Sean’s doctor retired. That might not sound like a big deal but Sean is my 12-year-old with Duchenne Muscular Dystrophy. This was not his family doctor – this is the guy he sees for his DMD checkups and his (much hated) steroids.
Now I don’t know about any of you but when a family member has a debilitating and deadly disease I kind of come to rely on the doctor. I don’t mean rely on him as in cry on his shoulder or expect him to fix my son but you know, rely on him as someone sharing the burden a little bit.
I liked this guy. A lot. He seemed honest, reasonable and genuine. He was greatly skilled at communicating. Sean always felt comfortable and had a good laugh with the guy. He was open to questions anytime about anything – from skin conditions caused by steroids to the latest in research into treatment. On this front, he was connected worldwide. If we heard of news from anywhere in the world he could fill in the blanks on the latest clinical trials.
He was someone who knows the disease as well as we do. Someone who has spent decades watching boys with DMD come and (sadly) go. Someone we can call when we are having some of those issues that no one else ever even thinks about when it comes to life in a wheelchair and weakening muscles. Someone who actually empathized when we admitted that, at times, we probably overindulge the little dude a bit too much. Someone who, in fact, admitted he would do the same thing were it his grandson who had the disease.
Whether he knew it or not this guy was an anchor for a family in despair.
And now he’s gone.
No phone call. No letter. No email. No goodbye.
He was there and now he is not.
I am reminded of my favourite doctor/author/philosopher Gordon Livingston and his book Only Spring on mourning the loss of his 6-year-old son, Lucas, who died from leukemia. An oncologist who had worked with the family throughout the ordeal abandoned them at the end. He left town right at the excruciating part of the nightmare. After his son’s death, Dr. Livingston felt the need to write this oncologist a letter. He had this to say.
I wanted you to know that we believe that you and the rest of the oncology staff did everything you could to save Lucas. I also think that, for all your collective experience, the ordeal that a family of a dying child goes through is not fully understood, even by those like you who have seen it many times. I hope you will read the enclosed journal that I kept during Lucas’ illness. I send it to you unedited; I have not yet been able to read it and perhaps never shall. I think you might find something in it that will help you respond to the plight of other families who place their precious children in your care and then must cope with unimaginable disaster.
While I do not hold you responsible for what has happened to us, I think you will understand why I am sorry I ever met you.