Category: General

This blog is about the one thing that everyone is talking about – Covid 19. This virus and its surreal and unpredictable impact on our lives is unprecedented. I hope that in this blog I will be able to draw comparisons between what we are all feeling now as we navigate our way through this unpredictable time to how we felt when Ivy was poorly and in her subsequent passing. I am by no means trying to turn this pandemic back on us or Ivy and say that what we went through is the same. It’s just that when Ivy passed away one of the comments that people would say was “we can’t imagine what you’re going through” In that sense, Coronavirus is very different. We are, as a whole world, experiencing similar emotions at the same time. While we are collectively feeling this way, I thought it may be a good idea to tap into those feelings, as it may help us all to empathise with people when they start to go through difficult times in the future. I think we can learn a lot from the Coronavirus.

Firstly, for a couple of weeks now across the world there has been a feeling of anticipation that something bad is going to happen. I felt this way when Ivy was struggling to meet her milestones. Some may call it mother’s instinct, I just had this growing sense of dread. I know it was easier to think that maybe I had some sort of Post Natal Depression than to think that something may be wrong with Ivy. We can understand that now, as we watch the world closing down around us. At the start we were very quick to dismiss those who were concerned. How many times did we hear ‘it’s just the flu’. Now as the impact on the economy and our NHS is clear, we see that we need to listen and we need to take this seriously.

It is at this point that we are starting to realise that things cannot go on as normal anymore. When we were admitted into Wexham Park, we began to feel this way. There was then and is now a sense that the weeks ahead are going to shape our future for years to come.

Many of us, are self isolating, relying on others to bring us food and sort out jobs for us. When we were ‘living’ in the hospital, we too were reliant on others. Our parents brought us our clothes to change into, cleaned our house while we weren’t there and were there at the end of a phone call whenever we needed them. We lost control of the real world, did not visit people’s houses and adapted to a new environment. I know many of you are apprehensive about not being able to leave your home, about going stir crazy and I totally understand. Yet the truth is when we are put in challenging situations we can cope with them. Humans find a way to adapt. When Ivy was taken to Oxford in the specialist ambulance, I initially thought, I can’t do this. I can’t travel with her in case she passes away on the journey. When we arrived at the Paediatric Intensive Care Unit, I didn’t think I would be strong enough to enter into the room surrounded by very poorly children. Yet it became familiar within days. When they told us there wasn’t a room in the Ronald McDonald house and that they could offer us the Breastfeeding Room next door to sleep in, Mike and I took it because we didn’t want to be far away from our little girl. I promise you, when we are stripped down to basics, there’s a sense of being aware of what is essential in life and what isn’t.

This is familiar to what we are seeing in the supermarkets. Yes there are thousands of people who are stock piling in fear that we will run out of all the foods that we have grown used to eating on a weekly basis. Yet if we are sensible and flexible, we can see that we can adapt and be grateful for the food that we are able to get. It was definitely this way in the hospital, food was simply a necessity to keep us going. When we were lucky enough to be moved into the Ronald McDonald house, I remember the simplicity of being able to buy just enough food to stock our shelf in the cupboard and our shelf in the fridge and to cook ourselves a meal. I hope people can embrace this as cafes, pubs and restaurants shut and find a joy in cooking.

Now that the majority of people are working from home, there’s no longer the need to commute into work. When we were staying in Oxford, we were without our car, so we walked everywhere. We walked to the local park and found a comfort in nature. We would look up at the sky and we would look at the trees that had been standing for years and we would see how small we are in comparison to the whole world. As far as I understand we are currently still able to go out for walks (as long as we keep our social distance) and be in nature. Hopefully it will help us to feel proud of the world that we live in and help us connect to it.

I also want to take a moment to mention, that while you are working from home, how so many of the doctors and nurses stay on the hospital site. The nurses have cottages on ‘Ivy Lane’ – we loved the name! The doctors on call would stay in the hospital. We stayed in one of the old ‘on call’ rooms on the highest floor of the hospital. It was our upgrade from the breastfeeding room, before the Ronald McDonald Room was available. They were very basic; a bed, a sink, a toilet. I don’t think I had ever considered how doctors functioned on such little until I saw it up close. That was in ‘normal’ circumstances. I am sure that these doctors and nurses are functioning on even less right now.

I wanted to take a moment to talk about the staff at the hospitals. It has nearly been a year since Ivy passed away, but I still often think of these members of staff. They had such an impact on our day to day lives. They were there for us in our worst times. Now in a new crisis, they are here for all of us again. What I learnt in our short stay in hospital, is that these medical staff are extremely well trained, they can respond in seconds and know what to do, that they are compassionate and caring, and care for the families as well as the patients. Have any of us ever stopped to wonder whether they have elderly or sick relatives who might be self isolating themselves? I remember one nurse who was heavily pregnant being given Ivy to look after. How difficult it must have been for her, to be taking care of a very poorly baby, when she was about to have her own child? Did she feel uncomfortable and guilty around us? I think it is easy to overlook that these doctors and nurses have lives and family outside of the hospital. That’s why as a teacher, I will happily volunteer to help at school over the next few weeks. If I can help them to help others then I will – without question.

Now I know that the media are speaking about ventilators and Intensive Care Units pretty much daily. The word intense is appropriate here, as the atmosphere in an ICU is unique. There is a sense of quiet except for the beeping of all the machines that are performing different functions. Critical care nurses are with one patient at a time for 12 hour shifts – normally. The hand over is thorough, every single aspect of their patient’s care recorded on the computer and shared. And due to the seriousness of the people’s conditions there are not many patients in the intensive care unit. I think when Ivy was in PICU, there were 8 beds and two isolation suites. The High Dependency Unit next door was also small. I can understand what the government advisors are saying, we have to take these precautions even if we are feeling fine, because we cannot over stretch the ICU. The amount of equipment needed would be thousands and thousands of pounds per patient. Ivy had different types of ventilators in her short stay, one that went in her mouth, one through her nose, one that was less invasive. She had a feeding tube through her nose with special high calorie milk, she had medicine being administered intravenously. All of this would have cost thousands – we are forever in the NHS’ debt. Please listen to their advice. From somebody who has seen someone they love hooked up to all this equipment, trust me when I tell you that that image will never leave you! Yes there is talk of the over 70’s population being ill but Ivy, with her SMA, would have been extremely ill had she caught this virus. We all need to take this seriously.

One of the toughest things that I have heard about are those people who have had to cancel important plans due to this outbreak. I am so sad that we ourselves missed the wedding of a close family friend. Luckily their wedding still went ahead, however I know for many this is not the case. Holidays, birthdays and special days such as Mother’s Day will all be affected. When I lost Ivy, I felt that all my future plans went with them too. I lost Ivy’s first word, Ivy’s first step and Ivy’s first day at school. For some these changes to plan are temporary and not permanent.

The big impact on socialising is the aspect that seems so unnatural. There’s a weird vibe around at the moment, the outside world seems harsh. That’s what I found immediately after losing Ivy. I couldn’t face seeing people, I enforced self isolation on myself. Yet, in returning to work I have realised how much I have enjoyed being around other people. I love to hear about other people’s lives, the good and the bad. This is why the social isolation seems so difficult to us, I think humans are sociable by heart. We are lucky to live in a world where we can communicate by phone, text, social media and video calls. Let’s take advantage of this and reach out to other people in whatever way we can.

Money worries are huge in this pandemic. The security of people’s jobs are up in the air. While there is support being put in place, it is still an unsettling time. I know when we lost Ivy, we were also offered a mortgage holiday from the bank, as we were too caught up in our grief to be able to function at work. We both returned part time, as a transition back in to the real world, so we have adapted to live on less money for a short time. I truly hope that for all of you who are struggling financially that the Government will help you.
The phrase ‘the invisible enemy’ is something that I hear Boris Johnson speaking about during his daily briefings. I think the fact that it is impossible to see, makes it harder to deal with somehow. This is similar to Ivy’s genetic condition. The fact that Mike and I both carry the faulty gene was invisible to us, until Ivy presented in the way that she did. We live with the knowledge of both medical conditions now and we know how to navigate around them, but that doesn’t mean it is an easy thing.

And finally, after Ivy passed away, we wanted to do good. It was a driving force that pushed us to get out of bed in the morning. People told us we were brave and strong, but I see people doing this all over the world now. In bad times, people’s kindness shines through. I’ve seen the teenagers collecting food supplies for the elderly. I’ve heard the singing to boost morale in Italy. I was even told that somebody put Christmas lights up to cheer people up who are self isolating in their street.

During this time we are particularly aware of those who are isolated, ill and struggling financially. Yet I know for many of us, in ‘real’ life we are dealing with these particular issues silently and invisibly. I hope after the Coronavirus has done its worse, we will continue to be mindful, thoughtful, patient, flexible and considerate. I hope we can be better people despite the horrible times we have endured.

We all have the capacity to do good. In very small ways we can make a difference. Just like I promised Ivy when I cuddled her for the last time, so much good will come from her short life. I hope so much good will come from this worldwide pandemic too.