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“About two weeks before lockdown, we met Keith’s consultant at GOSH for his routine check-up.  We did discuss about our concerns regarding COVID-19 and our impending holiday to Australia and we felt assured that all was good to carry on with our lives as usual. The turn of events happened so quickly. Every day we were on the lookout for news about travel restrictions to Australia.  Gutted, we eventually decided to postpone our holiday - it was proving too stressful.  Then, heeding to what I call a mother’s instinct, I took it upon myself not to bring Keith to school anymore.  That very same day, CGD Society issued an update about COVID-19 and PID patients, which validated our decision about Keith.

By midday on 23 March, I received a SMS message - ‘apparently’ from the NHS categorising myself and my son as extremely vulnerable and that we must stay at home for 12 weeks.  I was in denial - I thought, this is a hoax - it can’t be right.  We can’t be extremely vulnerable as this wasn’t what we discussed at GOSH not long ago.  I could feel the stress bubble up with all the uncertainty and confusion.  And then the news came - lockdown was made official by the government.

Dealing with a rare condition such as CGD can be isolating.  We usually find ourselves having apprehensions about heeding the general health advice from the NHS and even GP’s, since my son’s condition is most often unheard of by medical practitioners.

Our normal lifeline, Helen Braggins, was off on leave that week and when we received the official from the NHS it was like a body blow.  Our freedom had been forcibly removed and we thought the message was a hoax.  During this week, I was in touch with a friend with CGD who was also told to shield.  We met at the 2018 family conference organised by the CGD Society and we have been connected ever since.  It was a relief to be in touch with someone who at least knew about CGD and good to reciprocate the support, sharing the same concerns.

I found myself stressed out, compared to my husband (I imagine most mothers were).  I started to feel low.  How was I going to keep the family confined to the house for 12 weeks and keep everyone safe?  I had to explain to Keith what was happening and what was needed to be done.  He was incredible, no tears or resistance.  I often underestimate him in circumstances involving this condition and like all the other situations we have had to deal with, he accepted this one so lightly.  From his attitude, I was able to muster the strength.  It is amazing how a child can teach you essential life lessons and my son never fails to do so.

The week passed and Helen was back in touch, reassuring us all.  We honestly would not know how we would have coped dealing with CGD since the diagnosis without Helen around.  She even set us up for a weekly call with one of the CGD Society trustees to check on us and this helps us feel that we are not on our own.

We agreed to make the most out of the situation instead.  The positives such as the opportunity to spend more time as a family, appreciating the basics and the simplest things overtook the negatives - anxiety, uncertainties, suppressed freedom.  The only blip was the struggle for online grocery slots but thanks to kind neighbours and friends, we survived until we were prioritised for online groceries.  We settled into our new normality and have been following our family rhythm since.

This is our lockdown story and is the same/as unique as the rest. There is a lot we can learn from this experience but for us, what would probably stand out would be three things - optimism, gratitude and camaraderie.  The lockdown brought so much anxiety in each and every one of us but we have learned that one has a choice between resisting the changes or embracing the experience no matter how inconvenient the situation may be. The belief that when you let go, you start to allow nature to take its course, you start to believe that things will work out no matter what. We realised that gratitude will take us a long way with anything life throws on us. We are grateful that despite the uncertainties, we have our essentials - being with our loved ones and that we are all in good health.

Lastly, the pandemic also has stressed out the importance of camaraderie within and beyond our home. We appreciate the kindness that surrounds us all throughout this ordeal.  From our family and friends, our community and most especially to the CGD Society for the continued assurance and support we get from them in helping us support our son the best way we can with the  journey he has to deal with for the rest of his life. Without the CGD Society, we are lost. Without camaraderie, it is difficult to remain positive”

Thank you for allowing us to share your story Rhea. We hope it is of some comfort for others facing the same situation.

Story shared: 24 May 2020