Blog MothersDay Corona Spring

By SB_FASD

It’s (UK) Mother’s Day and I want to sit in my bedroom, alone. I don’t want any store bought gifts. I don’t want any fancy foods. I don’t even want to see my 87-year old mother-in-law who is like a mother to me. I want to be left alone. Entirely.

Why?

Because about six nights ago now I thought my time had run out. This virus was (we believe) in our house. Our eldest son with Chronic Fatigue Syndrome had been fully symptomatic. The cough. The high fever.  The aches. The breathlessness.  Our youngest with FASD had some unusual signs – a pain in his back, in the lung area.

Before I too became ill, I had spent a week worried about our sons and frustrated that we could get no one from the  NHS to speak with us to answer what might  happen to someone with CFS if they  had COVID-19.  We have been told for years that his body will overreact to illness, that if someone might normally need a day to recover from some illness, he would need two. What then, we wondered, if he had this mother of all coronaviruses?  No one spoke to us. They refused to test. We will never know for sure if he had it, though he is part of a known cluster of symptomatic people who had all been involved with a Youth Drama Festival at a beloved local theatre which has a connection to a school that had a confirmed case.

I’m guessing the odds are high. I felt like our family is the canary in the coal mine. I grew disgusted at  the early  reports that this government thought it ok to sacrifice those with ‘underlying conditions’ in their decision to let this thing run its course a little, despite strong international scientific consensus that it’s best to take decisive early steps, to test and to isolate. We as a family went into our own self-imposed lockdown.

So when I became ill too I had all those worries, all those ‘what-ifs’ come crashing down on me. I worried about how rapidly this can affect people.  I wrote a paragraph for my family:

If this thing gets me, know this: I have loved big and thought hard. I have felt the sunshine so strong it baked my body and warmed my soul. I have heard the call to prayers rise over ancient landscapes and I have treasured the sweet laughter of two wonderful young people who gave my life meaning and purpose. I found my soulmate and did work that gave my life meaning. I have tasted foods on several continents. I have always known a home from my first to last breath where I felt love and acceptance and where we found joy together as a family, as part of a community. I have seen beauty – big horizons, the world’s artistic treasures. I have met people different from me and found common ground. I have grown and expanded and lived. I have no regrets, except maybe the need for more time. But the time that I had was well spent, enjoyed fully and savoured with people I respect and love. Don’t mourn me. Carry on. Pay it forward. Love each other. Be the best you that you can be. And know I am walking with you every step of this wonderful way. You’ve got this. You rock. It’s going to be okay.

I wrote that at 4:30 pm on the 16th of March. I was in the grip of a really nasty headache and wasn’t thinking clearly. My nose was streaming in a way I have never experienced before – it wasn’t ‘normal’, it wasn’t mucous. My back/lung area was having really sharp pains – the first time I felt it I was at the kitchen sink and I felt fear. That night was a long night, I kept waking up in pain – my head, my back, covered in sweat. The coughing came later and wasn’t as much as our son’s.

But there I was that afternoon before sliding into that rough night – the person who can write thousands of words and yet that paragraph was all I could manage. For the fourth time in my life, I had confronted my mortality.

The first time was when lying on an emergency room table in the USA being told by a too-young doctor (intern) that “ectopic pregnancies are serious, people can bleed out in minutes”. The second time was during my subsequent pregnancy, when an emergency c-section was needed, time was running out and I was begging them to cut me open and not worry about the anaesthesia that was proving problematic. “Just save the baby. Do it.” (They knocked me out entirely and I woke up to find a healthy son and that I had no pain  medicine in my body, leaving nurses in tears when they all realized those epidurals really  had not worked.) Another night, a few years ago, in a hospital waiting for results to see if my pain in my head, loss of hearing on one side and blurred vision might mean the worst. A night spent sitting across from a woman with an advanced brain tumour, who needed to share her fears and worries with me about being a mum with that kind of diagnosis. For me, thankfully, scans showed it was not to be the worst-case that night.

Through all of these experiences, it has been this primal maternal instinct that has driven me through. But I also know that one day my willpower is not going to be enough.

I thought I had hit that point last week. And the strange thing, the wonderful thing? I had found peace. Those other times, I had not been at peace. I was too worried about the future.

There is so much more I want to do, of course. There is so much more I want to see of our children’s lives. But if that night last week had been the end of the road, I was ready to call it a day and to walk off with my head held high, to believe that somehow this wonderful world would continue to hold my children and my husband in its embrace. I think that was only possible because I believed our sons got through this thing. That their future for now was okay. I knew my husband would fight with whatever he has to keep on. That our family and friends would be there.

I am not writing this to be morbid. I am being honest. This “corona spring” as I have seen it called has changed me. It’s changed us all. I do not believe it helps to hide these sorts of fears and revelations from each other. I believe we will all come out of this stronger, with our priorities reaffirmed and as a society we will be more aware of what matters at the end of these days. This is a huge massive correction in the way we do our business-as-usual. Suddenly it’s about ensuring we all can be fed, that we all have roofs over our heads, that we all see how precious life is and what a gift it is to move freely around. These are realisations that refugees and people in war-torn areas have felt forever. This COVID-19 has been an equaliser. Suddenly it doesn’t matter if you are Tom Hanks or a football player or work for the Vice President. We all can get it (though there is still inequality who gets to have the test, those who are entitled to know if they have had it versus the endless wondering our family will face).

So, yes, it’s Mother’s Day and I literally want nothing. I want to stay self-isolated in my bedroom until we are absolutely sure I am not contagious. I want everyone everywhere to do nothing, to stay home and just be. Just relax. Forget the home learning. Forget the pressures. Just look around you and celebrate the people you have in your life. If you are alone, call someone you care about. Connect. It has nothing to do with gifts. It has everything to do with simply slowing down, doing nothing, and giving these amazing heroes in the healthcare system and all those other key workers who are keeping our society going during this unprecedented time a chance to do their work, a chance to help us all live through this.

It’s sad and scary to know there is no guarantee who will get through to the other side of this. I say that as someone who thought I wasn’t going to. I feel silly admitting that because I never got so sick that my life was in danger. Not even close. But the point is – the reason why I am sharing like this is – I didn’t know that. I didn’t know what that night would bring.

And I found my peace. Once you find that you have a choice. Suppress it and miss a chance to realign your life. Or embrace it. And be a better version of who you want to be.

Our eldest has his spirit back, he is sharing humour and news and checking in on me through the door. While we had to cancel a visit to the campus, his university programme will be perfect for him next year, even if he’s not fully impressed that since he’s currently in a computer/gaming programme his lecturers have managed to set up remote classes so for him, unlike most, school is not closed for this year.

Our son with FASD has been a superstar through all of this. He is making sense of the world. He is riding past his confusion about whether or not he is going to finish out his last term with his school mates before going to a new college. He is overcoming his sensory issues and washing hands. He is settling into a new schedule, taking responsibility quite seriously for the daily dog walk with my husband (away from other people). He is creating music and clever videos where he plays multiple characters and showing us funny YouTube videos with people stamping out coronavirus. He is, like us, coping and finding his way forward. We see each other a couple times a day, and he keeps telling me he is “awlright”. I am so proud of him. And my husband, sleeping on the couch for a week while I self-isolate, has so far somehow avoided this. He has diabetes and asthma and I hope, hope, hope that these germs continue to avoid him.

For him and for my kids, for your kids, for the people who gown up and head into rooms to care for people who are fighting for their lives on the frontline of this thing, I truly honestly want absolutely nothing more than to binge watch Hill Street  Blues  and Hallmark movies on this Mother’s Day.

I have seen past my fears for my kids’ futures and remarkably, surprisingly, I see hope. Maybe that’s because our eldest is off to university for a career I know will make him happy and because I know if it doesn’t he has so many other skills, he will find his way forward. And for our youngest, for the first time ever, ever I know that change is coming in this country with new increased recognition of FASD from official bodies like NICE and the Department of Health – I  know  that for the first time ever, he has a fighting chance at getting  the support he deserves as he grows into the amazing adult he  will be. That’s a game changer for me as a mum, even though I know there is a long way to go. But it leaves me hopeful. We’ve made it this far and that is all the celebration I need today.

Someday, that night will happen when I won’t make it through. I can’t be there for all their tomorrows. None of us can.  That’s life. But for now, I am here. I am with them through the rest of this world-shaking spring. And today, to celebrate, I want nothing.

Because I want us all to live as long as we can.

To all who are reading this, thank you. Here’s wishing you all strength and hope and many tomorrows. And above all, peace when staring into the night.