I’ve not written in so long…and yet it feels like the last year went so quickly. So quickly, but also there was so much going on .. as a combination that was stressful, especially as I have had little control over most of it.
I have written about Amy’s birth, her gifts and her challenges. This year her health has challenged her more than anything we could have prepared for.
We have however enjoyed many things this year, some fabulous friends got us through.. and there’s a coffee vein running through me now (more on that later)..
And.. here’s what we learnt:
1- we have an amazing capacity for ice cream
Even on a December evening, after a hospital appointment is the perfect time for many scoops of frozen yumminess, topped with as many sweet treats as they can stick on the available surface area!
We have turned hospital visits in to opportunities to try a variety of coffee shops and ice cream parlours. I fear this habit (plus this Christmas acquired one of consuming half my body weight in Baileys salted caramel) may expand my waist further..but hey ho..
2- my girls have an innate 80s dance vibe.
There have been a lot of spotify playlists.. and a lot of singing. It’s shortened car journeys and made us laugh. Lucy always gets the words wrong and her version usually sticks.
My heart swole in the waiting room of the Ulster Clinic when the Nolan sisters ‘I’m in the mood for dancing’ came on.. it started with shoulder dancing (in sync..), but following a quick check that the room was empty bar us, they were both up on their feet dancing away.
Even when awaiting results, the music was the primary focus. It filled a gap.. took their mind off things.. lightened the mood.
3- although they fight like cat and dog, my girls put each other first when it matters
Lucy has trailed along to appointments, even when others were available to look after her. She worries. She’s heard too much but that’s been a judgement call based on the fact that its easier to talk about facts than leave her worrying that she’s only heard part of a story. It’s been helpful for Amy too as Lucy’s logical but insightful way of looking at things has given us laughs and pauses to reflect.. it’s given us the chance to talk through things that might underneath it all worry Amy too- the most recent one being Lucy’s concern that maybe some day they’d ‘put Amy down’ as there might be nothing more they could do. Whilst funny, this let me see how deep her worries go and in clearing it up for her, we were all able to talk about how things, although tough, were far from that stage and how we still had so much to be thankful for, compared to many others.
4- our ability to keep going has been tested to the limit.. and passed.
Exhaustion has been real for Amy.. and to a certain extent for me too. Juggling work with sometimes up to 4 appointments per week for some months has seen me working many nights on things I’d otherwise have done in the daytime.. we have been snappy and irritable and cancelled plans with friends, rearranged others. Despite it all, everything got done. No friends were lost.. no deadlines missed. Some sleep was lost and some wrinkles gained.. (but they may have happened anyway?!).
5- we have good friends
Friends remain the most important value added to family life. No man is an island.. and no family should be either. Each stolen hour for a coffee was cherished this year.
6- school is important, but only as far as you need it to be.
This is Amy’s last year of school (!!).. and there have therefore been a lot of assessments, exams, deadlines.. and a lot of missed school. I support a lot of parents in my day job to make sure they can help their children to access the most appropriate and supportive education.. and thankfully, actually without any effort, Amy has been afforded the most sensitive, caring and supportive school environment that we could ever have hoped for. Yes education is important, mostly because its compulsory and lasts for at least 12 years, so it should be at least comfortable..but more than that, it is your guide for how much people that are not related to you will do to make sure your needs are met. Its where, when this happens, you feel valued, respected and you develop trust. These are the valuable life lessons that no matter how much a parent does cannot be gifted- knowing that they do what they do, not because they have to, but because they care is priceless.
7- its the people you meet and your interactions with them that make the world go around
We have had many laughs this year. Of note was the now infamous float parade (thanks for not sharing the dressing up as an octopus tenticle part until the last minute blondie!). We love people, although admittedly some days I’m just not as peoply as i used to be .. Lucy loves an audience and Amy finds crowds difficult so we try for a happy medium.
8- we see skills every day.
From the words Lucy uses which astound us, to the practical skills of every day life that I’m thankful for, we don’t miss opportunities to complement each other on the diamonds.
9- there are endless possibilities..
Amy’s ‘a spoonful of sugar’ https://instagram.com/aspoonfulof.sugar?igshid=1en7d49n2zrkb blog began as a way to document good coffee shops that we visit on the way to hospital visits. Within 20 min (I jest you not), Amy had identified a social purpose for it… and an income generating stream. I’m excited by how much purpose it has given her, at a time when her confidence could be rock bottom. I’m excited by development opportunities, not just for A spoonful of sugar, but most importantly, for Amy.
10- we are so grateful.
Amy’s odds on day 1 were slim. She’s still fighting. But although we had got complacent about physical health, nothing about Amy can be taken for granted. We are grateful for the support she has had and for the love we have all felt.
We are grateful for those instrumental teachers in both girls’ lives.
We are grateful for our families..
We are grateful that although us both being self employed is tough, its given us flexibility to meet new challenges this year, and see new opportunities.
We are grateful for each other.
On the last day of a year that’s taught us so much, Amy got her National Insurance number. Such a poignant dawn of a new start beckoning.