I know we are only 90 something % into 2017 but already I am feeling quite reflective of the year that has passed.
Every year I am amazed how fast time has passed us by, especially when sometimes the days can drag and time seems to stand still!
I'm not a big believer in making New Year’s resolutions; mainly because I endeavour to be the best version of myself that I can be every day.
Sometimes intentions for healthy eating are short lived. You start out the day with a nice bowl of porridge and a big glass of water but before you know it you could find yourself raiding the vending machine in the parent’s lounge of the hospital.
You could be planning to spend less money. Since Amy started school I drive approximately 40 miles a day compared to 12. It is safe to say that most of my money goes on petrol these days.
The stress of driving long journeys in slow traffic makes me seek treats and treats for me are fresh coffee in quiet cafes, or coffee on the go from a drive-thru. These little expenditures add up quickly and I always promise I will cut down... but again, I am well intentioned with no willpower to see the plan through.
So I thought I'd instead focus on some positives. Some of the things I have learned or experienced this year that will shape 2018 for me. I hope that you can relate to some of these.
Will it matter tomorrow? - I find myself getting increasingly agitated... awaiting returned calls, leaving voicemails, chasing things up, being spoken to rudely by some secretaries etc.
I get overwhelmed by the sheer volume of calls and paperwork but also managing expectations of the professionals in Amy's care. I want to make sure she does lots of physio, lots of speech and language/communication work, but also to have fun.
So I am learning (slowly) to stop. Breathe. Count to ten. Repeat.
I recently went on a rampage around the house trembling with rage because a pharmacist was patronising to me on the phone. I was bordering on a panic attack and close to hyperventilating.
An hour later I felt silly. I knew I had overreacted. This is not something that matters the next day... I need to clear some head space to process these negative things and move on with my day. Energy spent getting angry with ignorant people is energy wasted.
Speak out when something isn't right. - This year I have excelled in making places aware when their facilities are not appropriate for my child.
One example was last week in a local bargain store. The aisles were wide and easily accessible in a wheelchair. However. Someone saw fit to place plinths of pint glasses everywhere.
With one dyskinetic swipe Amy managed to knock the display. Thankfully nothing was broken but I made a point to mention to staff that this isn't appropriate for wheelchair users and that had we broken a glass this would not have been our fault and also potentially dangerous.
The more people know to supply properly accessible disabled toilets, have wheelchair space and ramp access the better. I used to be so shy and would just internalise my upset at the world's lack of accessibility.
But now I want to shout from the rooftops that change needs to happen.
Learn who matters. - Time is everything and life is short. One tough lesson I have learned is that just because someone has a child similar to yours doesn't mean you are destined to be best friends.
Friendship is much more than that and you need more than just one thing in common to connect. This year more than ever I realise just how important old friends are, especially the ones that can accommodate your strange time schedules and last minute cancelling.
If someone tries to undermine your struggles or is difficult about your limitations then they aren't a friend. I am truly blessed with some amazing friends of both the special needs world and also the "typical" world. I know I said I don't want resolutions, but I really do hope 2018 is more friend and family filled.
The key to happiness is kindness. - I've had a few encounters lately that made me realise the importance of being kind.
Even in my most sleep deprived state, nothing pleases me more than helping someone out. I feel in a way it justifies my existence.
So often carers are made to feel like they don't have a "real" job. But when I successfully navigate a lost person through the hospital, or visit a friend whose child is in hospital and take them a brew, I feel great.
When you've been through hard times you know how bad it can feel. So to help someone else out who is in that situation is a real gift for both yourself and the other person. Often the most compassionate people are the ones who know real heartache and pain. You don't lift yourself up by bringing others down.
We should celebrate everyone’s victories and successes and ride that wave of joy with them... we don't get many wins in life so solidarity is key.
Make time for yourself. - This is the one we probably all struggle with the most. But I really have seen how essential this is.
Last night, I painted my nails for the first time in months. I've decided that why shouldn't I indulge in a bit of self-care now and then.
Even if exhausted, it's nice sometimes to just go on a walk and take in the beautiful countryside and breathe in some fresh air.
I pick up almost every bug going and at one point was quite poorly this year. I had no choice but to rest in bed until I was well enough to move again. Plodding on would only slow down recovery or make the situation worse.
I was lucky enough that Phil could be away from work to take over Amy's care duties. During that time it made me realise just how much I do in life just running the house and caring for Amy. It made me feel valuable.
Keep your hopes high: - In just a year we have sold our house and moved into an adapted rental.
It has been a bittersweet experience and also very stressful, but this time last year I would never have predicted we would finally be in a house where we can get the wheelchair in and out of the house, or walk through a room without falling over equipment and tube feeding supplies! You just never know what will happen.
We can spend a lot of time focusing on the bad things that could happen, but sometimes we get lucky and things do work in our favour.
I wish you all a fantastic winter and party season. I wish you no hospital stays, no sorrows, only happiness and positivity. I know that I refer to this season as "chest infection" season and am aware that a lot of you will have little ones struggling... I send you love and empathy and hope things get better quickly.
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