COVID-19 Project: Navigating Disability, Independence and Health Safety in a Pandemic

By Ann Miura, PROUD parent of Keli Meriko Hong, an adult daughter with disabilities. Keli’s diagnosis: cognitive delay  |  

March 13, 2022

“The greatest gift we can give our kids is to help them learn to live without us!” 

Keli and I began our journey with that goal in mind in May 2014. I wrote that quote in a letter to the Arizona Department of Economic Security (DES), Division of Development Disabilities (DDD), asking for their assistance.

After the shock of celebrating another one of Keli’s birthdays in 2014, I woke up in  the morning and gave a 30 day notice at work. I left to focus on the goal to help Keli  find a home in a community for adults with disabilities where she could share her days with roommates and learn to live independently while enjoying a fulfilling life.

After searching for two years, Keli moved into an independent living arrangement in November 2016. For  almost three years, she lived in a beautiful four-bedroom home with a swimming pool. They had a lovely piano  for anyone to play. Keli loved her three wonderful roommates and formed meaningful friendships. They called  each other sister! They cooked and cleaned together and went on outings and shopping on their community bus  and vans. She was on their swim team, bowling team, played soccer and entered The Special Olympics. She  sang on their bus to and from work and during their stops – she would dance! College students visited weekly to  hang-out with them. She even went to camp for a week! They celebrated birthdays and holidays and did volunteer work. Keli has great memories!

Still, Keli was the only roommate who had never lived away from home. I knew  there would be challenges and a possibility that she might not stay. She made the  decision to leave in October 2019 and moved back home. But she was also very  sad. It broke her heart when she watched as her brother loaded her bedroom set on  his truck and drove it away…her move was real! I knew she didn’t quite understand  that her move to her new home was long term and wasn’t intended to be just a visit. She missed her sisters terribly and I found her crying often. We tried new activities  and just when she seemed to look forward to meeting new friends and having new  activities – the pandemic hit! She didn’t understand why she had to wear a mask,  why no hugging was allowed or why she had to stay six feet away from everyone. One night, she was thrilled to  be invited to a party at the home she had lived in with her roommates – she seemed to come alive. Then because  of the pandemic, it was canceled. Her attitude changed. She refused to help make dinner, clean her room or do  laundry. The hurt feelings came back and she again missed the teamwork with her sisters. The YMCA where  Keli went for Zumba closed, we stopped visiting most places because she wanted to give hugs. Toastmasters meetings were on Zoom and she missed seeing everyone in person. Her soccer games were canceled. And after a lot of thought, I asked her DDD support  coordinator if I could take her out of her day program because I was afraid  she might catch COVID-19. I explained that we were isolated. If either one  of us got COVID, we couldn’t allow anyone to come to help. My son and his  family live too far. When I contacted her day program, I asked if they would  consider letting Keli attend on Zoom. I was surprised when they set it up. For  over a year, Keli was on Zoom with her day program and with a rehab specialist, through DDD, learning to do chores again. She was on Zoom, Monday  to Friday, for 5 hours a day. We went for walks in the mornings and evenings  until summer. We went grocery shopping at 6:00 a.m. and occasionally picked  up a meal through a drive thru. Our shopping was on Amazon. We were really isolated. I could see that Keli was getting more and more attached to me. We began to get in each others’ way and even the little things caused both of us stress. The biggest issue for me was…what if something happens to me? What happened to our goal of having  her learn to be independent?! 

During this period of isolation, I realized how much Keli is really a part of me and the love I have for her is so  beautiful and incredible! I was terrified to see how fragile life had become for us. I realized that any plans to  care for her, if I wasn’t around, might become non-existent. What is the answer or is there one? We really have  to depend on our faith every day.

Being together 24/7, Keli and I seem to bump heads all the time. Doctors’ appointments were virtual. I even  delayed routine screenings because the lab wasn’t following safe practices and their office was too crowd ed. When it was finally done, her lab work was disappointing – her A1C [blood sugar level] went up. I felt  so guilty. When the vaccine was announced, I was on several Zoom meetings trying to figure out if Keli was  eligible. I wrote emails and made phone calls to see if I could get any information. It seemed hopeless. I called  on friends and colleagues for ideas. I realized that some logical, intelligent family and friends believe in the  vaccine, yet some equally logical, intelligent family and friends have strong reservations about the vaccine. For  Keli and me, I have to trust and follow my own beliefs…for both of us. Is it the right thing to do? For us, yes –  we both had our boosters.

What did I learn during this pandemic? Keli is just like me. She has the same bad habits…and we’re both  impatient (I inherited that from my loving Dad). During isolation, it was so much worse! I sometimes was so  mad at myself for being mad at her! I just wanted Keli to understand how serious the pandemic had affected  our lives and how vulnerable we are. Then on Mother’s Day, a friend of ours sent me a Happy Mother’s Day  greeting. Her message: “You and I are so fortunate and honored to enjoy a “very Happy Mother’s Day” because  we both have awesome daughters!” Here’s a proud and optimistic mom with two daughters – one with disabilities. I felt so ashamed of myself for losing my patience. I know KELI IS AWESOME!

On Halloween, I woke up feeling terrible. I even called my son and asked him to check up on me. If it turned  out that I didn’t make it, he would have to make sure Keli was OK. That was such a scary time. I’m not sure  how I got through that. The next day we both had COVID tests and I was so relieved we were negative. At least  I could eliminate one thing. Yes, I am still scared!

I know that Keli is very sensitive to her surroundings. She can feel tension in the air. She’s also very smart in  many ways and loves to laugh. She’s always asking if the ‘flu’ (pandemic) will be over soon. When I think  about how to answer her question, I realize that I hope she can develop friendships like she had with her room mates. And that she can be kind to those around her even if she feels someone wasn’t nice to her. Life is precious. As I remember the quote: “The greatest gift we can give our kids is to help them learn to live without  us”- I no longer know how to do that. We cherish our family and friendships more than ever. We’re thankful for  everyone in our lives. And yet I ask myself…what’s next? I take things one day at a time and try to help Keli in  any way I can. We laugh a lot and make an effort to help others and have faith along the way.

Saving Grace – Keli’s day program continued to ask if and when she would return. Each time, I asked for more  time. I saw on Zoom that more members were at the program. I was assured that Keli would be in a small group  with three members that she knew. I saw the tour on Zoom of the remodeled facility and social distancing was  not an issue. They were all wearing masks. Everything, including the vans, was sanitized regularly. I agreed to  let her return part time first and then changed to full time. Keli was so excited to see all the staff and members  that she’s missed. Her favorite staff takes her for walks. Their activities include a daily “dance party” – which  is her favorite time. She loves JLo (Jennifer Lopez) music! The GCU (Grand Canyon University) Best Bud dies Program started up again so Keli just met a new Best Buddy to  spend time with. For her A1C, we found a small Zumba class and  cycling class. Keli loves their exciting Latin flavor! The instructors  are so inspiring and always cheer her on! My Toastmasters meetings  are hybrid. We returned once and saw the other members on Zoom.  Keli is our official vote counter and loves to announce the best  speaker! Our family friend, a trained professional, gives her relaxation and coping techniques and helps Keli when she feels sad about  those that passed away or when she is conflicted with this world that  she doesn’t quite understand. At the end of the day, we’re grateful  for each other and our family and for the JACL activities that we  look forward to! Keli loved “parking lot bingo!” JACL-AZ has been a great resource for both of us especially during this pandemic!

Photo: (left to right) Kimi, Keli and Mom. (Kimi – GCU Best Buddy Program).

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