In the past six weeks, every part of our lives has somehow been impacted by this pandemic — whether we like it or not. It has changed so many areas, that our lives have shifted to “the new normal.”
In our house, life has definitely slowed down. As much as we homeschooled for 20 years, life was always very busy with our many commitments in and outside our home. When my older three kids left the nest, our home was still very busy with support services for my youngest daughter.
Self-Direction is a New York State program which provides people with disabilities support in the home and to access their local communities. Johanna has been actively involved in the program for the past four years. In the past two years, despite the medical setbacks, she’s been able to have a regular schedule of programs and volunteer opportunities which keep her busy and happy.
As per recommendations from our doctors and medical community, we haven’t had aides coming into our home since early March. At first, I was a little overwhelmed. While I am the primary caregiver for my daughter to ensure that she is safe, community habilitation aides are a welcome respite.
Even though we miss our helpers and going out into the community, we are enjoying a slower pace of life and having more privacy in our home. Sheltering in the home has made me realize how much I needed to reconnect with my daughter beyond just caring for her personal needs.
Jo and I are doing more projects — we started our garden indoors from seeds —reading more books, and taking more walks to the beach. We’ve been experimenting with different bird seeds and feeders to attract more birds to our yard. We watch them for hours and are almost ready to set up the hummingbird feeders for their spring migration.
Johanna loves to bake, so we’ve been perfecting our gluten-free recipes. I also rediscovered some weight I had lost, so I’m looking forward to long walks in the warmer days ahead.
In the last two weeks, we’ve found a way to reintroduce some of the community aides by connecting with them in online programs and activities. One of Jo’s aides who plays the guitar is doing more music which gives Jo the chance to play her drum and sing. They’re playing games and having fun chats over coffee — all online.
While the service is from a distance, the social and emotional connections are being renewed and even expanded through these new platforms. Jo’s been discovering museums and exploring new places with her aides on her iPad. Laughter and conversations with outside friends enhance Johanna’s life, give me some mental reprieve and enliven our home once again.
When immunity can be better proven and treatments and vaccines are available, we will slowly open our home again. But still, it may be some time before our daughter is moving about freely in the community with us and her aides.
For most of us, life is likely changed.
My husband and I were wondering whether we will ever go back to life without masks, gloves, and sanitizers (and toilet paper!) in stock and at hand? What will our new normal look like and how will our children and grandchildren’s lives be changed for what we have endured?
I hope our children, grandchildren, and generations beyond will recall these pandemic times as a time of resilience when things slowed down, families came together to pray in their houses, took care of their neighbors, and life once more became centered in the home.
For all of us, our new normal is very different from the one we had before this pandemic was upon us. It’s been stressful in some ways and a blessing in other ways. We’ve all had time to look at life through different eyes.
These past two years have been very challenging for me as a caregiver and a mom. I thought that my daughter would be settled into these programs for young adults with disabilities and I’d have time to pursue more avenues as a writer, speaker, and advocate for people with disabilities and caregivers.
Instead, our lives were a series of stops and starts as neurological illnesses and complications threatened my daughter’s life and shifted her functional baseline- requiring more hands-on care. We spent a lot of the last two years in emergency care and recovery. When she started to get better, we jumped back into what I thought normal life should be, running to complete the important tasks we had ahead.
Now our new normal has shifted. I’m sensing it’s time for a change for good.
Before the quarantine, I was stressing over stabilizing my daughter’s health so we could get back to the race of normal life and schedules. But I realize now that Johanna is very happy with her life and activities centered in our home.
Our new normal will include more books and more birds, growing more flowers and more food. We will walk more and talk more and get to the beach a few more times a week just to watch the sunset on Long Island Sound. I will expand the avenues for advocacy, while making sure that the people I serve are connected to their hearts and in their homes.
And I am not running anymore.
When my husband and I got married, we chose this gospel to be read at our wedding.
Do Not Worry
“Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Can any one of you by worrying add a single hour to your life?
“And why do you worry about clothes? See how the flowers of the field grow. They do not labor or spin. Yet I tell you that not even Solomon in all his splendor was dressed like one of these. If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you—you of little faith? So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ For the unbelievers run after all these things, and your heavenly Father knows that you need them. But seek first his kingdom and his holiness,, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” Matthew 6:25-34
These past six weeks, I’ve been observing those birds and flowers a whole lot more. There is perennial truth to this scripture, even beyond the wildflowers it describes. Take the time to observe nature and be still.
Our return to normal life needs to include a lot less worry and more of these.
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