This is not a sentence I ever pictured myself saying or typing. I am so proud of Miles and his family, but cystic fibrosis is definitely not something I would ever have wished for him.
Nevertheless, this family has pulled together, embraced Miles and his challenges with creativity and love, and made it a mission to support the research and treatments that are helping so many other children and adults with cystic fibrosis. Yep, we have been fundraising!
Tomorrow is the big day. Great Strides for Cystic Fibrosis research in Austin, Texas and we will be escorting our little Ambassador. No telling how many will show up for this short march around Austin’s new Q2 Stadium since the temperature will be in the 90s, but the cystic fibrosis kids will not be wearing their team colors.
They will wear purple to alert everyone that they have CF and the parents will know what kids to keep away from each other. Doesn’t that sound strange? The fact is that one of the most dangerous things for a CF kid to be around is another CF kid. The sticky mucus in their lungs can breed some pretty strong bacteria and they can infect each other.
I learn something new about this genetic disease every single day.
Wish us luck and perhaps someday soon I will be writing a post about Miles and a treatment that will protect his little lungs, make his life more normal, and his lifespan the same as yours and mine.
The world was in chaos (Still is!), everything was shut down and then stayed that way and not only did we put off really important things (Like medical checkups – get on that, ya’ll!) but we also had limited or even no access to the self-care we used to take for granted.
Nail care and worst of all, haircuts! So many of my friends decided to just let theirs grow and often it was a case of growing out. I had colored my hair most of my life, one color or another, and had settled for decades on a rich auburn that was kind of my trademark.
During the pandemic, as my dyed hair color retreated and my natural color appeared, something strange had happened. It was mostly white and silver with a bit of darker gray underneath. I was shocked and intrigued and since there was literally not much else to do, I let it go.
As it grew out, I took my manicure scissors to it (Something you can occasionally get away with if your hair is curly but I don’t recommend it for straight hair!), and toward the end, it was just a matter of trimming off anything that was still red. Here’s the progression and yes, I finally did get a haircut or two as the Stages of Covid went down.
So here’s what no one really tells you about this process. Your self-image changes dramatically, and sometimes not for the better. The colors that suit you change, your makeup has to change, and the psychological whammy of suddenly looking so different can be challenging.
The COVID mandates were lifted earlier this year in Texas. We were cautious, but being fully vaccinated, we became emboldened enough to actually set foot into a grocery store and eventually even a dinner out in a real restaurant with new friends! We were still masking nearly everywhere since we had our grandson who has cystic fibrosis to think of. But the confidence that we had COVID on the run was beginning to take hold, and I am sure that was true for many people.
Then came the news stories from around the world of the Delta Variant. Not necessarily more deadly, but incredibly more infectious. As it started to appear in the United States, we slapped those masks back on tightly and withdrew once again. No restaurants, no grocery stores, no socializing with people not in our immediate pod, and we had never put away the puzzles, but they regained a central place on our table once again.
Now, we had to discuss Miles and his situation in light of the new information pouring in from the CDC and other sources. In business you would look at this as a risk assessment that would lead to actions in your strategic plan.
The whole family is vaccinated. Whew! Wait, except for Miles since he is way under 12 years old AND he has the greatest vulnerability to respiratory infections due to his cystic fibrosis. We had to make yet another risk evaluation and put safety first for him in spite of a Governor in Texas who is blocking mask and vaccination mandates that could protect ALL of us, not just the most vulnerable.
I watched a video on Facebook today that came from a local news station. It featured a woman who had been vaccinated in Connecticut back in February and who had recently come down with a mild case of COVID, given to her by her school age children.
She was surprised that she could get COVID with a full vaccination and the Connecticut TV station that originally ran this evidently felt this was newsworthy, as well, and the story spread from source to source.
My last post was about grand-parenting in a pandemic and I thought I was ready.
We had the masks, we had set the protocols with the parents to be, and were isolating hard so we could be in our new grandson’s bubble. We even went for COVID tests when our daughter went into the hospital and were doing a happy dance to see that all of our hard work of isolation, keeping physical distance, and wearing masks at all times outside of our condo had been successful.
We were going to be able to meet and hold little Miles in our arms! And we did! He was adorable, but not very happy, seemed to be hungry all the time, and had been losing some weight in those first three weeks. Our young parents were going the extra mile and feeding him what seemed to be constantly but his sleep came in fits and starts and all three of them were getting so tired.
Then came a phone call that none of us expected.
In Texas, all newborns have a little blood sample taken at birth to screen for problems, and our little Miles had tested positive for Cystic Fibrosis (CF). Our daughter was calling to tell us that he had been referred to the Dell Children’s Hospital where an actual CF center was located and that they had also been put in touch with the Cystic Fibrosis Foundation.