Covid. Some of us feel as though we are losing time and our lives are altered. I actually lost a relative to COVID. She was elderly, but that is no reason to pass. She didn't deserve that. Now, politics aside, my life has not altered much, besides wearing a mask. BUT, on the other hand I am a parent to a very special little 10 year old. (my daughter) She has special needs. CF. (Cystic Fibrosis) This is where my life has changed... altered out of some fear for her getting ill. Be careful out there! Seriously.
After birth some complications arose and she was taken to Syracuse NY. There, she would stay for a while- we stayed at the Ronald Mc Donald House. There were other health issues going on in my circle as well. It was so complicated but I plugged through it and by the time the crisis was starting to subside some, my eyes felt like they were falling into my head, like a skeleton, feeling.
After this, doctors did some testing and still no answers. Around 2 years later, what they were thinking came through in a test. CF became our answer. I had no clue what that was. Now, we are more educated than ever on this. The sad part for my daughter is that she can't - should not- be around (or date) people with CF as they can cross contaminate each other. I think, we all want someone who relates right in life at times, on some level. So, this will be challenging for her. Even in school, if some kids have CF they do their best to keep them apart. This school she attends has been great working with us and this year and part of last has been all virtual schooling and her teacher who has became our friend- comes out once a week to visit Sunsetta. She goes over the top for this. She deserves "teacher of the year." Good woman, works hard and I don't know how she does it.
Later, during another virus crisis- she almost died in the hospital. Our daughter (prior to official diagnosis) was put in a croup tent. All that moisture built up in her lungs and luckily, with mother's instinct, her Mom was there and wanted her out of that damn croup tent. So when she went to get her out of it Sunsetta fell limp. She was turning blue and turning into a motionless weight. I immediately hit the "panic emergency button" and in came a slew of staff. We stepped out of the room. A doctor someohow revived our daughter and the first thing she did was smile at her Mom. I remember her first word too. "Momma". She was super in baby years, young- and nobody believed me outside of us. It was clear as day.
So, now our daughter is 10 years old and doing well. Thanks be to my spirituality and modern medicines it gives me hope that
she will have a LONG life and happiness. It must be hard to have to do treatments everyday while other kids are out playing, or even just sit (about 45 minutes per day) doing that- and yes at times it can be challenging. I can't imagine losing a child. I just can't fathom it. I hope she never has to have a lung transplant or any of that. Let's not think the worst and hope for the best!
She is a lot like me, but looks a lot like her Mom. Total by ear musician. I love her. We designated a name for her that I made up in high school. Sunsetta. Because she is. Sunny.
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