, so he can easily ignore him or move out of his earshot or eyesight.
- Because he doesn't have a powerchair yet he can't keep up with them at his choosing, he has to have his care team do that and that then depends on whose working.

A few examples of the problems he and I face as parents, so that brings the parenting responsibility down to me, and that is hard. 3 children, 3 different ages, 3 different affects on them from this situation. Nathan expressed his feelings the other day by shouting at the PA's that were on duty "I don't want you here" and asking me why we have them and if I could look after daddy we wouldn't need them. I then explained that if I looked after daddy I couldn't look after him and that brought his tears to a stop. But it's not a natural situation for any of us, least of all him!

On the opposite side of all that, our children still have their father and he is getting more involved with them slowly but surely.  The girls have had a sleepover at Andy's on their own which they've loved. Andy has also really enjoyed it and it gives him and them one to one attention. He can take responsibility for them safe in the knowledge that they can get themselves sorted and keep themselves safe.
I had a sleepover with Nathan as well whilst the girls were elsewhere ( not just randomly left at home!!) and again it meant quality time for Andy with Nathan including bath time and story time before bed. I stayed as well because Nathan can't keep himself safe and sort himself out in the same way the girls do but hopefully as he gets older that'll come! 

Through all these difficulties both Andy and I face I only have to think back to this time last year and then I realise we have moved forward so much and that our lives, and Andy's in particular, has changed so much for the better.