I knew that during this pandemic, I would eventually get the dreaded text “do you have a minute to talk?” When it comes at 8:00 AM, you pretty much know that good news is not awaiting you, right? My daughter, Megan, had flu like symptoms and was being test for Covid19. Megan is 25 years old and she has Down syndrome. I don’t blog about Megan very often because she is an intensely private person. She has given me permission to share her story with you with the hope that it might help others who have had this experience.
With a positive result, the protocol for her program and the CDC required that she would quarantine for 10 days in her room at her group home on Cape Cod. One of her staff at the group home is trained in infectious diseases and she agreed to care for Megan 24/7 until she was out of quarantine. We are incredibly grateful for the wonderful care she received. She did not get very sick, thankfully, as she was fully vaccinated. This blog will not discuss the physical manifestations of Covid as much as it is the mental health issues that she struggled with well past the end of her quarantine.
My family had a huge family reunion while Megan was still in quarantine and she was extremely upset to have missed this party. She loves all her relatives and the FaceTime call during the party helped her to feel included but she was still upset that she was unable to attend.
During her quarantine, Megan FaceTimed with us for hours at a time. She would hang out online with me while I cooked dinner and we played countless of hours of Game Pigeon to pass the time. Her favorite game was Sea Battle and she was definitely in a better mood when she was winning. My daughter has a very competitive spirit!
We called, video chatted, played games, sent care packages, posted on social media for friends and family to reach out to her to battle the loneliness. So many sent messages through Facebook, texts, mail and even a few sent video messages. She loved every single note and it helped her through this time.
Covid robbed her of sense of taste and smell. She lost 16 pounds over a 2 month period because food didn’t taste like it should anymore. She had chronic stomach pain that continued even after medical causes were addressed. She also gagged while trying to drink juice at one point. This is perhaps our biggest remaining issue because she has developed a strong aversion to drinking fluids. Her intake is so low on some days that she develops headaches and lightheadedness. There was a day when she refused breakfast and fluids prior to going to work her shift at Kohl’s. She fainted, hit her head on the floor (thankfully her job coach caught her or she would have hit the floor much harder) and ended up in the emergency room where they rehydrated her intravenously. This scary experience helped her to understand the importance of being hydrated. Her fluid consumption improved a little after that day.
The extreme anxiety that Megan was feeling was adding to the challenge of recovering from Covid. She came home for weeks at a time so we could get her back on track. While home, she revealed that she was traumatized by the experience. The isolation was the worst of it but she also didn’t understand how her immune system worked, and she feared getting Covid again. She spent every night sleeping with us and would even share the same chair while watching TV in the evenings. She didn’t want to be alone. Covid knocked her confidence and she was fearful.
I will share what we did to help Megan leave the Covid experience behind her, but I want to be clear that we are very much still in this with her. The strategies I outline below have helped, but we are not out of the woods and we take small victories as they come.
First of all, this is not a typical sibling relationship. If you’re reading this and your kids fight all the time, your situation is typical. Megan and Trent’s sibling relationship has been caring and loving with an occasional spat. He is younger by over 2 years and he towers over her in height. She is 5’ tall to his nearly 6’ 4” frame. Trent is absolutely Megan’s favorite person in life. She adores him and she will do what he suggests in most situations. At 22 years old, he is old enough to take on an important supportive role. When she was home, he was able to help convince her to get her out of bed, go for walks, and he encouraged her drink beverages. He carved out game time for just the two of them daily. Spending time with him was very healing.
Megan did not understand that she is able to fight against Covid more now that she has had it due to antibodies. She needed to understand this aspect of her recovery. My dear friend, Laura Garrison-Brook of Discovering My Purpose, has meditations on Insight Timer that do an amazing job of explaining the immune system. One mediation that Laura created for kids, Boosting Immunity & Feeling Calm In The Time Of Coronavirus (https://insighttimer.com/discoveringmypurpose/guided-meditations/boosting-immunity-and-feeling-calm-in-this-time-of-coronavirus) explains this concept by referring to your body as a castle with a happy and robust cleaning crew that is always sanitizing the inside of the castle. The cleaning crew is your immune system. We explained to Megan that after having Covid, her cleaning crew grew in numbers, so an even bigger crew are clearing Covid out of her body than before.
Other guided mediations we suggest are:
Once we had clearance from Megan’s doctor that the medical portion of this experience was solidly in the past, we worked on purging the unpleasant memories of Covid. We did several activities to get Covid out of her mind and to help her to feel empowered against it.
We wrote “Covid” on an index card and Megan ripped it into shreds. I also like putting index cards into a hand held shredder. The tactile aspect of ripping it into small pieces can be very satisfying.
We wrote “Covid” on an egg and Megan went into our backyard and smashed it against a tree. This should only be done in your yard so that no one gets in trouble for vandalism! Megan loved this activity the most so she smashed about a half dozen eggs in all. At one point she exclaimed, “I’m fearless!” This is exactly why we were doing all of these purging exercises so that she could become fearless again.
Chopped Covid
We made apple cinnamon muffins and used a hand chopper that you hit with the palm of your hand to chop the apples (see pic). We chanted “covid! Covid!” as she chopped.
In closing, Megan is getting over her Covid experience a bit more each day. She is now drinking a healthy amount of fluids but her appetite is still more finicky than usual. Her mental health has much improved and we are seeing a more confident Megan than we had seen in months. It’s possible that she will come out of this even stronger than she was before. She is truly becoming fearless.
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