standing up to medical assumptions: our journey of faith.
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.