15 Rules for Doctors

Rules for doctors: (deep breath)

#1: Look in my eyes when you speak to me.

#2: Do not make me ask three  times before you repeat what you told your nurse in a quiet voice concerning my daughter.

#3: Never tell me to “relax.”

#4: Never make your patients wish they had not come to see you.

#5: Give hope, even a little bit. Don’t let people leave your office without some small measure of hope!

#6: Never say a child will never do something. For all your years of schooling, that is the stupidest thing I’ve ever heard.

#7: “Faith” is not “denial.” Don’t mistake them. Don’t feel the need to shove hard truths at  a patient because you believe  I  don’t know the severity of my child’s case. I’m hopeful not stupid, you idiot.  

#8: Don’t chuckle like we’re friends because I’ve started to cry.

#9: If you don’t have a disabled child waiting for you at home, then you don’t know. So don’t say you do.

#10: Don’t tell me my child won’t cry during  a proceedure  and then when she does cry, tell me, “It doesn’t really hurt.”

#11: Pretend for a minute that I  didn’t sit next to you in medical school for all those years then try  repeating what you’ve said in a way that an educated,  intelligent person can understand. (And I’m both those things so don’t treat me differently.)

#12: Just sign the  &#%@! form I hand you; don’t tell me it’s not worth your time. I didn’t ask you how expensive it was. I just saw it as a small hope and you refused because we have “plenty of time” to try the stuff that’s not working.    

#13: Don’t be patronizing!!!!  

#14: Do not  treat a child like their worth is the sum of their workable body parts.  And that their worth of your time is the sum of their fixable body parts (of which you’ve determined my daughter has little).

#15: Don’t make your patients work so hard at forgiveness and understanding; try a little  education in the area of  grief and  bedside manner.

(and exhale)

I saw two  callus doctors today, and my experience was not that great. One largely ignored me while smiling. The other thought I was in denial of the severity of my daughter’s condition and took the opportunity to tell me that  Lali has severe joint contractions and muscle loss that will NEVER go away, and I needed to deal with that fact instead of searching for new splints or braces. They wouldn’t sign my Dynasplint form. They told me to have our OT make the static splints more harshly to where they caused “red marks on the baby” and that would work just as well. (I’m not even joking.) They would approve the Dynasplint system “later” when she was “older.” They said they didn’t want to put  stress on the growth plates. I asked  what exactly the growth plates did that prolonged stretching  would hurt, and I was told that “a growth plate is a plate where baby grows.” (Duh.) So, trying again, I asked if  that meant that I  should stop stretching her. “Oh no, stretching is VERY important. You must continue  doing it!”  So why can’t a splint stretch her? “Because a splint is not the same as mommy, and the splint wouldn’t stop stretching when she cried.” BUT WOULDN’T I BE ABLE TO TAKE THEM OFF IF SHE CRIED??? WHERE DO YOU THINK I’LL RUN OFF TO WHILE SHE’S WEARING THESE???

Then they told me that the stretches were not “that bad” so I should do them myself.   Not that bad, huh? How many times in your life have you stretched your child? Yeah I thought so. So shut up!

The dumb thing is that they may be right! They may have the answers. Their plan  may be best for Laelia. But I don’t think so. Why?  Because I don’t trust them.  And that’s scary. They have set themselves up as opposition and I have too much of that already! For example, to get anything done, I have to go through my insurance (opposition), scheduling doctors (opposition), doctors themselves (opposition), the system (opposition)  and manufacturer’s costs  (opposition) only to get something that gets starred at by strangers (opposition) and is hard to use on  a small baby (opposition)! It’s no wonder  why parents of special needs children feel all alone and depressed in this epic battle for their child’s well being! Why add to that?!

I have learned something very important: Parents are the only ones who have their child’s best interests  in mind! Doctors do not have your child’s best interests in mind! They  have time issues, other patients, greed and  busyness to distract them. Plus, and this is important, THEY DON’T KNOW! They just don’t know! Kids like mine are always surprising these kinds of doctors who put all these heavy limits on them.

*sniff* Dr. M told me to “relax” not because I was angry or even speaking, but for coming in in the first place.

Proverbs 13:12 says, “Hope deferred makes the heart sick.” And my heart feels sick. I was hopeful that I could put these stretching splints on her (that my mommy intuition knows would work well for my daughter) and then I wouldnt’ have to hurt her every night. Imagine that! Just hanging out with my daughter!  

The one doctor actually scolded me for taking the advice of a sales person (said with disgust) instead of my own therapists. When I hadn’t even seen my therapists yet so they had no advice to give (besides what they always tell me: stretching=good), and I hadn’t really talked to a sales person, only gotten some brochures to look at and told how they worked. No one twisted my arm. Why do doctors treat people so badly? Why am I still crying?

Sunday I’m doing a lesson for the kids at church on forgiveness. So I’m making an active promise  to forgive these two ignorant doctors right now. Before this turns to bitterness.

4 Responses to “15 Rules for Doctors”

  1. Charilyn says:

    Personally, I think you should re-format the rules with enlarged fonts, get them printed on poster-sized paper (at least 20×30) and frame them. Wrap them with beautiful wrapping paper and deliver your gift to each doctor’s office you visit. Then deliver one to every medical school you can…..

  2. Kiersten says:

    The first time I read this, I was so angry. Then, I read to D and just started crying (but still ANGRY!!!!). These people have no idea what is like to be in your shoes, to see your baby look at you with tears in their eyes as you have to stretch them…….the amount of worry and fear we carry with us every single minute of every single day…… the part of our lives we now have to devote to phone calls, red tape, waiting rooms, frantically putting on splints.shoes.bars any anything else to help our children. I am sorry these two doctors were such idiots and I hope you can get that prescription. Those splints look AWESOME!!!!!

  3. Bethany says:

    Oh, Alexis… I’m so sorry. I won’t say the things I’m thinking about those doctors since you’re trying to forgive them and all, but man am I thinking them. On the subject of hope, though, just look through your pictures and videos of Laelia — she is able to do such amazing things, and her personality absolutely shines! You have one incredible little girl on your hands who is already rocking this life and will keep rocking it, no matter how dour those idiot doctors insist on being. :)

  4. Suzi Pitts says:

    Perhaps I can help. What area do you live in? I can get a Dynasplint Sales Consultant to call on your doctor. Marketing to Dr.s and PTs is what they do when they are not fitting patients. We would love to come alongside in whatever manner to get Laelia comfortable and realizing improved range of motion.
    Best,
    Suzi

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