Saturday, April 12, 2014

Cheat Sheet

I have always promised to be honest while I blogged.  I would rather have the truth even if it is cold, hard and painful than a pretty well dressed lie.  Sometimes the way I see truth is different than others do.  But even if you disagree on it, it is still my truth.

The truth hurts at times.  This last week the truth came and smacked me over the head. Hard.  I still have some lumps left on my heart and cuts left in my soul.

It started out with a visit.  For a while I had been asking a local organization to come out and meet our family.  I had found the organization on line and loved the support that they offered.  I really wanted to be part of it and I know some families that are.  They rave about it.

It too some time but they came to my home.  They met me and Cary Lynn.  Then they wanted to ask questions.  Sure, no problem.  I glibly claimed I had answers.

The first question, "Would you put a trachea tube in your daughter?"  What???  Well, I have been asked many questions before, but have rarely been stumped like that one.  I had to think.  Well, I know many kids in my SN circles that have them and really I already had stuck a tube in the child for nutrients, what's one more?  "Sure."  I say slowly.

Do you wish in life that sometimes someone would just dangle a giant fish line from the sky with a piece of paper attached to it saying here are the answers to these questions.   This was one of those times.

The questions were hard.  The consisted of quality or quantity of life and would I resuscitate?  I was told there are no "right" answers, but I felt for sure that there must be.  There has to be an answer.  So I answered.  I'm not going to go into what I answered, but I felt that I was making the right choice and holding up my beliefs.

While it is hard to answer these questions it is still harder to pretend that they don't exist.  To not talk about them or even think about them.  The truth of the matter is that Cary Lynn has multiple special needs and is medically fragile.  It is a fact of life like the sky is above us and the ground is below us.  It also does not make this organization mean to talk about these things.  They are trying to help us by supporting our family with these choices.

It also does not mean that I am pushing Cary Lynn into her grave.  Believe me when I say no one loves her like I do and no one wants to keep her here forever and a day like me.  But sometimes you have to look at the truth and decide whether you are going to deal with it, ignore it and hope it goes away, or run from it.  I am many things, but I'm not a coward.  Nor am I going to pretend these things don't exist.  They do.

What it does mean is that each moment is a little more special.  I cherish time with my kids.  I enjoy the little moments and inch stones.  I laugh more and love a bit harder.  I hold tight to my little miracles.  Both of them.  I don't spend as much time sweating the small stuff (well at least I try not to).  We also don't spend every day dwelling on our mortality around here.  That is morbid.  And unhealthy.  Mostly I spend my days trying to figure out where the magical elf lives who steals the mate to my children's socks and why I can't ever find my keys and favorite coffee mug.  We live our lives like you live them.  We aren't saints or heroes, just regular people trying to navigate extraordinary circumstances.

In the end I'm glad I had the conversation.  I needed to have it.  It hurts, but it also heals.  I love my daughter.  She isn't worried about what tomorrow brings into her life.  She is a happy and joyful child.  No matter what she always has a smile.  She is strong, brave, and in my eyes pretty much perfect.  So we will celebrate each day and enjoy each moment.  I will leave the future to take care of itself and dwell in the present and in the moment with my little ones.

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Amy Fields is a mother, blogger, and has run into a bit of computer troubles so that is why this is a little late.  You can follow her at her blog, Many Kinds of Families


  1. Those are questions that are asked on an advance medical directive. Everyone should have one, regardless of their current state of health.


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