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You have a great life, I know you do.  I have a great life, but I bet it looks totally different than what you would expect. Just like your great life looks different than mine. What’s quality of life look like for you?  What does it look like for your neighbor?  Other family members?  Friends? Coworkers? What does quality of life mean to you?   If you check out Wikipedia.org you’ll see this:

Quality of life (QOL) is the general well-being of individuals and societies, outlining negative and positive features of life. It observes life satisfaction, including everything from physical health, family, education, employment, wealth, religious beliefs, finance and the environment.[1] QOL has a wide range of contexts, including the fields of international development, healthcare, politics and employment. It is important not to mix up the concept of QOL with a more recent growing area of health related QOL (HRQOL[2]). An assessment of HRQOL is effectively an evaluation of QOL and its relationship with health. Quality of life should not be confused with the concept of standard of living, which is based primarily on income.

Our Introduction to Quality of Life

On January 29, 2015, I was introduced to the phrase “Quality of Life” from the medical perspective.  My daughter had just finished a full blood exchange transfusion only hours after she was born.  The doctor had also had a sonogram of her brain done as she was too weak to have an MRI done.  He came and talked to my husband and I, who have had little to no sleep for the past three days, and said phrases that contained “possible stoke”,”most likely infant mentality for her entire life,” “low quality of life”, followed by things like “don’t expect much” and “I’m truly sorry.”

I’m fairly certain that I must have been in shock because I also remember hearing several times the doctor ask if I understood what he was telling me. This was my little girl.  This was my future best friend, my pedicure partner, my shoe shopping buddy.  And this guy was telling me not to expect that.  This guy had no idea what kind of woman I was.  He was not taking away my little girl from me, my perfect image.

Here we are, 3 years later.  He was right.  Almost everything he told me, he was right.  Quality of Life has a totally different meaning now.

What QOL Means to Us Now

It means we stay inside more often because my little girl has a side effect from a medication that doesn’t allow her to sweat properly.  We live in south Florida, which is sweating season year round.

We don’t take her places a lot, because the struggle to get a wheelchair in our current vehicle is real. Our Quality of life is also about reading, and singing, and playing on the ground.  Riley can’t walk.  She can’t hold her head up for more than a few seconds.  Riley has no control over her head and limb movements.

My girl loves laying on the floor with someone helping her move her legs and do “yoga” with her.  She loves music, and hearing her brother’s laughter. Do I wish she could say Mommy?  Do I wish she could go run around the house with her brother?  Would I give anything to trade places with her so she could experience life that way she deserves.  Absolutely.

Do I feel broken?  No.  She is the single most amazingly strong human that I have ever had the honor of knowing.  And the bonus, I gave birth to her.

Her Strength Provides Strength to All She Meets

As my son likes to say “cerealessly”… Seriously, she is the definition of strong. This girl has opinions, and will let you know them.  She smiles, she laughs, she eats baby food, she’s chewing.  These are all things that the doctor’s told us she’d never do.

Our quality of life is different than most, and that’s OK, because it’s our journey. Everyone goes at their own pace, we have ours, you have yours.  The single most important thing about quality of life is not to compare yours to others.

Count your blessings, say I love you’s, and hug your family.  Be grateful for the life and chances that are giving to you and make the most of it. The doctors were preparing my family for a low and difficult quality of life.  It may not be easy, but it isn’t difficult and sure isn’t low.  I may not have what I imagined to be a high quality of life, but this is our journey, and it’s changed my perspective of pretty much everything I know… and I’m grateful.

 

If you haven’t read our story, head on over to the About page.


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Sara
Sara is a mother of two, wife and full-time employee. She's also a parent of a child with special needs.

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