Tuesday, February 19, 2013

world changer.

I was given the awesome opportunity to speak at my cousin, Suzi's nursing school yesterday.  She asked me to come and speak about Batten Disease but also about patient care and rare disease.  

This isn't the first time I've spoken about Mabel.  In fact, I'm getting pretty good at rattling off her story.  Although I can clearly talk about her and our journey, it doesn't get easier.  It's always hard realizing in the middle of what I'm saying that it's about our daughter.  This isn't a cause that I just happen to be passionate about.  This is our life.  Our child.  Our diagnosis.  Our desperate plea to make sure others know the name of this sweet girl we call Mabel.  
 As I left I realized that half of the class was in tears.  They see her face and they hear my words and the seriousness of her life comes crashing into them like it does to each new person who really gets it.  
Her beauty is unmatched.  Her smile is infectious.  Her spirit is untainted.  
It's all too much.

I never feel like I adequately explain everything the way that I wish I could.  But I feel like I did good enough.  I feel like at the end of the day, if these soon-to-be nurses can look back and remember the little girl with the biggest eyes whose life meant something much bigger than all of this other nonsense...
well then I will have done my job.  
 I don't get nervous anymore.  
I wrote an outline because I wanted to include important things about Batten Disease.  Statistics are important and vital in understanding but more importantly I realize that if I just speak about our life with Mabel, the message is clear:

We have hope beyond this world.
We do not live in fear.
We are victoriously embracing each day with EACH of our children.
And we will love her with every last breath in our lungs until we no longer have love to give.
 Several of the students that I spoke to yesterday are going straight into hospice or home care nursing.  I explained to them that they may never encounter a situation like this in their entire career but on the flip side, they may.  Knowing this, I pray, will help them not only be prepared but be better caregivers over all.  

I explained that when they encounter a child like Mabel to please remember that their parent is the expert on their child, their diagnosis, their medicine, their life.  That parent has researched, advocated, loved, cared for, prayed over and dedicated their every minute to being the very best they can be.  Parents of children like Mabel are smart, educated, refined and articulate.  They are not to be patronized or condescended.  
Listen to them.  Learn from them.  You will be better because of it.
 Any chance that I am given to speak to someone about Mabel and rare disease, I am going to do it.  I will not miss an opportunity to teach someone something that they can walk away with that will help them be more compassionate, kind, caring, selfless or understanding.

At the end of the day I was exhausted.  It was a long drive and I had talked and thought about Mabel without actually holding her for many hours.  I was up all night with terrible dreams, racing thoughts and an achy body.  This morning I knew that I was sick.  

I'm not sure if it was the stress of the day or if I really am not feeling well.  Either way, please pray for me and for our girl (and the redheads)...oh and their dad too.  Sickness is really the last thing we need especially this close to spring.  
I was supposed to speak again this morning at a local church but I had to cancel.  I need rest.
Every kind.

My hope is that after yesterday, someone's life was drastically changed.  I hope that they looked into the eyes of our girl and saw life and not death.  I hope that they can understand that when they give good care to someone, it impacts their entire family--forever.

I admire each and every student who is going into this field of medicine.  With no formal teaching, I feel like I have learned much about this world.  Probably much more than I should.
In that, I hope that there is a mutual respect from the students who heard our story yesterday and they will walk away better because of Miss Audrine.  

She is changing this world {and she doesn't even know it.}

1 comment:

Jaime Crawford said...

You too, are changing the world Ramee. You are spreading the word for all of us and for that, I thank you. And you reiterating that the parents are the experts- priceless and oh so smart. Good job, now get some rest. I will be thinking of you and yours, as always, and praying the sickness stays away.