This morning, my Rebecca is home with me again. She, along with her three siblings, has a genetic condition called Cystic Fibrosis. It is a terminal degenerative disease that affects primarily the lungs, pancreas, liver, digestive system, and reproductive systems to start with. Although there is more and more promising research, currently there is no cure. This is her third week home from school.
Because of their CF, my kids tend to get sick easier and stay sick longer, especially Rebecca. It seems like she and her older sister have always had more trouble with lungs than the boys.
This is a story about my Rebecca, to help those close to us understand why we are doing things the way we are doing them regarding masking, restricted activities when indoors without masks, and are facing the difficult decision of potentially taking Rebecca out of her award winning arts middle school.
If you're interested, please feel free to keep reading.
Before COVID, Rebecca was seeing 5 or 6 different specialists and had a surgery scheduled to try to address her constant bouts of sickness. About every month, she would get very sick and have to be home and be put on antibiotics, which, of course, aren't very good to have to be constantly on.
She was also lonely and couldn't do much outside of the home because she wasn't feeling well, and anyway, there wasn't very much time to try to do anything when she had to be on her "sick schedule", which included a percussion vest and three or four different types of nebulizer medications every 4 hours.
The treatments took a little over an hour, with more time to set up and disinfect afterwards. The 6 or so hours of treatments didn't even include the other medications she had to take multiple times a day. A few inhalers, and at least 12 pills throughout the day was pretty normal.
Then someone discovered that a new kind of infection was spreading across the entire world. It was the coronavirus and was especially hard on older people and those with chronic lung conditions or other underlying health problems.
Having four children with Cystic Fibrosis and having so much to do to keep them healthy even when they were well, the family decided to be very careful. The doctors told them to wear masks and not go indoors where people were not masked, or even outdoors unless everyone was at least 6 feet apart.
If you don't know, Cystic Fibrosis patients are generally not allowed to be closer than 6 feet apart from each other, because they can share really dangerous germs that are kind of unique to those with lung conditions like COPD or CF. All of a sudden, it was like the whole world had CF.
Rebecca remembered having another family that went to their church years ago whose children also had Cystic Fibrosis.
She remembered how they had to be kept separate at activities and how, if they had been in a classroom before them, her mom and the other family's mom would come and wipe down the chairs inbetween so there wasn't a chance they would share dangerous germs like pseudomonas aurigenosa.
Her brother got that one once. They offered IV antibiotics if the inhaled ones didn't work and it took him a whole year of intense treatments to get it out of his lungs. They were grateful it finally went away, as that was one of the 'CF bugs' that could quickly lead to lung scarring, reduced lung function, and eventually needing a lung transplant.
Anyway, back to the story.
There was a problem. While Rebecca and her family had to act like everyone had CF, lots of people didn't have to protect themselves that way and chose not to do those things that would make it so that Rebecca and other immunocompromised people like her could continue their normal activities safely.
Rebecca and her family had to stop going to church on Sunday. They had to stop participating in their churches activities during the week. It was just not worth the risk.
Rebecca's mom ran a business where families came together to make music. They had to work hard to find creative ways to keep making music safely.
They did classes online - that Rebecca liked to help with. They did classes distanced outdoors - Rebecca liked these too and often came with her mom to get some fresh air and participate in the healing music making. They even did a few classes indoors with masks and filtration systems and doors and windows open to get good air flow. These were all good ways to still get together and be safe.
Unfortunately, not alot of other businesses were going to all of that work and there were still no groups Rebecca and her siblings could participate in safely.
However, they started to notice a blessing in all of the hard things.
Rebecca stopped getting sick.
First, it was one month, then another and another, until they finally called off the surgery because she was doing so well!
They stopped having to go to the specialists and she was able to stop being on her sick protocols. In fact, about a year later, her clinic reduced her normal medications because she was doing so well!
She was living more normally than she had ever lived in her entire 10 years of life and her little body was getting a chance to restore its natural health defenses. She had more time to play and do the things little girls like to do. It was wonderful.
Or, it would have been.
Now that she was well enough to go out, she still couldn't because there were very few places and groups of people who It would be safe to spend time with.
As time went on, the sickness grew more widespread and affected more and more people. States started to require that everyone follow CF protocols with other CFers. Masked indoors and unmasked but distanced outdoors.
Rebecca knew it was hard for those who weren't used to it, but this change also made it so that her family could return to church and she could return to activities! (If the safety protocols were being observed.)
Rebecca got into and was enrolled in the arts middle school in her area. Her mom talked to the school and they found ways to try to keep Rebecca safe at school, like sitting outside the lunchroom by herself during lunch, when all the other kids would have their masks off. They put a plan in place so that if Rebecca got sick, the teachers would allow her a little more time to get work in.
Rebecca took all advanced classes and, although she did get sick a couple times, she again and again got all As and Bs. She worked hard at her schooling, even while home on sick treatments. She worked hard at practicing on the cello her school gave her as part of being in the orchestra. She practiced her choir pieces on her own even when she wasn't able to be in school.
She received 7 student of the month awards in the first 5 months of school and was known for being helpful and friendly. She performed in concerts and made a best friend.
Her mom was so grateful for everyone who was willing to mask so Rebecca could have those opportunities.
Thank you so much if you've read this far.
I've been told again and again that I shouldn't live in fear. Many who have not walked our path the last 10 years, who haven't dealt with the constant disruption this disease is for our family, say that my kids could live so normally if we just let them attend all of the unmasked activities.
They don't realize that that would just be a path to further isolation and very real physical harm. CFers rarely get away with being sick and not needing additional heavy pharmaceuticals, since the mucus in their lungs is particularly thick and sticky and infections don't leave the body naturally but stay awhile and wreak havoc.
They don't realize the courage that it takes to say no. To not be hurt when those around us choose to act in ways that endanger and ultimately make it impossible for my kids to participate in normal activities. They don't realize that it isn't an option for us to pretend that everything's normal.
Just a few weeks after our local school district shut everything down for a 5 day pause to try to get a handle on the detrimental amount of sickness that was making normal operations impossible, our State officials decided to end the mask mandate for Nevada. (Just in time for the Superbowl...) 😉
The local schools, under intense pressure, decided to do the same.
We are still in flu season. Though COVID numbers and hospitalizations are going down, there is still a heightened danger of infection.
While some are burning masks and celebrating the end of the 'abuse' that was making students wear masks in school, our family is once again isolated, trying to find ways for our children to thrive when there are few or no resources available.
Even close, kind-hearted friends and family suggest that our precautions are unwarranted.
I don't feel a need to change to fit someone else's misunderstanding of our circumstances. I got over that a long time ago.
And I refuse to try to mandate what others choose to do.
But, I do feel a need to tell our story and share an alternate viewpoint.
We are the exception, and no, the world shouldn't change to suit us. But I'm sending out a plea to those who have different fears and concerns to please be compassionate and stop telling those of us who have to take additional precautions that we are wrong to do so, that our concerns are invalid. It is exhausting when we are already tired.
And if it's not too much trouble, be creative with us and help us find a place where we can be a part ... safely.
On the bright side, we get more Well Educated Heart in when she's home sick. (WEH is an awesome FREE resource for heart education. ❤)
We read the story of Grasshopper Green today from the rotation and adored it. ❤
Here's the link if you want to read it yourself. 😊
https://issuu.com/librariesofhope3/docs/storiesofinsects?e=23965438/37548829
No comments:
Post a Comment