Chronic illness is very hard to explain sometimes. Isaac’s baseline ‘well’ is almost definitely not the same as your ‘well’, but life is no competition on suffering. I honestly don’t mind when people have a grumble about a particularly bad cold they have been suffering with for a while, but people often apologise for doing so. This last couple of weeks I have had a broken or bruised coccyx (I say broken or bruised because I decided not to have the X-ray to check, as either way, the treatment is the same; try not to sit on it, anti-inflammatories and painkillers). And jeez, did I moan! Only the diazepam/tramadol/naproxen cocktail shut me up (mostly because I was an incoherent wreck crawling around on the floor...I’ll stick to the mojitos in future).
When someone expresses concern about a blood test while Isaac has had more needles than hot dinners in his lifetime, I don’t compare their situation to ours. When people have effortless pregnancy after pregnancy, I don’t bemoan the fact that we had to have IVF. Coping with chronic illness in the family does not diminish your empathy for others. For someone with near perfect health, a new health experience can be a very scary thing, whereas for Isaac, we are used to tests and subsequent results on a rolling basis (and some will always bring bad news) and I guess in some ways this desensitises us to some aspects of hospital life.
This week we met a particularly useless surgeon who proceeded to inform us that Isaac would have his port fitted in the side of his chest, rather than at the front, because it would leave less of a scar and be less visible. Isaac protested that he wanted it at the front because he doesn’t give two hoots about a) the scar or b) the visibility, as it would still be below his T-shirt line, and that for him, accessibility was his priority. The surgeon just really couldn’t get it (he also called him ‘James’ throughout the appointment, which never fills you with confidence). When we explained that depending on what IV drugs Isaac takes, he might be hooked up to drugs for some hours each day, so to pull down his T-shirt, and have the line pop out his neck, leaving his arms free to go wherever, is a lot better than having it on his side where he would need the line to come up, down or out his sleeve. Plus, one day we hope he’ll be independent and able to do his own IVs, this is only possible (I think, or at least it’s a lot easier) if the port is on your front. The surgeon still looked at us, mouth agape, before finally conceding that Isaac was right, and then proceeding to talk us through the surgery;
Dr Useless; And we make one incision here (pointing to childish drawing he is doing for us).
Me; Really, Just one incision?
Dr Useless; Yes, that’s right.
Me; But don’t you also need an incision in his neck?
Dr Useless; Oh yes, that’s right. Two incisions.
Me; But you’re not the one doing the surgery on Isaac, right?
The flip side of chronic illness is that yet another admission to hospital, when it is expected, even planned, is a very different context to a first or emergency admission. This is our reality, and for the most part, that’s OK. Last night I stayed in with Isaac, and we gossiped and giggled about the people on the ward (I have a lifetime of shocking stories about the families we see on hospital wards, and please know, this is not us snooping, we are in a four bed ward, and last night, this meant a room full of maybe 15 patients, visitors and nurses - only divided by curtains, you can’t help overhear, and all I can say is that last night was like an episode of Jeremy Kyle!). We stayed up too late, we ate chocolate after cleaning our teeth, we overslept. Went to the gym for physio as soon as we woke up and raced each other on the bikes. Then I swapped over with Dan to spend some time with the girls. We shopped, went to a funfair, and I laughed my head off on the dodgems. Then we snuggled up with the dog in front of the fire and watched Dumbo.
I think sometimes, because we do carry on, we laugh a lot, we throw a lot of parties, and we make the most of every day, and yet we still prioritise Isaac’s health, we can be labelled as (eek!) inspirational. And this is NOT a word I have come up with, people say it to me all the time. One CF blog I read said this:
“Frankly, many people treat the chronically ill as inspiration porn. So when we express any type of grief, they act as though we’ve rudely interrupted their televised programming for something unscheduled and unwanted”
But before I very publicly fall off any hypothetical pedestal you might put us on, can I tell you that we do moan, we do cry, we do have tantrums, throw weetabix on the wall and slump against the fridge crying. I can certainly tell you that I myself feel anything BUT inspirational when I’m tired and usher the girls up to bed with their iPads because I JUST WANT TO HAVE A GIN IN PEACE. And Isaac has his little paddies too.
Sorry, this post has no real outline, no conclusion. Things are going well in hospital. Isaac is coughing more, but that is usual for early on IVs. The physios are pushing him hard, which is great. And best of all, we think his port surgery will be bought forward to Tuesday now, so we just need his line to last until then. Depending on his recovery, we hope to get home on home IVs soon after if we can. I guess what I am trying to say, is that if it was your child, you’d be doing the same too (only probably better, or at least with less gin), and that mostly, life is not so bad. It was a completely different ball game last time, when he was so sick, but right now, we’re doing OK.
Thank you for all the kind wishes x
Georgia O’Keefe love tonight.
