"When we honestly ask ourselves which person in our lives means the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand." -Henri Nouwen
Sitting in a waiting room.
I am silent, focused, calm, trusting.
Held with the hope that all will be okay.
And armed with the knowledge and history that we will cope, if the unexpected arises.
Because we have done this before.
So many times.
Sitting in a waiting room.
Recounting other times we have been here.
Remembering words and conversations.
Viscerally aware of how time feels simultaneously suspended and as if it's moving at light speed.
I try not to count the minutes.
I scroll. I read. I listen to music. I try to remember to breathe.
I start listening to the other conversations happening around me.
I get distracted and instead begin to count how many times we have been here in the past 13 years. But then I get overwhelmed, frustrated & annoyed, so I stop the counting.
I have asked the question about having the imaging shortened. Because it is my job to ask.
I ask her team to create a protocol that is specific to her needs (not the blanket "full body" option that will be over four hours long).
I read past MRI reports that trigger the memory this has happened before.
I read X-ray reports that mention the possibility of something new that no one has ever discussed with us. I email my favorite social worker to let her know what I have discovered and to tell her about my agitation with this process.
I complain. Because I think about how intricately I am involved with this medical system and [still] how challenging it is for me to navigate.
I complain. Because we have a team of highly skilled and well respected providers who are the best in the world with these challenges, but there are [still] always missteps.
I complain. Because they are human and don't respond to me quickly enough.
I complain. Because in 2016, I want this system to be more family & child friendly than it currently is. Because I think of the families who don't know to ask the questions or are uncomfortable doing so.
I complain because I want change. I complain because I don't want to be dealing with this again. I complain because there are [still] some moments where the unfairness strikes me. And this is one of those moments.
And she hears me. She gets it. This social worker who we have known for 8 years. She helps me to hold the frustration.
I ask and ask and ask. Because that is a piece that I can control.
Because advocating and action makes me feel like I am covering all the bases.
Because doing is more comfortable than being.
I ask and ask the questions, because I [still] want answers and options.
[even when I logically know that options and choices are limited.]
I will continue to ask the questions. Because it is my job.
Because in this life of medical complexity and systems that don't necessarily support what is most child friendly, I long for simplicity and ease. Because if I don't ask these questions, who will?
Some days I am at peace with the waiting, the unknown, the questions that linger. Some days and times I find grace in these uncertain places. Other days I seek and dig and circle and long for things to be different. Some days the sadness is suffocating and the anxiety is exhausting.
Today I am finding space to honor all of the pieces, because today that's where I'm at.
And [still] we will wait.