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.
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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.
Dear Bob,
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.
Gordon
Shameful : (
One day I will learn to stop being so disappointed when people do something completely opposite of what I would have thought they’d do. But that time has not yet arrived.
That is very tough. I don’t have a child with disabilities, but I have an elderly mom quite dependent on me and when someone disappears from my support circle, however small it already is, I’d like to slam a fist thru the wall.
Yes it is very frustrating. I read the post about your Mom’s experience re-doing her license. Made me sad. That must be very difficult.
I am so sorry your son’s doctor left without a final word. That was a terrible way to exit. We absolutely do attach to doctors. They have no idea the emotion we invest in them. I pray your son was left in the care of a good colleague…or are you looking on your own for a new doc? Yes, people disappoint. We are human.
There is a replacement doctor we will see next week. People do disappoint that is for sure. I need to stop having expectations – you would think in a role such as his he’d have a little extra compassion.
You seem to do so
E of your best “expressing” when shooting from your heart. Sorry to hear about it all. The “good” and bad parts of it.
Ironically, one of the bad stories I heard about socialized medicine is that the medical practice doesn’t really have residual value. Doctors just close the doors one day. This sounds like what happened.
My thoughts are with you finding another doctor that just maybe, will actually be even better for Sean!
A new doctor will replace him so we’ll see. You are right, maybe it will all be for the best. And I definitely think this would not happen were we paying out of pocket for medical care. Money buys SO much – especially when it comes to health. Even right here in good old Canada.
That’s really tough to go through. With physician groups sometimes they don’t let leaving doctors say goodbye because they don’t want to give them a chance to invite the patient to follow them to their new practice. But since your son’s doctor was retiring, it’s inexcusable that he wouldn’t have sent some kind of goodbye letter – or at least hung a generic one in the office.
Did they even transition your son’s care to another physician? In many states they are required by law to do so. Somehow it seems even worse that he was such a great doctor up until now.
We live in Canada and a new doctor has taken over at the children’s rehab hospital where he is treated. We have heard great things about this new doctor so we’re looking forward and hoping for the best. But it really was disappointing to not be able to say good-bye and good luck to the other doctor. Such is life I suppose. Thanks for the comment and the empathy Cindy.