standing up to medical assumptions: our journey of faith.

October 17, 2012, Michaela Evanow, 15 Comments

Hard, hard day yesterday. It felt like all the walls were crumbling, all the hope was disappearing, all the goodness was dissipating.  I felt the “Why is this happening to me” syndrome cloud my mind, blind me.

It was surprising because I’ve been doing so well. I wasn’t prepared, I suppose. My environment was safe and secure, but had a few shaky foundations that needed mending. It’s amazing how a shift in the environment can cause some serious tremors.

We went to the hospital for our visit with the our new neurologist, which turned into a visit with the pulmonary specialist as well. The neurologist has the potential to be nice, but she’s also very medical, very by the book, and I felt like she was not very sensitive to us.After mentioning that we don’t like to speak negative things over Florence, nor label her, she jumped right in on the defence and shut me down. I felt like she was saying, I didn’t do anything wrong, you’re too sensitive, you need to face the facts and move on already,” She also scribbled a lot in her notepad, and I thought, Great, she’s reporting me to Social Services.”

Yes. That’s what happens in my mind somedays. Fear plays silly tricks on me.

But, in retrospect, she was doing her job, and she probably didn’t think she was being offensive at all. In any case, I know we will see her again, so I am giving her the benefit of the doubt.

The pulmonary specialist, or rather, the doctor with a thick accent and no people skills, is someone I do not care to see again. Florence has a wonderful chest; it’s not bell shaped which is often the case, it’s as strong as it can be, she can cough, she can cry well, these are all things that other doctors have said about her, and been encouraged by. And yet, he didn’t even look at her. Her saw her diagnosis, assumed, and moved on. He gave us the scenario: she may need help feeding and breathing one day because that’s what he knows. Perhaps that’s all he’s seen in these cases. We had to cut him off a few times, to protect ourselves. His feathers were slightly ruffled, but he could take it. He wants us to come back to run tests on her nighttime sleeping, because “She looks fine now, while she’s napping, but what is really going on at 3:00AM?” Um, she’s sleeping, peacefully, and there are angels in her room.

It was a weird and pointless meeting, and the only reason we went was to appease the neurologist who said He needs to see Florence n0w when she is healthy, so that he knows what to do when she’s sick. Because winter is coming, and that means sickness.” Awesome. I felt so burdened by that, and yet didn’t know how to rid myself of that heaviness. 

“She is doing so well”, I wanted to scream, don’t you see that? Can’t you encourage us in that? She has never been admitted to the hospital, has not been sick her whole life besides one tiny cold, and yet you insist on ripping us apart, and attacking our environment of faith and hope.”

It was a day of tears and anger, and old (but not ancient) wounds were ripped wide open, fresh and raw.

I felt at a crossroads by the end of the day. I can enter into this fear, trauma, pain and distress, and perhaps feel like I did when they told us the diagnosis. Sick to my stomach, unable to eat, throwing up, nearly dead inside…or I could turn around, walk in the opposite direction and choose life. Choose to celebrate this day with Florence. Choose to celebrate it not because she could get pneumonia and not make it, and have her lungs weaken and get a cough that she can’t shake…and “enter all the ridiculous things the doctors said here”….or I could simply choose to look at my little girl, really look into her gray green eyes and smell her and praise my God who created her in my womb and trust that there is something bigger happening here.

And so I did, after riding the roller coaster of fear for awhile. I rejected all the fear mongering even after the doctor told us to “be paranoid” on our trip to California and Phoenix: Avoid malls, don’t let people touch her, sanitize your hands all the time…but have a great trip! It was rather ridiculous  and I will not live in that kind of fear. We will be wise, but we are not governed by this world’s systems. These doctors do not have the final say, do not get to power trip, do not get to speak things over us. Especially in our case, where Florence isn’t technically “sick.” They prefer assumptions. And you know what, even if she was “sick” and they said the course of the sickness would look like such and such, I would still refuse it acknowledge it.

Whoever made up that stupid saying about the sticks and stones, obviously never had words break their bones. As a mother, it’s painful and feels unjust.

Have you ever had a doctor say something negative to you that you felt was unfair or overly negative and you and/or your family member went on to prove them wrong? Leave a comment and share with me and others!

And just a note, doctors and other medical personel can really brighten my day, but somedays you come across a doctor that just doesn’t seem to understand much in this world, one who regards knowledge and education far above anything else. One who hasn’t walked a day in my shoes.

15 Comments

  • Reply Chloe November 6, 2013 at 4:03 PM

    You comment “Whoever made up that stupid saying about the sticks and stones, obviously never had words break their bones.” Really hit a cord for me.
    When we were told our 1 week old daughter had brain damage and would have Cerebal Palsy our world was shattered. Then the next day the same doctor who told us said she had reviewed the scans herself and said there may not be any problems.
    This angered me to the point that I wanted to slap her. When giving someone news like that would you not review the results first!?
    4 months old, floppy but getting stronger each week. Children are made to prove doctors wrong!

    • Reply Michaela. November 7, 2013 at 8:33 AM

      Thanks for commenting! Sorry to hear you went through that.

  • Reply Belief | Naiad And The Moon Of October 23, 2012 at 2:23 PM

    […] Standing up to Medical Assumptions: Our Journey of Faith […]

  • Reply Melissa Naiad October 22, 2012 at 6:51 AM

    In my household we talk about how belief has so much more power than science. Science is just a tool, and it can cloud, and take over, people’s minds. It seems that so many people have forgotten just how powerful belief can be. You have the upper hand in all of this, and I love how you know it.

    • Reply Michaela. November 5, 2012 at 4:54 PM

      yes yes yes! you are so awesome Melissa, such a great encourager.

  • Reply Hannah October 18, 2012 at 5:59 PM

    I get eczema on my face quite often. The first time I got it I didn’t know what it was, so I went into a drop in clinic. When I got into the room I waited for a while, then finally the doctor came it. He took one look at the rash on my face and told me that I probably have herpes…..before I could interject (and tell him theres NO way thats what it is….) he continued to tell me about herpes and how it never goes away etc etc…. I felt like screaming at him. He hadn’t even asked me anything. It seemed as he just wanted to get the appointment over as soon as possible. He even gave me the description of herpes and it was so obvious that was not my diagnose…. I was so upset because I knew that wasnt what I had, he didnt even take a second to listen to what I had to say….the next day I went to a dermatologist who told me it was eczema.
    Now I think this story is hilarious but at the time it was pretty frustrating….

    Thank you for sharing your story, I’m sure Florence is a great healthy baby!:)

    • Reply Michaela. October 19, 2012 at 5:15 PM

      Thanks Hannah for sharing that! 🙂

  • Reply Gloria October 18, 2012 at 4:40 PM

    … in the last 17 months we have had 10 different family and friends told by (well meaning) doctors to gather the family because they would not live another 48 hours… because of critical health issues…
    Today… All of them are alive! Out of the hospital, free from ventilators, free from the dozens of tubes… Living life to the fullest!
    Always remember that doctors do what they’ve been trained to do BUT our God is alive and well on planet earth! He DOES heal!!
    <3

  • Reply Mrs Loquacious October 17, 2012 at 3:40 PM

    My friend’s great-nephew was born with a lot of excess fluid in his skull resulting in brain swelling (hydrocephalus). He was not expected to live and there were many foreboding things told to the family to prepare them for grief. But, his daddy being a minister and all, they simply prayed and trusted this little boy’s life to the One who gives life. After shunt surgeries and some respiratory issues, this baby boy got to go home. He is almost a year old now, and thriving despite still having some of that fluid in his skull. Sometimes the medical community can only offer their best guess, but our days belong to God.

    Be blessed and know that He is sovereign.

  • Reply Courtney October 17, 2012 at 1:21 PM

    I can so relate. Time after time, situation after situation where people told us our son would never do this or that, that he would be limited, that he may not survive. All lies of the enemy. All things they speak out of experience and fear, and not in faith. We have a God whose ways are not of this world, and our children belong to Him. Our son has, and continues to prove them wrong. There are AMAZING medical professionals (doctors, nurses, specialists, RT’s) out there and we have been blessed to work with many of them, but then there are those who once they finish speaking in my mind every time I would just smile and think “I can’t wait until he proves you wrong”. And he has. I can wait to see how Flo proves them all wrong!!

    I am proud of you for choosing to rise above all the things that were spoken and to hold on to the truths of God. You are an amazing mama.

    Love you Mic!
    Court

  • Reply wartica October 17, 2012 at 12:23 PM

    I’ve come across a slew of doctors in my life–with all my chronic skin issues–that just didn’t get it either; thankfully, i did and got rid of my ongoing issues in natural ways:))

  • Reply graysmatter October 17, 2012 at 8:56 AM

    A friend of mine who is in the medical community has mentioned many times that situations like this are why bedside manner needs to be emphasized further in medical practice when you are specializing. While you need to be disconnected to some degree to be a physician, I don’t believe you can be so disconnected to lack any kind of empathy for the people you are seeing and consulting with.

    When Helen and I had Dara, we had a situation for the first little while where we thought we were in a pretty good groove of feeding, with a combination of boob and bottle. Dara’s family doctor disagreed and she in fact told us that if we wanted her to continue nursing, we had to stop bottle feeding her at *all* and *only* feed her off of the boob for several days, basically every hour. I explained to the doctor that I thought this would be nearly physically impossible for both Helen and Dara – because of the time it was taking Dara to latch, Helen would essentially only be sleeping in 30 min bursts if that, and Dara likely wouldn’t be getting enough to eat, as we already had a legitimate situation with underfeeding early on in the process because of a prescription screwup from her locum. Helen asked for a referral to the breastfeeding clinic as she felt she would benefit from their advice. The doctor’s response, “Sure, I’ll set that up but they’re going to tell you the same things I did and you won’t get in before three days are up. Call me if you have any problems.”

    So we started this experiment basically with the mindset that if the doctor was right, then it would help us and if it wasn’t we would be able to tell her this didn’t work. However after about a day and a half both Dara and Helen were absolutely miserable and crying.

    Helen decides to call the doctor since she had told Helen to call if there were issues. Doctor replies by essentially saying, “I’m really busy, this is my day off, and you’re wasting my time with your problems, suck it up and keep going”. To say that I was livid was a bit of an understatement. =)

    Luckily, we found out we’d be able to go into the breastfeeding clinic early as they had an opening.

    So the next morning we go into the breastfeeding clinic, we tell them what we’re doing and the *first* response we get is “Why would you do that, to yourselves and to Dara? That’s just killing all of you, and it’s not sustainable”. We tell them that this is the advice we received from Dara’s family doctor to which the reaction is shock. They basically tell us to supplement with the bottle regularly until H’s milk supply comes up, which is a relief to pretty much all three of us.

    On the way out, I overhear a conversation between three of the doctors at the breastfeeding clinic:
    “But don’t they have to go back to see Dr. [Redacted[?”
    “She told them to just breastfeed with no bottle support. I can’t send them back to her”
    “Are you serious? She said that to them? That’s insane?”
    “I know, I can’t imagine what the basis was for it.:
    (etc. etc.)

    Needless to say, we pretty much immediately switched family doctors for Helen and Dara and when I talked to our old GP I explained exactly what the problems were:
    1) treating Helen as if she wasn’t a human being with feelings and legitimate concerns for her child was bad enough
    2) on top of that other experienced practitioners told us that she was totally, completely, thoroughly wrong.

    We were tempted to be done with her after #1, but point #2 just solidified it.

    So I guess this is a long-winded way of telling you what you already know; that
    a) some doctors have zero ability to empathize with other parents and zero idea of the impact that their words can sometimes have on them (albeit temporarily, as you and Jason are lucky enough to have Christ at your centre to dispel that fear)
    b) some doctors are wrong.

    Much love,
    -J, H, and D

    • Reply Michaela. October 17, 2012 at 6:07 PM

      Thanks for that. Well put 🙂

  • Reply Tania October 17, 2012 at 8:21 AM

    here is a wee little encounter i had with my specialist…http://thedreamsandconfessions.blogspot.ca/2012/07/what-i-heard-specialist-say-and-wee-bit.html

    • Reply Michaela. October 19, 2012 at 5:11 PM

      God save us from our doctors. Yes, thank you Becky! Thanks for sharing your story Tania. Your old specialist sounds a lot like our new one. I think I want to fire him too.

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