The Cost of Living

I've been thinking about the cost of living this week.

It's expensive to live in America.  The cost of living is high.  Everyone I know, is working just to pay for the privilege of living in this country.  We spend half the year working to pay taxes and the other half of the year working to eat and keep up a two bedroom charmer, and gas in the sub compact car.   There are so many things we need just to survive in this world.  Even the homeless are burdened and weighed down with things they deem necessary to live at the lowest level of poverty.

Whenever I visit Salt Lake, I am always struck with the visions of homelessness I see.  They have so much stuff yet they are so very poor.  There is no escaping the cost of living.

But, bigger than that is the cost of living with this disease.  I'm not talking about the cost of healthcare, though that is puzzling.  I'm not talking about the cost of driving 1000 miles a week and your two year old car has the miles of a 6 year old car.  I'm not even talking about the lost wages and underemployment that becomes the norm when faced with a disease of any kind.

I'm talking about the cost of living...all that it takes to live in a world of disease that is constantly robbing you of everything- your security, your hope, your connections.  It drains your dreams, the very thing that sustains life, some days.  Before you know it, your resources are taxed.  It's an investment that begs for attention whether you have enough to pay or not.

It's costly.  It's life changing.  It's poverty.  It's scarcity.  It even steals your home, a place of belonging in this world.  It sets you apart in isolation.  It demands it all, and more until there always feels like there's a debt to be paid.

This week, I paid attention more to the cost of living with Dyskeratosis Congenita and CVID.  These diseases have stolen the most precious of my belongings this week; a costly blow.  My daughter's shining eyes and glowing smile have given way to tears and despair. My boys have approached life a little more guarded as they witness what will surely come to them as well, sooner or later.  By all accounts, our sense of security, laughter, and hope have dwindled to startling levels of poverty.

I did hear from the Oncologist tonight.  Shelbie does not have Lymphoma.

This is where I should say things like...God is good!  Amazing news! What a blessing!! Truly an answer to prayers!


She has Granuloma disease and an infiltration of lymphocytes.  In many ways, this mimics Lymphoma.  There is no promising treatment.  It will eventually infiltrate her organs and there is no way to stop that from happening and it has already begun.  Eventually, she will need oxygen in order continue to live.  That may be in a few months, or next year or in 5 years, no one can say for sure.  There are things they can do to try to slow down the process, but that would be the best case scenario, just borrowed time.

It was hard to hear that tonight.  I wanted to cry but I sacrificed my own tears in lieu of hers.  This was her broken moment, not mine.   I stood strong, as strong as any mom can stand, while she fell into me and poured out the weight of this week on my shoulder. There is not one thing I can say to her, to soften the blow.  Not one word will make it better or change the course of things now.

The cost of living is greater than ever.

I know that underneath all the layers of hurt and worry, God is still good.  It is amazing that she does what she does every day.  Her continued talents and gifts are a blessing and the fact that she is still here and beating the odds so many times before, truly is an answer to prayer.

We will pay our dues here.  It could be worse, but for now it's not, and that is a tender mercy.  This is not okay, not today and it probably won't be okay tomorrow but give us a minute and we'll be fine again, someday.  Soon.  I hope.


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