Wednesday 31 December 2014

Where Did 2014 Go????

It's Hogmanay here in Scotland. New Year's Eve to everyone else and as it gets closer to the end of the year my only New Year Resolution is to try and blog more, as let's face it, this year has been a bit dire!

In my defence, I have been struggling.

I haven't been able to pick myself up since last Christmas when Jack was in hospital and ended up on CPAP. I had coped with all Jack's horrendous health issues up til then but this one just undid me. He has taken to the CPAP without a problem but for me it was the "straw that broke the camels back". I have struggled to pick myself up this past year and at times feel like I am walking through quick sand.

Add to that, Holly's illness and it has been hard at times to keep a smile on my face. But I do!

You know it's bad when you avoid Jack's palliative care nurse cos you know that you will cry if she asks how you are!!

Winter is a tough time anyway as Jackyboy fights off all the winter bugs so most of October and some of November was a write off as he was ill with a chest infection that would not clear. After 3 lots of antibiotics, he was put on one which I had to give him for 2 weeks whilst keeping him out of direct sunlight. You'd think that would be easy enough in the winter but no. The winter sun liked to stream through my living room window so for two weeks we had to have the curtains closed so that Jack didn't have the side affect of sun burn!! Such fun.....NOT!

Jack's seizures have also become a worry again so he has been started on a 3rd medicine to try and calm them as they are quite fierce, long lasting and he likes to not breathe during them! Nothing like keeping me on my toes.

To add to the fun, Jack is having more episodes during which he just doesn't breathe whilst asleep during the day now too and the soft collar which the hospital gave me is no longer doing it's job as it isn't deep enough to keep his head in the right position to keep his airway clear. The Physio gave me some more but they were the same size so I think I am going to have to get creative and come up with my own version.

BUT.....on the plus side, despite all that, my boy has gotten so tall and he has filled out! That boy has major muscles on the upper half of his body. It's all that rolling around on the floor and lifting himself up into a kneeling position and the wee monkey is even attempting to crawl! He has astounded everyone with his ability to bounce back, no matter what life throws at him.

Holly and Jack having a moment

With my girlie at the zoo on a  Rachel House day out

and with my boy
 
Jack showing just how much balance he has...check out the muscles!
 
Just tonight, I was wiping his mouth and he took the cloth from me and tried to do it himself! Holly and I couldn't stop smiling and then later when I was cleaning his mouth out using mouthwash and a toothbrush, he reached up and took it from me moving the toothbrush around his mouth himself!!!

My heart just melts every time that gorgeous boy of mine shows an interest in helping me. It might only be fleeting but I hug it to me and store it away in my heart to sustain me during the harder times.

We have also set the ball in motion re Guardianship of Jack. Now that he is 16 and classed as an adult, in order to make decisions on his behalf I need to apply for guardianship. Hopefully it will all be done and dusted by his 17th birthday and that will be another stress out of the way.

In October I applied to get on a course as an assessor for Scottish Vocational Qualifications where I have to put two unpaid carers through their SVQ in Social and Health. Also connected with that, I had a trip to Glasgow to attend the award ceremony where the Moray SVQ Centre in partnership with Quarriers Carers Support Group won two awards for their work putting unpaid carers like myself through that qualification. Since I was one of the first carers to get their award and subsequently the first carer to get on the Assessors Course, I was invited along!

My pumpkin for Halloween


It was so much fun. I even wore a dress... gasp shock horror! The presenter of the ceremony was Kaye Adams from the TV show Loose Women and she took a real shine to my shoes bringing them to the attention of everyone in the room! So when we won the award for Innovation my shoes got centre stage much to Kaye's delight. Later I had my photo taken with her but instead of standing next to me, she got down on her hands and knees saying "I bow to the shoes"! She was so down to earth and such a laugh. That was the highlight of the evening and the cocktails at The Corinthian was a close second.  I know how to party ya know!

My red shoes!

Kaye Adams bowing to the shoes!!!


The course is hard work, time consuming but also very interesting. There was a moment, about a month in, where I thought "whose bright idea was this???" If it wasn't for my sister, who has moved back home, helping out with Jack I would have fallen by the wayside long before now.

I have met so many interesting people through this course and I am really enjoying helping my candidates who have already realised that I am a bit mad! But fun with it!

December was such a busy month that it passed in a blur with Jack having 3 hospital appointments in one week! What is that about eh?

Christmas was quiet but lovely. Jack partied til 11.30pm even though in the run up to the day he was alseep by 6pm every night. We also went to the panto at Eden Court in Inverness and we got moved to the House Box as Jack's view would have been restricted in the seats we had. They were so lovely and we very much appreciated it.

Christmas mugs...you just gotta have them

Holly helping Jack to open his presents

Sporting his Batman onesie...a christmas present from his Aunti Kathleen

Pirates of the Caribbean spoke guards to pimp his wheelchair

Personalised Wheelchair number plate.....what a cool dude!


As 2015 creeps closer Holly and I have decided to take the bull by the horns and take Jack to Disneyland Paris for Christmas next year. He got loads of money for his birthday and the last two Christmases so we may as well spend it on something that we will always remember.

So as 2015 draws to a close, I want to wish you all a very healthy and happy New Year. I hope you continue to share this roller coaster ride with us and I look forward to sharing more of my crazy world in 2015.



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