2020: A year to remember and forget
2020 hasn’t been a good year for many people. For special needs parents around the world it has been particularly fraught with worry, anxiety and stress as we sought to protect our fragile families from Covid-19.
When the pandemic reached our city in March 2020, in some ways it wasn’t a big adjustment for us. We already had face masks, safety glasses, medical gowns, supplemental oxygen and a lot of soap to hand. Having the safest most sanitized house in town has been the norm for us ever since Anastasia was discharged from the NICU four years ago.
However, with the pandemic came restrictions that we hadn’t anticipated would affect us. Suddenly we lost four beloved nurses who could no longer work with Anastasia because they worked on Covid-19 units in local hospitals or because the nurses were in the high-risk category and had to remain at home. We also couldn’t find disinfectant anywhere despite being desperately in need to clean Anastasia’s feeding supplies, hospital bed, and respiratory equipment. Not to mention the lack of toilet paper proved interesting! After all our home is also a workplace for a team of nurses who care day and night for Anastasia and who, like Anastasia's daddy, drink a lot of coffee!
As with most things in life, there is good and bad. Our local Walgreens staff started to recognize us and stored disinfectant and hand sanitizer in the back to be able to save some for Team Anastasia. Neighbors, family and friends from all over the USA mailed or even drove cleaning supplies to us. Sometimes the supplies came with Starbucks coffee and an uplifting card as Team Anastasia hunkered down and didn’t leave the house for several months. Our network of medically fragile families started sharing supplies. There was a national shortage of feeding pump bags and feeding tube extensions because the factories in China, where they are made, were on lockdown, and supply chains around the world were disrupted. We met fellow special needs parents in car parks across the state to exchange medical equipment and offer comfort and support to one another. We mourned their losses and celebrated when a child was discharged from hospital.
Anastasia’s wonderful nurses were often the only people, other than our conscientious neighbors, who we would see for weeks, even months, on end. The nurses diligently kept coming to care for Anastasia even when there was a stay-at-home order. They were sometimes stopped by the police and had to explain they were essential workers protecting a little girl. The nurses braved tornado warnings, snow and the height of Covid-19 infections in Illinois. They protected Anastasia, laughed with us when she had a good day or learned to propel her wheelchair, and cried with us when she had to be rushed to the hospital with a broken leg, influenza B or to receive surgery on her airways - all of which Anastasia endured just this year. We have been especially grateful for Anastasia’s loyal and amazing team of nurses in 2020.
Despite all the restrictions, we still found novel ways to celebrate! Our extended family drove past with balloons and gifts for the twins' 4th birthday. We had a socially distanced 4th of July with the neighbors on our driveway. The twins were flower girls for their Uncle Lars's wedding and took their special roles very seriously! For Halloween we dressed up as the Peppa Pig family and shared socially-distanced trick or treating with our immediate neighbors. We recently celebrated Thanksgiving at Lurie Children’s Hospital with Anastasia. Our neighbors were so kind and cooked a huge and delicious Thanksgiving meal for us knowing that we would be driving back and forth from the hospital every day. All the parents hanging out in Lurie’s PICU gave each other knowing looks and friendly waves as we held vigil with our brave children. We reunited with several of Anastasia’s NICU nurses who have become good friends over the years and shared coffees, doughnuts and stories as we waited for Anastasia to wake up and come off the ventilator.
2020 has been a tough year. Unforgettable, yet in many ways, we hope, entirely forgettable. Like many people, we have hardly slept, watched too much TV and have missed family and friends. However, we learnt a lot about ourselves, human nature and what is really important in life and death. And we learned that even, or maybe especially, during bad times, how important it is to be grateful for the good.
We wish all our friends, family and supporters a hopeful, happy and healthy 2021.
