The Adoration of the Christ Child

The Adoration of the Christ Child
See if you can spot why I like this image

Everything in its Right Place

A blog about disability, life, parenting, and learning what it means to live well in this world.

Saturday, September 24, 2011

In the blood

I’m sitting in Adam’s hospital room once again, thinking. (I’m not being pompous-- there’s just not much else to do during a four hour transfusion to be honest!)

I’m watching him watch Mr Tumble as the thick red liquid drips slowly from a bag into an IV line, and from there into the port in his chest. I’m occasionally interacting with the nurses who come into the room to check his temperature, pulse and blood pressure. I’m chatting with friends who pass by in the hall. And I’m thinking about the death of self-reliance.

It really is true that “no man is an island”, and yet how often do we--do I--internalise and reflect on that fact, allowing space to be deeply grateful for the help that we receive, whether or not we are aware of it, that enables us to live?

I'm aware that this has been true from the very beginning of Adam’s life—he wouldn’t be here if a midwife hadn’t helped us to deliver him onto our dark green velvet couch in Germany. He certainly wouldn’t be alive if it weren’t for doctors, nurses, hospitals and lots and lots of medicines and machines. And he wouldn’t be who he is, and WE wouldn’t be who WE are, without so many others: therapists who patiently teach us how to overcome and work with the aversions and delays resulting from that well-known extra chromosome, researchers who have given years of their lives to perfecting chemotherapy regimens, friends who have offered help at many necessary (and unnecessary) moments, family who have flown over to stay with us for weeks on end, random people who take time to donate blood, teachers who persevere 40 weeks a year, ministers who visit and bring communion, actors who perfect beloved television characters that provide HOURS of entertainment, Christian soldiers who pray, pray, pray around the world…the list could go on forever. Really.

Someone I don't know gave the blood that is making him feel better just now. People I certainly don't know well pour over his medical notes regularly, making decisions about what will be best for him, what will hopefully help him get well. Sure, you could argue it's their job, but it's a job I couldn't do, a job without which we would all be lost.

I hope I’ve said it before, but if not I’ll say it again: Thanks, to everyone who helps us to get through both the good times and the not-so-good. To everyone who helps, cooks, chats, listens and prays. We are grateful.

Friday, September 23, 2011

Counting the numbers

As an addendum to the other day...

Adam has been much less grumpy in the past 24 hours, back to his normal sweet self (mostly). Just in time for his next chemo dose which he received this morning at 11am!

They took his blood as usual, and this afternoon called to say that his haemoglobin is still low and he needs a transfusion. To put "low" into perspective, I googled "normal haemoglobin for children" today and found that the values for a normal child are 11-13 g/dl. Adam's is 5.5 g/dl. That qualifies as low in my book too. Sheesh, no wonder the boy has been grumpy!

Tomorrow morning we go back for the transfusion, and from there something fun to while away the rest of the afternoon. But maybe not buggy racing this time, I mean the boy is a cancer patient after all. :)

Wednesday, September 21, 2011

Choose your own adventure

When I was a kid I used to read those Choose Your Own Adventure books. You know, the ones where you read a page and make a decision about which way to go at the bottom and it directs you on to the next part of that story. In theory, every time you read it you can create a different story just by changing one of your choices. I never worked it out statistically, how many different stories were possible. I just remember being as fascinated by choosing my way to the "happy ending" as I was by my choices leading me to the abrupt "too bad, you're done" ending.

In actual fact, what I liked about those books is what you don't get with real life: the option to flip back to the front and start again if your story is not going how you want it to go. Real life is marked by choices, and those choices do influence our story for sure, but we still start every day exactly where we left off before we went to sleep. We don't go back, we don't start again. I can be as different tomorrow as I want to be, but I still take all I've "read" so far along with me.

I started thinking about all this last Friday, when I was talking to our neighbour whose father recently died after battling with cancer. She was teary and fragile, but equally pleased that in the last few weeks before her father's death they had done a lot together, made the most of their time. She had no regrets about the end of his life.

I of course started thinking about Adam, and more clearly about how we are spending our time together. I don't know anything about the future for Adam, only that right now, in this moment, I have the choice to spend time with him meaningfully, to live well so that no matter what, ten years down the line I have no regrets. I want this as much for myself as for Caleb and Agnes, who won't be thinking about the future now (blessedly!) and yet will still have memories of this time in our family's life, maybe more so for Caleb than Agnes. I want Caleb to think back and remember that we did some fun things as well as the "boring" old hospital visits. I want him to remember Adam laughing as well as shouting, crying and laying on a hospital bed.

I wasn't trying to be morbid, only to shake myself out of a little rut I'd gotten into, of getting through days rather than living them. So we took the bus and went tubing down the dry ski slope on Saturday, had fish and chips and ice cream and then Adam and I, keen to keep the party going, took the bus to a playground and hung out on the swings while watching huge black clouds bearing down on us (mercifully staying dry!) I had to carry him much of the day, as he was tired. I had to wash his hands lots and keep putting his coat on when he got cold. But we had fun.

Sunday we went to church, watched Alice in Wonderland together while the baby slept, then went for a coffee and a walk in the forest nearby. Adam rode in the buggy most of the time, holding on to rocks and throwing them into the puddles we passed. Brian raced Caleb on this mountain bike course we like, hurtling Adam at breakneck speed along the "loop-de-loops" (don't worry, he was strapped in!) They stopped now and again and waited for momma and baby, and were off like a shot once we caught up--I shouted the obligatory "be careful!" and smiled to see Adam's wings and his smile, thoroughly enjoying the ride.

So we chose our adventure this weekend, we spent loads of money and tired ourselves out and it was good. I for one will look back someday, from whatever vantage point, and say that was time and money well spent. And whether or not this weekend is as flashy, I'm grateful for the reminder that I can choose to spend it well.

p.s. here are pics to prove that we survived!

sweaty family post-tubing

she does love her front pack walks!

p.p.s: just so you don't think I'm all romantic and stuff now...two days after our epic weekend I got a call from one of the nurses at the hospital who asked how Adam was doing. Fine, I said. Why? Well, it's just that his haemoglobin (red blood cells) is 58, so we wondered if he's ok. I didn't tell her about the tubing, and I definitely didn't mention the buggy racing either!!

Tuesday, September 13, 2011

Holding Steady

I'm glad to say I don't have much to report from this last few weeks. Adam has continued with his treatment as planned, without any hiccups, fevers, port troubles or mishaps. He is eating and drinking well, walking lots and generally on good form. He has gone back to enjoying sitting and watching the lift (elevator) doors, so we spend most of our time at the hospital doing just that. We don't know much about numbers, but the next round begins on 30/9/2011 with a bone marrow aspirate and lumbar puncture so we will know more then how he is doing in terms of his response to treatment.

We are trying not to think about the next 4 months apparently being harder than the first 3 were. Instead, I'm trying to focus on how much we've learned and how much better equipped we'll be this time to deal with the side effects that arise.

One thing that helps me not to dwell on it is the fact that two nights in a row now Adam has pooped in the potty!!! As I told Caleb, EIGHT YEARS of nappy changing is cause for some serious celebration! :) Not that we've really achieved too much yet, but I know we're on the road. Exciting indeed.

Everyone else is doing well, so I'll leave it there for now. More soon, and hopefully news in the next few weeks on Adam's progress, visa applications, toilet training and other exciting developments. Watch this space!