It’s Thursday today. Its been a funny old day. A day which deserved a blog of its’ own.
Tomorrow, being Friday, will bring the last day of the Easter Holidays. A day where I will look back at two weeks with the little Smiths and through this chocolate fest of a break from school, can say we had fun. We have played, coloured and baked. We have had pyjama days and overdosed on Peppa Pig repeats. My skills at keeping within the lines in colouring activities are vast improved whilst my feet bare more scars than usual from Lego bricks hidden within the shag pile rug.
I’ve watched our Easter Holiday, generally from within the four walls of our lounge, be quite different to those of friends (or people I know who I’ve stalked on social media). You see, school holidays are very different when you are a family including disabled twins.
This break, Mike had very limited time off work. I’ve not yet reached the point when I move our carers in 24/7. So this means my ability to take the children out is quite compromised! I yet have no mummy super power to grow several pairs of extra hands (that skill must have been hidden somewhere with this elusive magic wand I’m searching for). I can’t run after a busy Zach and push Reuben’s wheelchair and carry all the equipment and medicines and a ball or a picnic all at once. Most importantly, I cannot lift Reuben’s wheelchair independently; even Thor would struggle. So, more often that not, we stay home.
Don’t get me wrong, we don’t let disability have us under the thumb. When I have a carer or unsuspecting relative by my side we grab that chance at the big wide world. We aren’t strangers to the giraffe enclosure at the zoo or the fish at the aquarium. But days out when you have just Mummy to play with are far and few between.
So, this holiday hasn’t been full of LegoLand or swimming or ice creams at the beach. It is also a million miles away from trips to Europe or far off Caribbean waters. (I can’t even get him in the car – I’d have no hope on a plane. But to be fair I think our sun seeking tropical days are long gone). Our days have generally been making our own fun at home, wondering if I could possibly risk a vertebrae and launch the wheelchair into the boot, to get a change of scenery. I subsequently considered this far too risky in terms of any sort of Health and Safety so again, we stayed home, and opted to push him to the local bakery for a sticky bun instead.
Holidays aren’t such holidays for us as the general routines of care continue whether we are on ‘holidays’ or not. Hoisting and physio and appointments and drugs and therapy and sensory needs and changing and lifting and feeding and emergencies and worries and doctors. Carry on regardless.
It is however fun to have the twins at home, as well as Harry of course, but our home based activities are conducted because it’s difficult to do much else, rather than being an active choice. We therefore do all the painting and ipad games and colouring that one can manage, amidst the sensory lights, bubble tubes and increasing numbers of equipment pieces that form part of our our family furniture.
Obviously, this wasn’t what made this a funny old Thursday. The above is the just the norm for us, sadly. However, today was a thursday when two things happened and two people touched my heart.
One of those people is someone local to us, in our town and whom has, with his wife, become our friends. They are NICE people. Kind people, who seem to be well known and well loved by many. People who have been through their own share of heartache, yet remember others and reach out. Just bloody nice people. Running people…
A while back Steve approached me and said ‘I wanna help the twins’. I was listening. I never cease to amaze at the kindness and generosity of others when it comes to my boys. He wanted to use his skills at running (and he is one of those talented amazing runners who is like an incredible machine) and run the London Marathon. For my babies. Is that not plain awesome? Yep, totally.
I explained how I needed to convert my vehicle. I explained how the lift in a vehicle would save my back and Reuben’s dignity. I explained how he has vulnerable hips and needed surgery and needed to travel now in his wheelchair and not his car seat. I explained how we needed a bigger space to accomodate everything we need to take out with us. I explained how a conversion would mean I could take them out on my own, like other mummies. I explained how the right vehicle would transport the twins to different experiences in their childhood. I explained that just getting into a car so many can take for granted but to us it’s a mission. I explained this would transform our life as a family.
Steve listened. Then he explained how he was going to run London to raise the money to make the above happen.
He has been raising money for the last few weeks. He is doing great. Huge thank yous and Reuben high fives are coming his way. But along side that fundraising is the training. The running, the time away from his family (Hi Amanda!) to train, the effort, the crappy weather, the dedication, the aches, pains and nipple trauma! I’ve been a water stop for him on a long run and that training plan is no walk in the park (literally). That’s some serious shiz. Then there’s the pressure of London and achieving his time to fulfil his target. I’m not in with the running lingo but I understand he wants a ‘sub3:30′ which to me sounds like bloody hard work as to be honest, if I attempted it I’d be happy to finish it in 3 days.
We have supported him the last few weeks, but today (funny old thursday) I realised something. Steve won’t let this lie. He has a long long way to the fundraising target and he is pushing everything he can in the training and the fundraising for one reason. He didn’t have to take this on. But he did and he made a pledge to help my boy. To open up his world. I have today seen the passion in his quest, to try and achieve this, to let this happen for Reuben and to conquer London for himself. True dedication that will be a life changer for that little boy asleep under his sensory lights right now.
By something many others will see as simple, we have been given an opportunity here. We have the potential to really see something different for us and our way of life…which is where my other thing on this funny old Thursday came in.
Today, I went to my Auntie’s funeral. She was such an incredible woman. A lady who had led a full life, a lover of family and fun. Always with a zest for life and a twinkle in her eye she had a fulfilled time in her 96 years. She lived through the War years and saw much personal grief through the loss of her husband and two children, yet she embraced life. I sat in the chapel and through eulogy was reminded of the many reasons that made her amazing and why I loved her. Not just that she had the best smile and giggle around, or that she taught me to play pontoon that would stand up well in any casino, but that she took life by the hand and made it her own. God bless.
And that’s what made today poignant for me. I learnt a lesson at the very last point before we said our goodbyes from my wise auntie – take your opportunities and make life your own.
Through Steve’s mission to achieve this for Reuben he is giving us an opportunity to make the twins’ life even better than it is already. To get them out there. Get to see more of what’s out there rather than just, as much as we love it, home.
Good luck Steve. I really hope you personally fulfil your dreams in London and your dreams for Reuben. I in turn promise you that if you succeed in this mission – Reuben’s Adventure of a Life Time – I will give him that adventure of a life time. I will seize that opportunity and make life our own.
What do they say? ‘If life gives you lemons, make lemonade’. Well, because of two very special people in my life on this funny old Thursday, our lemonade just got a whole lot sweeter.