Bored in the house and in the house bored? Having trouble coming up with ways to keep busy during this time locked inside? I’ve been so lucky to have been able to quarantine with my sister for a majority of our time thus far! She brought light and giggles to our home and shared her beauty with our community. My sister, Emily, is 23 and has Down syndrome. In a word, she’s my world. I am from a family of essential employees, myself included, however for personal reasons and assessing risk it was determined Emily would live with me in Boston for a period of time in order to ensure her health as a priority. Understanding the pandemic and the risks associated is complicated, explaining this to children or those with cognitive impairments is challenging. Emily experienced, as we all have, stages of frustration, fear, and confusion. It was especially challenging to keep her from our family during this time, something she’s never had to experience. To combat these all these factors, we got creative….
During the day, while I worked, Emily would do some projects. Emily used these projects to spread some joy and gratitude during this time. Emily’s projects ranged from putting hearts on our door giving thanks to healthcare staff, essential workers, first responders and finally a special shout-out to all her coworkers at our local breakfast spot! This led to her creating a video for all the staff at her work wishing them health and safety and counting down the days until they can be together at work again. Emily was so excited to share this with the staff as she values being an employee and the community that accompanies this title. From there Emily took up water coloring and created hand-made ‘Card by Emily’ for our friends, family members and co-workers assisting us on the front-lines. We shopped a local source doing amazing work for ‘Headbands for Hero’s’ to accompany each card made. On April 10, Boston Hope Medical Center opened and friends began their work there supporting individuals recovering from COVID-19. Emily made signs to hang along the walls with messages of hope, love, community and support. Each day we attempted to make one item that would spread a smile, mainly to those risking their lives for the bettering of others.
Visits with family look very different these days. We aren’t allowed to physically be near one another but after at least two weeks Emily hit a point where she needed a hug from mom. Yes, this was breaking social distancing, but it was this or breaking her spirit. So we gowned up and off we went to the front steps. No one’s allowed inside and there are strict rules post-hug. Seems extreme but due to the nature of Emily’s health concerns it is so critically necessary. This made Easter and our mother’s birthday difficult. For our mother’s birthday we made a video with messages from our family and friends! Emily loved being able to have a secret she couldn’t share! Easter we made extra special. Leading up to Easter Emily became nostalgic and felt guilty she wouldn’t be home with family. We wrote a letter to the Easter Bunny to ensure he would know where to find her here in Boston as she knew how busy he must be. He promptly returned her mail (special thank you to a VERY special friend, Hailey) reassuring her that he would find her and that he loves her very much, she was beaming. The Easter magic was reinstated! I made a basket of Emily’s essentials (ANYTHING Descendants, Frozen or Goldfish related) and had Easter eggs leading to it for when she woke up. These moments with Emily are ones I’ll forever hold onto, I am so grateful for the moments, the memories and the smiles.
Now for the fun stuff. Emily requested “Sarah’s Salon” which was held for many days. At Sarah’s Salon Emily had mani/pedis, received multiple hair treatments, facials and more. What can I say, girl loves being pampered! We played board games and card games and Emily hosted a Karaoke night which was a hit (the margaritas helped too). While Emily loves to steal the spotlight she did allow for a few sister duo’s and for that I was grateful. Emily and I explored our culinary abilities and tried out many different recipes for each meal, big highlight on our gluten free pizza dough. Sometimes we wore wigs for fun and sometimes we wore them for Tik Tok’s. We snuggled and watched all the Disney movies we could think of and we binged FRIENDS in bed. On Emily’s final night in Boston, as my community integration at work increased (and therefore so did her risk) she requested a fashion show! Watching her belly laugh and be so authentically herself was more than I could’ve asked for. We glammed up and hit the runway! This gave me so much gratitude for my roommates who went all-in on every activity and joined in on every smile. I think this time together was important in many ways. With stress levels high and so many unknowns, being able to just absorb Emily’s natural radiation of unconditional love and joy allowed me to let my hair down and feel the assurance that we really are all in this together and together we’re getting through this. Find the joy, share the smiles and keep going.