August 2015 – The road less traveled

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!