Finishing a whole cup of hot coffee.
"Hey, you wanna go get a drink? I know we have some beer in fridge but....aw, let's just go!"
"It's 10 o'clock. I think I'll get out of bed."
Monday, November 18, 2013
Sunday, November 17, 2013
Evie's Here
Little Evelyn was born yesterday around 8:00am. Her birth went much more smoothly than Henry's -- I think the records that the hospital had from Henry's birth (and what they did wrong) stood out so the staff took a little more care and caution this time.
But this beautiful little girl is currently napping across my stomach as I type on the laptop. And I have to admit that, knowing she has the full mutation of FXS, I've caught myself looking for telltale signs since yesterday morning.
I also feel it's horribly unfair to her, but I can't seem to help it. I look at her palate when she cries or yawns, I look at her ears. Her ears aren't as prominent as Henry's, and neither of them have the elongated face that's characteristic of FXS.
But when I do realize what I'm doing, I stop. I can't condemn this little girl into a predetermined path just because I know too much for my own good. Just as I can't predict how Henry's life will turn out, I can't shoehorn Evie into an overly cautious path just because of the medical information that floats through my head.
Just as I'm quick to criticize medical professionals for relying on statistics too much to determine a course of action or inaction, I admonish myself for doing the same to this little girl who's barely two days old.
I then remember to hang back and put away the technical manual on babies. I give her a smile and just enjoy the presence of this little squeaky thing with the cutest cry that sounds like a baby panda.
But this beautiful little girl is currently napping across my stomach as I type on the laptop. And I have to admit that, knowing she has the full mutation of FXS, I've caught myself looking for telltale signs since yesterday morning.
I also feel it's horribly unfair to her, but I can't seem to help it. I look at her palate when she cries or yawns, I look at her ears. Her ears aren't as prominent as Henry's, and neither of them have the elongated face that's characteristic of FXS.
But when I do realize what I'm doing, I stop. I can't condemn this little girl into a predetermined path just because I know too much for my own good. Just as I can't predict how Henry's life will turn out, I can't shoehorn Evie into an overly cautious path just because of the medical information that floats through my head.
Just as I'm quick to criticize medical professionals for relying on statistics too much to determine a course of action or inaction, I admonish myself for doing the same to this little girl who's barely two days old.
I then remember to hang back and put away the technical manual on babies. I give her a smile and just enjoy the presence of this little squeaky thing with the cutest cry that sounds like a baby panda.
Tuesday, November 12, 2013
Another Chapter in "Fragile What?"
Yesterday was Henry's surgery to get tubes in his ears. One of the many nurses came up for her turn to ask the same questions -- his name? his DOB? do you know why we're here? are you his parents? is he on any medication? -- and got to the part where she had to confirm any other issues or conditions not covered in the "normal" range of questions. As such, she was ready to blow past the question and move on to the next step.
The question was "any other issues? No developmental delays, he's walking and crawling....."
*sudden screech of tires*
Us: "Uh, actually, yes. He has Fragile X Syndrome, so he's got some developmental delays."
*pause*
The nurse was clearly not expecting anyone to actually answer this question in the positive, so her reflexive routine and memorized script were thrown off.
Her: "Oh, is that the one where his bones can break easily.....?"
*brief stunned silence -- tide goes in, tide goes out, you can't explain that *
It's getting to the point where we're encountering so many medical professionals who don't know what Fragile X is or have heard of it that I'm tempted to carry a box of pamphlets with me so that the people who are being tasked (and paid) to provide care for my children get educated in what to expect and how to deal with it.
I also don't know if my attitude is a result of looking to pick a fight, of expecting to have to explain FXS to people who, one would think, should know more than I do. But so far, the percentages are not in favor of the medical professionals.
The question was "any other issues? No developmental delays, he's walking and crawling....."
*sudden screech of tires*
Us: "Uh, actually, yes. He has Fragile X Syndrome, so he's got some developmental delays."
*pause*
The nurse was clearly not expecting anyone to actually answer this question in the positive, so her reflexive routine and memorized script were thrown off.
Her: "Oh, is that the one where his bones can break easily.....?"
*brief stunned silence -- tide goes in, tide goes out, you can't explain that *
What we said:My private thought was rather sarcastic, so I was glad that I was looking down and playing with Henry instead while Lori handled the explanation.
"No, it's a genetic condition that's related to autism, though he's not yet been diagnosed as autistic...." (and then continued with the usual litany of FXS characteristics)
What I thought in my head:
"No, sweetheart, that's osteogenesis imperfecta; just because the word 'fragile' is involved doesn't make a leap to a conclusion appropriate."
It's getting to the point where we're encountering so many medical professionals who don't know what Fragile X is or have heard of it that I'm tempted to carry a box of pamphlets with me so that the people who are being tasked (and paid) to provide care for my children get educated in what to expect and how to deal with it.
I also don't know if my attitude is a result of looking to pick a fight, of expecting to have to explain FXS to people who, one would think, should know more than I do. But so far, the percentages are not in favor of the medical professionals.
Sunday, November 3, 2013
FXAM
Yesterday, we went to our first meeting with the Fragile X Association of Michigan. I didn't know what to expect, really, because it was my first time attending any kind of a support-group type of meeting. And calling it a "support group" is simultaneously accurate and inaccurate.
It's a support group in that everyone there is a parent of a child with Fragile X Syndrome, so they get it. Even though every child is different, there are and will be aspects that set the kids apart from the track of typical kids, or kids who trundle along the average development path.
But at the same time, it's also not quite a support group in that stereotypical image of a 12-step program or "Anything Anonymous" type of group. We're not there to say that it's been two weeks since our last sensory-overload public meltdown and yay, congratulations to us for achieving that milestone.
No, things like that don't exist.
Nevertheless, Lori and I immediately felt like we belonged there. It was a small group that night, and the president of the association figured it was because of the Michigan-MSU game, but it was beneficial to us because it allowed us to experience the group meeting without feeling overwhelmed by the sheer number of people.
It allowed us to get comfortable with the group and what others are dealing with and that we aren't alone in this. There are other families out there who are struggling with acceptance and acknowledgement, fighting with doctors and educational institutions to take our children's needs more seriously, just as we are.
The very things I was frustrated with, when doctors are confronted with a child's condition and development schedule that don't fit neatly inside prescribed compartments of How Things Should Be. That came as a huge relief, to actually meet people in real life who truly understand what we're going through and what is in store for us in the future.
The group won't meet again until February, so we'll still be the New Family then. But by getting our feet wet, I think we'll be a bit more comfortable next time now that we know where the meetings are, how to get inside, and what to expect.
It was nice to be able to talk and listen to people who understand where we are without having to hear "fragile what?" or others making presumptions that "oh, he'll get there! In the meantime, you should do this, that, and this, too!!! My kids LOOOOOOVE it...."
(yeah, your kids don't have FXS or any other genetic disorder that'll affect them for the rest of their lives)
It was nice not to have to run that parenthetical sentence in my head from behind a plastic smile and nod.
It's a support group in that everyone there is a parent of a child with Fragile X Syndrome, so they get it. Even though every child is different, there are and will be aspects that set the kids apart from the track of typical kids, or kids who trundle along the average development path.
But at the same time, it's also not quite a support group in that stereotypical image of a 12-step program or "Anything Anonymous" type of group. We're not there to say that it's been two weeks since our last sensory-overload public meltdown and yay, congratulations to us for achieving that milestone.
No, things like that don't exist.
Nevertheless, Lori and I immediately felt like we belonged there. It was a small group that night, and the president of the association figured it was because of the Michigan-MSU game, but it was beneficial to us because it allowed us to experience the group meeting without feeling overwhelmed by the sheer number of people.
It allowed us to get comfortable with the group and what others are dealing with and that we aren't alone in this. There are other families out there who are struggling with acceptance and acknowledgement, fighting with doctors and educational institutions to take our children's needs more seriously, just as we are.
The very things I was frustrated with, when doctors are confronted with a child's condition and development schedule that don't fit neatly inside prescribed compartments of How Things Should Be. That came as a huge relief, to actually meet people in real life who truly understand what we're going through and what is in store for us in the future.
The group won't meet again until February, so we'll still be the New Family then. But by getting our feet wet, I think we'll be a bit more comfortable next time now that we know where the meetings are, how to get inside, and what to expect.
It was nice to be able to talk and listen to people who understand where we are without having to hear "fragile what?" or others making presumptions that "oh, he'll get there! In the meantime, you should do this, that, and this, too!!! My kids LOOOOOOVE it...."
(yeah, your kids don't have FXS or any other genetic disorder that'll affect them for the rest of their lives)
It was nice not to have to run that parenthetical sentence in my head from behind a plastic smile and nod.
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