Wednesday, April 1, 2020
Our NEW Normal
So...Now that we have nothing but time, I am determined to re-start, re-vamp, re-Something my role in the NF community. I feel bad. I let life get in the way, and in doing so, I let what's really important, slide to the way-side.
This whole COVID-19 thing seems surreal. It's like I'm watching some terrible Netflix movie...But sadly, I can't turn this movie off, or switch the channel. It's affecting REAL people, In REAL ways....and it's scary.
Almost 2 wks ago, the Child Care Center I work at closed its doors...With the promise that the workers who CHOOSE to, could begin doing an 'At Home' service. I was excited about this, and to be able to bring home an income.
Well....Things changed, and that option was no longer an option. Booo....! I was however lucky enough to get in contact with one of our families at the center, who brought me into their home to watch their boys - But with things escalating with COVID...this lasted a week.
Families like ours - who live LITERALLY pay check to pay check are being hit HARD. We have no savings, and no rich relatives...So now, I'm scrambling, literally applying for jobs...ANYONE that will have me....and in the meantime, my heart is breaking.
When I left the theatre for the Child Care Center, I took a pretty big pay cut....But...to me, it was worth it. FINALLY I would get my foot in the door, doing something I LOVE. The center is great, and I love the "fill-your-bucket" style they have. But, now I'm feeling like this path is disappearing - Being taken away...Like....It was too good to last.
Do you ever feel that way...? Like the good things never seem to last...?
Brain tumors are stable today....But in 6 months, you find out you need surgery, chemo....
I've been there friends. I'm there now.
Sometimes....Living in the moment is hard. But you can take comfort in knowing, you aren't alone. The path can be scary....The unknown brings anxiety, uncertainty -
And this brings me to my point. That's the WHOLE purpose for this blog. To let you know that you ARE NOT alone. I''m with all of you, in this crazy and scary time.
I'm reaching out. Grab my hand.
THRIVE ON!
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The most important thing is your kids health. It is almost certain that neurofibromatosis makes the risk of serious illness or death from SARS COVID 19 a heck of a lot worse.I bought thermometers, a pulse oxygenation meter and a blood pressure monitor online for about 150 dollars in total. These are to check my vitals and news are saying something about undetected low blood oxygen as a sign of potentially fatal illness that could have been predicted at home with said small machine.People who caught SARS COVID 19 are going to the hospital at the last minute when there vitals are obviously low without a machine to measure those vital signs when the signs begin to d RT op below normal levels published by the Cleveland or Mayo clinic.Do not buy the cheapest brand as they lack accuracy but you do not have to splurge. Sorry for the rambling but protect your children from this deadly virus watch the news about specific treatments to request should one of you catch SARS COVID 19, apply for unemployment, and get your darn kids SSI or SSDI which I got due to some work history and it pays more.
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