Where is the light?

There is supposed to be light at the end of a tunnel right? Well this little tunnel we are currently in is starting to feel like Gotthard Base Tunnel – the longest in the world right now. I don’t know how long it is and I don’t know how long this lockdown is going for. It is now Day 59 of our latest Auckland lockdown and over the last 2 days we had 66 and 71 cases. The goverrnment’s aim (I think) is to have 90% of our population vaccinated before reopening in order to preserve our free public health system from collapse. That’s right, we are a fortunate country with a free public health system that cares for its residents and citizens in their hour of need. That free public health system is funded by a robust economy, by people working, spending and consuming and paying taxes. It’s not a perfect system, but it’s what we have got and no government expected a pandemic in 2020. So the advice we are getting is to get vaccinated.

Yet, the double vaccination rate for the eligible population of our COUNTRY is still languishing below 60%. While just on 80% of the eligible population have received the first dose https://www.stuff.co.nz/national/health/coronavirus/126670598/covid19-the-latest-on-new-zealands-vaccine-rollout-in-12-charts . There is still resistance among our population from anti vaxxers. There are those who consider vaccination an infringement on their rights. I want to respect other peoples rights on an anti vaccination stance, but right now I would prefer those able to do this to step up for the rest of their countryfolk. For us, there was only one choice, prevention is better than cure. To protect our most vulnerable we chose to be vaccinated as soon as we could.

This should not be political. For me, not vaccinating feels like an act of world gone crazy, of dodging the draft and not defending your family, friends, community and country in its hour of need. It should not need to be mandatory. Humankind should want to take care of their own.

Of course, I don’t know whether the vaccination is perfectly safe, I can only trust that a professional who has the education and knowledge to make that assessment is working in our best interests. Drugs are tricky, drugs have caused problems and side effects historically and still today scientists and pharmaceutical companies can get it wrong if research has been misused. But there are more times we have trusted the science and the medical professionals because they have got it right. We live longer, we heal faster, and we have so much knowledge about vaccination than those in the 1790s when the smallpox vaccine was first introduced.

There are so many ways we put ourselves at risk every day, not knowing or understanding the exact science. Isn’t there a risk to your health and safety when you take any medicine, you drink alcohol, smoke, eat pesticides on food, use a mobile phone, cross the road, drive a car, inhale pollution? We accept help from the medical profession when we are in a car accident, if we have a heart attack or get the flu, because we trust those people know how to stitch you up, get you breathing again and try to keep you alive. They are the same people who would help you if you got Covid-19, those people who are putting themselves at risk even when you don’t help yourself.

Why do I care so passionately about this? For 17 years we have been caring for our son who has a rare condition called Pentalogy of Cantrell https://rarediseases.org/rare-diseases/pentalogy-of-cantrell/. POC is a congenital condition where you have midline birth defects. In our son, Mitchell’s case, he presented with a giant omphalocele, cleft sternum, subcutaneous IVC and right atrium, muscular defect of central diaphragm and cardiac defects. Because of this condition , Mitchell and our family spent just over two years with him living in hospital, predominately in the Pediatric Intensive Care Unit (PICU). During this time Mitchell lived on and off a ventilator to support his breathing and had to be intubated more than 10 times. When he was just over one year old he had surgery to place a trachestomy tube in so that he could be supported at home on a home ventilator whenever he was asleep. His respiratory health is severely compromised, and although he weaned off the ventilator support in 2017, he still requires oxygen support overnight and his lung capacity remains heavily compromised. If he gets a cold it is likely to become pneumonia, and most likely a period of hospitalisation. If he gets Covid 19, well you do the math.

Our family and all his team have worked super hard to get him this far. Throughout his WHOLE life we have taken measures similar to those you are now familiar with for Covid 19. Especially in the first 5 years, excessive handwashing, no visits to indoor places with large crowds, e.g. malls and indoor events, keeping a distance from people showing signs of coughs and colds. It has not been easy to negotiate and even with the care and support we have been afforded through a public health system, it has taken a toll on all our family to get this far.

IN THE PICU with Mitchell (2004) Being on a ventilator means you are not breathing for yourself, you are permanently connected to support.

So, we have seen first hand, up close and personal what it is like to have a family member on ventilation, to see them unable to breathe for themselves, to see what it is like to live without healthy lungs and we don’t recommend it. Mitchell requires 24/7 care for his complex needs (including non-verbal autism). This includes overnight awake supervision in our home. While he has a more complex condition than Covid 19, we know that his lungs would not survive this virus. So he is very, very vulnerable even with a double vaccination. In Mitchell’s case as he required support over many years he had ventilation via a trache tube – this also meant NO SWIMMING, no WATER near the stoma, NO BEACH due to sand danger and minutes to react should there be a blockage. Do you really want the possibility of this for your loved one?

This week as a result of circumstances, including a member of our team on leave (planned long ago for personal reasons) one of our support workers choosing not to get vaccinated yet, (which meant we are standing him down) and another who has a family member in her household that is a close contact of a positive case, we have been left in a position where we have only one of the four support workers still available to work inside our home. This means we have assistance for 40 hours of the 168 hours in a week.

We provide natural support alongside a team of normally 4-5 carers and Mitchell normally attends Rosehill Special School for 25 hours per week. He needs 24 hour assistance with all self cares, feeding, toileting, bathing and support for behaviour and safety. With only one person now trained in his team able to come, Phil, Holly and I are on duty almost around the clock. Having a temporary worker is not an option due to training and communication with Mitchell. Mitchell’s autism traits mean that he thrives on routine and without his routines life is challenging for both him and us. Respite at Wilson Home is normally available to our family every 3rd weekend so that we can reset and recharge.


They are not identified as an essential service. It is not a luxury, it is a necessity and Mitchell looks forward to it. We made it through the other lockdowns, but this lockdown we had to ask for emergency respite at Wilson Home and they kindly helped out – the alternative, our whole family crashing through lack of sleep and hypervigilance and carer burnout. That emergency respite for a few nights was gratefully received, but a few weeks on, it already feels like a distant memory. If you have had children and remember the newborn stage you will remember what sleep deprivation feels like. Phil had to take this month off work completely to tag with me on care and there is still no date for when we can emerge from this lockdown. Just as an aside, a respite service for our most complex children is not open, but liquor stores are. Sigh.

For my mental health, I know that HOPE is the emotion that keeps me going. It makes me able to imagine the light at the end of the tunnel. But to have hope I need to see a country united in PREVENTION. A community of people who can work together to reduce the risk of Covid spreading. You do have a choice – the choice is whether you want to support your community or whether you want to place your community at risk. I chose community, because in New Zealand, where we celebrate our independence and NO. 8 wire mentality, we haven’t forgotten that at the heart of our country, the most important asset are our people.


If you are still sitting on the fence about vaccination, I ask you to think bigger than yourself. Please make a choice that is supporting our country for the future.

Thank you


PS. I have written this from my heart, if you are anti vaccination I would just prefer that you don’t comment. I am sharing my personal view and reasons why I would like people to be vaccinated. There are plenty of other forums where you can discuss your views.

2 thoughts on “Where is the light?

  1. I agree!! I just think when it comes to vaccination you should think about others as well as yourself, so you should get vaccinated! Thanks for sharing!

    Feel free to read some of my blogs đŸ™‚


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