Lest You Think I Am Always Brave

All your sweet comments and cheers warmed my heart, 
however, lest you think I am always brave and courageous,
I thought I would share a time that I didn’t “get it right”.

It happened very recently and is probably 
why I had the gumption to stand 
my ground yesterday. 

Actually, I have replayed the conversation I am about to share with you in my head so many times, each time kicking myself for standing with my mouth open in complete shock and not doing something – anything!   

Another reason I share is that perhaps it will encourage others to ‘prepare’ for times like this knowing that even when we think we have prepared, someone’s words can catch us so off guard that we are left with our mouth gaping in disbelief. 

Anyway, as always, this was our experience.  I know that it could have probably been handled several ways….none of which I did.  I was so shocked my mouth was left gaping open.  

Maybe some of you have some ideas for things you have done.  I welcome them.  

Being perfectly honest, it is painful to talk about 
because I failed miserably and am pretty embarrassed 
and ashamed that I didn’t handle it better.

So it went like this:

Miss Jubilee had an appointment for the clinic she is part of.  It was an intake appointment with a Physician’s Assistant.  I had never met this person which means she had never met any of us either.  

Face it, when you’re a mom of many with all kinds of 
special needs we have met literally dozens of doctors, 
surgeons, therapists, care coordinators, medical technicians, 
and general health care professionals.  


Our medical interactions and experiences have been overwhelmingly positive.  I was only anticipating more of the same…

Little did I know…

From the moment she entered the room, 
all I could think was “uh-oh”.

I will spare you the early dialog, but suffice it to say she was abrupt, borderline rude and not really pleasant {at all}.  

Then she began with Jubilee’s diagnosis.  I told her exactly what the genetic testing found…”Distal Deletion at…..”  

Without looking at either Jubilee or I she quipped, 
“Well I’m going to just put down ____  _____”.  
My eyes grew wide.  
I said, “Ummm, is that really necessary?”   
She didn’t look up but kept typing, “It’s for medical purposes 
so everyone knows what we’re talking about.”  
I persisted, “I didn’t think that term was even used anymore.”  

She said it was.  Well I hadn’t heard the term in a zillion years and especially in light of all the “political correctness” these days…besides when I had heard the term used a few years back it was definitely not in a nice way.   

Then she began to question exactly “WHY” our precious treasure {my words} had been abandoned.   She was blunt and intrusive.  I attempted to avoid her questions, but then it got even worse. 

She looked straight at Jubilee and said something about her physical appearance.  I will not put it in words because it would be on the web and I would never want my daughter to read it, have it repeated or hear it in any way.  

It was cruel.  

It was mean.  

It was uncalled for.  

It was inappropriate.  

It was horrible. 

I sat there with my mouth gaping.

I debated.   Should I say, 
“Would you please stop typing on your ipad 
and go get your supervisor right now?”  

I also debated saying loudly, 

“LEAVE THE ROOM NOW – 
YOU WILL NOT TALK TO MY DAUGHTER 
THAT WAY.”  

I am ashamed to say, I did not do anything.  I just sat there with my mouth gaping.  

Within a minute or two of this a Family Life advocate opened the door and walked in. {No doubt, God’s grace evidenced on my lack of knowing what to do.}   She was someone who Jubilee adores and has spent time with her on several occasions.  

The Family Life advocate was just “checking in” on Jubilee.  Jubilee lit up when she saw her.  I did manage to think enough to  ask this sweet Family Life advocate if there was a way I could contact her.  She went and got her card for me.  {She later said she wondered why I would want to contact her? Ha!}

The appointment ended without me confronting the PA.  

Was I chicken?  

Probably.   

Was I not sure what to say or do?  

Definitely.

Am I still in shock at what she had the audacity to say?

Totally. 

I got home and called the sweet Family Life advocate.  After explaining what happened she told me who to call to report her. The director of the entire agency called me.  

Of course he doesn’t know me, so I wondered if he would even believe me.  Well as it turns out, it actually doesn’t matter if he believed me or not because the Family Life advocate told me that the PA completely admitted saying everything she said.   

And here’s the kicker of all….

When the PA was told by the Agency Director that it wasn’t appropriate, do you know what she responded?

She answered, 


“But it was true.”


I’ve been left wondering how she sleeps at night…  
And how in the world she got hired to work with 
Special Needs kids every single day.  

Okay, friends…so there you have it…

the good, the bad and the really, sinful ugly. 

We have requested that we never have to deal with her again.

So what would you have done?

42 thoughts on “Lest You Think I Am Always Brave

  1. being a nurse with special needs children in a practice whose main focus are these medically complex, fragile children, I think you handled it well even though you feel you didn't. Sometimes its best to leave the situation and then talk it through with someone else and then talk to the supervisor. You were out of the heat of it and had time to cool off just a little. If you would have said something to this person do you think it would have done anything differently? I think it may have just escalated the problem. Hopefully, the director did something beside a hand slap and is rethinking this person's employment with this population. Children with special needs are difficult to navigate at times,but then again so are the typical children and adults we come in contact with each day. If only people would take the time to learn from the parents of these children, who are the experts for their child, then maybe they could come away a little smarter each time they interact with them! You are a wonderful advocate for your children but sometimes people are simply mean, rude, disrespectful etc and that may throw you off balance a little. It's okay!

    1. You are sweet, and I just have to say that I definitely wasn't mad when it all happened, so I didn't need to cool off. I am still aghast.

      To this day, I just feel sick to my stomach when I think about it. She must be a very hurting person to say the cruel things she said. I can't fathom how much yuk can come out of a person's mouth.

      Don't get me wrong though. I have certainly gotten really angry at some things people have said/done…this wasn't one of those times. I still just am in shock….weeks later.

  2. I find myself in that "shock" mode sometimes too when people are so surprisingly cruel and rude. I am so witty after the fact! I don't think saying anything would have helped in that moment bcs the kids would have witnessed the confrontation and clearly this person would NOT have backed down in front of you. She could have been meaner! I say it was dealt with well!
    NLT encouragement:
    Proverbs 13:3 Those who control their tongue will have a long life; opening your mouth can ruin everything.
    Proverbs 21:23 Watch your tongue and keep your mouth shut, and you will stay out of trouble.

  3. Honestly I would probably had the same reaction that you did. I am learning to stand up more, but I have a long ways to go. I'm running into Dr's not taking test results that are off seriously because they view as "not that big of a deal." Or wanting to repeat tests that have already been done because they don't like the place where the first one was done. It feels like they think we are wasting their time being there, and it's so frustrating. Just because my daughter isn't critically ill, thank you Lord, doesn't mean that her pain or uncomfortablness is any less important. I'm glad that you called and reported it and you won't have to deal with her again.

  4. She conducted herself in an unprofessional manner. She would likely not have spoken about or to someone who was not displaying a "disability" so rudely. By speaking in a derogatory manner about your child and in front of your child, she displayed a lack of respect or humanity to you and to your daughter. Even if the information she stated had been accurate, and it sounds like it's not, it's also all about how you say what you say, and treating others as you would like to be treated.

    1. I hadn't even put it in the terms of "unprofessional" but you are so right. A professional needs to consider what a patient "feels"like as they are talking….she didn't care…so sad. I couldn't imagine what it would be like to be her. Sad, yukky and mean-hearted. Such a sad way to live. I pray she comes to understand the love of a powerful and gracious God.

  5. Linny, My husband is faculty at a family physician residency program and gets calls often about inappropriate things that occasionally a young inexperienced and immature resident dr. will say to a patient. It is NOT taken lightly by him or the hospital human resources. BUT sometimes the resident Dr. will need to contact the family to talk about the incident with them. My husband has found that the "geek-scientist-almost autistic" personality is the one who most often makes these social rude blunders. I would ask the director to have the PA call you so that you can use it as a moment to give some helpful honest advice. Your words could be the start for a change in this person's un-empathetic behavior. Believe me, very similar situations happen at my husband's clinic. AND it is always followed up with a plan to help the caregiver become more compassionate.

    1. Although I think that is a good plan, this PA happened to be at least my age. Sad, but true. At this age, us silver-haired folks ought to have a bit of compassion {at a minimum}. I don't think talking to her would help. Her response was just that she didn't understand what was wrong, because it was true!

  6. Hind sight is 20/20, Linny! And, Proverbs tells us that trying to correct a fool gets us no where. Better to have just kept silent than to have engaged a fool. You did the right thing by calling those who have jurisdiction over her after the fact. God could have silenced your tongue and sent the Family Life friend in just when you needed!!

    1. I think your words are wise my friend. She is definitely a fool. The Lord definitely rescued me when the FL advocate arrived – and we had absolutely NO CLUE that she knew we were there!

  7. I recently had a similar experience in the ER in the middle of the night. I also did nothing at the time. I chose not to do anything because I would have cried and my child has a chronic illness and doesn't need to think he is dying or something. I didn't deal with it later either because at the time my son was very sick and I couldn't spare the emotion. I did make a special note of her name and can still address the issue because it does need to be addressed. I am quite overwhelmed with the need to educate those who work in this profession…it catches me off guard every single time. 🙁

  8. I just remembered an encounter I had the first time i went to the OB when I was pregnant with my first son. I had to see the PA for my first appt. She was not cold but also not warm. When she finished the exam she asked me a number of questions which included if I wanted to have the baby. I was floored and answered yes but was really shook up. I was there for my first appoinment not an abortion consult. The doctors I went to didn't even believe in that procedure or do them. I didn't say anything to her but wish I had. I had nightmares for a whole month until I went back to see the doctor. I was supposed to rotate through the two doctors and her for my appointments. I was brave enough, after the terrible month, to tell the doctor I would not see her again. He tried to convince to give her another chance and i told him what she had said. Come to find out I wasn't the only one who didn't like her. At my next appointment she was gone and a new PA was in the position.

  9. Whew. Well, we all know that hindsight is 20/20 and I know I am one of those people who can always come up with great things to say….about 20 minutes too late. Give yourself some grace about that. What is important is that, in the end, you were still advocating for your precious little lady Miss Jubilee, and you reported that PA! I am sorry for both you and Jubilee that the situation ever even occurred, though. How awful.

    1. Although it's true I did advocate for her in the end…and I don't think saying anything sooner would have changed anything…I have remained frustrated at how it all transpired. Thank you for your kind words.

  10. What an awful experience! Could you file a complaint about her with your state medical licensing board? She's probably making comments like this to multiple kids and parents, and maybe some of them don't know what to do about her.

    http://www.azmd.gov/Complaint/ComplaintOL.aspx

    I have received negative comments (never as bad as this), and I have often not reacted because I was so shocked. Thank you so much for sharing. It is hard when we feel we haven't protected our child as we should.

    1. I am going to go to the site tomorrow. Thank you so much for finding it. Since it has been reported, I'm guessing her supervisor would have record of it and maybe it would become a formal complaint in the data base. thank you!

  11. I can see myself having done the same thing as you. I can totally understand. And how awesome that you followed up later to make sure that this will never happen again. That PA has no business being there, or anywhere, for that matter. I am also a PA, and will say that she is an insult to the profession. May you next encounter with a PA be much, much better.

  12. I can tell you what I would like to think I would do in this situation, but…..I think I would Pretty much do the same thing Linny. Hard not to be shocked by mean spirited people who feel their position gives them the authority to treat others less than ok. Talking to the advocate and then talking to the head guru was powerful. It is so infuriating. oh Linny, I am so sorry that happened. UGH.! Your sweet Jubilee could run circles around her with the gifts of love and kindness she has for others

    1. My sweet Jubilee reads lips and fortunately the lady was looking down typing much of the time. But when she looked her in the eye and said the meanest thing ever….I am still in shock.

  13. I feel very sorry for that PA she didn't recognize an angel right in front of her face. Your little Jubilee is so precious and so unique and she shines even through pictures on the computer, I can't imagine how bright her light is in real life. She is a special, beautiful child "fearfully and wonderfully made." You are so blessed that God chose you for her and her for you. I am sorry for what happened and how you and she were treated.

    1. When I read your comment I 'awwww'd….thank you for being so sweet about our girl. She's so precious and everyone who knows her adores her. I guess that made it even hurt worse. How could anyone hurt such a treasure? It made me even more thankful a 1,000,000,000 times over that she is ours…and we're together forever.

  14. God bless you for your transparency! *hugs* I was in tears reading your post. After some contemplation, here's my answer.

    Although in the flesh I would be a shaking/crying/furious wreck~I would (only by God's grace) want to display His love for this woman to her. I would pray He would give me the right words/actions to portray that. I can't help but think of Jesus~when He was suffering the most, He forgave the ones who were inflicting the pain. This woman must be so broken…so in need of that kind of love and mercy.

    As much as my flesh would be indignant for my child, I would want to teach by example what I believe Christ would do in that situation according to 1 Peter 2:19-23:

    For this is commendable, if because of conscience toward God one endures grief, suffering wrongfully. For what credit is it if, when you are beaten for your faults, you take it patiently? But when you do good and suffer, if you take it patiently, this is commendable before God. For to this you were called, because Christ also suffered for us, leaving us an example, that you should follow His steps:

    “Who committed no sin,Nor was deceit found in His mouth” who, when He was reviled, did not revile in return; when He suffered, He did not threaten, but committed Himself to Him who judges righteously;

    This would be my desired reaction, but it would be up to me to allow the Holy Spirit to take over my flesh! Which I do struggle with.

    1. Thank you for the encouraging words and scriptures. I actually read these same verses yesterday {I think} and they stood out about this situation. You are so right. Bless you. xo

  15. In my work as a peer counselor for those who have suffered birth trauma that is most often caused by malpractice and utterly inhumane treatment and violation, I am often giving the advice to file a report. Put it in writing. Do more than just call the agency/hospital/clinic. A written report to the professional organization that oversees that employee really does need to be done, because it protects others in the future. A person can still forgive, set boundaries, etc., but a report still is very important to file formally. (Sadly, I have three moms injured by the same physician, and while "everyone" knows he is a brutal man, only one person has ever filed a formal report. It has gotten to the point where nurses are begging mothers injured by this man to file a formal report. But because the women are too often too traumatized, too afraid, or simply too overwhelmed by the process of filing a complaint, this doctor continues to injure women on a daily basis. I'm all for filing written complaints.)

    1. Linny:

      I could feel my hackles rising as I read you story. I am fortunate that I have not run into this kind of behavior with my special needs little one. I also know myself well enough that my momma bear mouth would have actively engaged. It just would have been too much to let go. Imperfect me.

      Lisa

  16. I remember years ago, trying to interact with a specialist who was 'treating' my son. I got a chilly stare and the nurse was asked to 'take the mother out of the room'. The mother! I thought this sort of attitude had changed by now.

  17. Don't blame yourself for not being able to respond how you would have wanted to. Sometimes things happen that totally render us speechless. Not sure how people make it in an industry (healthcare) that is suppose to show empathy and compassion. And you are correct, that phrase should never be used. How absolutely ridiculous when the correct words are right there. This person is very misguided and ignorant. God bless you for putting it out here so that others might be better prepared for the ignorance that they may happen upon. I had a situation with a resident. He was rude to my daughter and he was saying things that were rude. I could not say anything to him…I think he was just so rude it would not have mattered what I said. Thank the good Lord that he had a medical student with him….I was able to get her to get the physician. Let me tell you, this physician got an earful….not in front of my daughter though. After, I did tell my daughter that the resident was disrespectful and rude and should not be listened to. It is so hard…

  18. Linny, I am a Physician Assistant and on behalf of all of the PAs who truly care about their patients, I apologize. That anyone in the health care profession would speak in such a manner is incomprehensible to me. I am so sorry that this happened. All of our children are true gifts from the Father. All have immeasurable value.

  19. I'm shocked just from reading how Jubilee and you were treated, so I can't imagine that I would have known what to do if I had been sitting with you at the appointment. So sad that someone in her position does not know how to interact with children. I definitely would have done what you did after the appt and contacted someone to report what happened. I also would never let that person work with my child again. You did good – it is easy to beat ourselves up after the fact, but sometimes in the moment it is so shocking that yes, our mouths probably do just drop and we are stunned! You are an amazing advocate for your children!

  20. Sadly, I have been shocked at the verbal vomit of many people and have not responded how I would have scripted it. I simply cannot believe the words some people use.

    The first time I took my daughter to a family dentist in a new town we lived in, I sat in the chair first and explained my terrible gag reflex. He basically told me to "shut up." I held up my hand and said I was not going to let him touch me. For some reason I let my daughter get in the chair and she was very upset from the start. When he said, "Stop crying or I'll make your mother leave," I responded that we were both leaving. He was stunned. Well, so was I. I believe if she had been first that I would not have stood up to him.

    I often wish for a REWIND button in life when advocating for my daughter, but this was one moment I did not regret later.

  21. Hmm – I've been there. I have asked an intern to step outside the room. I said he was to never speak to me or my child like that again. I then turned to the nurse and had her call the attending physicians office and put in the file that that intern was to never again see us and to please put it in our electronic file the words he used and our request.

    Momma Bear strikes again.

  22. This makes my heart so sad. You know I have a special place for Jubilee in my heart. Just because she may not have heard or understood what was being said – it doesn't mean the very words and attitudes don't carry a weight that is clearly felt.

    How many times I experienced medical staff talking OVER me and ABOUT me – right there where I could see and experience. And being called all kinds of things that were cruel and unkind. This speaks to a lack of compassion – regardless of someone's condition.

    So I am praying for wisdom for you – knowing that you already are so soft to His prompting. That God would empower you to do exactly what HE would have you do in the moment if ever this were to happen again. That God would protect Jubilee from those arrows of the enemy and that He would use you to expose where another is allowing the enemy to use them to do harm.

    I am so thankful for you Linny. The irony of Jubilee being rescued, brought here where she could receive medical treatment, only to encounter this kind of first world attitude.

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