Like most parents I know, never in a million years would I have dreamed that we would live during a pandemic. It never even entered into my mind. Ever. Yet, here we are. Covid-19. And the new school year almost upon us.
As I have weighed the back to school decision closely, looking at data, listening to both MD and public health experts, watching leadership, and talking to friends and medical teams, it is clear that there is no perfect decision. It's a pandemic, with way too many unknowns, impacting people around the globe. There will be ideals which need to be compromised, regardless of which decision I make. Some will say our state is in good shape, and kids should just return to in person full time. Others will say our state numbers have been increasing, and kids should just do remote. Several MD's I know, who have a knowledge base of disease that is much greater than I have, have said their children will not be returning to in person. Other MD's are sending their children back. The result of all of this has been a level of angst that I have not experienced in a long, long time. I have fluctuated between maybe they can/should go back to hybrid in person to no way will I take that risk and jeopardize lives, either the lives of my children or the lives of our teachers. As one of my BFF's has suggested, we are currently riding the Covid coaster. The emotional ups of "maybe this isn't so bad" and the numbers seem better to the downs of thousands are dying daily and "covid testing is required before all hospital procedures" (clearly it is not "not so bad") are easily like the ups and downs of a rollercoaster. Even though it is not possible, I want off of the Covid coaster.
My children love school. They thrive in school. They love friends and learning. They love their teachers. They love the routine school brings, and the comfort of that routine. I love that they love school and that when we are in that routine, all of our mental health is better. And yet, the remaining 4 children in my home are all medically complex with a variety of diagnoses from congenital heart defects to transfusion dependent thalassemia to immunocompromised post liver transplant. Asthma, allergies, susceptibility to sepsis, and failure to thrive are some other diagnoses. We are at Boston Children's Hospital every three weeks, with lab visits every 10 days between those treatment days. When I asked our transfusion staff what happens to our regularly scheduled blood transfusions if our family is quarantined, I was told that it is very likely we will be asked to wait to come in. My children would not be refused treatment, but rescheduling becomes a bit of a logistical nightmare as a solo parent. Do I really want to take the chance of disrupting what little routine we have left in order to have in person instruction once or twice a week? Will that really improve our mental health? Or will it actually bring more stress and anxiety?
With so many unknowns about the future, one thing that is very clear is that our in person instruction will look nothing like what we have known in the past. Gone are the days of freely playing and interacting, sharing toys and materials, and hugging or holding hands with friends and teachers. There will be no chatting in the lunchroom or saving a seat for a friend. There will be no all school sing alongs or talent shows. As I have said to my children, the whole thing just stinks. Yet, as I have also said to my children, it will not be this way forever. I suppose the reminder is just as much for me as it is for them.
At the end of the day, when all is quiet in my home and my girls are all asleep, I think back to the time when I was flying home with my youngest who was dying of end stage liver failure. I think back to how she fought with every fiber of her being to remain alive. I think back to the terror I felt when I thought of life without her. Parenting her is the closest I have ever come to that threshold between life and death with any of my children, a place that no parent ever wants to be. Parenting her has taught me that life is precious and delicate. Parenting her holds the fear that due to her immunocompromised status, she is always at risk for life threatening complications from ANY virus. We don't live in that fear, and yet, we are wise and vigilant. We follow the advice of our transplant team and get our vaccinations including flu shots. She receives tamiflu when any family member tests positive for flu and we head to the ER with fevers. We avoid all big crowds during flu season, and do not have playdates when someone is sick or has been sick in that household. We have used purell and bleach wipes years before it became the norm. It is just the reality of how we settled in post transplant and go about our lives.
As I contemplate and agonize over the school decision, I long for the days we had before being on the covid coaster. I realize now how those days were gifts. Gifts we took for granted. Being able to go to school, interact in carefree manners with others, and experience all that being in school has brought in the past is a gift, even with all of it's imperfections. And I realize now, life is still a gift. Even in this covid coaster madness that I desperately want to end.
Reflecting on where our lives have taken us up to this point and the lessons learned through it, remote learning is where we need to be. For now, not forever. Even with my children remaining at home for the next school year, engaging in remote learning, there will still be so many gifts and opportunities to find incredible mercies given to us. Including, I hope, the end to the covid coaster.
