Another kind of normal…

So it’ll be 5 weeks tomorrow since we started our family lockdown. Edith’s school wrapped up on Wednesday 18th March and she didn’t attend that day due to waking at 4am and my nerves being shot to pieces. I am still struggling to get my head around this whole thing to be honest, I mean…

I woke up (at 4am) on Wednesday morning and immediately felt fear and sadness. I cancelled my scheduled (weeks ago) hair appointment and began to wonder where the next few weeks would take us. I wasn’t sure at that point what was really driving my fear; the virus, or having Edith home for the foreseeable. That sounds awful when you say it out loud but she needs so much more than me to stimulate her. I called my mum and told her that I wasn’t sending Edith to school, we had had a conversation on Tuesday evening about wether or not I should send Edith to school on the final day but when she woke at 4am that answered my question for me. Mum was going to come over and watch Edith whilst I drove to school to collect her equipment. She had broken her indoor chair at home and we were waiting for a new one so I needed to collect the one from school along with her walker.

The school felt eerily empty and as I walked down the corridor toward Edith’s classroom I wondered when we would ever tread these steps again. Upon entering Edith’s classroom, I was greeted by one of her teachers and I was immediately overwhelmed with sadness. Edith’s school is so much more than just that. She thrives on her routine and on that Wednesday morning it had abruptly come to an end. There was no winding down to easter with hunts and painting, no singing in the school hall, no dancing and playing with friends. One day it was there and the next it was not. I was devastated for her and the effect this was going to have on her. I had no clue how I could capture these amazing people and bustling environment that she lives for, and bring it home. I was in disbelief and so were the staff. I felt as though we would never return to the life that was being left at that moment, that nothing would be the same again and weather I was right or not remains to be seen.

Week one was a total novelty. We can totally do this I thought. I shielded myself from the news and tried to stay off of social media so that we could focus on what lay ahead. Week two….who am I kidding, I have no idea what happened in week two or any week after that. I had to go back and count on the calendar to actually see what week we were in. On the whole it has been ok. We are all well and that is the absolute main thing. School have been amazing at providing resources with little time to prepare and we are managing to do two or three school activities a day. Edith’s teacher came to the house yesterday to drop off Edith’s resources for her term and it was so lovely to see her and one of the teaching assistants, I could’ve have talked with them all day. Unfortunately school can’t provide us with an EyeGaze (they don’t have one to give) which is what Edith could really do with but we have reverted back to the old low tech system and she seems to be coping quite well. Her Innowalk has been a god send. She has been in it every day for at least 35 minutes at a time and it gives me great comfort to know that her physical health isn’t going to be affected by all of this. Some days have been really tough. Edith can shout for hours on end with no way of knowing the cause of her distress. Some days we have just done what we can to try and minimise our stress and hers. I’ve decided that’s ok. She is missing school so much, I can’t imagine what she thinks is happening.

One thing that has struck me is how nice it must be for Edith to have both her parents giving her equal amounts of attention for prolonged periods of time. Sometimes she’s in bed before Dan even gets home from work so it’s nice for her to have some unlimited time with him. Dan finished work on 20th March. He owns his own business but was able to furlough himself and we decided together that this would be the best option for our family. We haven’t had a vulnerable letter for Edith but I don’t need a letter to tell me that she is at higher risk than most. Edith has had pneumonia 4 times and last time she had it her right lung partially collapsed. In the beginning, before the schools shut, I didn’t view her as such. She hasn’t been in hospital for 3 years and has the ability to fight a common cold was much better than she ever used to, but as more evidence about this virus emerged I began to feel differently. Maybe I was naive. It was becoming more clear that children were at risk and therefore Edith was definitely high risk. I decided that it was best to register Edith as vulnerable on the government website despite not receiving a letter from a medical professional. This must of been the right decision as she was given vulnerability status and we were allocated priority shopping slots. As the weeks have gone on these slots have eased much worry and stress. My mum and dad both have health conditions that make them at risk so it’s been a comfort to keep them stocked up as well. We have lived in our own little bubble and not had contact with anyone outside of us 3 since 23rd March.

Since having Edith and cancer, I have struggled unbelievably with health related anxiety. Strangely, since all this began I haven’t felt anxious and I think this is because of the bubble we are in. What I have been through has made me control driven and my anxiety kicks in when I feel out of control; in our bubble I am totally in control. I have avoided sharing, commenting or scaremongering on social media as I don’t believe this to be helpful to anyone, especially me. I have considered where I take my information from and only taken what I have from trusted sources. Everything that passes the front door is anti-bac’d within an inch of its life and with none of us going out, nothing can come in. We are having daily walks and sometimes we go for a drive too. Edith loves being in the van with her music on and at times it’s been an escape for us all.

At the beginning I had no idea how we would survive home schooling and as time went on I realised that what was important is that we survived. We have at least 3 more weeks of this new normal and even when this is all over it’ll be hard to say what kind of life will be on the other side. If I come out of this not knowing anyone touched by COVID-19 I will consider myself very lucky; so many will not have that luxury. We have always been grateful to our amazing NHS but more so now, than ever. I can’t imagine what it’s like walking in to the frontline every day and leaving your loved ones to do so. We all have our burdens to bare but it takes a true soldier to bare the burden of others on top of their own.

🌈 Thank you NHS🌈

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