A Tune in my Heart

After work today, I met my husband and son for dinner at our favorite Mexican restaurant.  I think we all have one of those.  Our favorite restaurant serves authentic cuisine and  warm corn chips.  Afterward, they were off to play poker and I reluctantly headed home.  Alone isn’t a bad thing, but coming home to a quiet, empty house is a painful reminder of the loss.  Over Christian’s life, the most time he ever spent away from me was during MDA summer camp which lasted for a week.  When you care for a child with special needs, you develop a deeper connection, especially when you physically care for them 24/7.  When Christian passed away I felt like I was thrown into an alternate universe.  After 16 months I have become used to the new normal, but I still have moments when the realization that Christian isn’t with us makes my world turn on it’s side for a bit.  Over time the dizzying effect doesn’t last as long but it will never be easy, just bearable.

Almost every time I have found myself alone in the house missing my boy, I turn on the music.  Christian had so much passion for music.  He enjoyed 90’s rap like NAS, current rap like Wiz Khalifa and Kid Cudi, and classics such as the Rolling Stones and Paul McCartney.  He talked me into buying several vinyls during the last year of his life.  He encouraged me to buy the vinyl even though I had the CD because the quality would be worth it.  Christian even talked me into buying music that he knew I enjoyed but he didn’t much care for either way.  He grew to enjoy a lot of my favorite alternative bands like Interpol and Bare Hands.

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One of my prettier vinyls by Blondefire

They say that it changes a person when someone you love dies.  That is an understatement.  I felt hollowed out for the longest time and had to rediscover who I was.  I was a caregiver for both boys for over 10 years.  It took me weeks, even months, to stop setting out two sets of pills at mealtime.  Not all of the changes have been negative.  I would never have believed it if someone told me I would gain anything from losing someone who was as much a part of me as Christian was.

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I took this photo at Crystal Lake last summer.

When I see a beautiful sunset, I see so much more than what I used to see.  I see something amazing and holy.  I feel a stirring inside of me that I have never felt.  I see and feel God when I see the rays shining through the clouds, the chickadee in the pine tree, the beautiful pattern on the carpet at work from the sun shining through the window or when I see the stars in the sky.  I feel a joy inside that I can’t explain when I look at things that to another person, may seem like nothing.  It makes me feel guilty at times.  How can I have moments of joy after losing my son and watching Andrew deal with the same complications as Christian did?

When we lean on the Lord, the amazing happens.  The journey of grief is far from easy but we do not have to endure it alone.  God heals us.  God loves us.

As I listened to a song by Deathcab for Cutie, which Christian also enjoyed, I heard guitar melodies I didn’t hear before.  Music touches me at a deeper level, bringing me to tears or making me want to get up and dance (listen to Stolen Dance by Milky Chance and you’ll know what I mean).  Just knowing Christian and caring for him has given me a deep appreciation for life.  I want to reach out and help those who have lost a loved one and I pray and I cry for them.  I will not waste my pain.  Instead I will find a way to help in a way that I know Christian would be proud of.  I hope my posts offer a bit of hope and remind you that you are never alone.

 

 

Blog mania

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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

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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.

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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.

What went right?

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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…

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

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

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My son, despite his pain today, smiled…

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Lessons from loss

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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.

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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.

IMG_0306And 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).

IMG_0489Thanks 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.

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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.

Skin cells

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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!).

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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.

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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!

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The early bird gets the worm

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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.

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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?

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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

Burned toast

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I am one of those people who cannot drive or walk while doing something else.  Like a dummy, I was walking down my basement stairs and looking at a calendar.  Next thing I knew, my feet slipped and I fell down a couple stairs and landed on the bottom.  I hurt a little so I took some ibuprofen and went to bed.  Everything was fine until a couple days later.  Searing pain up and down my left leg, swelling and twitching all over my leg.  This was almost a couple weeks ago and I am still in pain. Most of it is from the MD but just as equally to blame is my lack of self care.

This has been a real eye opener for me.  Honestly, it scared me into wondering how long I can continue taking care of the boys.  I want to last, I really do, and I most certainly will not at this pace.  It’s only a matter of time.

What to do.  What to do.  I am pretty sure the house will not be condemned if it is not spotless and we will always have clothes to wear if I get behind in the wash.

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Fear is what keeps me from letting things go and taking care of myself first – making sure I take time each day to work towards my goals and dreams.  We must have faith that so long as we do our very best, God will handle the rest.  Truth is, I am of no use to God or my loved ones if I am toast.

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In order to love others, we must be filled with God’s love.  In order to properly care for those we love, we must first take care of ourselves.  I must do it for God, myself, my loved ones and the world.  How much more beautiful would our world be if we would stop running ourselves ragged, pumped by our anxieties and fears?  Very beautiful indeed!

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A lesson in poetry

The road less traveled

The road less traveled

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveller, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I–
I took the one less traveled by,
And that has made all the difference

…Robert Frost

I was never very good at interpreting poetry in school but “The road less traveled” is one that I have been able to relate to a good portion of my life.  One that many of us have.  We face choices every single day and most of the time, not having the slightest idea what the outcome will be.  We try to see into the future as far as we can, thinking of every single way a situation can turn out.  We rely on our gut instinct, or pray about it, hoping it will all turn out okay.

I am often in this situation each day in dealing with the boys’ MD.  Whether the decision is big, such as whether a surgery will be worth the risk; or small, such as what to give the boys for dinner, we stand at the edge of the wood like Robert Frost did.  We have made good decisions, such as keeping the boys on a wholesome, mostly vegetarian diet to reduce inflammation; and we have made bad decisions, such as staying in a hotel room with unaccessible features that ended up causing prolonged back pain for Christian.  With every choice we all do our best and that is all that matters.  I firmly believe, and have experienced, that God helps us out of difficult situations that were the result of a bad choice because He knows that our choices are made out of love.  I also firmly believe that every choice we have made, good and bad, has brought the boys to where they are today – happy, healthy and full of vigor for life!

The path we are on is also the less traveled one.  We have made many choices that we knew would require more work but did it anyway because we wanted to do what was best for the boys.  I read a saying that basically said that when we make the hard decisions today, it will make for a better tomorrow.  This has been true in our case.  We opted for the boys to have spinal fusion to correct their scoliosis and as a result, they sit up better in their chairs and their lungs can fully expand.

Drew before his spinal fusion surgery at Shriners
Drew before his spinal fusion surgery at Shriners
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After spinal fusion

We will continue to face big and small decisions and an unknown future.  This can create a lot of fear and a good amount of uncertainty, but if we do the best we can with what we have today, it will all turn out just fine.  All I have to do is see one of the boys’ beautiful smiles to know this.