This letter was submitted today from a CF mom in the midwest who wishes to remain anonymous.
My child has CF. I was belittled, told not to research, and not to advocate for him. The clinic visits are traumatic all on their own. I hated going when he was little bc I felt like I was under the microscope- a mom who asks questions and wants more than a one size fits all report. Doctors threatening parents if they don’t do what they say. I experienced this as well. They thought I was some creep bc I wanted more for my child that I was willing to pay and research for. Such as herbs and natural medicines. They wanted me to put him on 25 drugs with no reasons to back it up. I had to learn how to play the game, bc it is in fact a game. They give out their threats and if we the parents don’t listen, then they threaten us more or take our kids like in Joy’s case.
Many of these doctors are following what’s in their book and they all have the same book. A parent in Iowa will receive identical information that a parent in FL is receiving from the CF clinic. I know this bc I interviewed people (& parents) with CF of all ages. Talking to adults with CF was my greatest gift of finding what my son needed.
I pushed back hard and fired a lot of doctors. They are not gods and they don’t have all the answers. Most will tell you they don’t know much about CF.
I have a doctor now who tells me how well my son is doing. She has said many times “let’s bring both of our ideas together so we can do what’s best for your son.” She is a pulmonologist in a CF clinic & I’m grateful I found a way to bring western medicine & natural medicine together.
All doctors should be working with the parents, not against them.
Joy is a good mom. A tired mom who also has to endured the clinic abuse of belittlement. I know this bc I had to, too. Just because she disagreed doesn’t mean she’s neglecting her daughter. Kenlee would have shown signs- like not getting out of bed, weighing nothing, not eating, on oxygen, can’t go to school & looks sick. But she was running at the park!!!!!That is a sign of a child who is doing well despite this genetic predisposition!
This affects all parents who have children who have to attend clinic visits. We are forever in their “system,” and we have to walk on egg shells, so don’t piss off the wrong person with a giant ego.
Reunite Joy & Kenlee!
