Live in rooms full of light. -Cornelius Celsus

Source

My daughter will grow up knowing what it is like to have a mom with chronic pain.  With a disease  (Reflex Sympathetic Dystrophy aka RSD) that impacts her mom's quality of life in many ways.  

My daughter will be impacted by this.  She will be affected.  She already is affected by it.  She knows about my migraines.  When we talk about it, I tell her, "Mommy is sick.  She has an owie here (points to head)."  She kisses my "owie" (head) and tells me "make it better."  Because in her world, a kiss makes everything okay again.  

Today she pointed to her head and said, "Kiss owie," to which I told her she was okay, that "only Mommy" was "sick."

I am afraid of the moments that RSD will steal me away from my precious baby.  I mourn the moments passed it has stolen already.  It robs me even in good moments because I am always worried about if I will experience agony on her birthday/my wedding day/her special school functions or trips/etc.

Somehow, in the darkness of what my illness brings, I hope that light will still shine and good things can come.

I hope that my daughter learns compassion for those who suffer, even if their suffering is invisible.  


I hope that she learns about unconditional love when she sees Papa taking care of Mama in the worst times of suffering.

I hope my daughter learns patience from seeing how sometimes things-such as health improving-take time and don't work on "our" time.

I hope that in the moments that I can't be there-physically or with full and active participation-that she learns resilience.  

I hope she learns that illness can take moments away, but it cannot take away love.  

There are times that I forget how much RSD can take from me.  I forget the years of my life that I spent bed-ridden, the huge chunks of my life that I don't even remember because the brain is an amazing thing and blocks out that kind of ugliness.  By living in the moment, I have to refuse to believe that my RSD will take from my future the way it has taken from my past.  But in times of increased suffering and true agony, I remember.  It scares me, but it also reminds me of the strength I know I possess.  I know I have triumphed because I've done it "all" that I was never "supposed" to do.  

I have a career.
I have a (soon-to-be) husband.
I have a daughter.
I have more good days than bad.
I'm alive.  I didn't kill myself like others have.  I haven't drowned myself in a sea of drugs.  I'm aware and present and alive.

 There is so much I want to do.  I want to advocate, I want to educate.  I want RSD to be a household name because (according to conservative estimates) there are more people with RSD than AIDS, breast cancer, and multiple sclerosis combined.  1.5 to 6 MILLION Americans suffering, debilitated, hopeless.


I hope that I can do something to teach my daughter that she can make a difference.  I'm figuring out how I'm going to make one, how I'm going to be a voice for those who don't have the strength.

For more information about RSD, also referred to as Chronic Regional Pain Syndrome (CRPS) click here.