As I was completing the video for this article, I stumbled across an article that had the title of my most favourite quote ever. It is from Joni Eareckson Tada. Click here to see the article titled with her quote "GOD IF I CAN'T DIE, TEACH ME HOW TO LIVE." The perfect quote to start off this article on a very controversial and intense subject. A prayer Joni uttered when she was deeply struggling with coming to terms with her newly acquired spinal cord injury from a diving accident that left her paralyzed from below the shoulders down. Click here to read an interview where she addresses pain and suffering.
From Loss To Hope...
Okay, first of all I encourage you to watch this very moving video, before I share the one that prompted this blog article and then my response video way down below.
Click the Title below the image of these beautiful girls to see it:
|The Kemp girls, watch their video. Photo from www.fightSMA.orgOne SMA Family’s Story: From Loss to Hope|
That God Himself, is the only One who knows when and how we are to leave these physical bodies. We do not have the "right" to kill our selves, with assistance or not. Yes, many think we do. There was a time in my second decade of life where I was so down, I contemplated suicide. But thankfully, I was too terrified of dying then because I didn't know what would happen. It was then that I faced a twenty year death sentence. If you have followed this blog, you will know that around seven or so, a Doctor told my Mom in front of me, that I had Muscular Dystrophy and would be dead at twenty. (Needless to say, that is a topic for another day. )
Before I realized that her views are contrary to mine. I thought it was really neat that she also has spinal muscular atrophy, the same diagnosis as myself. I don't get to meet too many people with SMA in our home town. (my first diagnosis I had was wrong). Based on her description and details about her life thus far, it would seem that she has type 2 SMA. I have type 3 SMA. My dear nephew Kyle, who had type 1 (infantile SMA) and after eleven days, went right into the Arms of Jesus. Life expectancy predictions, is something I learned the hard way, to not live by. Yes, it can offer an average range. But ultimately it is in God's hands and many, including myself, lived past the prognosis given at diagnosis. As well, we may have an idea of may happen to our bodies as the motor neurone deteriorate based on the history of many who have come before us. Yes, everyone I have met with my type, have all been far different in severity than myself. Such as the fact that I stopped walking by age 14 and our friend in Iran, is in his thirties and he can still walk and work full time. Another fellow we met in Peru, can stand up with help....see what I mean.
I spent all day trying to find the right words to say and now the day is coming to an end and I am not done....so here is a video I made to supplement the point of this article and maybe tomorrow I will conclude with all the rest of the words. no words can express how sad this whole subject makes me....so for now I want to say this to anyone facing a life altering diagnosis.
Write Your Own Story
Like one specialist told me years ago when I was asking if I was to expect that one day I may need a respirator or GI tube for feeding, he told me to "Write your own story." Clearly, the range of severity at varying ages is not consistently the same.