Dear Doctors: Stay Focused on your Goal
Our Teddy Bear's Journey
by sarahtar
2y ago
I recently shared here the story of his recent eye exam. To briefly recap, this office (which has in his files a fairly extensive list of his diagnoses) has a nurse-type person come in to do the initial exam, then the doctor comes in after. The not-doctor person asked T to identify the letters, and he could not. It became unclear whether he couldn’t see them or whether he couldn’t name them – so I asked her if we could switch to shapes. She refused because “he did letters last year.” And yes, he did do letters last year. But he’s been struggling with it this fall. Can he not remember? Can he ..read more
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A healthcare experience
Our Teddy Bear's Journey
by sarahtar
2y ago
I want to share an experience here. I won’t talk about the absolute frustration of Teddy’s latest hospital stay, because that falls into the realm of things I somewhat expect, though am always disappointed when they happen. (But we’re not going to do an admission at Blank again unless it’s something regular-kid that doesn’t impact his kidney.) I won’t talk about having to explain to doctors that no, the child doesn’t have a port for his subcutaneous infusion, which should be obvious simply from the word subcutaneous. I’m going to talk about his eye exam. Last year was the first year Teddy coul ..read more
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How Hard Can You Push? (or: Managing Doctor Relationships)
Our Teddy Bear's Journey
by sarahtar
2y ago
Advocacy for yourself and your child in a medical setting can be very difficult. Last week, I spent a chunk of time on the phone with a friend whose child, unbeknownst to me, has been experiencing serious medical problems for quite some time now. This friend is beyond frustrated, and listening to her tell me what has been happening, I was frustrated for her. They are in a situation where the specialist they are seeing isn’t really doing anything for her child. The child is experiencing major medical issues resulting in a greatly diminished quality of life. It’s been going on for a long time ..read more
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The Isolation
Our Teddy Bear's Journey
by sarahtar
3y ago
I know we’re all feeling isolated these days, but I got to thinking recently about the isolation that many special needs parents feel. It started with a conversation with a person I don’t know very well about travel. This person knew that I hate to fly and that I will not fly over water. I was forced to once against my will and I am not doing it again. But we were talking about visiting Europe and that it is something I would like to do, but it’s basically off limits because I won’t fly there. She said I could just take a cruise there. And then we hit the weird part of the conversation. Weird ..read more
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Dear Doctors, I’m Good But I’m Not That Good
Our Teddy Bear's Journey
by sarahtar
4y ago
Dear Doctors, Today, let’s talk about transparency and expectations, specifically regarding Preparation For A Clinic (or other) Appointment. I know you have a set of metrics or other information you’d like from me at our appointments. “How is x going” or “how many times does he y a day” or “exactly how much z does he get?” Some of these things are pretty predictable, some of them you seem to invent during the appointment. And I’m sure you think I track all of this stuff. I mean, I do a great job tracking the things you specifically ask me to track, so why wouldn’t I be conversant with other t ..read more
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The Walking Dead as a Metaphor for Medical Parenting
Our Teddy Bear's Journey
by sarahtar
4y ago
I’ve been watching The Walking Dead older seasons lately. It occurred to me how the lives of parents of medical-needs kids are a lot like the lives of people in a zombie apocalypse. It is constant stress. There is no time for PTSD, just…DTSD (During Trauma Stress Disorder). This was what kept bouncing in my head all through the first season. The constant stress. The always looking over your shoulder. The never fully relaxing. There is no safety. There is the illusion of safety. Sometimes, you can lull yourself into thinking you’ve achieved safety. But then your farm gets overrun by a herd of ..read more
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People with healthy children say the darndest things…
Our Teddy Bear's Journey
by sarahtar
4y ago
Oh, they don’t mean any harm, but sometimes parents of healthy kids can say the darndest things, can’t they? Here are some of my favorites that I’ve heard, directly said to me or at least in my presence. “I keep all those nasty chemicals far away from my precious child!” (referring to bleach) Yes, I remember living in a world where I didn’t have to rely on harsh cleaners to keep my child alive, or to prevent my child from passing on things like C-Diff to my other children. But instead of the fairly judge-y statement above, I might suggest, “I prefer to avoid chemical cleaners if possible.” (O ..read more
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SICK KID RULES
Our Teddy Bear's Journey
by sarahtar
4y ago
Since we’re in the middle of cold and flu season here, I thought it prudent to remind parents to keep your sick darlings at home. All day. Every day. Until they’re better. One would think this would go without saying, but recently while sitting watching my daughter’s gymnastics class, I noticed one of the girls who’s usually inside the gym with her sister was instead sitting next to me with her mom. Coughing. A lot. When her classmates arrived for class, she started to run over to give them a hug and her mom told her no hugging. Why? Because if you’re sick enough to need to stay home from sch ..read more
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Dear People: Yes, You Can Get A New Doctor
Our Teddy Bear's Journey
by sarahtar
4y ago
This is our follow-up post to Dear People: Signs You Need a New Doctor. Dear People, YES! You CAN get a new doctor. What’s your first, gut response to hearing that maybe it’s time for a different doctor? Are you protesting in your mind? Even just a little? Probably. It’s important to listen to that protest and consider it, but if you read through our last blog post and thought “oh wow, my doctor makes stuff up all the time and never listens to me – maybe I DO need a new doctor,” let’s try to overcome some of those protests. But there aren’t any other doctors Yes, there are.* Do you mean “ther ..read more
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