March 2, 2011
by marfmom
5 Comments
March 1, 2011
by marfmom
12 Comments
Holy Tantrum, Batman!
As many of you may know, the Menininho has been sick since mid last week. It’s actually the first time he’s really been sick, unless you count that bout of cellulitis. Even then, though, M didn’t act sick. This stomach bug has just knocked him over, poor guy. Since Wed. night he’s been huddled in a ball on the end of the couch, occasionally asking for “ee-vee”, “wahh”, or “eat.”
Saturday I could tell my toddler was dehydrated. We’d been trying to get fluid in him for days and he just wasn’t willing. I called the pediatrician on-call to confer. She wasn’t one we’ve really seen, so I cut her some slack when she suggested my son should be able to tell me where he hurt and that I ought to be able to force him to drink. (Really? Who can force a 2 year old to do anything? Plus, that whole autism thing sort of gets in the way of communicating more complex ideas like pain.) In the end, it was decided that he should make a trip to the ER.
My very capable husband took him while I stayed home with Baby J, which just about killed me. IV fluids and some dextrose for his low blood sugar later, M was doing a lot better.
Cut to today. The pediatrician we spoke with wanted me to bring in M for a follow-up visit this morning. The pitiful looking toddler made me carry him on one hip while carrying the baby in his carseat on the other (don’t tell my cardiologist!). Once at the doctor’s however, M was all smiles…playing with toys in the sick waiting room and walking all by himself to the exam room.
It all went downhill fast. The pediatrician ordered a blood pressure check, which M has seen me do on myself plenty, and doctors do to this brother, but has never had it done on himself. The nurse was trying to explain but she was being too complex for him to understand and M flipped out once the cuff tightened. Then the baby started crying, which he hates, and this new doctor he didn’t know came in and that set him off head-banging, thrashing, and screaming. I eventually got him calmed down, but he started back up again when I explained it was time to go home (transitions are difficult).
M tried clinging to my leg and crying.
Then he threw himself on the floor. I left him there, took Baby J to the waiting room, and then came back to half walk/half drag M. I knew he could walk and I really needed him to; carrying him, the baby, the carseat, and the diaper bag is at least 45 lbs and that is a Marfan no-no.
Well, we made it as far as the front desk. There the Menininho jerked himself free, fell down, and lay flat on his belly screaming.
Yep, I took a picture
Normally, I go sit down and let him wear himself out. After a minute or two though, I realized this was impeding the receptionist’s ability to make phone calls. Luckily she took pity on me when she saw me scoop up the Menininho and carried Baby J to the car for me. This was a lifesaver, as M decided to go stiff as a board. Once I tried to get him into the carseat he jumped up and twisted himself such that he looked like he was being exorcised.
It was REALLY hard not to laugh.
Anyone else have super fun doctor stories? Parents of kids on the spectrum: anything you do to help prepare your kiddos for surprise doctor visits? I emailed M’s new behavioral therapist about it, but I’d love to hear what works for you!
February 28, 2011
by marfmom
14 Comments
The Chess Match
I’ve got a pet peeve when it comes to Non-Marfs discussing Marfan syndrome.
Yesterday morning I came upon a book review through my Google Alerts, where Marfan was the subject. There were many things I took issue with, like the use of the word “disease” (it’s a disorder, a syndrome – not a disease – and even that subtle difference is important), but one in particular stood out. In nearly every paragraph, the author of the post used the words “sufferer” or “victim.”
I find this terminology, particularly when used by someone with no tie to Marfan, to be presumptuous and ableist. How dare they decide how those of us living with Marfan should feel?
Words like those suggest passivity and hopelessness. They paint a picture of people who are “less than,” struggling to eek out a mournful existence. Well, those people with Marfan syndrome ought to be pitied, they must lead such miserable lives. Why should someone who has no idea what it is to live like us get a say in how society views us?
I believe we can only speak for ourselves; I’d never try to say that my views are what everyone else with Marfan believes. But THIS Marf? There’s nothing passive about how I view myself and my relationship with Marfan. Instead, I think of it like a chess match. Ok, Marfan wins this turn in saying that I need to take medication. But, I’ll take his pawn by deciding that I’ll pick the medication that makes me feel the best and allows me to be the most active. Marfan may take my knight by limiting my pregnancy and childbirth options but I’ve got his bishop in figuring out how to build a family anyway. Sometimes the game moves along at an even pace, and sometimes I lose a few turns in a row. It’s not over yet, but you can bet that at the end I’ll be the one proclaiming checkmate.
I didn’t always feel this way, and it’s ok if you don’t either. If you consider yourself a “sufferer of ____,” that’s your prerogative. But whatever you do, don’t let someone else dictate who you are or how you should feel. That’s a power no one should have, particularly someone who has NO idea of what you’re going through.
What do you think? Those of you who have a chronic illness, or a love one with one, are you bothered by this sort of language?