So, we got swabbed yesterday.
And apparently, because they're only checking for the exact mutation that Lulu has, we'll have results in a month. Wow.
And, of course, like all other people who like to pretend to know what it's like to live my life without never actually lived it, the genetic counselor actually told us to make an emergency plan.
LIKE I DON'T HAVE ONE. PLEASE.
Also, as I do EVERY MOTHERLOVING TIME a person in a lab coat (or, in this case, in close proximity to a person in a lab coat) I pointed out that I can't tell an emergency room doctor what to do.
Or, rather, that I can try, but they will never, ever, ever, ever (you picking this up, Taylor Swift?) listen to me.
So, they promised to write a letter that I can carry with me that explains what drugs not to use on Lulu. It's better, but I'm not convinced that this is awesome because it's an EMERGENCY. Who has time to read a letter?
So, anyway, that has inspired me to start a series on this blog called "emergency preparedness" for the parents of twitchy kids.
Yes, I know the four of you who read this blog don't have twitchy kids. But one day, I hope that some mom who is just at her wit's end will stumble across me and find a little sanity and humor in the great land of epilepsy management.
Also, some possible bad news/good news/good news? I think Lucy had a seizure today.
That's the bad news. The good news? That I'm not sure. See, normally, Lucy's seizures are like being in labor (if you think you're in labor, you are not in labor. You will KNOW when you are in labor. So will everybody in a -mile radius. But I digress.) But today, she stilled (tonic) and then her left leg began a rhythmic movement, just for about 7 seconds (partial focal seizure?) and then (good news again) IT STOPPED ON ITS OWN. Which is awesome. Lucy's seizures, like, never do that.
Tuesday, February 26, 2013
Sunday, February 24, 2013
Mom In Motion Study
So, people have been asking me how *I* have been doing. And I'm fine, really, but I tell them I'm a little bored because I suspect that's what they want to hear.
Mostly I'm not terribly bored. I mean, this isn't as intellectually stimulating as trying to get 26 adults to identify a thesis statement when they have no idea either what a thesis statement is or what it does despite their insistence that they have advanced high school diplomas, but I'm not horribly bored. I've been able to write more, which is kind of awesome, and I'm getting a lot of good stuff done for Lulu, which is super-awesome.
Also, I've been able to clean out three closets.
But since people wonder what I *do* all day, I thought I'd write it down. Apparently, they think I simply wipe bottom, drool, and then sing ABCs. It's close, but not quite.
And so, I present to you, with only a little more ado, a Mom in Motion Study.
To get you in the mood, you probably need to listen to this:
My day begins between 5 and 5:30am. I wake up after some crazy-ass dream (last night, I dreamed we were living in a townhouse with a teeny-tiny yard, and we bought a horse) and check for breathing.
Me: Check
T: Check.
Lulu . . . . . . . . . come on kid, give me something . . . . . . . . . . . . . . .Lulu? . . . . . Ok, Check.
Then I carefully get out of bed and head for the bathroom in the hall. Then coffee. And then?
Mostly I'm not terribly bored. I mean, this isn't as intellectually stimulating as trying to get 26 adults to identify a thesis statement when they have no idea either what a thesis statement is or what it does despite their insistence that they have advanced high school diplomas, but I'm not horribly bored. I've been able to write more, which is kind of awesome, and I'm getting a lot of good stuff done for Lulu, which is super-awesome.
Also, I've been able to clean out three closets.
But since people wonder what I *do* all day, I thought I'd write it down. Apparently, they think I simply wipe bottom, drool, and then sing ABCs. It's close, but not quite.
And so, I present to you, with only a little more ado, a Mom in Motion Study.
To get you in the mood, you probably need to listen to this:
My day begins between 5 and 5:30am. I wake up after some crazy-ass dream (last night, I dreamed we were living in a townhouse with a teeny-tiny yard, and we bought a horse) and check for breathing.
Me: Check
T: Check.
Lulu . . . . . . . . . come on kid, give me something . . . . . . . . . . . . . . .Lulu? . . . . . Ok, Check.
Then I carefully get out of bed and head for the bathroom in the hall. Then coffee. And then?
IT'S MOMMY'S FREE TIME EVERYBODY'S ASLEEP HOORAY!!!!!!!!!!!!!!
Some mornings (in fact, many mornings) MFTEAH doesn't happen. Some mornings Lulu wakes up before I can even get out of bed, so we go right to:
EVERYBODY IN THE BIG BED SNUGGLE TIME AWESOME HAPPY.
This will last until I get kicked in the face, or someone looks at the clock and realizes that if both adults wish to be washed and dressed this morning that we need to get up, or my bladder is about to give out.
Then we get up and I get Lucy her morning beverage and pull her hair into her ponytail in case she decides to fight the medicine and we commence the medicine taking. Daddy is normally in charge of this, because she fights him less, and I am not going to take away a job he is clearly better at than me.
And then I bathe and dress and dry my hair and then we switch and I try to entertain a toddler while making the beds and dressing her. Then we attempt breakfast, though we're rarely successful, especially after we've just shoved 3 teaspoons of anti-epileptics into her. And then Daddy goes to work, and we cry, and then it's time to try to watch the weather forecast and get a nebulizer treatment.
You should probably picture an adult woman trying to herd kittens into a sack with one hand. It's a little like that.
And then we commence to working on our homework. Lulu needs to learn to:
1. Stack
2. Scribble
3. Walk up the stairs
These are hard things. The stacking is coming along nicely -- we're up to three blocks. We like to make some dots on the paper and then try to gnaw on our crayon and we ARE SO MAD when Mommy takes them away.
The stairs are HARD, you guys. There is this shit called gravity and it is a bitch. Lucy can make it up a step, but a lot of times she can then fall off of said step. She never gets hurt (it's really just surprise) but she gets really scared. However, it's good for her, because she needs to understand that there's a certain amount of danger and risk in going up the stairs. I just hope I'm not creating too fearful a kid.
Anyway, then it's 9:00 and it is naptime. So we lay down and I get the computer and I check my work email and my regular email and then I get to write.
Dudes, I have been so prolific in the past two months. I write a humor column for an online magazine, and I wrote two in addition to all of my blogging. And I started a book, but then again who isn't writing a book? But anyway, I get some stuff DONE. And I also do the laundry and prep dinner and race around doing, well, stuff during naptime.
Then she wakes up. Back to homework.
11:30am. Lunch! Throw raisins on the floor! Throw cheese on the floor! Throw crackers on the floor! Eat some carrots!
12noon: While Mommy is cleaning up, eat raisins, cheese, and crackers off the floor.
12:05: Daddy give Lucy her afternoon meds. Tears.
12:15. Sesame Street is brought to you by the Letter C, the number 8, and some the highest people EVER. I'm waiting for a segment called "Puff, Puff, Pass."
1:15: Naptime. Back to writing, emailing, blogging, hemming pants, cleaning out a closet, etc.
2:00: Tell Lucy that she has not had enough nap. Nice try.
3:30: Shit. Is she ever going to wake up?
3:45: Hi, Baby! Let's play!
4:30: Daddy comes home! Time to make dinner.
5:00: Dinner! Throw raisins on the floor! Throw crackers on the floor! Eat some beans! Chew up a roll and spit it in Mommy's hand!
5:30: Fussy time. Tired again. Daddy reads books. Mommy tries to figure out what to defrost for tomorrow's dinner.
6:00pm: All the books go ON THE FLOOR.
6:10: Lucy wants to read Humpty Dumpty. WHERE IS HUMPTY DUMPTY?
6:12: Lucy is sitting on Humpty Dumpty. I attempt to explain how she can't read the book that is under her bottom. Fail. Tears. I pull her into my lap for soothing and rescue the damn book.
6:20: We read Humpty Dumpty.
6:21: And again.
6:22: And again.
6:23: And again.
6:24: And again.
6:25: I put Humpty down and tell Lucy to find another book. She chooses Little Pookie.
6:26: We read Little Pookie.
6:27: And again.
6:28: And again.
6:29: And again.
6:30: And again.
We repeat with other books until 7:00. Then we take meds and a bath and go snuggle in front of Jeopardy with some milk.
8:00pm: Brush teeth, bedtime. Also baby's bedtime. Yaaaaaawn.
8:30: TV. I normally watch about half of a show and then fall asleep, which leads to some wonky dreams. . . . .
6:10: Lucy wants to read Humpty Dumpty. WHERE IS HUMPTY DUMPTY?
6:12: Lucy is sitting on Humpty Dumpty. I attempt to explain how she can't read the book that is under her bottom. Fail. Tears. I pull her into my lap for soothing and rescue the damn book.
6:20: We read Humpty Dumpty.
6:21: And again.
6:22: And again.
6:23: And again.
6:24: And again.
6:25: I put Humpty down and tell Lucy to find another book. She chooses Little Pookie.
6:26: We read Little Pookie.
6:27: And again.
6:28: And again.
6:29: And again.
6:30: And again.
We repeat with other books until 7:00. Then we take meds and a bath and go snuggle in front of Jeopardy with some milk.
8:00pm: Brush teeth, bedtime. Also baby's bedtime. Yaaaaaawn.
8:30: TV. I normally watch about half of a show and then fall asleep, which leads to some wonky dreams. . . . .
Thursday, February 21, 2013
Hope is the thing with feathers, right Emily?
Because right now, there are feathers EVERYWHERE.
And I am afraid of feathers. I might, might, MIGHT get to go back to work.
See, today, we met again with the folks from the local government who are going to offer services to Lucy. They brought in a coordinator, a registered nurse, a physical therapist, and an occupational therapist. A lot of people looked at Lucy. The news was what we expected -- some good, some bad. Her actual chronological age is 17.5 months.
Social and emotional: 21 months. Very good.
Verbal: 24 months. EXCELLENT.
Gross motor: 16 months. This was actually surprising, because we thought she was more delayed than that.
Fine motor: 14 months. Disappointing. We thought she was not quite so delayed here.
The physical therapist helped us understand some things about Lucy in regards to the delay, which I'll explain in a moment -- but for those of you with kids, or considering kids, I really recommend any book by Dr. Sears. He has a philosophy of trying to get behind your kid's eyes, which can really help you understand your child. Why does Lucy fight sleeping alone in a crib? It's scary when I walk away -- she's never been alone in her life, EVER. It's so much better if she can see another human being.
That being said, Travis and I don't really understand what it's like to be in her body. In addition to the seizures, Lucy has a condition called hypotonia. Essentially, her muscles and ligaments are extremely loose and flexible, which doesn;t sound necessarily bad, but she can't always control them, which is bad. This isn't a muscle thing, which we could counter with exercises, but a brain-to-body thing. When she was first learning to walk, she would pull up and take a step and then just Bambi out.
The PT explained that kids with hypotonia learn not to trust their bodies. They don't trust that the messages they get will be accurate, and they don't trust that their bodies will be there for them. Understanding this really helped me understand a lot about Lucy -- why she doesn't want to use a fork -- because she doesn't trust that she'll be able to. That she doesn't want to stack blocks, because it's really frustrating -- but she'll stack anything with a hole on it on her wooden ring-stack toy. She knows she's supposed to do these things, and part of her wants to, but mostly she's either afraid to or she's given up. I'm so sad about this, but at least we know what to work on now.
Lucy's homework:
1. Stack blocks.
2. Scribble with crayon.
3. Try to walk up the stairs.
BUT, while talking with the service coordinator today, I discovered that for some reason, Lucy is eligible for medicaid. (Just Lucy. Not us.) Which means that she might then be eligible for home health services. Which might mean that the person who comes to take care of her everyday might be an LPN.
Which might mean that I get to go back to work.
I KNOW. I'm so happy I'm sharing happyfuntimes with all of you.
And I am afraid of feathers. I might, might, MIGHT get to go back to work.
See, today, we met again with the folks from the local government who are going to offer services to Lucy. They brought in a coordinator, a registered nurse, a physical therapist, and an occupational therapist. A lot of people looked at Lucy. The news was what we expected -- some good, some bad. Her actual chronological age is 17.5 months.
Social and emotional: 21 months. Very good.
Verbal: 24 months. EXCELLENT.
Gross motor: 16 months. This was actually surprising, because we thought she was more delayed than that.
Fine motor: 14 months. Disappointing. We thought she was not quite so delayed here.
The physical therapist helped us understand some things about Lucy in regards to the delay, which I'll explain in a moment -- but for those of you with kids, or considering kids, I really recommend any book by Dr. Sears. He has a philosophy of trying to get behind your kid's eyes, which can really help you understand your child. Why does Lucy fight sleeping alone in a crib? It's scary when I walk away -- she's never been alone in her life, EVER. It's so much better if she can see another human being.
That being said, Travis and I don't really understand what it's like to be in her body. In addition to the seizures, Lucy has a condition called hypotonia. Essentially, her muscles and ligaments are extremely loose and flexible, which doesn;t sound necessarily bad, but she can't always control them, which is bad. This isn't a muscle thing, which we could counter with exercises, but a brain-to-body thing. When she was first learning to walk, she would pull up and take a step and then just Bambi out.
The PT explained that kids with hypotonia learn not to trust their bodies. They don't trust that the messages they get will be accurate, and they don't trust that their bodies will be there for them. Understanding this really helped me understand a lot about Lucy -- why she doesn't want to use a fork -- because she doesn't trust that she'll be able to. That she doesn't want to stack blocks, because it's really frustrating -- but she'll stack anything with a hole on it on her wooden ring-stack toy. She knows she's supposed to do these things, and part of her wants to, but mostly she's either afraid to or she's given up. I'm so sad about this, but at least we know what to work on now.
Lucy's homework:
1. Stack blocks.
2. Scribble with crayon.
3. Try to walk up the stairs.
BUT, while talking with the service coordinator today, I discovered that for some reason, Lucy is eligible for medicaid. (Just Lucy. Not us.) Which means that she might then be eligible for home health services. Which might mean that the person who comes to take care of her everyday might be an LPN.
Which might mean that I get to go back to work.
I KNOW. I'm so happy I'm sharing happyfuntimes with all of you.
Wednesday, February 13, 2013
An addendum to yesterday's post
So, as I had to hurriedly finish yesterday, as naptime was not half as long as I expected (or hoped), I am planning to tell my cousin and family. I just want to have all the information before I do. I don't want to start the conversation with "Hey, cuz, your kid may be a ticking time bomb, but I'll be able to tell you more in three months after the lab gets my results back, try not to worry until then."
My sarcasm is veiling some anxiety. I do not actually want to have this conversation with my cousin, because I really don't want to have to bring bad news. I'd rather be able to call her up and say "Lucy has a genetic condition, but it's only her. So you don't have to worry unless you really want to."
Tuesday, February 12, 2013
Why I don't tell Facebook.
1. Nobody at work knows about this blog yet.
2. My cousin the germophobe who stays home with her baby also doesn't know about this blog yet.
3. My mom's best friend is my facebook friend.
So let's go one at a time here:
1. Nobody at work knows about this blog. Let's take a purely practical stance here. I live 45 minutes from the shitty hospital with a PICU and 90 minutes from the good hospital where our neurologist is based with a PICU. Every single time Lucy goes into status, we get airlifted to one of these hospitals. It costs us approximately one year's salary for each flight. Our insurance has been awesome about covering this, but there's a couple of things we worry about: (1) we have a $2 million/year cap which at some point we might actually meet because of this; and 2. remember I said the closest hospital is shitty? We have to try to convince the local ER doctor to send us farther away to the good hospital, and I'm not always successful. The last time we were there, the doctors not only tried to kill Lucy themselves, but then they tried to instruct us to kill her. So we might need to move to put us closer to the better hospital, which will mean that I might need to not go back to work. Please don't tell my boss.
2. My cousin is a germophobe who stays home with her kid. Her kid who is the EXACT same age as Lucy. Hold onto that thought for a moment, and consider this one: DSDs are genetic disorders. Sometimes they are de novo (which means that Lucy's genes broke themselves) or sometimes they are inherited. So we are going back for some parental cheek-swabbing in a few weeks. Our google-researching tells us that if it's inherited it's better for Lucy. However, I've been told that my cousin's kid has never had a fever. Since Davet's frequently presents as febrile seizures, I'm a little freaked out by this. So I can't say "Dravet" on facebook, because I don't need her googling yet.
3. My mom's best friend is my facebook friend. And my mom thinks she's a doctor who can solve this by rereading medical textbooks from 1964. I'm not ready to say "Dravet" to mom yet, because I'm not ready to tell her what it means yet. But I suspect it's coming, because I'm getting tired of telling people that Lucy's last seizure is not her last seizure, if you get my drift. And the final reason, ultimately: our neurologist, who really is awesome, isn't nailing down a diagnosis yet. Lucy has an SCN1A mutation. We know that. I've had a professional come to the house and look at her, and I know that Lucy has some significant gross and fine motor delays. I also know that intellectually and verbally, she's doing fine. She has a huge vocabulary (between 75-150 words) uses simple sentences, follows some 2- and 3-step commands, and is even starting to use pronouns.
Dravet is a scary thing to say. Any of the diagnoses are scary. When they first told us she had a seizure disorder, that is all I would say. I couldn't bring myself to say epilepsy, because that sounded worse. It also made it true. I don't know if I'm ready for this to be true. This is a link to a video about a girl with Dravet's called Ciara's Light. Some seizures are shown, so it can be pretty upsetting. Also, the mother discusses the possibility of SUDEP, which every episode of status seems to make more possible, along with the terrible possibility of death during a seizure.
2. My cousin the germophobe who stays home with her baby also doesn't know about this blog yet.
3. My mom's best friend is my facebook friend.
So let's go one at a time here:
1. Nobody at work knows about this blog. Let's take a purely practical stance here. I live 45 minutes from the shitty hospital with a PICU and 90 minutes from the good hospital where our neurologist is based with a PICU. Every single time Lucy goes into status, we get airlifted to one of these hospitals. It costs us approximately one year's salary for each flight. Our insurance has been awesome about covering this, but there's a couple of things we worry about: (1) we have a $2 million/year cap which at some point we might actually meet because of this; and 2. remember I said the closest hospital is shitty? We have to try to convince the local ER doctor to send us farther away to the good hospital, and I'm not always successful. The last time we were there, the doctors not only tried to kill Lucy themselves, but then they tried to instruct us to kill her. So we might need to move to put us closer to the better hospital, which will mean that I might need to not go back to work. Please don't tell my boss.
2. My cousin is a germophobe who stays home with her kid. Her kid who is the EXACT same age as Lucy. Hold onto that thought for a moment, and consider this one: DSDs are genetic disorders. Sometimes they are de novo (which means that Lucy's genes broke themselves) or sometimes they are inherited. So we are going back for some parental cheek-swabbing in a few weeks. Our google-researching tells us that if it's inherited it's better for Lucy. However, I've been told that my cousin's kid has never had a fever. Since Davet's frequently presents as febrile seizures, I'm a little freaked out by this. So I can't say "Dravet" on facebook, because I don't need her googling yet.
3. My mom's best friend is my facebook friend. And my mom thinks she's a doctor who can solve this by rereading medical textbooks from 1964. I'm not ready to say "Dravet" to mom yet, because I'm not ready to tell her what it means yet. But I suspect it's coming, because I'm getting tired of telling people that Lucy's last seizure is not her last seizure, if you get my drift. And the final reason, ultimately: our neurologist, who really is awesome, isn't nailing down a diagnosis yet. Lucy has an SCN1A mutation. We know that. I've had a professional come to the house and look at her, and I know that Lucy has some significant gross and fine motor delays. I also know that intellectually and verbally, she's doing fine. She has a huge vocabulary (between 75-150 words) uses simple sentences, follows some 2- and 3-step commands, and is even starting to use pronouns.
Dravet is a scary thing to say. Any of the diagnoses are scary. When they first told us she had a seizure disorder, that is all I would say. I couldn't bring myself to say epilepsy, because that sounded worse. It also made it true. I don't know if I'm ready for this to be true. This is a link to a video about a girl with Dravet's called Ciara's Light. Some seizures are shown, so it can be pretty upsetting. Also, the mother discusses the possibility of SUDEP, which every episode of status seems to make more possible, along with the terrible possibility of death during a seizure.
Wednesday, February 6, 2013
Practical Miracles
I believe in practical miracles.
I don't believe that God will magically heal Lucy. This is how she was made, perfect the way she is. We have no choice but to live with what we have.
But I believe that prayer is a powerful thing that makes it possible for us to be strong and brave in the face of catastrophe and disaster. I believe that it makes it possible for the impatient to be patient and calm. To find ways to be happy with my primary daily conversations with someone who only has about 100 words.
Practical miracles make it possible for the doctors to find better treatments. For us to have found our superhero Dr. Heidi and for the miracle that got us away from the doctors who were too busy to treat Lucy and to our amazing Dr. P. Prayer makes it possible for the medicine to go down. For treatments to work better. For us to figure out what therapists we need, and for the therapy to work. For us to continue to believe. For Lucy to continue to thrive even after all of the obstacles placed in her way.
Practical miracles. Little bits of magic.
I don't believe that God will magically heal Lucy. This is how she was made, perfect the way she is. We have no choice but to live with what we have.
But I believe that prayer is a powerful thing that makes it possible for us to be strong and brave in the face of catastrophe and disaster. I believe that it makes it possible for the impatient to be patient and calm. To find ways to be happy with my primary daily conversations with someone who only has about 100 words.
Practical miracles make it possible for the doctors to find better treatments. For us to have found our superhero Dr. Heidi and for the miracle that got us away from the doctors who were too busy to treat Lucy and to our amazing Dr. P. Prayer makes it possible for the medicine to go down. For treatments to work better. For us to figure out what therapists we need, and for the therapy to work. For us to continue to believe. For Lucy to continue to thrive even after all of the obstacles placed in her way.
Practical miracles. Little bits of magic.
Tuesday, February 5, 2013
What? I'm back.
And where to begin?
I guess with some of the big stuff I don't tell Facebook. Let's go ahead and open Pandora's box. Lu has a Dravet Spectrum Disorder. On facebook, we call it a "genetic mutation" that causes her epilepsy. We call it this because we haven't yet completed the testing that will tell us if it is a de novo mutation (a new mutation that occurred in Lucy alone) or an inherited mutation from one of us. Kind people, some of whom are related to me, keep telling me that they are sure that one day she will outgrow these seizures.
It will never happen.
Lucy will have seizures her entire life. This syndrome will affect every aspect of her life. 20% of the individuals diagnosed with these disorders do not live to see their 18th birthday. I can't find statistics for life expectancy beyond that -- but I have yet to read about a Dravet patient living into his or her 80s.
Lucy is already experiencing some pretty severe motor delays. She has some obvious immune disregulation, though we haven't and probably cannot back that up with science. I took her to Lowe's for 20 minutes over the weekend. I wiped the cart with Lysol wipes and used the cart cover. I didn't let her touch anything and stayed 10 feet away from all people, including the checkout person. She now has a cold. I am home with her now, on leave from work, though I can't guarantee how long that will happen. Because of Lucy's fragile immune system, we're not sure if it's safe to put her back in daycare; or if it will be safe to expose her to the germs I could bring home; or if it will be safe to bring another person into the bubble to be her nanny. There are so many uncertainties -- it's hard to make the right decisions.
In Greek and Roman myth, hope was at the bottom of Pandora's box. We think of this as a gift -- after all of the awfulness, a ray of light. I suppose that could make sense -- Lucy's name, after all, comes from the Latin word for light, "lux." However, the ancients would have recognized hope as the cruelest of the punishments in Pandora's box. Hope allows for the idea that life might change -- that things might get better. The cruelest part of Dravet's is what it ultimately takes away -- the child you had. You see, children with Dravet's often develop mostly normally for the first 2 years of their lives, and then they begin to regress. When we look at our little light, we often wonder if we might lose her. Slowly. A little at a time.
I guess with some of the big stuff I don't tell Facebook. Let's go ahead and open Pandora's box. Lu has a Dravet Spectrum Disorder. On facebook, we call it a "genetic mutation" that causes her epilepsy. We call it this because we haven't yet completed the testing that will tell us if it is a de novo mutation (a new mutation that occurred in Lucy alone) or an inherited mutation from one of us. Kind people, some of whom are related to me, keep telling me that they are sure that one day she will outgrow these seizures.
It will never happen.
Lucy will have seizures her entire life. This syndrome will affect every aspect of her life. 20% of the individuals diagnosed with these disorders do not live to see their 18th birthday. I can't find statistics for life expectancy beyond that -- but I have yet to read about a Dravet patient living into his or her 80s.
Lucy is already experiencing some pretty severe motor delays. She has some obvious immune disregulation, though we haven't and probably cannot back that up with science. I took her to Lowe's for 20 minutes over the weekend. I wiped the cart with Lysol wipes and used the cart cover. I didn't let her touch anything and stayed 10 feet away from all people, including the checkout person. She now has a cold. I am home with her now, on leave from work, though I can't guarantee how long that will happen. Because of Lucy's fragile immune system, we're not sure if it's safe to put her back in daycare; or if it will be safe to expose her to the germs I could bring home; or if it will be safe to bring another person into the bubble to be her nanny. There are so many uncertainties -- it's hard to make the right decisions.
In Greek and Roman myth, hope was at the bottom of Pandora's box. We think of this as a gift -- after all of the awfulness, a ray of light. I suppose that could make sense -- Lucy's name, after all, comes from the Latin word for light, "lux." However, the ancients would have recognized hope as the cruelest of the punishments in Pandora's box. Hope allows for the idea that life might change -- that things might get better. The cruelest part of Dravet's is what it ultimately takes away -- the child you had. You see, children with Dravet's often develop mostly normally for the first 2 years of their lives, and then they begin to regress. When we look at our little light, we often wonder if we might lose her. Slowly. A little at a time.
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