Several things have happened over the past months that I have not addressed because they were too raw or too unbelievable. I wanted to think they were isolated incidents; or perhaps examples of extreme bad manners or lack of sensitivity or respect on the part of individuals. But they were not.
I have to face facts. Maggie is a problem to the system and the system does not mind letting me know that.
This was summed up best by an inelegant presentation I went to regarding transitioning care from the pediatric service to adult care. Obviously this is an issue that interests me as Maggie approaches her 18th birthday. The individual was speaking to a group of parents – and he KNEW he was speaking to a group of parents. As he started his presentation he spoke of the disjointed way transition issues are handled now and noted:
“It’s problematic because these children are living longer.”
My head snapped up. I had been looking at his handout and thought I heard him wrong. Another mom at the table quickly called him on the remark. She said, “it is NOT problematic, it is wonderful and amazing and you are talking about OUR children.” He was unfazed by the correction.
Bending as far as I can to give him the benefit of the doubt, I believe he was trying to say there is nothing formal in place because medical advances outpace the infrastructure and patients (like Maggie) survive today where they didn’t even 10 years ago. With that extremely generous interpretation I have to agree with him. But I also believe he spoke the truth. It is problematic for the system that these children survive and the fact that a representative would say that to a group of parent demonstrates the callousness of the system.
I spoke up from my end of the table because my daughter is the oldest and perhaps most complicated (or in the eyes of the system “most expensive and most problematic”). I told the group that I have witnessed the shift first hand. While doctors used to marvel at Maggie’s history and her charm and intelligence, I now get lectures about quality of life*, and not in a good way.
In denying to undertake a surgical procedure* that Maggie needs, the surgeon said to me,
“you didn’t expect her to live forever, did you?”
Well, no, I suppose I didn’t, but (demanding parent that I am) I do expect her to be given every chance to live as long as she can.
Maggie has become a burden to the very institution that saved her life over and over and over again. Medical technology and advance have been able to save the lives of these children, but cannot make them function as others do. Still, Maggie functions very well. She is living the life they saved. Instead of patting themselves on the back as they should, the system is turning its back on her. Talk about problematic.
To say this makes me sad is a wild understatement.
*The concept of “Quality of life” deserves it own post and not ALL doctors or institutions feel this way. My amazing pediatrician does not and arranged a second opinion. Maggie is having surgery next Friday. More about that to follow as well.