Grief – Page 3 – The road less traveled

Song of the week

As I was on my way to Starbucks for a mocha latte and some book time, Waves by Blondefire played. I heard this song when it first came out and I enjoyed the chorus and the upbeat melody. Sirius XM Alt Nation started playing it frequently so I started hearing the lyrics:

You hear them when you try to fall asleep

They crash to the shore, they come from the deep

As sure as the sun will rise, the sun will set

You taste the salt the closer you get

Waves
Picking you up

Pushing you down

They’re always around

Waves
Just like dream

Silver and green

We live in between

They can carry you all the way to me
They can pull you out to the deep blue sea

Oh waves, there are waves

Empires will crumble to the sand
All that you love can slip through your hand

But you must face the ocean once again

Follow the tides, wherever you’ve been

Official Music Video
The meaning to this song for me has changed over the years. At first I thought it explained life with it’s ups and down, good days and bad. Go with the flow. Once my oldest son passed away, the meaning became more personal. We rode many waves, huge tidals or everyday waves in dealing with his Muscular Dystrophy. So much felt like a dream and still does at times. I have days when I feel close to him and days when I feel the tidal wave that took him away from me.

Blondefire has positive, clean lyrics with mostly upbeat songs. It’s hard to feel grumpy when I listen to them. I hope you enjoy the music video. Please feel free to comment if you feel a special connection to this awesome tune.

The Big Sky

This photo was taken from Hansen reservoir by Lewistown, MT

I woke up to something I hadn’t seen in what seems like weeks – a sunrise! For the last while, a good portion of Montana has been covered with a blanket of hazardous air from forest fires. The sky was a funny grey color and it smelled like a campfire outside. When the sun shined into the house it was an alien, orange shade. Thankfully cooler weather blew in last night and the air is no longer at a hazardous level. I have found myself pausing throughout the day to watch the white pillows in the sky float by, wondering which one my Christian is on.

I noticed some trees around town were already turning yellow. It is the end of August but it still seems too soon. One of my favorite sounds on days like today is the rustling of leaves as the wind blows and the sound of Eurasian doves cooing in the evening light.

This is the last photo taken of Christian and me together.

Fall is my favorite season and already I am looking forward to the changing leaves and cooler winds. This will be a difficult season to pass through because October 27th will be the one year anniversary of Christian’s passing. October 12 would have been his 22nd birthday. The good Lord has helped us through the most difficult first year and I know the pain will never fully go away. I will miss Christian and long to see him for the rest of my time on this earth.

On the evening before Christian passed away, he said that he wished his pain would stop so he could just sit still, look at things and really enjoy them. Now, in heaven, he can see things far more beautiful. When I hear the leaves blowing down the sidewalk this fall and see the beautiful, autumn hued, blue sky, I will enjoy it all the more because of Christian’s grace.

Hit me Like a Bomb

As I was preparing lunch this afternoon, Hit me Like a Bomb by Third Day came on. Lyrics video From the first time I heard this song, which wasn’t too long after Christian passed away, the lyrics became personal.

You hit me like a bomb
And everything I’m used to
Is suddenly gone
Sorry to accuse you
Do you know what you’ve done
When you hit me like a bomb

Hear the sound of the sirens ringing
See the world of a life that’s changing
Well you hit me like a bomb
I was scared and I started running
Can’t say I never saw it coming
When you hit me like a bomb

(La la la la la la la la…)

You hit me like a bomb
Everything’s changing
It didn’t take long
For you to start rearranging
Everything that I’ve known
When you hit me like a bomb

(lyricsmode.com)

I knew Christian wasn’t doing well. His overall health was declining rapidly over the last 6 months of his life, whether I wanted to see it or not. We knew we had to take him to the doctor and probably the hospital, but we didn’t think we were going to lose him that night almost 10 months ago. When I went into his room to wake him up for the day, I was hit by the biggest bomb ever. Our life as we knew it – forever changed.

I lost my son, my best friend, my hero and my life as I knew it. Everything changed, including how I looked at life. Life is still changing, rearranging. Everything I ever knew up to that point no longer mattered.

As time has moved on, we have been healing in our own ways but we will never be the same. Christian made us appreciate the small things, even something as simple as seeing a bird outside of the window or a spot of sunlight on the wall. Because of him, no matter how much the darkness enfolds me, I will NEVER give up. I have moments when I feel angry and I question God about Christian’s pain and suffering. I remind myself of God’s love, provision, mercy and grace so the anger isn’t able to fester and make me bitter. I would rather heal and live the life Christian so much wanted to live but wasn’t able to.

This song by Third Day has a rock sound to it and plenty of energy. Let me know what you think!

A Journey to Share

I have asked myself several times over the last couple of months why I have not been posting to my blog. The excuses have been varied: I don’t have time. I don’t want to bring anybody down. No one wants to hear about my grief. There is nothing exciting going on in my life.

I read in one of my grief books that we should not waste our pain. Our pain, the difficulties we face and how we overcome them inspire others and give them hope.

Christian always wanted to help but wasn’t able to. He said he would help with the dishes, mow the lawn, and do the things that most kids throw a fit over having to do if he was physically capable. He was helpful even at a young age and in many photos I have taken of him, he has his arm around his younger brother, Andrew. Christian wasn’t able to join the football team or do chores around the house, but he was able to love and inspire. He taught people that just because he was in a wheelchair didn’t mean that he couldn’t go to school and work just as hard, sometimes harder, than the rest of the kids. Everyone who met Christian became inspired by his kindness, eagerness to help and learn, and his spirit. Somehow, either by posting in my blog, drawing or painting (Christian was passionate about art), helping other parents overcome the daily challenges of living with Duchenne MD or one day writing a book about our experiences with DMD, I will use my pain for something good.

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.

During 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.

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.

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.

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.

Lessons from loss

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.