Do you hear what I hear?

Sit back, close your eyes and listen to the sounds around you.

Do you hear kids playing in the other room?  Do you have music playing in the background?  Do you hear the electrical buzz of your computer or lights?

Let me tell you what I hear. . .
I hear a muted click followed by a whoosh.  I hear a computer click followed by a pause, then another click. 

These are the noises from Frances' room.  The click-whoosh is her ventilator  breathing for her and the computer clicking is her special speaking computer she controls with her eyes. 

However, I also hear other noises that I have become attuned to in the last couple of months. There's the gurgling of the water from her humidifier that has condensed in the tubing.  There's the sound of the mucus that has built up in her lungs that needs to be suctioned out.  There's the whine the ventilator makes as it works harder to push air into her lungs around the mucus building up.

There's also the alarm from the ventilator that I hear in my dreams sometimes.  There's the doorbell she uses to call for help when we're in the other room. 

And in all of this, I also hear God's voice.

There are days I feel like I am fighting God because it doesn't seem fair to my human brain.  And still He says that this is His plan and to wait.

There are days I want to ignore Him because I'm angry.  And still He says I'm still here for you.

There are days I want to hate the world, hate this disease, hate God.  And still He says He loves me.

And then I cry.  And I pray. And I thank God for the things that I take for granted.  Every breath I take.  Every step I take.  The family that took me, a virtual stranger, into their home.

And I know that I am loved, even when I don't feel it.

Happy Thanksgiving

Happy Thanksgiving everyone!

Many thanks to Scott for buying my ticket to come home to Phoenix for a few days.  It feels like no time has passed since I left Arizona for Oregon.  Ben was threatening to start a mashed potato food fight and I fell asleep during a movie at Jamie's house...I'm home again.

Today has been an emotional day for me.  I woke up at 7:30am to the chorus of "My tummy is grumbling." and was up and running.  Breakfast for the girls, last minute packing, even more last minute instructions for the family taking care of Frances and then off into the cold for a short wait in the airport. 

Both of the mother figures in my life did not know I was coming home this weekend.  I was able to make them think that I couldn't come but was trying to come for Christmas.  I thought Mom was going to drop the food in her hands when I came in the door.  Debbie was sitting at the table and started crying.  And I being the emotional mess that I am, cried both times. 

I'm home until Sunday and hope in these 4 short days that I can rest and recharge my batteries.  I need to take a step back, and realize that I can't do everything on my own and to utilize the help other people are offering.  I'm planning on resting and enjoying my break and praying I don't go home to a messy house in Oregon.

I hope your Thanksgiving was full of food, laughter, and love. 

The beginning . . .

So this is my attempt to keep everyone updated as to what's going on in my life and how God is working in my life. 

To start, let me explain what has been going on in the last 6 months.  Six months ago, I came to Oregon to visit my cousin Frances and her family.  At the time, I had not seen Frances in 22 years.  I had found her husband Scott on Facebook and caught up on what had happened in those years.  I found Scott and Frances had 2 beautiful daughters and that Frances had been diagnosed with the same disease her father passed away from.

I originally came to Oregon with the expectation to meet my family.  Luckily, I was invited back for the 4th of July weekend. After I came back to Arizona in July, I felt like God was whispering to me about Oregon. Ten days later I was fired from my job that I had held for over 2 years. God's whispering got a louder with a few nudges thrown in. 

I talked to Scott after a week of job searching and he mentioned coming to Oregon to help take care of Frances. I thought and prayed about it for a week and made the decision to come to Oregon. Three weeks later, I had packed up my apartment, stuffed a storage unit with my furniture, and drove 1300+ miles with my best friend. That started my current journey.

I remember hearing about Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig's disease) in high school when my mom's Uncle Chuck was diagnosed with this disease. Mom told me that this was a disease that ran in the Mickley side of the family. Last year, Frances was diagnosed with this disease. 

I've been here for 2 months now.  I have learned more about my family, more about being a caregiver, more about myself. I still feel God's loving hands in all of this. 

I'm going to use this blog as a place to come vent, share stories, and express myself, so please forgive me if I seem to be rambling or go off topic.