Coronavirus

It has been a long time since I have published a blog post. That’s because, although a few months ago my head was buzzing with all the different things I wanted to address with regards to disability and all the different things that were going on in our lives with Louisa, when the Coronavirus situation got very real, everything I wanted to say felt less important in comparison to the very serious situation everyone had found themselves in.

Yet as I started writing various posts (I have written many drafts but I haven’t published any) I’ve found that my posts appear to seem somewhat political. I don’t want to tarnish my message and teachings about Louisa with politics. I don’t want to lose the chance for people to learn about my beautiful girl because perhaps we don’t agree on the level of support people with disabilities need in this country. Louisa is so much more than any of that and I believe everyone needs to learn about her and other people like her.

However, there is no denying that as parents of a disabled child, David and I have stronger views today than we have ever had before. Mainly because we have seen first hand how vulnerable members of our society can be let down. The truth is, it doesn’t affect you until it affects you. So many things definitely didn’t affect us until we had Louisa. And I’m not expecting people to think the way I think through this blog, but yet I wonder if people understand the smaller picture about Louisa, they may think differently about bigger picture. Just a thought.

I feel I need a blog post acknowledging Coronavirus and how it is affecting David and me as parents of a child with a disability. And although it’s such a huge thing, I don’t feel as though I can brush over it as it is having such an effect on everything in all of our lives. After this post I will go back to focusing on some of Louisa’s various needs and how we are striving to achieve all the little inchstones to help her reach some very big milestones. Watch this space!

Over the past few weeks (after – understandably- a complete shut down of services) we have seen that things are starting to move with the NHS and we have had various appointments conducted over the phone, like physio, occupational therapy and speech and language therapies. We’ve had updates with her social worker and various professionals involved with L. We even took Louisa into hospital to see a consultant last week as it couldn’t be done over the phone. Louisa’s therapists have given me lots of instructions for how to help with any regression Louisa may have as a result of being at home, which unfortunately we are experiencing. And, as grateful as I am to have that vital input, once again the heavy weight of not just being Louisa’s mother, but also being her carer, her nurse, her physio, her occupational therapist, her speech and language therapist etc etc….. takes its toll. Sometimes I wish I only had to be her mum. I never take for granted the ease at just being Fred’s mum. It’s something I am eternally grateful for.

I’ve also recently had a really good chat with L’s paediatrician (anyone who knows me knows we think he is brilliant). He really lessened my anxiety regarding Louisa being in the extremely vulnerable category. After talking it through with him, I realised that although the system has flagged her up as ‘extremely vulnerable’ – when looking at the bigger picture of the Louisa we know in person, not just on paper – there is an overwhelming indication that it is more of a precautionary measure to shield. Presumably because there are so many unknowns about her rare genetic disorder. So rather, we believe – from the Louisa presented in front of us at the moment – she falls more into the ‘clinically vulnerable’ category rather than the ‘extremely vulnerable and needing shielding’ category that the NHS England letter we received said. Louisa’s Ears, Nose and Throat (ENT) consultant also agreed with this as we went through Louisa’s history and discussed all the risks. This isn’t us wanting to get out of shielding Louisa, not at all! Our main priority will always be to keep her safe and we have no plans to change what we are doing right now. This is us doing a risk assessment and considering all the evidence for the future. We will have lots to think about as the lockdown relaxes and how we are going to protect louisa medically whilst also protecting her development. We will also have to consider how we will manage the future with Fred going back into the world and school and David going back to work before there is a vaccine/ greater control over the virus. Unfortunately it’s not just about her. I don’t know what we will do, I guess we will cross that bridge when we come to it. And to put it bluntly, David and I are not overly concerned with other people’s opinions for what we should or shouldn’t do (other than her various consultants’ advice of course), we are confident that we will make the best decisions for our family and will support each other through this like we always do. We just need to weigh up all our options, find what we are comfortable with and take it from there. Everyone will have their own things to consider throughout the next few months. I make no judgement on what anyone does, you need to do what you need to do to get through. If that is sending your child to school or keeping them at home, if that is having carers or not, that is your personal decision based on your personal situation. We all only want the best for our families. We are all just trying our best.

But, and here I go….. the truth is, we are finding this hard. I know perspective always tries to show you that other people have it worse. And I know they do, I know that. I know how lucky we are. And I am so grateful for all the good in our lives just like I know everyone reading this with a roof over their head and food in their fridge is. But I guess what I want to say that although we portray that we have got this, that all is ok – and of course ultimately it is because we are safe and we are well – the truth is, the physical and mental toll caring for Louisa’s needs takes on us is overwhelming. That there are days when we are really struggling with the enormity of it all. There is no denying that it is very different raising Louisa to raising a typical child through lockdown. It really is. There is no sugar coating it.

Our – nearly 4 year old girl – cannot hold a spoon or feed herself, she needs support to drink, she doesn’t play instead she just destroys everything and makes more mess than you could ever imagine – there is no control over this. Having to watch her for 100% of my day and night, is so tiring. She still screams all night. She is such a danger to herself. She is so tall now and she can reach door handles, she can reach knives, plates (you name it) on the kitchen counter, table lights on the side boards, again – you name it and she will pull everything down. She doesn’t know what is dangerous and she doesn’t learn from her mistakes. We are having to pin her between stair gates at the moment for her own safety. She needs to be carried up and down the stairs as she cannot do it herself, lifted in and out of the bath, in and out of her high chair, in and out of everything, she needs to be physically supported throughout bath time, throughout nappy changes. And she is heavy now. Her hypotonia means she is literally a dead weight. Looking after her is very physical. She needs changing a million times a day because she smears/ gets things down her, she is obsessed with getting into her nappy, we have to mitigate that at all times otherwise we have to spend ages wiping poo off of walls and carpets. She will not listen to a book or engage in any sort of play with me. Her attention span is about 10 seconds. Even playing play doh is a two parent job. David holds her hands whilst I sit in front of her face to face to engage with me and prevent her from eating it. She eats EVERYTHING. It’s so scary that she doesn’t know what is and is not food. This is not the same as typical parenting. This is not. I love her with every piece of my being, but this isn’t a phase. This isn’t an 11 month old baby who will outgrow this , this is a little girl with severe developmental delay. This is a beautiful girl who needs services. And although I feel like I’m just listing all the difficult things she does and although I’m aware it makes it look like I’m upset or annoyed – I need you to know that this is not ‘normal’ what we have to put in for Louisa to be safe. And to get her to thrive requires so much more time and energy that unless you are living this life 24/7, you really will find it difficult to understand. This is so hard for us and if I sweeten it all by saying how beautiful and lovely she is (which obviously she is!) I feel it confuses the view that we are just like every other stressed and tired parents. Because, the truth is, as much as I hate highlighting the differences, parenting a child with so many additional needs is not the same.

But, I’ve learnt that if I allow myself to fall down the rabbit hole of all the things Louisa needs help with, when I let myself think about how wide the gap is between Louisa and typically developing children the same age as her, if I allow jealously or bitterness of how (seemingly*) easy other people have it (*because I know nothing is easy for anyone right now – everyone has their struggles). But if I let negative feelings overcome me, the weight of that pain is so heavy that I crash. I can’t hold myself up. Whereas if I just focus on today, I can stand, I can breathe and I can enjoy the now. I am all too aware that the now might possibly be the best it is ever going to be. Louisa could start significantly regressing tomorrow and I won’t be able to forgive myself if I look back at these days and realise that they were the best days yet I was too sad and bitter to enjoy them.

And that’s how I am seeing this pandemic. Embracing today because it could all change tomorrow. I am focusing on my little team having a lovely time in our little bubble. We have laughed, played, had teepee sleepovers in the living room, had lovely walks together. And we’ve had fun. David and I have spent more time together than ever before and it’s been great! I cannot let myself worry about how this pandemic will affect Louisa in the long term. I cannot cry about the missed appointments, therapies and surgeries. I cannot let myself be weighted down by the things so far out of my control. I cannot cry for all those struggling through this, I cannot cry for those in much worse situations because I cannot carry the weight of the world when I am just about managing to hold my family up. All I can do is my best to support others such as donating to food banks and checking in on friends. And for many people in similar situations that is all we can do.

Louisa has taught us – she teaches us so much every day – that happiness isn’t about anything else other than your own state of mind. You can find happiness even in the darkest moments. In the middle of a pandemic you can sit in your house and laugh until you cry because of silly voice overs on Tik Tok. Being happy does not mean you’re naive to the pain outside your bubble (or even inside your bubble), it’s important to acknowledge what is going on in the world. But you have to be kind to yourself and in times of trouble, try and only let in what you know you can handle. Because tomorrow you might not have the option. And you might have no choice but to have to handle something with even more weight. Maybe this isn’t the best way to deal with things because we can’t always be scared of the future. But – at this moment in time – it works for me. Yet as always, I know this is a luxury because David and I have each other. My privilege isn’t lost on me I promise you.

But that doesn’t change the reality that I’m tired. Some days I am really struggling to be everything Louisa needs. And other days I worry about how my focus on her physical and mental needs is impacting Fred – and his very typical little five year old boy needs – in the middle of this crazy time. But for the first time in my life. I don’t need people to tell me I’m doing a good job. For the first time ever I know that I am doing a great job, especially in these circumstances. That I’m doing really well. That we are still achieving great things even when things are tough. And doing it all without any support (support that the state knows that we need because the authorities recognise Louisa’s needs are especially significant). We are coping and pretty much every day (give a few days here and there 😜) we are finding joy. That’s amazing. But I am yearning for the day that we can have some help. I know my body can only take me so far. Louisa’s needs are becoming more and more intense as the days go by.

I don’t want this to come across as ‘everyone has it hard but we have it harder’. That is not what I am trying to say. I know that isn’t the truth. We’ve got it pretty good and this isn’t a competition. Every person reading this is in a very different situation. And I am so lucky to be in my situation. Rather I just want to acknowledge the difference between how we are muddling through with Fred compared to how we are muddling through with Louisa. I want the difference acknowledged that this is why parents of children with disabilities need the support of charities and social services. It is not a case of ‘lazy’ parenting or not being able to handle your own child, but rather being honest that you are only human and not always able to fulfil your child’s very complex needs. I am fully aware that I cannot be everything Louisa needs. I can try my best but ultimately that is why we need the respite and care packages in place. That is why we need services. This is why I need a break. Because it is hard.

So although not everyday is easy, I’m reminding myself that brighter days are coming. That help will be here once again. That when the day comes when Louisa can safely go back to nursery, those 15 hours of respite and the additional carer hours we have recently been given will never be so appreciated by her or by me! I’m also reminding myself that everything in life is temporary. This too shall pass. And when we have all picked ourselves back up, I know nothing will look the same to anyone after this.

And although I’m just trying to find silver linings here….. maybe that isn’t such a terrible thing.