Celebrating Life Beyond Survival

There has been a lot of silence here. I am sorry. I have crafted ways and the things I wanted to be able to share, mainly to be able to show myself how I am, how I am doing, what I am achieving, but each and every start has been lost in a whirl of busyness, sadness, tiredness and happiness, some feelings often stronger than others.

My mum letting me know she was “somewhere over the rainbow” on the morning of her funeral in February 2021. This appeared over the hotel I stayed in the night previously.

We’ll start with my mum’s rainbow. It appeared over the hotel I stayed in thenight before her funeral, as we headed back so I could put on my rainbow dress in her honour. Everyone in my family, knowing that she sang “Somewhere Over the Rainbow” to me in our last conversation, messaged me to tell me Mum was with me on this, the hardest of days. Rainbows mean the world now and Squidge and I always say “Hi Granny” whenever one appears.

It has been so hard without my mum. Mostly because I don’t feel that I am without her. My head believes she’s still at home and we’ll see her soon. But then I remember I won’t be able to send her Squidge’s school picture, or introduce her to the cheeky, beautiful lady the Gabster is becoming and I feel a little lost again. I have become very immersed in being mum.

I only have 2 children and sometimes feel consumed by the work, worrying that I am forgetting to enjoy the gift of my children. I honestly have no idea how you did it, Mum. Thank you.

My physical health

I have really started to focus on myself this year. Not in all the ways I should, I don’t think, but I have made some serious strides.

So far this year, I have lost 1.5 stone in weight, more than I ever have before. I am amazed and very proud to report that I have walked it off. As a woman with CP, I never thought I would be able to achieve something so… simple yes, but sustained too, and determined. I honestly believed that with every exertion would come pain and that I just was not capable.

In actual fact, I think it may have been, in part at least, the extra weight that hindered my capabilities. I try and give myseld even the smallest reason to get up, out and walk most days, normally pushing the baby along in her pram. Distances are getting easier, rests becoming less necessary and I don’t suffer nearly as much between physio sessions. I have a few more pounds to go, but now I see they can come off, and what I am capable of.

With that in mind, in September, little old me, me who would “never be able to walk that far” will be doing the Race for Life in September. Admittedly, I will be walking, propped up again by the baby’s pram, but nonetheless I am determined to do it, since I know irrefutably I am capable of covering the distance now and because Cancer Research UK is a cause so dear to so many and and worthy too so just watch me go

My self-investment

In mid-May, in fact just in time to celebrate my mum & brother’s birthday (he was born on her 21st birthday), I completed my BA in Childhood and Youth Studies from the Open University. I am awaiting my final result and overall classification in July, but just to know what else I have achieved in the 6 years of this path just amazes me.

Quite apart from the fact I had myself convinced I was never going to be made for academics at this level, in those 6 years I have birthed the two most incredible little girls, I have found them their forever home, conquered one of my own biggest challenges in learning to drive. (This is one I am going to have to revisit when Squidge goes to school in September. I haven’t driven since before the pandemic and am not at all sure I remember how, but I hear it’s a bit like riding a bike…)

Haha, riding bikes. I haven’t ridden a bike (OK, a trike, mine is not a body built for 2 wheels, my balance is finally at peace with this!) since I was about 9 years old. My legs were too weak to master full pedalling and my mum, bless her heart, gave up trying to teach me. I wasn’t too upset. My stubborn 9 year old self hated my three wheels for setting me apart from everyone else’s 2.

But as a family, early this month, we went to Center Parcs in Suffolk. Kev was going to ride and I knew Squidge would too and I didn’t want to be left behind. So I got a trike for the week.

The struggles of my 9 year old self were still apparent, but as it turned out, a half cycle round gave me enough motion though oddly I found I could only rely on one leg at a time to handle the motion. It got tired quickly and with no conscious awareness at all, my weaker left leg seemed able to take over. It was quite astounding because as far as I was aware, me and my left leg were not in conversation at all. But I got around. It was fabulous. My glutes, wilfuly inactive on my left side for all my 32 years as far as my wonderful physiotherapist can tell, were positively tortured that week. But it was so nice to know they are actually there! It has made me positively consider the adaptive cycling club local to me, whereas before I would have shied away with embarrassment.

This picture is awful – I love it! My face after a 22 year break from bikes. It’ll be the concentration required only being physicall able to half-pedal with one leg or the god awful ache in my poor bum! But whatever – I rode a bike!

My beautiful, wonderful, marvellous girls

I’m not going to lie about this, because if we are honest with ourselves, at sometime or another, we all feel it. I have found it hard to be around the girls of late. I don’t think for a moment it is them, they are just being what little girls should be. It has been long and hard getting used to the rhythms of a post lockdown stay at home because this-is-maternity-leave life. The piles of washing have felt never ending, the mess to tidy, the relentless expectation of myself to show that despite all the hardships of the last 18 months, I am a good mum.

I like to be busy, I like to be accomplished. I love to be with the kids. But I also love baths, shaven legs, hot tea and being able to finish a sentence. Some of these things are not conducive to others. And being honest, I have heard myself becoming a shouty, stressed and unhappy mum.

This is not a plug, I promise. Just an honest review of something I have discovered that has helped me recognise unhelpful triggers in myself and the way I have come to parent. I highly recommend the Happy Child. It’s a free programme via an app that teaches all kinds of lessons on communication and knowledge that will help strengthen the relationship between parent and child. This is something I have worried about between Squidge and me as she gets bigger and comes to understand that, not only am I different to other parents, but I need to expect different, additional support from her as a result. She is so big now, so empathetic, but still she is so young.

I am only 10 sessions in but have already learnt that I am too much of a fixer, wanting to fix and correct any mishaps or incidents, rather than just letting her experience her emotions. I am catching myself, trying to correct it and making myself more available to be her safe space. None of which of course means that I didn’t give my all to being her parent before, just more that I focussed on the wrong elements. And within a matter of days, I knew its practices were having their desired effect, because Squidge cuddled into my lap and said: “Mummy, I love you. I am never, ever going to stop giving you kisses and cuddles.”

I have also started recording in a gratitude app. Paper journals are available which are a fabulous idea, but I never have the time to sit down with a pen and paper, typing away on my phone in between shopping and to do lists is much more feasible for me. It allows me to catch those lovely moments with these two that will help pull me out of darker, negative times when they inevitably come around again.

But just look at these two, adoring one another. I did this and whatever else I do in this life, nothing is going to be as big, or as beautiful or pure or important as this. With these two little souls is where I find my strength and my purpose. I feel so lucky that I have them to will me on. They are the best motivation, whether it’s to lose a few more pounds, or to walk a few more minutes. I am finally feeling good about this place in life that we have come to together. Because I can look at them and know they are going to be fine in this big old mess of a world.

Squidge went to look round her primary school today. She strolled right in, was introducing herself and playing with other children all within five minutes, I don’t even have that confidence now and am in complete awe of her. But maybe I can get there too. To quote Squidge when I asked her if we should make more cupcakes this week: “Why not?”