Today we remembered some of our favorite memories with Mitch while making new ones. Although my heart yearns to reach back in time and hold my son, I am so grateful for today. I have today ... and that's awesome.
With all that I am, I love my family.
Tonight Natalie and I listened to a woman perform a song she wrote in memory of Mitch. It was a beautiful, complex and passionate piece of music. I had never met her before and she wrote me a private message just yesterday to tell me about her performance tonight. I am grateful that she did.
It is my nature to be deeply moved by music; music (at least to me) is a language of the soul. I have heard other songs written in honor of Mitch, each beautiful and touching, but this one was different. This song moved me deeper than deep and I felt a whisper of my son. Afterward, I asked her if I could arrange to record it professionally. I truly hope to.
She has a gift of the soul and it touched mine. Thank you Erin Wood. You have blessed our life with your beautiful talent.
http://instagram.com/p/tb2OpTS1ZU/
Today is the first World Duchenne Awareness Day, sponsored by PPMD.
Duchenne Muscular Dystrophy (DMD) is a muscle wasting disease - muscle tissue is unable to repair itself and children get weaker and weaker until they die. They don't survive this disease - not one escapes it. Not a single one.
Our son, Mitchell, passed away from heart failure because DMD destroyed that vital muscle much earlier than anticipated.
Though the root cause is different, which requires its own research and search for a cure, the surface DMD isn't too dissimilar from ALS - inasmuch as those who have it lose their ability to walk, use their arms, swallow, breathe and eventually their hearts give out. DMD needs as much attention as ALS - and I hope to help PPMD elevate awareness of DMD and its catastrophic outcomes.
I have a particular love for this organization for many reasons – one of which, they tried valiantly to save my little boy. Secondly, they fight to save every child afflicted with Duchenne Muscular Dystrophy (DMD). Thirdly, this organization is filled with love, compassion, drive and experience. Fourthly, they are getting it done – but they can’t do it alone.
In memory of my son, and other sons affected by DMD, please visit:
http://www.parentprojectmd.org/site/PageServer?pagename=Connect_wdad
In my garage hang 5 shovels that were used, as a matter of ceremony, to bury my dear son. Every day I come home I see them. I can’t NOT see them. These shovels are now symbols of what matters most and the price my family paid to be reminded of such. When I see them, suddenly material things are worthless to me; the pursuit of fame and attention, ring hollow and lame; and all the tinsel and chatter of the world lose their luster and powers of persuasion.
I just see 5 sacred symbols, still bearing dirt from the burial site, and am reminded of one missing boy I would do anything to see and hold again.
I don’t keep these symbols visible to agitate already tender wounds nor do I use them to fixate on the pain of loss; the kitchen table with an empty chair does that well enough. Instead, these shovels keep me focused and clear-minded. They remind me of the realities of life and also point to my most treasured relationships. Each day I leave my garage remembering Mitch and I make a promise to do better than the day before – to make whatever time I have on this earth matter. When I return home I am reminded to talk a little softer, to listen more intently, and to love more visibly … for everything, and I mean everything ... is temporary.
I made this video just after Mitch passed away vimeo.com/61500841 wherein these shovels were shown.
These symbols keep me sober and sane. They remind me to never dig a pit for my neighbor or intentionally cause harm to others, but rather to take compassion and help dig others out of trouble and help where I can. They remind me that I, too, will one day be laid to rest and I will be held accountable for my choices … for the help or harm I caused others.
I hope to never hurt another but always help ... and if I'm lucky, to build a soul with heaven's help.
