Wednesday, February 17, 2010

I Love My Village

In my last post I talked about villages, communities, other cultures who live to support each other. Even in our face-paced, selfish society, we have villages of our own. They are made up of friends, family members, congregations, coworkers, neighbors, and sometimes even complete strangers. Today I was reminded of that.

For the last 2 1/2 years I have been proud and blessed to be an employee of an incredible health care system. I enjoy my job, I have great respect for my employer, and I love my coworkers. Sure, we all have "those days", but for the most part, I don't have anything to complain about. Today, I was presented with another incredibly generous gift from team members throughout the health care system. Team members that I currently work with, used to work with and some whom I've never even met. I was reminded yet again that there are those in this world who are compassionate and inherintly good, unselfish people. THANK YOU!!

M returned to surgery this afternoon. I cannot tell you how many this is now in the last 2 months. This time she went 6 whole days - a new record! We are in limbo - it has been 2 months that we've been living apart, half of us in this hospital room, half of us at home and working. Yet, the world goes on around us. We've been living on one income since October and that causes a great deal of additional stress. We are at a point where we have to decide between paying the mortgage, buying food and diapers, or paying other bills. Today's gift has taken the burden off for a while longer and for that we are so grateful!

In talking with the Hospital Health Psychologist today(who apparently was sent to make sure I didn't need to go to the rubber room) I came to a conclusion. It's not only the fact that it's hard to be here, hard to watch M suffer over and over again, hard to have our family separated, hard to not know how long my job is going to be there waiting, hard to figure out where the money is going to come from; the lack of control is excruciating! I am, by nature, a control freak. I thrive on schedules and knowing what's going to happen when. I have NO CLUE what each day is going to bring. Will it bring seizures, toxic drug levels, another surgery, more scans, new medications, new nurses, new residents, new medical students. I have to tell M's story over and over and over again. I have to submit to others' ideas and probably the most exhausting, I have to fight every day to get people to listen to me and believe me when I tell them there is something wrong. I have to be my daugter's advocate because she can't do it for herself. I have zero privacy, strangers in and out all day and all night, a bathroom door that doesn't close tightly and definitely doesn't lock. I have to rush through a shower whenever a convenient moment presents (and some days it doesn't), rush down to get a bite to eat not when I'm hungry, but when the schedule allows. I know I could leave her with a nurse or a volunteer, but I choose not to. This is no way for a person to live, yet I feel I can't and shouldn't complain. I have to be grateful that we have such excellent care.

So, that's where I stand today - I'm frustrated, sad for my girl, but overwhelmed with gratitude for the generosity and compassion of others. I truly do love my village!!


Kimberly said...

Shannon - sounds exhausting on so many levels - and completely out of control! Praying for peace for you as you continue down this very uncertain road. And, as always praying for sweet little M - for healing!

Cindy LaJoy said...

The village...what would we do without it? I too understand what you are saying Shannon. There are times in our lives when we are the recipients of what the village has to offer and others when we are the givers in the community. I am so glad that others are rallying around you, this has been an extraordinary experience for your family. Your love and strength are an inspiration to all.

Tiffany said...

Oh I know the village well. Your daughter is certainly a fighter. And although I'm not a doctor, I can say from my son's experience the first year can be brutal. He had 10+ surgeries the first year, but only 2 the second year. That's progress!!!

I pray for healing for your baby girl so tht she can be at home and enjoy her family.