Carrying It Well

Most people know I am not a complainer and that I always, always look for the good in most situations.

And I’m sure one day, I will find the good in this, too. Today, it feels anything but that.

Sure, I put on a smile and do my work. But the heaviness in my heart is ginormous.

Some of my closest friends know the recent unfolding of some devastating news. As a private person I intended to be quiet about this, too. But after thinking long and hard I realized that maybe by speaking it, someone will be inspired to see the need for serious changes in our world.

Since my daughter was 10 years old (she is 26), I have been her certified nurses aide. This allows her to have the help she requires and me to be paid for providing. I also receive health insurance through the home health care employer I work for.

Last week I learned that the state of colroado and the resource exchange has determined that she is no longer eligible to receive services.

What does that mean?

There are layers to implications to this. It means most importantly that if I were to die, she would NOT have the services in place for her to receive the care she needs, except in a completely inappropriate placement like a long term care center. Secondly, it means that this incredibly hard working woman now loses an income and worse, health insurance. And finally, it means she doesn’t get the services she needs and is eligible for. It is all handed back to the parents to do, and the state must think parents of special needs people live forever.

I have a much needed surgery scheduled in three weeks. I have multiple preexisting conditions that prevent me from getting AFFORDABLE insurance which leaves me to have to pay for incredibly expensive, limited, and costly out of pocket insurance that covers the minimum of what I need. And deserve.

For the pencil pusher at the state level and at the agency who oversees funding—how dare you.

I’m not sure what my next steps are. Perhaps get a j.o.b. and release my dream of what I’ve created. Perhaps I sit and do nothing but pay the premium and put off surgery until something better comes along.

Mostly I pray that one day people with disabilities will have the protests, rallies and out spoken support that other groups seem to get. Until then, this most vulnerable population gets swept under the rug, forgotten about except for their very tired family to deal with.


We have all heard of the metaphors of feeling stuck in a cage and not able to be free to fly, or the imprisoning walls that have been built around us. The brick and mortar is often what we place around ourselves that create our own version of prison.  These can include negativity, questions of worthiness, regrets of the past and worries of the future. Similarly the key to the cage that we so often feel trapped in resides in our own hands. It is our choice to stay in the cage or take the key and unlock it.  No matter what circumstance we are in, we ultimately have choice in what we do with it.

We are not our circumstances, instead we are our possibilities. 

As I was planning this month’s classes around the concept of freedom and being liberated, I received a message from a dear friend whose young daughter was just diagnosed with autism. Heartbreaking as those initial words were, I saw within a few short days a woman take on this experience like that of a true champion.  Sure, she cried her eyes out and felt fear for the unknown.  We all do when we hear those words.  The first thing I did was send her the Welcome to Holland Poem.  Then we talked awhile about what may lie ahead as she leaned on my experience to help her navigate the first few steps on this new and scary journey. Then she got busy.

She certainly could have felt like this news was a giant reason to give up and stay stuck.  Many do.  She however, in her warrior spirit, immediately saw a need to advocate and start asking questions about services and community integration for her sweet little girl.  She took this as a chance to make a difference in the lives of her daughter and others.

That is what freedom is.

Freedom is defined as the power or right to act, speak, or think as one wants without hindrance or restraint. My friend refuses to feel imprisoned by this diagnosis and she will use the power of her light to act and speak without restraint.

This is just one of a million examples of how we can feel stuck, trapped, locked in, or caged.  Whether it is a relationship, a job, a location or a belief you have about yourself, WE have the power to act, speak and think without restraint and hindrance.  We are in control of what we do with our circumstances.

Do you feel imprisoned?  Are you the one laying the bricks down and filling them with mortar?  Do you hold the key in your hand and refuse to unlock the door?

What would freedom feel like? This month we are going to chisel away the beliefs and fear that build a wall around ourselves.  We are going to slip the key into the lock and learn to fly. We are going to feel free.

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