Laundry

Laundry.  Something that never goes away.  Just when we think we are all caught up, in the blink of an eye it’s “five feet high and rising”.  Whether it’s something we do once a week or once a day, we usually do not look forward to it.

th-11During Christian’s last year his care took more time and so did the laundry.  It was something I had the hardest time keeping up with.  I had a system worked out but as caregiving demands grew, time to do laundry became scarce.  When I folded the boys’ clothes, I always had 6 pairs of pants, 6 shirts, etc.  The number of any item of the boys that I folded was always an even set number.  When Christian passed away last October, one of the hardest things for me to do, along with setting the table and setting out pills, was laundry.  The reasons, of course, were completely different.  For one thing, it was easier and took less time because there was less clothes.  What was once even and in sets of 6 became odd and in sets of 3.  This made me feel guilty.  For another, I missed folding his clothes:  His Jeff Gordon t-shirt which he wore every race day, his Call of Duty shirt which I always liked the feel of and I thought looked great on him and all of his Star Wars shirts.  Christian’s Star Wars shirts defined what he was most passionate about, which defined him.

IMG_0391
We set Christian’s Jeff Gordon t-shirt out for the Daytona 500
DSCN0088
Most of his t-shirts were Star Wars themed

Today when I folded the darks, I had 3 shirts and 3 pairs of pants.  I began to feel sad but felt a little better when I looked up at Christian’s Samus (from Super Metroid) poster that I hung up above the folding table.  I realized that I was thankful that I still had Drew’s and Dave’s clothes to launder and as long as I am washing them and folding them, it means they are still in my life.  Maybe laundry wouldn’t be such a chore if we viewed it as an act of love.

IMG_0795
My favorite shirt which I will keep forever

A Fight to the Finish

Today, a young man named Jacob passed away from complications due to Duchenne Muscular Dystrophy.  I have been connecting with his mother, Apryl, on Facebook for the last few months.  Since Christian passed away in October, I have been able to connect with other mothers who have lost a son to Duchenne Muscular Dystrophy (DMD) or are still fighting the battle like I am.  Andrew is 20 and he continues to fight every day despite seeing his friends pass away and losing his best friend, his brother.  A kind woman, who is also named April, mailed me a drawing of Christian.  Her son passed away earlier in the month and despite her pain and grief, she sent me a beautiful drawing.  I have also had the blessing of being able to help another family in Montana by connecting with yet another April on Facebook.  Christian loved helping others and I knew he was smiling from heaven when April’s family came over to pick up his electric lift, intercom system and other things that would bring a smile to little Tyler’s face.

IMG_0254

So many lives lost.  Ever since the boys were young we would hear about their fellow campers passing away.  Some as young as 15, some in their early 30’s.  Either way, it’s just not fair.  It made my heart heavy to hear the boys talk about their fellow campers and friends who had passed away.  Friends they laughed with and could be completely themselves with.  I see their faces but I cannot remember all of their names.  I recognize them when I look through the MDA camp photos from years past.

Summer Camp 2004_0769
Christian and Mikey at MDA camp in 2004
Summer Camp 2004_0764
Christian, Ryan Clinch, Andrew and Mikey at MDA camp in 2004

Since Christian passed away, I have felt this inner pull to do something.  I read something a few nights ago that said not to waste my pain.  I started a Montana Duchenne Muscular Dystrophy Group on Facebook and I will continue communicating with other families and encouraging everyone to support each other through such a difficult battle.  My husband thinks I need to write a book.  As frightening as that sounds, perhaps the best place to start is right here, on this blog.

All I know is we need to learn more about Duchenne Muscular Dystrophy – what it does to the young men’s bodies as it progresses, how it affects family and communities and what we can do to support each other and eradicate this monster.  There is so much research going on that it makes my head spin.  Perhaps if more of us learn about DMD and support research through the telethon, lockups, fill the boot and buying shamrocks, we can find a cure.

Rest in peace Jacob, Natoma, Mikey, John, Keith, Christian and all of the young men who have fought the battle to the finish.

Christian and Mikey
Christian and Mikey were pals at camp

Lessons from loss

th-7

I would like to start today’s post by sharing a bible verse with you.  “Lord, help me to realize how brief my time on earth will be.  Help me to know that I am here for but a moment more.  We are like grass that is green in the morning but mowed down and withered before the evening shadows fall.  Teach us to number our days and recognize how few they are; help us to spend them as we should.” (Psalms 39:4; 90:5, 12 TLB)

When we lose someone we love, we are never the same.  Not too long after losing Christian, I would look out the window every morning and watch the sky change colors as the sun came up.  I still do.  At sunset, although my heart aches as daylight fades, I do the same thing.  I stand in my kitchen in the last light of the day and close my eyes, appreciating the warmth.  I am going to share with you something that Christian said to me the night before he passed away.  It felt like a knife going into my heart hearing it, but his words have changed me.  He said “Mom, I wish my pain would stop long enough so I could really look at and appreciate things.”  He said this as I was covering up his finch, Kiwi, for the night.  I think he wanted to look at him just a little bit longer.

During the years before Christian passed away, due to burnout mostly, I went through many days like a robot.  I would notice things but not REALLY notice.  I would see with my eyes but not with my heart.  Now, it’s like seeing everything through a new set of eyes.  I see the blueness of the sky and the red tints in the clouds and my heart stirs.  I hear a line in a song or a certain tune and I feel an inner stirring in my soul that I forgot was even there.

I read somewhere that we can take beauty for ashes.  We can take the soil, which is fertile with grief and watered with tears, and plant seeds which will slowly begin to grow into a beautiful flower.  This flower represents the beginning of spending life in a way that honors our loved one.  This may mean different things to different people such as appreciating the preciousness of each day, each moment or serving others.  This can also mean finding out who we are again and taking steps to rediscover our talents.  This may mean taking up a musical instrument we may have given up on years ago, picking up a drawing pencil again or going back to the gym.  For myself, I have drawn a couple of pictures and started working with my photos.  I have also cherished my reading time even more.  Christian and I shared a passion for books and I will keep on reading for him.

All I know is that life is too precious, too brief, to spend it being grouchy every Monday or to let our loved one go out the door without telling them we love them.  I look back on my life and see far too many moments that were taken for granted and I intend on living my life to its fullest, for Christian and for everyone I love.

th-4