Covid is in my house.
I repeat. Covid is in my f..king house.
In the house that has required every single person who enters for the last 11 years to first wash their hands. That has made it clear that if you have the sniffles or a cough, do not enter. That has missed birthdays and Christmas and all kinds of events because others were sick. Why? To protect B. To keep him out of the hospital. Every time he got sick, we would be admitted to hospital, unable to control the seizures caused by fever or not being able to get his meds in, leaving his sisters at home. Watching your child seize uncontrollably is hell. We do everything to avoid hell.
What is it like to be one of those people who has not given a shit about COVID? Who has let their children continue as per usual. We see them. All the time. That have still had or gone to birthday parties or the park, or for playdates and sleepovers or school and other events. That eat at restaurants and still go to amusement parks and movies and fairs and vacations and rodeos. Unscathed. And here we are – we have stayed home, we have said no, we have schooled and worked from home. We have diligently watched the numbers and made hard decisions and not gone to BC or Mexico or even the damn corn maze. Until very recently I was still buying groceries and delivering to my folks and our son’s caregiver, ordering online and picking them up. I watched ever Dr. Hinshaw, more recently POP (Protect our Province) Alberta and watched the numbers in-between. 3:30 pm was always anticipated and also hell, waiting for the numbers or a dreaded SchoolZone update about another case in the schools. Until recently, we were in NO activities and I saw my children shrinking. My teen always in her room, a mental health scare last winter. My littles watching the world outside our window. We tried having a few “drive-by” birthdays that ended up with people gathering on our lawn, causing me so much anxiety and fear as that was not what was intended, terrified we would have a super-spreader event unintentionally. We’ve made calculated decisions. Yes to baseball training for the teen. Yes to only vaccinated friends, grateful to see her not alone. Yes to a hockey practice with only the same group of kids and not games that rotate around the city. Yes to school for the girls this September after keeping them all home last year. Only outside masked playdates with little’s best friend.
We just re-instated Sunday suppers with my folks and my niece (triple vaxxed) and her partner 2 weeks ago. Time felt too precious. We were all vaccinated. It was our turn to host. Supper #2. My sister had just sent us some rapid tests to use if we determined it was safe to have Christmas with my husband’s family. My teen said she hadn’t slept well and was tired. Ok – not unusual. It was only 2 days since school ended so I let her chill and rest in her room. When I checked on her she was napping. I asked if she was sick and she said no. The day was lovely. We wrapped and baked. I got a workout in and was having a great hair day. I cleaned and put out Christmas linens and trays we use once a year. I actually put on nice clothes and earrings. It felt surreal. I had suggested we all test before, mostly truly concerned as my niece had hosted a meal the weekend before and to be honest, if I was going to ask my inlaws to do it, maybe we should start too. Maybe it wasn’t necessary. We had never done it before. Everyone was healthy. I set out the tests on the counter. As we were prepping food and cleaning, B’s seizure monitor went off – he was having another GTC from his nap. We ran to his room for seizure response, checking vitals, swiping his loop recorder. Then the doorbell rang – my folks had arrived unannounced. I said to Jason, but we haven’t done the test yet –do you think its ok? They hadn’t done theirs either. They had been here Friday night – we were all fine so it must be ok, right?
We got busy with seizure response and then more meal prep. I ran back down and checked on Sadie, still in bed. Just like Friday night I was frustrated that I had to force my teen out of her room – she was still tired –and I said to get up and come. I was flustered. Not thinking. Like I do too often, I overlooked her more concerned about her brother still and didn’t stop long enough to really look at her.
She came up and after some more food prep, I looked at her – asked her for help and she didn’t respond – teenagers! I carried on. Then my niece arrived and I walked over and looked at the teen. My brain turned on and I suggested she go back to her room and I grabbed a rapid test and we tried it. I truly thought there was no way. How many other times in the last 2 years had she had a headache or been tired. At any sign she had been pcr tested and always negative. We watched videos and swabbed and waited and then my nightmare started. The faintest pink line showed up where it should not be. SHIT. My parents, my niece. We took a second test – maybe I did it wrong. Again, an even fainter pink line. Asked Jason to open windows (another thing I had done every time anyone came in the house, but not today for some reason), send everyone home and my panic and anxiety struck. We masked and isolated her to her room. I started disinfecting everything. We tested the 2 littles and ourselves and we were all negative. This is Sunday night. Jason fed the kids and I closed the bathroom door and spoke to an incredibly compassionate health link nurse who confirmed that I should have the teen pcr tested, isolate her and that it could be a false positive. I bawled in fear and guilt and she listened and reassured. That there was still hope. That I didn’t know and had done nothing wrong. But none of this registers. I just know I forced her to be close to us and my folks on Friday and Sunday because they were leaving for Christmas and I worry about her in the basement alone. If I had let it be, stopped forcing, she would have already basically been in isolation. But no, I had forced her up and now potentially spread COVID – to the three people I have been trying the hardest to keep it from. I have been afraid of anyone and everyone around us bringing it to us and now here I had brought it to others. Our house was the one to dread. This is what I have spent hours and days dreading and fearing. Ridiculously, I could have even gone to work on Tuesday – and I would never allow myself in patient and family rooms if there was an off chance I could be or become positive. I have gotten so many tests because my brain has been hypervigilant detecting the smallest change in sensation. I had to be ok so I could take care of everyone else. I had logged off Facebook, after seeing posts of Dravet kids sick and in the ICU. If I was sick and B needed the hospital, then I couldn’t be with him. I couldn’t risk our cohort. My folks. Our patients.
It is a sickening feeling waiting these next 10 days, praying every minute that my folks stay strong and healthy. Fighting the guilt that they now are spending another Christmas alone, like last year – even though they were here we followed all the rules and passed gifts to each other outside and waved hello. This year they had planned to go to my sisters. So I have denied them all that. My niece was here too so it impacts her. I want the time to just pass so I can let go of the dread and worry and guilt. I am supposed to be their protector, not the infector. Since Sunday I have taken meals and snacks down to teen and disinfected. Fed the others. Cleaned. Tried to be ok when I wanted to run and hide in my bed and never come out or face the world again. A million, “I’m sorrys” not ever enough. Then B walked into the kitchen Monday night and went pale as a ghost. Nauseated. Next morning Mae runs in to tell me that he is coughing. Exhausted. Swabbed at doctors office and wait 36 hours. Kept him in his room, KN95s on. Worried he won’t eat or drink – how will we get meds in – what is the plan if he needs an IV or hospital? I slept in my mask the last 3 nights comforting him through the night, checking his temp, alternating Advil and Tylenol, readjusting his blankets, changing his soiled sheets. I awake and check my phone. B is POSITIVE. POSITIVE – for the virus we have been avoiding, hiding from, making sacrifice after sacrifice for. That has been the basis of all decision making. Is my throat sore? Is this headache from COVID or my constantly clenched jaw and an 11 year old boy laying on me all night? Now that he has it, does that mean its inevitable we all are going to get it? He needs constant night care so J or I have been sleeping with him since Friday. Mae is not sick. It feels wrong to just expose her to something she has worked so hard not to get, to keep Blake and Grandparents safe. Is this what we do now? All hole up and wait 3 weeks and hope no one needs hospital or gets long covid or worse? Mae, J and I tried booking a test for today and can’t get in until tomorrow. Merry Christmas Eve to us.
Littles got vaccinated Nov 28th. I finally decided B needed more than us and hired two double vaccinated young men to do special activities with him just since mid-November. We have 2 night staff that I finally got brave enough to let come in in June 2020, after exhausting months without any help. Then he made it to school for 7 days. 7 fucking days in December after we had waited and watched numbers in schools after “the best summer ever” – with medical advice, we determined it was time he go back. In the 2 days before and following, 5 cases in his school after NONE before that. WTF.
I am tired. I am livid. I am sad for my kids who have missed so much. Their cousins and Baba and Pepe, Aunts and Uncles. Their friends. My littlest has not seen the inside of her best friend’s house, literally across the street, since February 2020. Almost 2 years. I have been VIGILENT. I am beaten down. I am tired. I am ashamed and defeated and angry. We know how to do Christmas alone – like so many families of medical kids – this is not a first and I don’t want to. I don’t have an ounce of giving a shit left. What was the point? I don’t have any enthusiasm or pretend excitement or happy in me.
I am worried if B needs to be hospitalized, we won’t be allowed with him. He can’t tell you what is wrong or what hurts. How do you know when “my throat hurts” can also mean he is nauseated, has a headache, a sore leg, etc. How do you know if the cluster fuck of seizures Friday night (8) was from COVID or just more fucking Dravet? How do I have enough to see and know more about my girls when Dravet requires so much of me? I missed it. Why couldn’t she have had a sore throat or runny nose first? Being tired. Being fucking tired is a given in this house. She didn’t even qualify for a PCR test for being tired. I was afraid of running out of the test we had. Why didn’t I make it happen before everyone got there, like I had suggested? How did I not get them done first?
I should be napping because I haven’t slept in days – I am afraid of what this virus will do – the constant worry of who will take care of Blake if I or we can’t sits heavy on my chest. J got his booster yesterday afternoon so had his normal chills and fever reaction. So two parents down. It is a helpless feeling when people come to the door and you need help but you can’t let them in.
If you have rapid tests, use them. On anything unusual. Pls limit who you see. Even though we did, the amount of folks I had to contact (school, physio, her friend, B’s staff), was too many. I pray B and my parents and all of us come out of this unscathed. I feel like I am part of the problem rather than keeping numbers down to help keep our hospitalizations down.
I pray for us and the world and for peace. Maybe now that this is out on paper it will stop swirling around in my brain when I try to close my eyes. Like the what ifs I’d let her hide out in her room or what if we had just taken the tests before everyone arrived, like I’d planned, what if I hadn’t let mom cuddle Blake postictal, what if we had supper Monday like planned, rather than Sunday because I had checked the road reports and I didn’t want them travelling in poor weather Tuesday – then we would have known Sadie wasn’t ok and cancelled. Then it would just be us in this pickle. This makes me want to shutter up our house and not let anyone in or out. What if he hadn’t seized and I had more time to administer the tests? What if we were used to using them and hadn’t thought twice. What if I hadn’t let Sadie go to that friends house or ball. What if I had kept them home that last week of school when numbers were going up, like I contemplated. What if I had done better.
I don’t know if anything, other than my folks coming out of this without any consequences, will release me from this guilt and fear. I don’t know how to get through this next 10 days waiting and worrying. I don’t know how to keep living in this world, when so much of what brings us JOY can also cause so much harm.
I want to say “be safe.” But I don’t even know anymore. I thought we were doing a damn good job.