My friend Elizabeth received a comment on her wonderful blog, a moon, worn as it had been a shell. The comment was from a fourth year medical student who reached out to Elizabeth as the parent of a child with disabilities or special health care needs. The doctor wanted to know what parents want/need from their doctor and how s/he can provide that to parents and children s/he will meet in practice. Elizabeth called for responses. I gave one and if you feel the need, you should too. You can either respond at her specific post. (Just tell her you came from me) or respond here and I will forward it.
This was my response
Well, well well, kind Doctor. I applaud your willingness to bravely go where few doctors have gone before. It's a little place we like to call reality. Sorry for the snark, I do applaud you. Really I do. I want doctors who listen and get the fact that when I'm in his/her office with my severely disabled daughter for 25 minutes they do not understand my life or hers. They don't have to find a parking space that can accommodate her wheelchair, find space in a crowded elevator and find an outlet in the waiting room to plug in her suction machine. They don't know that I go home and lift her 80 lbs 20 times a day, change 10 diapers, catheterize and tube feed her and then have to do it all again the next day. They don't know about fighting insurance companies, schools, other services and the time and energy all of it takes. They don't know that I would do 100 times more than this if I were physically able because she is my child and even though it's a ton of work I should not have to justify her existence to anyone. at all. Ever. And especially not doctors. I want doctors to understand that saving a life means saving a LIFE -whatever that life is. I want them to read Elizabeth's blog over and over again until they get it as you seem to have. I want them to stand and cheer for my daughters amazing life, her amazing achievements, her amazing spirit without prompting. I want her to be valued as a human being. I want her to be judged by her character, and not by her disabilities. I want them to know we are all doing the absolute best we can in a very difficult situation and we do it proudly, even if a bit wearily. I want them all to want to reach out as you have. COngratulaitons. You will make an excellent doctor.