One of the unexpected advantages of living in lockdown has been seeing G and M start to take on a little more responsibility at home and honing some important lifeskills to see them surviving when they hit adulthood. I started with expecting them to fend for themselves at lunchtime, avoiding too many snack-based choices and including some healthier options to ensure a relatively balanced meal and, after a first week of moans and groans about what they were eating for dinner, sat them down to meal plan their dinners for the following week. They had to work together on agreeing meals that they would both enjoy and, where a compromise couldn’t be reached, settling on something that would be similar, but different. An example of this was the great lasagne vs. macaroni cheese debate, as G dislikes the texture of lasagne, whilst M would choose to eat anything but macaroni cheese. They agreed to disagree and so have one night in the week where they eat their own preferred pasta option.
Whilst planning their menu for the week ahead, G and M also had to take into consideration what staples we had in the house and what would need to be added to our weekly food delivery. We have been using a local food co-operative for well over a decade for our fresh fruit, veg and meats and they have been great at continuing to provide their food delivery service during the coronavirus crisis. The natural next step from meal planning was to get them more involved with cooking dinner as well, building off the cookery lessons they’ve both had at school. They were already well-versed in prepping their own fruit and veg for a meal, but they can both now competently fully make some of the simpler meals as well as working alongside either Mike or me with the more complex ones.
G and M have an undeniable sweet tooth and the last few weeks have been a great opportunity for them to flex their baking muscles too. The interesting thing has been that they have worked both together and independently when it has come to choosing and making their sweet treats. The starting point has almost always been to see what recipes they can find on my blog and then checking if we have the ingredients in the kitchen cupboards. So far, we’ve enjoyed chocolate cookies, shortbread and carrot cake and I can’t wait to see what they whip up next.
The great thing is that G and M are not only learning to cook and bake, but they’re also honing their skills in following a recipe and realising when sometimes it might need to be tweaked slightly to make the perfect dish. They’ve discovered the benefits of menu planning and experienced the frustration of when a key ingredient is missing from the store cupboard and needing to think on their feet to find an alternative. They’ve learnt to really work together, to listen to and respect what the other is saying and, when a compromise can’t be found immediately, to walk away and give each other space. I think that they’ve also discovered that cooking and baking can bring a much-needed therapeutic release from the tensions that we’re all experiencing from living on top of each other in uncertain times and re-centre their sense of emotional and mental well-being.
Since the day her baby brother arrived prematurely in her world, G was determined to help out whenever she could. She put up with his incessant screams from what we now realise was undiagnosed pain and looked to comfort him however she could – making him laugh, giving cuddles, reading stories or just bringing him “Cat” when nothing else would do. Like so many siblings to children diagnosed with chronic illness, G has inevitably been side-lined when that illness has dominated family life and despite our determination to make sure she doesn’t miss out because of it, I know there are times when we haven’t got that balance right and given G the attention she deserves and needs.
That time away at OTW was a week for her to be herself, not defined or viewed in her role as M’s big sister and encouraged and allowed her to take time to focus on herself without worrying about him. G came home a different child to the one who had left us, having realised that her life experiences didn’t isolate her in those circumstances and she had found a sense of self-worth that she had been struggling to develop at home and at school. G’s second camp experience saw her develop a confidence and willingness to take on new challenges, knowing that, with a little bit of self-belief and perseverance, no mountain is too big for her to conquer. OTW brought G out from the shadow of M’s ill health, helped her rediscover who she is as an independent individual and gave her her childhood back – and for that I can’t thank them enough.
I started writing this blog post 12 months ago and had put it to one side then because I wasn’t sure that the time was right to share all that was going on with M’s care at that point, particularly when it came to expressing my hesitation about whether the decisions being made were the right ones or not. Today we find ourselves in an even more emotionally charged situation and are becoming increasingly vexed with the marked lack of progress made over the last year. I revisited this original blog post tonight and decided that it now feels right to express that turmoil and the frustration in dealing with a medical team that appear to have lost their impetus to engage with us and with M. Those words written in italics are about our current experience.
invaluable and experiencing first-hand their willingness to see him at the drop of a hat over a 6-week period, where we’ve had 2 “emergency” appointments and 1 planned one, has been a relief, especially when you consider the 
just wants to return to the care of GOSH, which is the last place he can actively relate to seeing any major changes to his day-to-day living. He has gained a couple of extra foods, but we are only at 9 (chicken, rice, cucumber, apple, pear, parsnips, bacon, onion and banana) and not the 20 that his consultant expected when we met him at the start of June.
7 years to diagnosis 