1000 Miracles

Two years ago today, we laid our son to rest.  We witnessed the love and support of many – our loving family, friends we hadn’t seen in years, and friends who traveled over mountain passes to say goodbye to our boy.  A bouquet of flowers sits on my kitchen table – an array of orange roses along with white, orange and purple flowers I cannot name.  When I awoke and walked into the dining room, the scent of the flowers made a picture of Christian’s room filled with flowers after the funeral flash into my mind.  I felt the hollowness and the ache of my boy being away from this earth.

theonething

I took on a challenge of sorts and decided to begin this last Thursday – the day our boy passed away.  I am writing down at least 10 things a day that I am thankful for along with reading and reflecting on a devotional by Ann Voskamp called One Thousand Gifts.  After 3 days, I have learned more than I have in months, maybe even years.

I learned why my mind darkened and my heart closed to God’s grace.

My husband and I went through some old photographs – pictures of my sons when they could walk and stand.  Swimming, vacations to Disneyworld and Las Vegas, horseback riding and spending time doing so many fun, simple things in Lewistown with my parents, sisters, brother-in-law and cousins.  Those were the days when my heart was full of light.  I felt, witnessed and lived God’s grace.

As the boys lost the ability to walk, brush their teeth or even feed themselves, my heart slowing darkened.  When I needed God’s grace the most I closed myself off from it.  I didn’t realize at the time why it became harder for me to notice the miracles I always noticed before Christian’s health really started to decline.

Yesterday, I read these verses:

“For that which is known about God is evident to them and made plain to their inner consciousness…For ever since the creation of the world His invisible nature and attributes, that is, His eternal power and divinity, have been made intelligible and clearly discernible in and through the things that have been made.  So men are without excuse…they did not honor and glorify Him as God or give Him thanks…and their senseless minds were darkened.” -Romans 1:19-21

My heart began to hollow out when I stopped expressing my thankfulness to God for His gifts big and small.  He gave us so much to praise Him for and continues to each and every day.  When we notice and confess the goodness He so readily gives to us, our eyes open to His divinity which surrounds us all of the time.  I know now why I began to see an extra layer to life after Christian passed away.  I began to notice things that made my heart want to burst – colors in the sky I hadn’t noticed before, sunlight on a sparrow’s face as he enjoyed seeds from my feeder, the sounds of the wind blowing autumn leaves still attached to a cottonwood.

I went on a walk yesterday and noticed things I had not noticed weeks ago.  I am sure I looked funny because I stared in amazement at the Missouri River and the way the moving lines in the water reminded me of an orchestra, the golden leaves gently fluttering on the trees, and dogs with happy faces running in the dog park.

The more thankful I become, the more I see, feel and live God’s grace.

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.