It wasn’t even 4:30am when she woke me. I had hoped to sleep a little longer but that wasn’t going to happen. Teale’s is 22 years old and still wakes much too early. I dreamt of a teenager that slept until noon, it never happened. She’s always gotten up much too early and gone to bed much too early. We’ve tried keeping her up but that has never flipped her, so we’ve given up and let her go to bed before 8pm. On the rare occasions we need her to stay up later, she still gets up too early. Then, the whole next day is a nightmare, because she’s tired.
Life with Teale has been anything but typical. Teale still lets us pick her clothes everyday. She needs help with dressing and all hygiene. We prepare, cut and serve food. Teale takes about 30 pills a day, three times a day and we monitor her taking them.
Her care is constant and independence comes in small victories. Lately, in COVID we’ve felt stuck and stagnant. It’s tough to understand the impact this has had on my life, on the life of my family. I’ve been the caregiver, almost exclusively on weekdays. Mark sandwiches the days with caring for Teale before and after his workday. I am grateful for this, if I was “on” for all that time too, I would surely burn out.
We used to call vacation weeks off of school or program, “survival weeks.” It was truly my job to just survive them. Get the girls through and hopefully not “drown” while caring for them. Mark had few expectations of me in those weeks off. If I made dinner and kept up on the dishes it was a victory. If there were not a rage from Teale, it was a victory. If I didn’t melt into a puddle the second he appeared from work, it was a victory!
Life with Teale has changed so many times. She has had stages where driving her around, almost constantly was the the only thing that brought her peace. Her pool, in warm weather, has often been the most comfortable place for her soul to find contentment. Sadly, our pool months are short lived in Upstate NY. Teale has had times where being out and about was her only peace. We would try to find things to do out of the house, but often we were restricted by “hours of operation.” Malls not open, YMCA not having free swim hours, a museum closed. It was extremely difficult to keep her soul context.
Today is Gwenn’s 18th Birthday. It also marks TEN month’s home in COVID. My life, my family’s life and the country’s life all changed on March 13, 2020. Ten months later, here I am, still home, trying to keep my family safe from this dreaded sickness. Someday, I will look back on this stage and marvel at the fact, I did it! It’s really nothing short of a miracle, with little support or the ability to fill time with places to go, I’ve survived 10 months. So here I am, documenting the sheer grit it has taken to stay home in COVID. Keeping my family safe and staying mentally well, honestly, if I think about it, it’s unbelievable. So today, I celebrate Gwenn, & I celebrate my ability to not only survive, but also thrive in these crazy times. Ten months of “survival,” someday I will wonder how I did it, but for now, I’m just grateful it hasn’t been the nightmare it could have been. God Bless everyone & here’s to a brighter future, without COVID threatening us all.
