The road less traveled

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…

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.

A Walk in the Park

Yesterday I decided to go on a walk for the first time in almost 2 years. I used to walk often before my sons started needing more help with their care. I read in several places that exercise is helpful when we are grieving. I ignored the urge to go walk a few times since Christian passed away but I wasn’t able to ignore it this time. I completed the book series we read together, the Mortal Instruments and Infernal Devices by Cassandra Clare (blog post on that coming later), so I no longer had an excuse. I settled on Gibson Park. At first I didn’t want to because that is the last place I went with Christian during his last week with us.

I couldn’t figure out why Christian kept asking me to stay by his side, but it all makes sense now. As weak as his arms were he was still able to feed one of the geese.

At first, I looked around the park and everything looked exactly how I felt, hollow and sad. The Chinook winds have been blowing for a few days so most of the snow has melted, revealing the trampled, soggy grass underneath. My heart began to lift when I noticed some mallard ducks right along the walking path. The geese were gathered around people who were feeding them. As I rounded the second bend on my lap around the park I heard chickadees – “chick a dee dee dee dee”. If you have ever heard them then you know exactly how cheery they sound and how uplifting it is to hear their call. I started snapping shots on my iPhone. Someone did a wonderful job carving this turtle out of a tree trunk. I also noticed the lamps

that had been put up since I had last walked at Gibson Park. I started to see beauty among the ashes of the winter storms we experienced over the last couple of months.

A little ways further and a friendly squirrel ran up to me and started scampering around me in circles. He looked at me like he was expecting a peanut. I looked around and noticed the little fellas were running and playing all over the park.

As my walk came to a close and my car came into view, I started feeling lighter. I knew that to do the things that bring me joy and peace are the things that honor Christian. I plan on continuing my walks and I hope to encounter more critters that I can take photos of and share with you all!

Someone we would most like to have met

I haven’t posted in a few weeks. Christian’s passing was just before the holiday season began and it was a lot to process. I was happy to have my mother and sister here for Thanksgiving and it did help things to not be as overwhelmingly painful. We shed more tears around Christmas but did find great comfort looking at the lights on the tree. It was a different kind of Christmas all right. It did help to go the the cemetery. A friend of ours beat us to it and left a couple of gifts for Christian.

And my mother had a company in her town make a Darth Vader decoration for the grave. Christian was very passionate about Star Wars and had a lot of empathy for Darth Vader (a post on that later).

Thanks to the comfort and strength of the Lord and the love and generosity of family and friends, we made it through our first holiday without our oldest son.

Around New Years, I picked up the paper and saw a headline called Montana heroes lost in 2014. The article link is http://www.greatfallstribune.com/story/news/local/2014/12/30/montana-heroes-lost/21076535/ . I decided to read through the article and thought in my mind that Christian was our hero in so many ways. I was in disbelief when I saw Christian listed in the article! I was touched, I cried, posted it on social media and let my family know.

My husband did the best job ever in writing the obituary. Christian cared for others, he loved others, he was kind, courageous and intelligent. He also had a great sense of humor and had the best laugh. His smile. I could write about his smile alone. It’s impossible not to smile when you see the light radiating from his face.

There are so many people that changed the lives of those they were close to just by being themselves. Christian was one of them. He wasn’t able to fly a plane or publish a novel but he did many smaller things that meant just as much. He made us laugh, he received an art award in 2010, he helped out his grandparents with groceries and he always bought us the best gifts. He made an impact on so many people with his love, grace and humor. If there was any way he could help, he would do so to the fullest of his physical ability. Christian inspired everyone he came into contact with, even if it was just once a few years ago. I miss him and hurt in a way I cannot put into words, but I feel tremendously grateful to have had him in my life. He left me many of his traits and as I heal, I will honor him by continuing his love, kindness, humor, courage and grace.

Skyscraper

Last August, my younger sister, Sherry, called me in a flurry of excitement. Interpol was going to be playing in Denver September 27 at the Ogden Theatre! I could hardly believe it and I also didn’t see how I could possibly pull this off. With the boys’ needs I was lucky to go to the grocery store or run errands. I had to fly. This was a sticking point with me because I am not fond of flying and it would be for only one night. I decided that I was not going. My oldest son, Christian, kept encouraging me but I wouldn’t budge, especially since I would have to take Dramamine. If you have taken it you are probably familiar with the drowsiness that accompanies the relief. I kept going back and forth until Christian told me that if it was his favorite band he would go. It breaks my heart that he never went to a concert. We live in an area of the nation that does not get much action where music is concerned. He enjoyed listening to Wiz Khalifa, Nas and his favorite musician was Kid Cudi. After he said that I booked the tickets.

I was nervous and excited as I waited to board the plane. I even had the song picked out that I would listen to as we took off – “Anywhere” off of the El Pintor album. We landed safely less than 3 hours later and my sister and brother-in-law picked me up. Before I knew it, we were in line. They had a promotion for people who owned a Samsung phone and luckily, my sister had one. We were able to go to the front of the line! It was awesome!

You see that Interpol poster behind us? My sister, the ultimate haggler, talked one of the employees into letting us have two of them! It was all meant to be!

The opening act, Rey Pila, was awesome. They are out of New Mexico and they rocked. The bass in the Ogden is so strong that it literally jars your insides. I was so pumped to see my favorite band! When Sam Fogarino, Daniel Kessler and Paul Banks took to the stage I was beside myself! They sounded exactly how I imagined – AWESOME! They played a lot of their new music along with my favorites off of their older albums. Paul Banks sounded incredible, Sam had so much energy on the drums and Daniel Kessler rocked the house on his guitar!

My sister and I had the best time at the concert and we also visited the record store next door. We had a ball. She found a vintage Pink Panther record and I found some flawless Dean Martin records among others.

The flight home was wonderful. I listened to my El Pintor album and looked out the window the whole way. The view was outstanding.

I would have never gone to the concert if it wasn’t for my son. He lost so much over his last years of life as he dealt with more pain. I knew that I needed to overcome my fear of flying and just do it. I had no idea, however, that Christian would pass away exactly a month later on October 27. Now, whenever I have memories of the concert, I will remember that I did it for him.

The night before Christian passed, he asked me about one of my albums by Paul Banks, Skyscraper. It was the last music Christian ever talked about with me and he loved so much different music. When we had to plan his funeral, I included the Madrid Song and On the Esplanade off of the Skyscraper album. Both songs are beautiful and I understand why Christian mentioned the album. I made a slideshow and used these two songs and it was absolutely beautiful.

Music is such a large part of our daily lives and it was everything to Christian. We had to stay home a lot and it helped to brighten many days. I am thankful to have come across such a wonderful band. Thank you Paul, Daniel and Sam for expressing yourselves in your music and enriching our lives.