Friday, June 25, 2010

To the Caregivers

This morning I woke up to read about a 7 year old boy who died from CF. His mother's writings about the excruciating journey grabbed me in a place so deep within, there are no words to respond. Her rawness, her honesty, her love and her sorrow were both devastating and beautiful because it all comes from a place of pure love.

Later the same morning, I was lucky enough to be one of the speakers at a caregiving conference. I entered the room with the grieving mother on my heart but not really expecting it to connect with my day. As I listened to the first speaker talk about the role of caregivers, the level of stress they live under and the struggles they experience but rarely acknowledge, my thoughts turned inward.

My mind scanned the years past. All 36 of them (that I could remember) played themselves like a song in my head and the melody was the same in every refrain: my mother, my father, my siblings and my friends. What they have gone through. The nights of worry while wiping my brow or watching me wretch. The financial burdens, the emotional burdens, the psychological burdens and the spiritual burdens are all too heavy to be weighed.

And yet they did not stop. They did not let go. They tolerated my moods, my good and bad treatment choices, my extreme physical needs and my emotional demands. They held me even when I had lost sight that they needed holding too. They loved me even when my mind and heart were too wrapped up in my own chaos to see it and properly return their love. They gave and they gave and they gave.

And how often did I say thank you? Not, "thank you for bringing me water," but a real thank you. For all of it. For their suffering as a result of my suffering.
Rarely, if ever.

How often did I hold their hand and ask what they needed, how they could be supported?
Rarely, if ever.

How often did I reveal to them the worry I felt in my gut when I allowed myself to wonder how they would make it through these stressful, sad times?
Rarely, if ever.

How could I let them give so much and give so little in return?

Today my eyes welled with tears as I tried to think of a way to express how much the caregivers in my life mean to me. How deeply I appreciate their selflessness and compassion. How vulnerable I feel to know I was at their mercy and how humbled I am to see how well they held me together.

Mom, Dad, Lori, Jill, Jay, Steve, Paul, Liz, Watts and all of those who held my broken pieces, I did not tell you because I don't know how. I did not tell you because sometimes I was so involved in my own crisis I was unable to see beyond it. I did not tell you because what you have done for me is beyond what I can really understand. I did not tell you because what you have done for me is beyond my capacity of expression.

I have been selfish. I have been clueless. I have been lost in my own survival. But, most of all, I have been silently grateful, silently overwhelmed, and silently embarrassed. When there is so much giving that it begins to feel absurd, it feels like there is no way to match it with poetic words or meaningful actions. So, stupidly, I just didn't try.

I am sorry I have not said it enough. With all my heart, I thank you. For the care I know about and the care I didn't even see. For each individual way you have cared for me while trying to keep a balance. For the times the balance was lost and you kept caring anyway but on a tilt. You are why I am here. You are what matters. You are the people I am honored to call family. I am so lucky.

I love you. I thank you.


4 comments:

Lori said...

You are so totally worth it. I'm only sorry I haven't done more.

I love you little sis!

La

Lennie Weese said...

When I had my transplant I lived from October-January away from my home/family and they had to travel an hour to see me. It wasn't until I saw how exhausted they were comming to see me, but they they were still so committed to being with me at-at any and all times, that made me appreciate all of the care the gave me. That and the prednisone makes me cry-but its kind of comical. Whenever I am having a prednisone cry I am always thanking my family for being there for me, and appoligizing for when I don't feel well and am not nice.
You have another great post, it really feels like you put my emotions into words in you post.

KirBir said...

It's funny sometimes how we don't realize how good we have things until we think about those things being removed from our lives.

I hope that things are going well for you. Stay strong!

Also, I just nominated you for the One Lovely Blog award: http://notstandingstillsdisease.blogspot.com/2010/07/one-lovely-blog.html

tenate said...

Your post touched a real nerve in me Tiffany! My lovely wife and 9 year old son sacrificed so much over the last 5 years as I have dealt w/ and survived 2 double lung transplants as you have. My wife has been the rock of our family through all of this and I am seeing now as we returned home to TX after 2 years in St Louis waiting for txp that the emotional toll has taken far more from her than I could see during the journey! GOD placed her in my life 27 years ago and today, I am the one reaping the benefits of her love and dedication to me and our marriage. She stayed strong and has been the ultimate example of living our wedding vows" Till Death do us part"! I can never repay her or thank her enough but will do all I can to that end with whatever time GOD has given me here in this life! Thank you for this post, for all the caregivers out there who have sacrificed so much for their loved ones.