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!

I will keep getting back up!

Drew patiently awaits his name being called to go back to see the lung doctor.

These critters have looked down on us every six months for as long as I can remember.

This wall hanging with the names of other patients is always a comfort to look at.

Drew is getting ready for his spirometry test with a plug over his nose.

Drew had his 6 month check up this morning with his heart and lung doctors. We had to get an early start on things and jet across town by 8:30. The sun was shining and we were in good spirits. We expected to hear good news based on Drew’s energy level and overall well being.

Drew had his heart echo first. The boys have been seeing Dr. Ruggerie since they were small, shortly after their diagnosis of Duchenne Muscular Dystrophy. He treated Christian up until he passed last October. Unfortunately, after less than a year after losing Christian, we found out today that Drew’s heart and lung function numbers have decreased. We know how this disease progresses and have had this told to us in the past about Christian, but it still doesn’t prepare us or make it any easier. The heart is a muscle and muscles in our chest help us to breathe. Duchenne’s affects all of the muscles in the body. It doesn’t pick and choose, doesn’t affect only the face, legs or hands. At times, I think this disease is a monster.

Oh, sure, I could curl up in a ball and give up. Yell. Get mad. I would rather get back up, dust myself off, and keep fighting for Christian, who I know would want me to keep fighting, for Drew, my husband, my mother and for all of the boys and families dealing with this devastating disease.

The more I see this disease affecting my son and my mother, and especially after losing Christian last October, the more I want to do something to help, educate people and keep fighting for a cure. Okay. Here it is. I want to write a book. This scares the crap out of me but I know it needs to be done, especially after I found out the telethon has been discontinued. I don’t have a writing degree or any kind of education that pertains to writing a book but I have lived it. I have seen my boys learn to walk but eventually lose that ability. I have seen them fall, I have heard the awful things other kids have said to them. I have seen them go through the surgeries, humiliation, raw fear, pain and suffering. I don’t know how to begin but writing in this blog and sharing my heart with all of you is the first step. Thank you so much for reading my blog and walking with me on this journey. This book needs to be written.

Fill the Boot for the MDA!

Picture_0029 — Christian had a great time visiting the fire station in 2003.

On July 23rd I was blessed to have my opinion piece published in the Great Falls Tribune. Source Fill the boot for MDA was taking place and I wanted to help in any way I could. Many people may not realize that the national telethon has been discontinued. When I first heard this I was devastated. Source One of the first things I asked myself was how are we going to find a cure and help these kids keep going to clinics and summer camp? More people are donating funds via social media (think Ice Bucket Challenge) and perhaps this avenue will be less expensive than airing it on television. All I knew was I wanted to get something out there to encourage people to donate. Click on the above link to read my article in the Great Falls Tribune. We need to spread the word about the MDA – what they stand for, who they help, why these kiddos need help and how people can continue to support them.

Leaving for Summer Camp_0741 — The boys getting ready to board the bus for MDA camp in 2004.

Over the years, as funds have dwindled and costs have increased, finding camp counselors has also become a challenge. It is not unheard of for counselors to arrive at the MDA camp from other states. Christian made friends with a young man from Chicago one year. He also made a friend for life, Ryan Clinch, who was his counselor for several years and was also a counselor for Drew a couple of times.

I hope you enjoy my article and if you see a MDA Fill the Boot event near you, please spread the word and help out if you can. Our boys look forward to attending camp every summer and the generous donations of so many loving, caring people make it possible!

Blog mania

Hello blog world. I hope everyone is having a good weekend! The weather cooled off some in Montana but things are creeping back up into the 90’s again. I filled the bird feeders this morning along with the bird bath and it wasn’t long before I witnessed some sparrows taking a dip.

I wanted to share with you a new format I want to try on my blog. I have wanted to write regularly but sometimes it can be hard to come up with a topic. It seems like the ideas pop into my head when I have nothing to jot them down on – like when I go to the store and forget what I came for. I thought it would be fun to focus on a particular topic on certain days such as Throwback Thursdays or Photography Fridays – just something to dust the cobwebs off of the dark, unused corners of my mind and start being creative again. Later this week I want to share with you how my blog is hopefully going to fit in with a larger goal I have in mind – something people have been encouraging me to do but I have been terrified of. It involves writing a book. That’s all I will say for now.

We are going through quite a bit of change in our household with my husband changing jobs and it’s far too easy to fall into the trap of fear and negativity. I admit that my thinking and my words have not been too positive lately. I miss Christian terribly and going through a major life change almost makes my heart ache more. One thing that helps me through difficult times is to remember all of the good things God has done for us over the years. He has provided us with all of the medical supplies for the boys, the right doctors and resources to ensure that my sons would have the best quality of life we could offer them. The verse I want to share is from John 10:10 (NLT), one of my favorites. Jesus said “The thief’s purpose is to steal and kill and destroy. My purpose is to give them a rich and satisfying life.” God’s goodness and abundance is limitless and so is His love for us. He knows we are not perfect but yet He provides. Jesus said himself that He wants us to live a full, satisfying life and He will provide all that we need and more.

I hope you will enjoy my new platform. Some days are busier with doctor appointments and caregiving for my son but I will do my best to say a few words or make sure to the next day. Thank you for reading my blog and have a wonderful week!

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.

Feed the Birds

th-9 — The state bird of Montana is the Western Meadowlark

When we moved into our first home in 2001, our realtor bought us a bird feeder. I had never fed wild birds before but soon after, I found a perfect spot to hang it right outside of our dining room window. At first a few sparrows would show up, but if they saw any movement at all on the other side of the window they would dart away. I was told that they just needed to get used to us. The sparrows would take a few days to empty the feeder and I slowly became consistent in making sure the feeder was filled.

In sub zero temperatures I would sometimes feed them twice a day.

It didn’t take long for all of the birds in the vicinity to find out where the grub was located. I started to fill the feeder daily and there were times in the winter when they would empty the feeder in about an hour! Over the years our checklist of sighted birds has grown. The number of finches and doves has grown each year. An american goldfinch passes through and so do red winged blackbirds. We really enjoy the babies in the spring.

Feeding the birds is costly, especially when they gobble it up, and it can also be messy and a hassle. The benefits outweigh the work. My two sons were disabled and over the years it became more difficult to leave the house. We learned to find pleasure in the simple things – watching the birds. We have seen the finch population increase with each passing year and have also seen more doves. Chickadees frequent our feeder as well and they are the friendliest.

The summer before my oldest son, Christian, passed away, we had an abundance of birds. He loved grackles and we had an abundance of them feasting and causing mayhem in the backyard. The mourning dove population exploded with most of them perching on the power line in the alley. We also have Eurasian collared doves. Most of the time less than 10 will be here enjoying the safflower seed off of the sidewalk. In the later part of summer, I looked out back and to my astonishment, there were 20 of them back there!

We had almost daily visits from this hawk last winter.

The winter after my son passed away was the darkest, coldest winter we had ever experienced. The sparrows and finches gave us comfort when they were brave enough to visit the feeder and risk being snatched up by the hawk that lurked in my yard. Today they cannot eat the food fast enough because the babies are very demanding. It is such a joy to watch the parent finches watch over and feed their babies at my feeders. My son Andrew and I believe that Christian is sending us birds to comfort us and to let us know that he is okay. Over the last couple of days, we have had 2 doves perch on the lift right outside the dining room window and stare at us.

If you have a disabled parent or family member who is unable to leave the home frequently, a bird feeder is an excellent idea. It is an easy, joyful form of entertainment and is something we will always enjoy and find comfort in.

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

What went right?

Do you ever have one of those days when everything is wrong? You spill your coffee on your favorite shirt, burn your toast and just about back into a car on the way out of the driveway. I had one of those days. I had all sorts of ideas and ambitions flying though my mind like fireworks, but anytime I tried to act on them I froze. I want my grief to subside. Now. But what would the purpose be if it did? As painful and uncomfortable as grief can be, it is changing me for the better. I know God has good plans in store for me and He will help me to continue the love, kindness and courage that Christian emulated during his 21 years on this earth. I do have to heal first and as they say, time is the great healer.

Instead of focusing on everything that went wrong, which including feeling and acting like Oscar the Grouch, starting a blog post earlier today that just didn’t flow at all. not being able to stay awake for even 3 pages of a novel, I will close this day focusing on what went right.

The sun came up…

Many birds came to my feeders even though I didn’t go outside to fill them…

I was able to prepare a delicious, healthy meal for my family…

My son, despite his pain today, smiled…