This week marks a full year Emily has been home from school. She was out sick the last few weeks before we completely shutdown in California on March 13, 2020. It feels like only yesterday and like forever ago at the same time. Adjusting to all of her services being stolen from her in one day is still a hard pill for our family to swallow. I know the struggle is real for everyone but I believe it has been a little harder for the disabled and the elderly. That is just a thought, but one I stand by.
It takes so many people to care for Emily and to meet her needs. She needs full care. Our family could never do it alone. Well, that is not true, because we did it for the first few months of quarantine. When a world pandemic forced it on us, her care became ours alone. As we were all adjusting to having 4 people in a 1,000 square foot house all trying to find a corner of quiet and good internet connection to work, Emily was just confused. She became agitated. She was angry. She got louder. Her anxiety began to increase. She could not and still does not understand. Her agitation and anxiety echoed off the walls. It was audible and palpable. Imagine waking up one day and everything you know is gone with no explanation: your job, your friends, your support system and you have no idea why.
We managed for about 12 weeks like this. All of us clinging to a life raft to keep our heads above water. Weather permitting, I would take Emily outside for walks. Some days my hips and foot pain kept our walks short. I would bring a small blanket to park my bottom on the wet grass at the park as everything was taped or fenced off because the park was “closed”. I brought a speaker to listen to music or play a podcast.
On one of our walks we listened to Brené Brown’s Unlocking Us podcast. It was about debunking the myth that relationships are 50/50. In it she discusses that her and her husband developed a habit of discussing how much they had to give on a percentage basis and included the kids as well. If the family had at least 100% between them, then they were good and if not, they had to figure out how to close the gap. After I listened, I knew our family needed a GAP Plan. I was also certain there was no way Todd, Justin and I could ever get to 100% without help. We were going to have to open our circle to bridge the dam-sized gap in our home.
I remember bringing up the discussion with Todd. He was not thrilled at first. COVID-19 is real. It increased our risk and Emily’s risk of getting it. I told him we had to come up with a solution because our family could not continue living like this. There is balance between mental and physical health and while we were all physically healthy, I could see our mental health dipping, especially Emily’s. After some debate, he agreed. I reached out to someone who has cared for Emily in the past and only lived with one other person that worked from home. Her job had been shut down since March and the risk was low to invite her into our home. She agreed to care for Emily a few days a week during peek hours when my job needed me to be available. Emily was happier getting out of the house for walks and to see a new face. I had a few hours to concentrate at work. The help also gave my back, my hips, my feet and my mind a much needed break. There was really nowhere to go, but just having someone else around lifted Emily’s spirit. We have continued to open our circle a bit over time to meet our needs and to give Emily more sense of community and her normalcy.
I cannot say that I have loved quarantine. Emily and I are a lot alike in that we both love social interaction. Zoom and the phone is okay, but just not the same as in person connection. Our family has rallied together over the past year. We have all taken turns doing the heavy lifting when another is busy or physically exhausted. We have done the best we can with the resources we have but I still believe Emily deserves and longs for more. I have said for years that it takes a village to care for Emily. The last year has spotlighted the truth in that statement.
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