“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).