It is really hard but it’s what we’re living through and, you know, I just want someone to tell me when it’s going to go, you know, if you break your leg, you know, you have an end point and it might be an end point with some error bars but, you know, you do have an end point, and with this, you know, when it’s really, when it’s really bad I just feel really maudlin and I want my able-bodied child back. And I think it was really tough at first and then, we’re going to Spain in three weeks on holiday to stay with friends and I always thought she’ll be walking by Spain but she isn’t going to be. But that’s okay because we can fly with the wheelchair I’ve checked it all out.

I have to worry about her overdoing it and all this extra kind of stuff and I can’t, it’s too far ahead I can’t think about it. But I wonder how long it will take, I just, how long will it take, you know, and even when she’s walking, how long will it take before she can play football, she could run further than anyone in the school, you know, how long will it be before she, every birthday we had sports parties because that’s what she wanted, last year she made us all play cricket, the year before we all played football in the rain, you know, how long will it be before she can go swimming and then come home and bounce on the trampoline and then go and play football again.

When we looked around secondary schools, we always asked ‘What girls’ sports teams do you have?’ and they’d be like ‘Oh we can tell you about the dance group.’ And we’re like, ‘We’re not interested, [my daughter] wants to play cricket, football, and rugby, what do you have?’ And, you know, it was, moving was a huge part of what she, it was her identity and now it’s awful, it really is. But you have to believe she’ll get better.

I really hope I can tell you something hopeful, I felt really hopeful on Saturday when [my daughter] was using her crutches and then she absolutely crashed and when she crashes it, it’s the worst, I think that’s the hardest thing.

Yeah it sort of seems like you’re making some improvement or recovering slightly just, you know, you get sent right back to the beginning again.

You plan for the worst and hope for the best, I think the thing that worries me most is that, and I’ve not told anybody about this, is that we will get through this and then what happens when she’s 13 and she catches a virus and this all happens again. That’s the thing I think that frightens me most. But that’s good because it must show that I am working on the assumption she’s going to get better. So, there you go, subconsciously by worrying about this, I know in my head she’s getting better, there we go.

So that was two Tuesdays ago, then we went to the Long Covid clinic and we had three people on Zoom and it was a lot more relaxed because we were at home and Bella was colouring and we had an occupational therapist who was like you’re carrying Bella around everywhere that sounds quite unsafe and I thought well I’ve been doing it for nine weeks now, you know, I know it’s not safe [laughs]. Tell me about it. And she said that she thought we needed a hoist to help me get her in and out of the bath and all this kind of stuff that I needed weeks ago and then they said we think you need to see a physio.

And then there was a psychiatrist who, I said, she asked me what do you think’s wrong with Bella and I said I think there’s pain in her knees and I think it really hurts and I think when she’s achy it hurts more and I also think she’s nervous about putting weight on her knees because I think she’s worried it’s going to hurt and she said, “Can you tell me more about the fear of moving?” And I really, I felt really nervous about that because I’d had that awful conversation the week before and whilst I appreciate mind and body are connected, there’s something hurting her in her knees.

And now are you worried about Covid coming into the house again with Bella being where she is?

I think so, at first I wasn’t, at first I thought we’ve all had it apart from my husband because he kept separate from us when we had Covid, slept in a different room and kept out of our way. Because he suffers from, I don’t know, fibromyalgia and stuff so the last, I mean so I’m really worried about him catching Covid and having a reaction similar to [my daughter]s. I’m worried about flying to Spain, I’m worried that he’s going to catch the virus on the plane and become ill in Spain, I’m worried now that, oh you poor thing, I’m worried about…yeah because for me and [younger daughter] it’s been four weeks, for [my daughter] it’s been more than six weeks so I think she can probably catch Covid again now. But I, it won’t stop us sending her to school and it won’t stop us from doing certain things.

There’s a kid who’s in Lincolnshire or something, he’s been in a newspaper reports a couple of times and when I read that account, it was a very similar thing I’d heard to [my daughter]. He couldn’t keep up with the dog walks then he started coming down the stairs on his bottom but when I read that he’s still in a wheelchair…and I cannot believe that’s the future for [my daughter] a year from now, I cannot, I cannot, and so I’m nervous to read more and find out more in case. I can’t, I can’t believe that.

I think that’s why I don’t interact with Long Covid Kids so much because I think, I still think this is going to go away. I don’t think it’s going to go away tomorrow but I don’t know, I don’t think I’m ready to hang out with parents whose children haven’t got better for a, after a year, just yet. Some good news stories about Covid would be good [laughs]. I don’t…you can get that out, some stories where people have been through stuff and they’ve got better because there’s lots of stories where people haven’t and it would be really good to see the other side. I was thinking of e-mailing Long Covid Kids and asking them for some hopeful stories to be posted on their Facebook group instead of just worst-case ones [laughs]. Maybe they are all worst-case, maybe there aren’t any good news, don’t know.

And so, a week after that we were referred to the Long Covid clinic. Ah no, so a week after that the psychiatrist appointment came through and that was just awful. It was really one of the most negative experiences of my entire life, everything I said she kind of twisted the answers. She asked really loaded questions and so, for example, one of the things she asked me was are there any stresses for [my daughter] and I said no, I really don’t think so, I think my child is happy and joyful, you know. She enjoys playing outside, during lockdown we spent a lot of time climbing trees. I really value nature and general wellbeing. Then I spoke to another doctor, proper, I’m stereotyping now, I spoke to another doctor who I presumed was a mother because she was a lot more compassionate and she asked me how I was and how I was managing and she said she knew it was really tough and that the last thing I wanted to hear was that this was going to take time but probably time was the only thing that was going to do.

My colleagues have been really kind, I work from home, I work evenings and so I feel sad, I mean, I’ve predominantly been in research so I didn’t really worry too much about not being in the department because no-one required me to, no-one needed my face to be there but now that I’m a lecturer and I have tutees and supervision students who might like to see me, and I feel bad that I’m not there but the only way I can make all of this work is by working from home.

But close colleagues, I’ve worked there for a long time, you know, and I’ve always pitched in and helped others out when they’ve needed the load to be shared and I think I have a good reputation, I think everybody’s being supportive. We haven’t told HR because they might make life really complicated for me. At the moment nobody knows really officially what’s, where I am.

Yeah, yes so [younger daughter]’s eight she’s at the same school with [my daughter] and there was an incident two or three weeks ago when I’d been so obsessed about getting [my daughter] into school in a wheelchair and that I’d completely forgotten to say goodbye to her [laughs] and so I just came home and cried and cried and cried oh honestly.

And then I phoned school and checked that she’d got in and that she hadn’t like wandered off with a stranger and that I’d sent a message to her teacher on dojo saying I’m so sorry I am possibly the worst mother in the world I did not say goodbye to [younger daughter] this morning and then I texted [friend] who was also with [my daughter]and said can you go and put your head into [younger daughter]’s classroom and see, and try and apologise to her, so yes I am taking care of my other child but I just feel tremendously guilty.

My mum lives about an hour and a half away and my dad’s got prostate cancer and he’s currently going through 20 days of radiotherapy. So, today’s day 11 of his radiotherapy and my Great Uncle has just died and so I need to take my mum to a funeral because my dad can’t miss it and, do you know, I actually have a job as well [laughs]. So, it’s, we are, you know, my mum doesn’t know who to worry about.

She missed her friends and we tried to get a couple of them round and that was good but also it really wore her out, you know, and at the time we didn’t, I didn’t know how to manage her, you know, I saw her playing with her friend and so I let her carry on playing and then she didn’t move for a week after, you know, because she’d over done it and I didn’t know.

So my main motivation to get her back to school was to see her friends, I’m not worried about her education at all, you know, she’ll catch up. So now she’s back in school and she sees her friends and I think that’s good, she says that they forget about her in the playground and I think they wander off and realise [laughs] that she isn’t going to follow them and I think that’s probably why she wants mobility scooter so she can run after them and, and. Because Bella’s a real leader, you know, everybody loves to play with Bella. you know, there’s a kid everybody wants to play with, it’s Bella, because she’s so much fun.

So how is she dealing with it? So, I think it’s been really tough. We try and get friends round, we try and, she’s seen her friends at school.

And so they, they say it can’t be arthritis and I said can it not be arthritis just like really stuck in her knees that you can’t pick up on something and, you know, they’re just like you’re refusing to accept the connection between mind and body, and I was okay I don’t think that’s right I just don’t think there is a test that has picked up whatever it is that’s causing her pain and that could be right because we have no proof that it’s wrong, just as we have no, you know, the fundamental thing, the working argument seems to be that because we’ve done some tests and the tests have all come back negative then it must be in your head and therefore this is a psychological problem. And I don’t understand why it can’t be, we’ve done some tests but we haven’t done one that shows us anything, we don’t know what’s causing this, let’s focus on rehabilitation, you know, it doesn’t have to be, anyway.

We saw some bigger girls just after we left the house and I noticed that she kind of put her hood straight up [laughs]. And I said, “well done [my daughter], if you put your hood up nobody can see you!” [laughs]. And so, we did tease her, and we try and laugh and, you know, we try and make jokes out of the whole thing, a little bit of black humour but, you know, it’s kind and it’s supportive and she does laugh. She, she laughs a lot but recently she’s, you know, she’s saying, you know, why has this happened to me mummy, you know.

Oh yesterday she said that she really wanted to bounce on the trampoline and she can’t, she really misses being able to jump and so I put her on the trampoline and me and her sister bounced her up and down and I thought I was going to wear myself, but it’s okay I didn’t [laughs] and you know, it’s just, but it is just that, you know, before this happened I would have just sent them both out to the trampoline and I would have got on with dinner and it’s just everything, it really is like having a newborn baby again. You have to be there a 100% of the time, you have to be positive a 100% of the time.