The Pandemic Days

The Pandemic Days

I’ve done the same thing I did prior to my last blog.  Vanished.

I think we’d all agree a shit load has changed for everyone in the last six months.  I hope everyone is doing ok.

Our pandemic days began a week or so earlier than lockdown, as I decided to pull N from nursery. The energy and uncertainty that was oozing out from us all isn’t healthy for any child to be around so I felt it best to reduce Ns presence in it.  N and I have spent our days on the farm in the fresh air playing with the animals.   

I have never taken for granted where I live. I’m exceptionally lucky. We live in the most beautiful part of the world and with a lot of outdoor space to play in.

I am not going to pretend we had a tough lockdown. Even in “normal life” if you don’t want to see another human you don’t have too. So self-isolating was a doddle.  That whole side of this new situation was fine. I like to think we are an adaptable family.

I got asked a lot if N was on the shielding list.  It’s written that Rett syndrome impacts the immune system and therefore they will catch illnesses much easier than “normal” children.  They are exceptionally susceptible to pneumonia and chest infections.  So on paper Covid-19 was ringing some serious alarm bells.

We never received a letter about shielding or N being on the high risk list.  I heard rumbles through the internet about Retts and all sorts of other rare diseases being missed off the list too. I’m going to be honest, that didn’t bother me.  I actually think we are all quite capable in such situations to make our own judgments and calls on how we want to proceed and conduct ourselves in such unprecedented times.

There have been two quite strong trains of thought through this pandemic, opposing beliefs of how to deal with it. I can see both sides and I think it’s important to act in accordance with your own beliefs but not judge others for theirs.

This pandemic has taught me something that for me is invaluable. And honestly, I don’t think I’d have had this realisation without the pandemic. There are always silver linings to these things even if we don’t see them straight away. There are always opportunities for growth and understanding in everything that happens.

I wanted to share with you what it is. I’m sure for some you already known this and for others it’s just not a lesson you need to learn. 

Before I pulled Niamh from nursery she had a fabulous routine. School three times a week. Seeing Daddy every other weekend, quite a busy old life but a lovely one nonetheless.  Nothing that to the naked eye is particularly “stressful” and from my part I would never put her in a situation that I thought would make her stressed and anxious. That’s the last thing she needs.

However, when we went in to lockdown I worried that Niamh would struggle with the lack of nursery, the lack of that routine. I thought she would become depressed and bored being at home. I was completely wrong. Within a week of her being in lockdown she had stopped pulling her hair out completely.  Her arms and hands were more relaxed, she was sleeping better (I didn’t think that was even possible) and her digestion was pretty perfect. To sum it all up, her Rett symptoms have reduced yet again.

I know what some may be thinking, “but you’ve already said due to her diet and your holistic approach to health she is quite mild on the Rett spectrum”. Exactly.

She improved even more.

So I should also add something else in here before I go on.  I’ve gone back to school, I’ve been studying holistic medicine and have become qualified in a few of the therapies that I use for Niamh and myself.  I figured that considering I live quite a holistic life and speak about it so much, really I should take some exams and expand my knowledge.

Holistic medicine and therapies work with every aspect of your being.

The theory is to find complete balance and physical wellness you need balance in mind, body and spirit. If one of those is struggling it will impact the others.  To be at optimum health all three need to be well.

Now before I say what I’m about to say, I don’t want to ruffle any feathers or assume others ignorance, far from it. However, if I offend anyone I apologise.

When it comes to Rett syndrome there are behaviors that have been coined “Rett episodes”. These include screaming uncontrollably for hours at a time and crying for hours at a time. With no one being able to console the child. I’ve seen people say, “oh that’s a Rett episode”

I fucking hate that terminology.  If I was unable to verbalise my feelings and desires, unable to control my limbs, unable to stop the continuous shaking that my body does and in essence be completely trapped in a body that can’t do a thing I want. I would want to scream and cry too. I’d be emotionally completely on edge, heartbroken; In fact, the thought of it makes me want to cry.

I think perhaps some of these “episodes” are actually a release of emotion, the heartbreak and anguish these girls endure everyday.  A big emotional release.

Have you ever witnessed someone suffering with extreme emotional turmoil? People can start to have ticks, repetitive movements; they can start to rock in a chair. 

What I’m trying to say is I missed this with N. I hadn’t realised how much stress I was putting on her with her routine. She wasn’t able to say to me “mummy, I find nursery really stressful and too busy”, “Mummy I miss you when I’m at Daddy’s.” She can’t even speak to me on the phone if she’s feeling home sick.

Emotionally I had been putting her under a lot of stress that she had to cope with internally, on her own. Moments in her life that she had to deal with, within herself. Bottling it up if you will.

Being at home has made me realise this. She has excelled with her walking, excelled with her eye gaze. She feels safe and calm.  And with that has come some ease in her physical being, because her emotional state is more balanced and at ease. 

I have realised that even with a syndrome like Rett, emotional wellbeing is going to impact the symptoms hugely.  Small things will impact them emotionally far more than perhaps for other children.

I’m sure lots are reading this thinking “Well, of course! How could you not realise this!!” and I feel like part of me did know this but also the part of me wanting to give her a “normal” life took over a bit and I became distracted. I lost sight of that.

I suppose within all this…. whether you have a child who is “normal” or one as uniquely challenged as Niamh, their emotional wellbeing is the most important thing. It encompasses everything. A happy child is a healthy child. Or in our case, a health-ier child.

I’m conscious I could go deeper in to all of this but that would be an exceptionally long blog post.

I’ll leave that for another day.

This pandemic has been the best thing for my daughter and I.  It has made me step up as a parent, be present and I’ve learnt a lot about what my daughter wants and needs emotionally. And that is priceless.

Niamh, thank you for being so patient, your resilience and strength is unquestionable.  Thank you for choosing me as your mother