Tonight I tucked Sam in, and cut off his third Starship wrist band for the week. Monday it was Surgical Ward (24b), yesterday was CED (too bizarre a story, I don't have the desire or energy to revisit it but thanks to Tania for jumping in to rescue us!) and today was 26b!
Bur firstly, a touch of lovely. A dash of uncalled for kindness. A pinch of humans doing what they could for other humans. You see, living with chronic health means that 24/7 health is an issue. There is not a day, nor moments in the day where Sam isn't limited or aware of his health. Today was no exception, except that he had a lovely distraction, a momentary interlude from it.
Last month our local paper featured a front page spread about how Mazda Foundation had funded Sam to the value of an ipadPro, to help limit interruptions to Sams schooling due to hospital interruptions. The comment was made how much Sam loved cars and he dreamed of one day being an AA mechanic. A person read that article that works for the AA and he took his thought up the chain to management and organised for an AA visit to school for Sam and his friends. After many calls and Sams nearly exploding excitement, today finally arrived.
The AA were booked for 11:30am. At 11:10 Sams carer calls me - I can barely hear her above Sams screams in the background. I manage to make out there had been a serious mis-hap and Sams GJ tube was broken. I was at school by 11:15 and could hear Sam from several classrooms away! Fortunately the hysteria was not due to pain, but due to him figuring out he may not get to see the AA..... as he has talked of nothing but that for past 3 weeks!
A quick call to Starship and it is decided if I can plug the hole/create some temporary measure we would try to keep him at school. Basically the end of the attachment had snapped off, so you couldn't close it, which meant as there was no resistance, his stomach was emptying.... just pouring out and he was soaked. So Ange and I lept into action. We chopped 2 fingers off hospital gloves and stuck them around the hole, taped them on and repeated. Then we got a very large pile of gauze and tape and bandaged him up. Sam had calmed down once he realised he wasn't going to miss out! Thankfully the bodge job held up for the required 30 mins or so!
I'm not sure if it's cool to stick up photos of his class for privacy reasons, but I will pop up one that shows the fabulous AA team that came. Mike and Chris were so great with the kids and they were assisted by Mehpara (who made it all happen). They did a little talk, presented all the kids with a driving pack (pencils and colouring in travel adventure). Sam was presented with an AA badge, a car speaker, a battery pack (for iPad) as AA do batteries, an AA umbrella, a ferrari mouse mat and a youth membership pack - so I can go on line and he can become (probably one of the countries youngest) bonafide AA member!
After this the kids were able to explore the AA truck and another older vehicle (which had very cool horn sounds - even included a chicken!). It was a delight to see the kids having fun.
In this photo Sam is holding his tool kit and wearing his AA gear - the toolkit even has baby sized jump leads and all sorts of tools. He loved showing it to the AA men! Mike is holding up Sams AA Membership pack.
And then we headed into Starship for 2pm. 2.30 he was under sedation and 3pm we were in radiology. Sadly it took over an hour to change the tube, as it is fiddly. Sam was awake, but medaz makes him a 'happy drunk' - entertaining in itself. Thankfully he wont remember the death threats and abuse he hurled at us all - and I'm not even joking! If both my hands weren't used to restrain him, whilst sweating in hot yellow plastic hospital gowns, I would have recorded it!
We got home tonight around 8 and he is happily asleep thinking of wheels and yellow and white striped vehicles filled with kind mechanics (or that's what I imagine). Sams final words tonight were, 'I don't think I can sleep - I'm not tired, I need to think about the great AA day!'.
Sams bedtime comment made me smile..... Today he also had a GJ tube snap, been soaked in bodily fluids and cried as I stripped his soggy clothes off him, been anxious about going into hospital, fought with me and a nurse as we wheeled him into radiology, lay pinned to a hospital bed and been restrained by 3 people for over an hour while a radiologist manipulated a wire in his tummy and sat hooked up to an IV infusion..... BUT the kindness and generosity of the AA, made possible by someone giving up a bit of their time to do what they could to bring joy to a stranger (Sam) is what Sam remembered as he fell asleep. The rest of the tough stuff still happened, but today he was just a little boy having fun and he got some respite from his health- and that is respite for a Mums heart.
The AA's actions meant so much and it challenges me, because all around me are neighbours, people living with 'chronic'. Maybe it's sadness or depression, financial woes, a bereaved person struggling with loneliness, older people who have lost their independence, people that have fled other countries, an unknown health challenge to climb..... the list is endless because life is just plain hard for everyone at some time or another. But the above challenge requires a choice - a choice to live generously - to sacrifice time and energy to use what I have to make someone elses day a bit better, expecting nothing in return. Equally, maybe there are some (um... not us cos you all know about us) that need to open up and do life stronger because you've allowed others to walk alongside you and share in your struggles.
I'm seriously hoping that tomorrow is a very dull day - I'm not sure I can cope with another crazy one. Candace is back from school camp tomorrow, and I am so glad she has missed this week of crazy and she could just be a kid, but I have missed her terribly. Jaz has done so well being largely ignored, but she is great company and hilarious and quite able to whip up a basic meal (yoghurt and cereal IS an evening meal in our house!).
Ah my ramblings help me to sort my head after the adrenaline of a 'day-in-the-life-of-Sam' - tis as much for me as any reader that persevered! Thank you for those that pray - I believe God is with us each and every day giving us the strength, joy and peace to walk. His courage and hope never runs out when mine does.... and He can cope with my rants and disappointments, for there are many of those too!
And a bad joke to end with that I heard in hospital today:
Q: What do you call a three humped camel?