Monday, February 15, 2016

The last 4 days

Each day, I've sat down to write. Multiple times in a day, I sat down to write. I opened a blank page and stared at the expanse of nothing.  Nothing on the page, nothing in my head. Not because there is nothing going on.

Not even because my head has nothing in it.  My head has everything in it.  Every. Thing.

I'm tired.  I'm tired of feeling tired from the moment I wake up every day.  I feel like I am in a cloud of fatigue.

My parents were here all last week.  It was so nice to have them around.  I never realize how much is missing from my life until something different comes along.  I didn't realize how nice it was to have someone else around just to be around.  They didn't solve any great mysteries, take away any pain or suffering.  They didn't pay off my debts, find me a new job or fill my freezer with months of groceries.  They did nothing; but everything.  They were here.  They were here to witness the hours of our day.  They were here to amplify the joy we really only share between the four of us.

But, then they left.  In their leaving, I realized just how lonely and isolated we are.   I realized how far we are from everyone else's fullness of life they experience.  I realized how far we are from the friends I once had;  the friends I had come to rely on as family since mine are so far away.  I realized how quiet we are when it's just us.  I realized that I am nothing like the person I use to be.  I realized how much this disease has changed us into something I don't even recognize anymore.  I didn't even realize we were changing.

Saturday, I worked at the temple.  I was introduced to a lady whose son passed away a couple of years ago.  He was in his 40's I think.  He had lived a life confined to a wheelchair.  I knew of her son, everyone in town knew of her son.  He loved to sit on his corner and wave to people passing by.  Not a day went by that I didn't drive by this lady's house and imagine what her life was like.  I tried to imagine if it was full of purpose or filled with fatigue like me; being a single mother, taking on the responsibility of caring for a needy child.

I finally met her.  I actually shook her hand...like she was some celebrity in the world of the dying.  I wanted to tell her how often I thought of her.  I wanted to sit down and take notes and learn from her struggles.  I wanted so much to grab a hold of her and beg her to never leave my side.  Instead, I said, "It's so nice to meet you!"
She new a minuscule amount about me and our journey and so her response to me was, "It's a different kind of life, isn't it?"  As she looked deeply into my eyes, I knew she recognized my own vacant shell of isolation.  She didn't have pity for me, empathy.

So, I suppose the last four days wasn't a total wreck.  Sam had been asked to the Valentine's dance.  He was as handsome as ever and had a cute date.  He enjoyed the evening but came home sick.  He is still very sick.  When Sam does nothing but sleeps, you know he is feeling miserable.  He was barely awake yesterday and has slept in today.
Valentines Dance 2016- Sam's last Valentine's High School Dance


Spencer is doing well.  He is working hard but he is doing so many great things as his missionary efforts continue.  He has been on splits with the missionaries and brought a young man to church yesterday.  Tomorrow, he will be attending the Addiction Recovery Classes with this young man and support him as he works to get over his smoking and drinking addictions.  He has been helping friends are going through difficult family struggles and other issues.   He has set aside his own worries to help those around him.  He makes me very proud.

Shelbie is doing remarkable as well.  She has a good outlook on life.  She still has moments of fear and worry but for the most part, she is managing those times.  She is hopeful.  She had her transfusion on Thursday.  It went well but they are getting harder and harder to get through mentally. The side effects are usual but we have avoided an ER trip this weekend.

Finally, I do want to mention a big thanks to some people we don't even know who sent a fun little package from Pittsburgh!  Their daughter was attending college here but had to go home for brain surgery.  Spencer served with her brother in Colorado and they are best friends in Utah now.  I told her they could store all her things in our basement until she came back later this year.  This was their thanks for  helping them out.  Honestly, I forgot her things were down there!  It was so sweet! 




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