Hi @Birdwings ,
It's really nice to see your name pop up again here, but I'm so sorry to hear that things have been rough for your lovely girl.
I wanted to share a bit of personal experience here as a fellow parent of a child with complex health needs, because I can truly say that I do know how stressful it can be when there's a lot of health issues at play, especially when it ends in hopsitalisation - that was also my family's journey, but my daughter's issues are now well managed, and she's thankfully not had any really acute issues in the last 5 years.
My daughter also has anaphlactic allergies, along with a range of other chronic conditions (which happens to include a rare GI condition, which is related to her allergies) . So we've also been through that exhausting and stressful experience of finding the right specialists, then having a lot of testing done to unpack exactly what was going on. Without going into too much detail, it's involved a lot of procedures in hospital, a few surgeries, and a lot of trial and error with diet and medication. .
The reason I wanted to share that with you, is to let you know that I think you are doing a truly amazing job in supporting your daughter, in very, very challenging circumstances. COVID also means that people with underlying health issues are experiencing additional challenges- whether that be being anxious about their personal risk and exposure, changes to normal medical appointments, and managing health challenges at a time when a lot of the 'normal' coping mechanism that may help us aren't available.
In terms of helping to cope with lockdown - we do have a space for parents to chat and connect around those challenges here. What we're hearing from parents right now (and what I'm finding in my own household) is that it's really a 'one day at a time' feeling at the moment, because so much of the bigger picture is outside of our control. We also have a space to chat more specifically about home schooling - it's definitely something that is a huge change for most families, especially when we are also balancing working from home, and the grief that comes with losing so many of the social activities and brought us joy and connection.
In my case, we've actually relaxed some of our usual screen time rules, so that my daughter can connect with her friends more online. Roblox , houseparty, and FaceTime are all popular at the moment, and she's often chatting away with her best friend as they complete their school work. We've built regular walks together into our usual daily routine, sometimes I will shamelessly bribe her with a takeaway hot chocolate.
Does your daughter have any outdoor activities that bring her joy? We're finding activities like bushwalks, walks around our neighbourhood, and even silly things like making videos to send to family overseas to be really quite lovely.
I have also found it helpful to connect with other parents and young people living with chronic illnesses. ASCIA is the peak body for allergies in Australia, and they are a wealth of knowledge- their social media pages are also a good way to connect with people who 'get it'.
They also offer really helpful, practical advice, around managing life as someone with serious allergies. It made me feel less alone as a parent, and also helped me to empower my daughter in practical ways- for example, she has a well practiced routine of having her action plan/ EpiPen/ other meds in a little bag with her that she takes everywhere, we chose a nice bag together that doesn't look 'medical' which helped!
@Birdwings I also wanted to check in with you- how are you feeling in such a challenging time? I know that as a parent, I'm really aware of the risk I run of burning the candle at both ends - when I'm trying to support my family, do my best at work, and also cope with the changes that's come with covid and the lockdown. I'm glad that you've been able to come here and share a bit about what's happening - we are here to support you however we can
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