"I don't make resolutions"
Andy always made this announcement at New Year (whenever I started reeling out my list for the year).
He firmly believed the focus should be about changing habits , not making unrealistic promises. "It takes six weeks to change a habit" was his rationale and he felt that you didn't need a point in time like a new year to make changes, we should be constantly thinking about what we would like to do differently or change and make realistic goals so we don't set ourselves up for failure.
I do like a resolution however, I love a deadline, it drives me and being a naturally competitive person it gives me something to work towards.
In 2012 I resolved to get back to running again. I had always been a regular runner, even from my teenage years but it had tapered off as a result of the long hospital stays with Daisy, the comfort eating was making me bloated and I took a look in the mirror and decided that this was not what I wanted.
I started running again one cold, wet, windy day. I changed into my trainers, dropped the children off to school then ran 5k, it felt great and soon 5k became 10k, then a half marathon and by the following year I had run a marathon and achieved an (unofficial) sub 4 hour time.
As you can guess once I set my mind to it, I make it happen.
I hate New Year's Eve, I dread it. I associate it with some very poignant memories, the millennium New Year when my dad had cancer, we just didn't know it yet, the New Year after Andy died and we hadn't even had his funeral, the multiple new years when Daisy was desperately ill in hospital.
Much as I am an eternal optimist the words "Happy New Year" stick in my throat because that promise hasn't really fulfilled itself over the past few years.
However I'm still going to try and think about what I want from this year, none of us really know what is around the corner, that's the whole premise of this blog, after all but I can have some control over how I spend my time.
I have been thinking a lot about what I want to achieve this year and I have decided to put together a list of goals for the year, realistic resolutions that I really can work towards.
In fact in sitting and reflecting it's helped me face the year with a renewed positivity. I was dreading the second year without Andy but by having some achievable goals I can start to get some control back.
So, here are my thoughts on my own realistic resolutions for 2017:
Try and get Daisy into regular education
It's been really difficult for Daisy to go to school regularly, the combination of her deterioration and the need to now be on her TPN (intravenous drip) 24/7 means she has to have a trained nurse to be with her to be able to attend school, it's the policy of our hospital. But anyone who reads the papers knows the UK is experiencing a crisis in availability of trained nursing professionals, so Daisy can only go to school 2 - 3 times a week, for shorter days and only when a nurse is available. I have been visiting other schools that offer a higher level of medical support than her current special school so that her physical and medical needs do not continue to be a barrier to her education. It's going to take a long time and the transition to a new school will be a gradual one but I hope that barring any unexpected events (of which I highly anticipate there will be many) that Daisy will be in full time education by the end of the year.
To spend more time with my older children and to spend more time on me
That's a tricky one. Living as we have done with the constant knowledge that Daisy will not survive to reach adulthood has made me really seize the day with her. It's difficult to make plans because life is so unpredictable and support and care packages are inevitably as a direct response to changes that have taken place rather than forward planning for the future. I am considering a possible move to a residential setting but I have to weigh that up against the nursing care Daisy needs and her fragile health, and there are also Daisy's opinions to be taken into account - she wants to be home and with her family. The times when Daisy is in respite allow me to spend quality time with the rest of my children. Even simple things like being able to pick Xanthe up from her part time job means we can have a chat in the car together. This year I need to work out a solution that works for all of us that allows me to have a proper, predictable break from caring for Daisy so that I can be present for my other children and I also need regular breaks from ALL of my caring needs (including those of my boys who will always have high functioning autism). I miss being able to commit regularly to races, or to be able to go away and visit friends. I am two years away from my 50th birthday now and I need some space to be me.
How realistic is this resolution? I don't know, everything to date has been a battle. Even as I write I am battling the threat of nursing hours being taken away from me and the pressure to put Daisy into a very long term residential setting. My aim is for a workable middle ground that respects Daisy's wishes while allowing me to step back from being a full time nurse and allows me to be a mum, both to Daisy and my family. And maybe even allows me to be Steph again for more than the occasional snatched moments I currently have.
So these are the big things I will be working on over the course of 2017. Well, there is one more big thing, it's fulfilling a promise I made to Andy. 2017 is the year that Was This in the Plan? ,The book, is launched.......more of that in a later post but lots of exciting news happening on that front.
But I can't resist having a couple of resolutions that are completely personal to me;
1. Learn to tumbleturn when swimming
I have wanted to do this for years, I'm going to stop procrastinating, this is the year I perfect the tumbleturn.
2. Compete in a triathlon
2016 was my year of breaking into multisports (open water swimming, Duathlon), 2017 is the year of puttting it together. I'm no Brownlee but I know that by the end of 2017 I will have at least one or two triathlons under my belt
So that's it. Another year about to begin. Another year of adjustment and change. I still can't believe Andy is not here, I don't think I will ever fully get my head around the fact that he's gone , but much as I try I cannot freeze time. At least I have a focus for 2017, no doubt there will be changes and distractions, things won't go according to plan but at least our family will keep moving forward, it's what he would expect.
Websites close to my heart
- Shooting Star Chase (Daisy's Hospice)
- Great Ormond Street Hospital Children's Charity
- Torbay Holiday Helper's Network
- Sick Children's Trust
- Daisy's Angels - Facebook Page
- About Costello Syndrome
- Asperger Syndrome
- Caudwell Children
- Together for Short Lives (Children's Hospices in the UK)
- Costello Syndrome Support Group
- Give Kids The World
- PostPals - Putting Smiles on Sick Children's Faces
- Singing Hands (Daisy is their No1 Fan!)
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