My son

DSCN0086It has been well over a year since my last post.  So much has changed, especially of late.  On October 27, in the early hours of the morning, my oldest son, Christian, went to heaven.  My heart broke into a million pieces that day.

These past weeks have been a blur.  I have felt more pain and emotion than I ever thought possible, sometimes in the span of 5 minutes. I have also felt parts of my soul stir that I didn’t even know existed.  For the first few days, I couldn’t even think straight enough to pray or read scripture.  Thankfully I have been able to focus more and I have made sure to keep God’s Word close by.  I have relied on God more heavily than I have ever before and prayed more than ever.

They say that when we lose someone we love, we are never the same.  We have to adjust to a new normal.  I can honestly say I am not the same. I am broken, tired, confused, angry and lost.  On the other hand, I have felt love grow in my heart – love for Christian, God, my husband and my younger son, Andrew.  You see, Christian was more than a son.  He was my best friend (wow, I just cried for the first time in public).  He was also my rock, my inspiration.  He left me everything that was good about him – good and perfect.  He left me his courage, love, more love, his beautiful smile, his humor and his love of music.  I can hardly listen to a song without thinking of him.

The past year has been difficult but I am thankful for all of it – the constant caregiving, sore legs and feet from standing all day, the fear, aggravation.  It all made me a better person and taught me to enjoy the little, often overlooked things in life – a sparrow on the feeder, the full moon, a funny shaped cloud in the sky or sunlight on the wall.  Christian made me realize that I do not need material possessions to be happy and satisfied.  In Christian’s last year of his life, he only spent less than $100 on himself.  He enjoyed buying gifts for others and watching their expressions when they opened them.  Christian was in a lot of pain the last year and a half of his life and wasn’t able to go out of the house much.  As a result, he read books on his iPhone, played video games (Metroid and racing games were his favorites), listened to some good music and watched movies.  Tom Cruise was his favorite actor and he watched Live, Die, Repeat the weekend before he passed.  His love of NASCAR inspired me to love it too.  I so wanted his favorite driver, Jeff Gordon, to win the Chase but instead I bawled as he duked it out with my driver, Brad Keslowski.  What a mess.

I know that eventually, I will cross the stormy sea of grief and I will surely lean into the storm so I can keep moving ahead.  God will be with me every step of the way.  As I heal, I will be inspired by Christian.  He will always be with me until I see him again.  He is inspiring me to keep listening to music, especially vinyl, start drawing and painting and play the piano again.  He inspires me to continue taking care of myself and my husband and son.  He inspires me to help others and bless others, just as he did every single day of his life.  Not a person came away from Christian without being moved my his love, grace and smile.  I will love him for all time.  I will be posting on my blog more and I hope I will inspire you and move you.  I love you and thank you for reading and I hope a part of Christian will also be with you.

 

 

Skin cells

th

Today I started writing in a brand new journal.  Even though I had a few pages left on my previous journal, I just had to start fresh in my new one.  I am certain that I am not the only one who is trying to figure out what my new year’s resolutions will be.  I want to call them goals instead.  When I think of resolutions, I think of someone wanting to lose weight, quit smoking or give up drinking coffee (over my dead body – hah!).

th-2

I read an entry in my devotional, Faith in the Valley by Iyanla Vanzant, and it resonated with me.  She said that our skin cells, our hair and other parts of our body are not the same parts that we had a week ago, a month ago or a year ago.  Without our intervention, our physical bodies are ever-changing, not always the way we want them to either.  (I find more and more gray hairs every week.)  Iyanla said that one thing that does not change on it’s own is our mind.  Do we have the same attitude and do we have the same thoughts that we had years ago and have they held us back from the life we truly deserve to live?  In my case the answer is yes.  What if we decide to be more of who we are, take better care of ourselves, love ourselves and others, and express more kindness and gratitude instead?  Once we do these things, wouldn’t that make it easier to lose weight or eat healthier?  Maybe it’s better to start within.

th-3

Today the sun was shining and I felt blessed to have a day with my family.  What are my hopes for 2014?  For my oldest son to be in less pain from his MD, that perhaps we will find good help with my sons and that we would love each other just a little more every day.  I hope to post more in my blog, read more books, do more crossword puzzles and listen to more great music on my new turntable.  I wish you all the very best life can offer in 2014!

th-4

Keep the Picture Close

th

On October 21, I was blessed to see my favorite band, Two Door Cinema Club, in concert with my sister in Denver!  My husband surprised me with tickets last June.  Being a full time caregiver, my going out consists of books and coffee at my favorite coffee house, errands or some occasional shopping.  It had been years since I was able to get away by myself – for 4 nights!  I rented a car, a Nissan Sentra, plugged in my Two Door Cinema Club playlist and away I went!  It took me a couple of hours to relax and get used to not seeing anyone in the back seat.  I rarely go anywhere in a vehicle by myself so this was a new thing for me!  It was about the time I reached the wind farm by Judith Gap that it started to sink in that I was on a trip by myself!  Yes!

IMG_0960

Everything went smoothly until I missed the turnoff for Billings by Lavina.  I ended up close to Roundup so I was about 45 minutes out of the way.  I eventually made it to Billings, passed the ramp for I-90 only once and it was interstate all the way to my sister’s house.  I didn’t leave home until 2:00 so it was getting dark by the time I saw Billings in my rearview.  I continued to enjoy my tunes and had to turn them up louder once I reached I-25.  This portion of I-25 is straight and I was beginning to feel drowsy.  After almost hitting a huge porcupine and seeing only 4 deer along the entire drive, I made it to Douglas.

My sister, Sherry, and I had Sunday to relax before our big day in Denver.  She is a volunteer firefighter so she showed me around the station.  This gave me a visual of what she deals with and I really admire her and her husband, Pat, for what they do.  I had the privilege of meeting Sherry’s good friend, J.J., and her two wonderful sons.  I visited with my niece and nephew and briefly saw my brother-in-law between his workdays.  I went to bed that night very relaxed and thankful for family and new friends.

My niece and nephew, Alex & Jaryn
My niece and nephew, Alex & Jaryn
J.J. and her oldest son, Sill
J.J. and her oldest son, Sill

We left for Denver early and arrived in Fort Collins in time for lunch.  We ate at Mad Greens which was delicious.  It was located close to the university and the trees were golden with the light of autumn.  Once we got back onto the interstate, traffic started to become heavier and more lanes were appearing.  I am a Montana girl not used to city driving, so I had to keep telling myself to chill out.  We used Siri on my iPhone as we started to approach Denver.  My stomach started doing flip flops when downtown Denver came into view.  Next thing I knew, I could see Coors Field and we were approaching Colfax Avenue, which is where our hotel and the Ogden Theatre is located.  It went smoothly except for the old woman who drove her wheelchair into the middle of the intersection I was approaching and the red light I had to run because I didn’t even know it was there!  By the time we reached our hotel, I was nauseated, relieved and excited.  I kept telling myself, this is it!  I am actually going to see my favorite band tonight!

IMG_0986

We had plenty of time to walk down to a record store right next to the Ogden Theatre and grab a bite to eat at an Irish eatery.  We went back to the hotel and I could hardly sit still for all of the excitement.  We left early and there was already a line.  Most of the people in line had big X’s on their hands for under 21 and my sister and I were one of the few with over 21 bracelets on.

Me and Sherry
Me and Sherry

At one point while we were standing in line, we saw two guys run by that looked like they were straight out of the 70’s.  We laughed a little and continued waiting for the doors to open.  We were fairly close to the front of the line so we were able to stand in the front section.  We eagerly waited for things to start and I was surprised at how close we were to the stage.  I could hear a lot of excitement building for one of the opening acts, St. Lucia, who I had never heard before.

Peace
Peace

It was 8:00 and the opening act came out!  I looked at the lead singer and lead guitarist and my jaw dropped!  They were the two guys who ran by us earlier.  Come to find out, they were straight out of England – Peace was the name of their band.  They were very good.  We laughed at ourselves for not knowing who they were.  As St. Lucia’s turn was approaching, I could feel the energy in the crowd building.  Sherry and I had to hold our stance and keep our place in the front section.  The Ogden is smaller so it wasn’t as bad as it could have been.  Only one guy tried to cut in front of us and Sherry pretty much told him where to go.  Not many will press their luck with her – she is tough as nails.

St. Lucia
St. Lucia

I am surprised to this day how much I remember about St. Lucia – their enthusiasm, energy, the music and more.  As I listen to Elevate at this moment, I feel like I am there.  Everyone of them looked so happy and full of life.  It was impossible to stand still as I watched the beautiful woman in front of me play the keyboards, shake the tambourine and jam out.  Once they were finished, the drummer threw out his drumsticks.  Some girls next to us were fighting over one and Sherry took her chance.  They all knew better than to try grabbing it back!  I am happy to say that it is safely sitting on my piano as I write this.

Alex Trimble of Two Door Cinema Club
Alex Trimble of Two Door Cinema Club

The set up for Two Door Cinema Club took the longest.  I could hardly contain myself.  The girls in front of us left to meet St. Lucia and next thing I knew, Sherry pushed me up into the spot they were in.  I was right up front!!!  The lights went out, fog began to rise and I could see them entering the stage.  My eyes started to water!  Next thing I knew, Alex Trimble was up there and the bassist, Kevin Baird, was right in front of us!  I could feel the music in every cell of my body and as I listened to the songs that were so familiar to me, I was amazed to see it all unfolding in front of me.  The music was flawless and I couldn’t stand still.  Sherry had to take most of the pictures because I couldn’t stop dancing!

IMG_1026
Sam Halliday played on the opposite side of the stage. He looked like he was having a blast!

Once it was over, Sherry and I could feel our age.  We were sore and tired.  That night I awoke around 3:00 and I still had adrenaline. It took me over an hour to go back to sleep.

We enjoyed the rest of our time in Denver at a cute consignment shop on Colfax and a small coffee house across the street.  The drive back to Wyoming was relaxing and the weather was beautiful.

The morning I left was so hard, as I knew it would be.  I cried in private as I packed and didn’t waste too much time leaving since I had a 9 hour drive ahead of me.  I kept myself together until I hugged my niece and nephew again.  I bawled as I said goodbye and Alex, my niece, said they were tears of joy.  I look back on it today and realize that she was right.  They were tears of joy for an experience I will remember for the rest of my life – the concert, the time with my sister and meeting new friends.  I took several pictures and will keep them close, saving them until I need them most.  I may not be able to do something like this again for some time.  My sons’ disease is progressive and I find them needing more and more help.  My husband is the greatest guy on the planet for taking such good care of them while I was away.  I may have been annoying for a while after I returned, showing off my photos and talking about the concert, but it’s only because I have given so much up since I left my career in 2005.  This more than made up for it and I will always be thankful!

Photo taken by St. Lucia
Photo taken by St. Lucia

Take the deep end

Image

Remember when you first learned how to swim?  Most of us walked into the shallow end and gradually made our way into deeper waters.  This works just fine when we are learning how to swim but I have found in life that taking the deeper end is better.  One of my favorite bands, Two Door Cinema Club, has a song called Beacon.  A line from that song resonated with me and it has stuck ever since I first heard it:

Take the deep end, swim till you can’t stand

cuz it will make a difference in the end.

After finding out that my two sons have Duchenne Muscular Dystrophy, I made a decision to help them grow up as normal as possible.  I kept them in school until 10th and 11th grade and they went to regular class.  Unfortunately, I had to withdraw them from school for health reasons and help them earn their G.E.D.s.  They participated in field trips, had friends over to play, went swimming and even rode horses.  They did homework, played clarinets in band and were like any other teenager despite their physical limitations.  It may have been easier to throw my hands into the air and put them into special education, but I knew that would not be the best in the long run.

20131011-180519.jpg

I still run into situations almost everyday when I have to remind myself to take the deep end.  There are many evenings when I do not feel like cooking but I know that giving them convenient junk will only accelerate their disease.  I was not the “cool” mom who let her kids drink soda and eat tons of sugar.  I knew early on that it would only make their futures worse.  Yesterday morning, I did not want to clean my house.  I did it anyway because doing just one thing can make the world a better place – whether it’s something big like helping a disabled child through school or something small like picking an object off of the floor for someone.  I was floored when my youngest son, Andrew, told me that he would drop a pencil onto the floor only for another kid to just look at it and walk away.  We need to teach each other to help and to care.  We need to take the deep end because it will make a difference in the end.

th

The Promise of Autumn

Image

Fall is my favorite time of the year.  My oldest son loves summer because he hurts less when he is warm.  My husband loves warmer weather so he can take his sports car or motorcycle out.  When I was young I enjoyed summer because I didn’t have to go to school, I could go swimming and stay up late.  

As I became older, I started to notice things about autumn that I enjoyed.  I noticed how the sun would shine into the room at a slant and how the sky seemed bluer.  When the sun rises, the leaves look like gold as they flutter in the morning breeze.  The sound of leaves rolling down the sidewalk or rustling in the trees gives me a sense of peace.  I know they will soon fall and the trees will once again be naked, so I enjoy them while they hang on.  

Image

I started to compose a poem in my head while I was helping my son earlier:

Leaves blowing in the autumn breeze

as the curtains gently dance.

Sunshine in my kitchen

gives life to figurines on the sill.

The peace mimics a trance

and my soul feels at ease.

Image

Soon, the typical Montana winter will arrive.  Until then, I will keep the windows open when I can and enjoy the beautiful colors.  The leaves turn beautiful to reassure us that they will be back in the spring.  The starlings gather and dance in the sky to entertain us before they return next year.  I have even heard some house finches squeezing in a little more singing and a sparrow courting a female one last time.  I will keep feeding them all winter as I look forward to new life in the spring.

Crocodile Rock

Image

When my oldest son, Christian, was in grade school, we went to my mother’s house for a visit.  Mom kept her old records down in the basement for years and Christian discovered them.  He asked me if they were giant CD’s.  We had a good laugh.  We explained to him about record players and how they work.  I think most of it went in one ear and out the other.  Those of us who grew up in the 70’s and 80’s probably owned a record player and a few records too.  I still have a couple of my childhood favorites:  Sesame Street Christmas and a Walt Disney record.  I played them countless times and knew every single word.  I was fortunate to be able to listen to most of my parent’s records also.  A favorite of mine was Crocodile Rock by Elton John.  I also enjoyed listening to my dad’s CCR record.  To this day, I know every word of Crocodile Rock.  The coolest record was a red record by Elvis Presley.  I think it was the soundtrack to the movie Girl Happy.  Neil Sedaka was another of my favorites.  Like many of you, I have cherished music throughout my life and I am excited to write more blog posts about it.

Image

I am thankful that Christian also enjoys music even though some of it sounds like “jungle music”.  I have kept an open mind and put some of his songs on my iPod – like music by Wiz Khalifa, Flo Rida, Mike Posner and other songs I would have never heard of if it wasn’t for him.  Music is a way for all of us to connect, even if we are generations apart.  What kind of music did you enjoy when you were young?

Apple Dust

th

One of the top new stories in the tech world lately has been the launch of the iPhone 5c and 5s.  Many of us have updated our mobile devices to iOS 7.  I haven’t upgraded my phone yet because with the update I feel like I already own a new one.  I was excited for the update and I enjoyed exploring my devices afterwards.  Several years ago, I would have never thought I would even care.  I used to make fun of the iPhone commercials that said “If you don’t have an iPhone, you don’t have an iPhone”.  I responded by saying yep, I sure don’t and I never will.  Now here I am typing on a MacBook Air with an iPhone beside me and an iPad at home.  Oh brother.  I used to have a simple cell phone, no smart plan, and a desktop.  You may be wondering why I am bringing this up.

th

We hear so many negative things about technology:  how it affects our attention span, takes all of our time, causes stress (you should have seen me when I first set up my Mac) and is costly of course.  I want to write about the good things it has done for me.

First of all, being a full time caregiver of two adult sons, I am home a lot.  I have been out of the career field for some time and do not have much of a social life.  I used to think Facebook was stupid and at certain moments I still do (some things people share are ridiculous), but it keeps me in touch with what everyone is doing and sadly is the only way I can get a hold of some people.  Same thing with Twitter.  I used to ask myself why I would want to know what people are doing every minute of the day.  I found that it keeps me up to speed on the news and on the things I am interested in and passionate about.  Secondly, it is difficult for the boys and I to go out and buy everything we need so I order an absolute ton of stuff from Amazon.  Lastly, technology brought me to blogging.  My goal which I am sharing with you is that I want to blog more frequently, even short bursts, hopefully daily.  I have been able to read other people’s blogs, which has inspired me to reach for my dreams even if they are far off for now.  We do the best we can with what we have and yes, as my husband has been accusing me of, I have snorted the Apple dust.

The early bird gets the worm

th

How many parts of our days are really quiet? No TV, loud music, phones ringing or people talking. Unless you live in a remote part of the countryside or another planet, there is not much silence in our daily lives.

th

Silence. Some of us long for it, and some of us fear it (my thoughts can drive me nuts at times). I long for it and I have for years, especially as my sons’ care has become more demanding. I use the hours of the early morning to sit in silence while I sip my fresh ground coffee. I try to make a conscious connection with God as I pray and read His word. In the summer, it’s nice to feel the cool air on my skin before the sun comes up and heats it all up. I used to hear a bird, a killdeer, every morning at 4:30. My favorite birds to hear in the wee hours of the morning are mourning doves.

Here’s the problem – the snooze bar. The snooze bar has become my enemy and I have let it rob me of these precious, early morning moments, and it often ruins my morning. As a caregiver, I need to have something to give to my sons when I get them up and without my fill of early morning time with God, I end up beginning the day on an empty tank. Admittedly, I hit the snooze bar at least once during the night (my sons have to be turned and repositioned) and numerous times in the morning. The sleep I end up getting is worthless because I am waking up every 7 to 9 minutes. Here’s the kicker – my alarm clock is not next to my bed. That’s right, I have to hop out of bed to hit snooze and that doesn’t stop me. Why are habits so ruthless?

th

Life is precious – every moment, every hug and every smile from my loved ones. I don’t want to waste another minute of it because I was a grumpy butt from not taking silent time before sunrise. I know it sounds crazy but it really does work. My days are much smoother and I am not as tired when I am up before the birds. We should all have a little time to ourselves in the morning – to reflect, pray, slowly sip some coffee, take a longer shower, whatever. I will conclude with a short, but powerful quote.

The morning breeze has secrets to tell you, don’t go back to sleep.
~ Rumi

Never stop reaching for the sky!

Never stop reaching for the sky!

I’m baaack! I must admit, I was pretty shocked when I noticed how long it had been since I lasted posted. I convinced myself that I did not have time and did not need to write in my blog. It is amazing how if we tell ourselves something enough times, we will really start to believe it. A phrase I have seen many times states that “we become what we think about”. Our attitude really does make our world. It can make or break our day.

th

I have recently joined the gym after wanting to go back for several years. It was humbling after my first workout. I ended up very sore and tired. With anything new, it’s easy to fall prey to fearful thoughts. I payed for an entire year up front and I have asked myself several times if that was a mistake. I have been in the same routine for so long that it has become a rut. I spent so many days at a time at home caregiving, cleaning etc. that when I actually did get out, I was a little shocked.

The truth is, I need the exercise, we all do. It keeps us strong and less prone to injury and combats depression and anxiety. I know it will improve my life so long as I keep on keeping on! As I continue on this journey, doors will open, opportunities will present themselves and the walls I have built up will begin to fall.

th

The best thing we can do

20130125-051754.jpg

We cannot give away what we have not first received. We must be gentle and kind to ourselves before we can be with others. We have to be patient with ourselves and our own progress before we can be patient and understanding with everyone else. We must give our all to God and to ourselves before we can give our all to everything we set out to do. Lets make sure we do at least one thing everyday that we can feel really good about, whether its writing a letter, going to a coffee shop to read and relax, or having our nails or hair done.

The truth is, before we can do anything worthwhile, we must first love ourselves, hug ourselves; make peace a part of our everyday lives. Let’s stop feeling like we are doing something wrong or that there is something wrong with us because no matter what we do or how hard we try, someone will always be unhappy.