So, I was talking about humility the other day. And it is an art and a promise and truly difficult and truly humbling. I've had many experiences that have brought me to a level of humility that I now have, and I suspect that I will still have to hand over more of my pride and even more of my pride before I am done with my walk here on the bluish-greenish-brownish-smoggy ball.
You see, being Lucy's mom has been extremely humbling. In fact, I couldn't actually put words to it until now, not until someone else was kind enough to prime the pump for me. This blog post by Dr. Karin really made me feel like she knew exactly how I had felt, and still often feel, about what it's like to be Lucy's mom. Especially this passage:
I never knew fear until I put my child’s life in someone else’s hands, out of my sight, out of my control, and beyond the swinging doors of a room filled with masked healers with gloved hands.
I never knew faith until all I could hold onto were the reassurances of the nurse who took him away in her arms, the spoken confidence of the surgeon who promised he knew what he was doing, the words in the Bible that I had memorized in my youth … and the prayers of so many people, some family, some I did not even know, who loved my baby boy and wanted him healed.
I never knew the love of God until I realized that He was okay with the fact that I was angry, exhausted, confused, and petrified and unable to pray for a time when my newborn was first taken from me, but He waited right there by Hoyte’s bedside with me anyway, loving me all the way and waiting for me to come back.
I never knew gratitude until I saw the surgeon walk through the swinging door of the hospital waiting room, removing his mask to reveal a reassuring smile.
I never knew joy until I watched my child recover body and soul from infections, procedures and surgeries and then one day finally saw his smile again … even brighter than before.
I never knew closeness until I realized that God indeed had been tucked up beside each of us every single hour. And when I regained my strength and was able to reach back up to Him with a renewed spirit, His voice sounded closer than before, and the warmth of his compassion flooded my heart with indescribable blessing.
I never knew anything more certain than what I know today for sure: Our little Hoyte is a miracle, and he is HERE FOR A REASON.
And so is your child.
You see, when Lucy was first hospitalized, I had to actually give up being her mother. I couldn't hold her or comfort her or even feed her anymore. I pumped loads of milk that we poured down the sink. I literally could do nothing for my infant daughter. I couldn't save her. I couldn't help her. I had to hand her off to strangers, and hope for the best. And I told people I prayed -- I tell people I prayed, and I think on some level I did. But the inside of me looked like this:
I had to lean on the assurances and the help of strangers. I had arrived at the hospital with the clothing on my back, with my purse, and with nothing else. The nurses brought me food, found me soap and contact solution and a cell phone charger.
For the first time, I learned what it meant to put aside my pride and allow people to really help me. But my lessons weren't over.
When I returned to work, and the syndrome grew worse, I learned what it meant to have a good boss who was really there for me to help me.
I learned how to lean on friends, and talk to them, and tell them when I was sad or scared. I learned what I really needed and what I wanted. And through it all, the people have come back with love and support beyond what I have imagined. My old pride has taken a beating -- because as I realized that first time, I am not enough.
I have to accept more for Lucy. She needs more. She has assistance from the state. She has a team of therapists and nurses and doctors. I've slept in a Ronald McDonald House, and when I could, I gave back. I've eaten the food given to me by complete strangers, and brought food back. When se almost died last Christmas, the outpouring of support and love buoyed us up. And so we work very hard to be anchors and pillars for those we see who are sad.
Charity is not the strong helping the weak -- it is a symbol of infinity, in which we see how God's love shows for all of us. The more humble I am, the more I can love the greater mass of humanity, because it allows me to see better how to love and to accept more love so as to give it. Infinitely, infinitely, infinitely.
Infinity.
Showing posts with label In the (Parent) Hood. Show all posts
Showing posts with label In the (Parent) Hood. Show all posts
Thursday, December 12, 2013
Friday, June 28, 2013
This makes me teary every time.
The Special Mother
by Erma Bombeck
Most women become mothers by accident, some by choice, a few by social pressure and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how these mothers are chosen?
Somehow I visualize God hovering over Earth
Selecting his instruments for propagation with great care and deliberation.
As he observes, he instructs his angels to take notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint, Matthew."
"Forrest, Marjorie, daughter. Patron Saint, Celia."
"Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."
Finally he passes a name to an angel and smiles. "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who knows no laughter?
That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair.
Once the shock and resentment wear off she'll handle it."
"I watched her today.
She has that sense of self and independence so rare and so necessary in a mother.
You see, the child I'm going to give her has a world of it's own.
She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she will never survive.
Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't know it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says momma for the first time, she will be witness to a miracle and know it.
I will permit her to see clearly the things I see--ignorance, cruelty,
prejudice--and allow her to rise above them.
She will never be alone.
I will be at her side every minute of every day of her life
Because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles.
"A mirror will suffice."
Tuesday, June 25, 2013
Let's have some good news.
1. Lucy counts to six. With some help.
2. We get a nurse. A real one. Not that we don't love our Carrie.
3. Lucy's posturing is better. (Bad news -- it is better since they raised her zonegran, so that might mean it's seizures, BUT this is good news day.)
4. Lucy can feed herself some yogurt.
5. Last night she ate four grilled nuggets.
6. She can put legos together and take them apart.
7. She says "itsy-bitsy spider." Okay, she says "itteh-betteh pideh." But she says it when she pulls out the book.
8. I think her feet are growing.
9. She says she loves us a lot.
10. She kisses fish. Okay, she blows kisses at fish. It's adorable.
2. We get a nurse. A real one. Not that we don't love our Carrie.
3. Lucy's posturing is better. (Bad news -- it is better since they raised her zonegran, so that might mean it's seizures, BUT this is good news day.)
4. Lucy can feed herself some yogurt.
5. Last night she ate four grilled nuggets.
6. She can put legos together and take them apart.
7. She says "itsy-bitsy spider." Okay, she says "itteh-betteh pideh." But she says it when she pulls out the book.
8. I think her feet are growing.
9. She says she loves us a lot.
10. She kisses fish. Okay, she blows kisses at fish. It's adorable.
Wednesday, May 29, 2013
We saw Dr. P today. He rushed us in after we called to report on Lulu.
I'll back up.
Lulu has been doing that weird posturing stuff for over a year, and nobody knows what it is.
For three weeks, she's been having episodes of muscle weakness. And we can't get her to respond well -- she's dazed and grunty and kind of unresponsive.
Sometimes, immediately following these episodes, she postures for a while. And wanders around. He says they might be complex partial seizures.
Awesomepants.
-----
But, in other awesomepants news, Lulu is interested in the potty. I'm not holding out any timeline here, because with all her stuff I wasn't actually expecting her to use the toilet with any regularity before the age of four (hypotonia affects all the muscles, including bowel and bladder). But she is now the proud owner of a froggy potty. Just in case, you know.
Lulu has been doing that weird posturing stuff for over a year, and nobody knows what it is.
For three weeks, she's been having episodes of muscle weakness. And we can't get her to respond well -- she's dazed and grunty and kind of unresponsive.
Sometimes, immediately following these episodes, she postures for a while. And wanders around. He says they might be complex partial seizures.
Awesomepants.
-----
But, in other awesomepants news, Lulu is interested in the potty. I'm not holding out any timeline here, because with all her stuff I wasn't actually expecting her to use the toilet with any regularity before the age of four (hypotonia affects all the muscles, including bowel and bladder). But she is now the proud owner of a froggy potty. Just in case, you know.
Friday, May 24, 2013
Mean Red Days
A little girl died from Dravet last night. She wasn't yet four.
I still think it's intolerable that any kid dies from any condition. But it's slightly more intolerable that any kid dies from my kid's condition.
I've spent much of the day leaking from my tear ducts.
I still think it's intolerable that any kid dies from any condition. But it's slightly more intolerable that any kid dies from my kid's condition.
I've spent much of the day leaking from my tear ducts.
Thursday, May 23, 2013
You may be wondering
why Carrie the CNA is here, since there's that medication issue. And we are waiting on a nurse.
I might be getting her in trouble with this post.
But fear not. Carrie isn't her real name.
I will not post the name of the agency she works for. But, when we went over emergency procedures, I assured her that in the event of a seizure that required rescue diazapam, both Travis and I would assume that Lucy administered it herself, if she and Carrie were the only ones here.
I've also assured the agency that same thing.
And we all gave each other the look over Lucy's sweet little head, which is to say that nobody's going to stand by and watch the toddler seize and do nothing.
I might be getting her in trouble with this post.
But fear not. Carrie isn't her real name.
I will not post the name of the agency she works for. But, when we went over emergency procedures, I assured her that in the event of a seizure that required rescue diazapam, both Travis and I would assume that Lucy administered it herself, if she and Carrie were the only ones here.
I've also assured the agency that same thing.
And we all gave each other the look over Lucy's sweet little head, which is to say that nobody's going to stand by and watch the toddler seize and do nothing.
Tuesday, May 21, 2013
Love and Other Stuff
I love watching Lucy fall in love.
I can see how some people hate watching their kids reach for other people, but I'd rather have Lucy love and trust the person she's with. And she, after all of two visits from Carrie the CNA, really likes Carrie. She likes to play with Carrie and hug Carrie and make Carrie eat her necklace (Carrie's necklace, not Lucy's necklace. Lucy does not wear necklaces.)
I guess my fear is that Carrie isn't me -- so she won't challenge her and teach her the way I will, and Lucy might not keep gaining skills. So I'll have to teach Carrie, in this time, to think like me. It's amazing how when you have a kid with a catastrophic illness, you do not fear that they will love their caregiver more. You instead fear that there will be a stagnation in skills, or that they won't be loved enough because they're so different.
God bless Carrie.
As for the Other Stuff, well, Travis had a question about Dravet Spectrum Disorders. So I called our genetic counselor. Let me catch y'all up.
DSDs are unlike most, if not all other genetic disorders in that when you break an SCN1A or SCN1B gene, you may have any of the following: Febrile seizures, GEFS+, ICE-GTC, SIMFE, or SMEI, which is Dravet Syndrome. I've listed them in order from mild to severe. We already know that Febrile Seizures, the mildest form, is off the table. If you want a brief catchup, go here.
GEFS+ is the next one, and the last of these to be classified as "mild." We've seen the "G" explained as "generalized" or "genetic" -- and so we wanted to know if that meant that there needed to be a family history for this to still be a possibility.
Look, we pretty much knew, given how her seizures progress, that this one was off the table, too. And we also are smart enough to know that labeling Lucy at this point isn't helping. Knowing that she has this mutation helps, but labeling her after that doesn't, except to give us some closure and maybe give us some idea that it has gotten as bad as it can get. Naming the beast doesn't change treatments or meds, or anything. We still have to be as aggressinve as we can, and we still have to stop trying to limit her abilities as much as we can. In fact, I think not naming it keeps us from limiting her as best we can.
But GEFS+ needs a family history of seizures, which we don't have, and so it is off the table. Which means we are now in the part of the map where there be dragons.
Beware, dragons. You don't know what you're up against.
I can see how some people hate watching their kids reach for other people, but I'd rather have Lucy love and trust the person she's with. And she, after all of two visits from Carrie the CNA, really likes Carrie. She likes to play with Carrie and hug Carrie and make Carrie eat her necklace (Carrie's necklace, not Lucy's necklace. Lucy does not wear necklaces.)
I guess my fear is that Carrie isn't me -- so she won't challenge her and teach her the way I will, and Lucy might not keep gaining skills. So I'll have to teach Carrie, in this time, to think like me. It's amazing how when you have a kid with a catastrophic illness, you do not fear that they will love their caregiver more. You instead fear that there will be a stagnation in skills, or that they won't be loved enough because they're so different.
God bless Carrie.
As for the Other Stuff, well, Travis had a question about Dravet Spectrum Disorders. So I called our genetic counselor. Let me catch y'all up.
DSDs are unlike most, if not all other genetic disorders in that when you break an SCN1A or SCN1B gene, you may have any of the following: Febrile seizures, GEFS+, ICE-GTC, SIMFE, or SMEI, which is Dravet Syndrome. I've listed them in order from mild to severe. We already know that Febrile Seizures, the mildest form, is off the table. If you want a brief catchup, go here.
GEFS+ is the next one, and the last of these to be classified as "mild." We've seen the "G" explained as "generalized" or "genetic" -- and so we wanted to know if that meant that there needed to be a family history for this to still be a possibility.
Look, we pretty much knew, given how her seizures progress, that this one was off the table, too. And we also are smart enough to know that labeling Lucy at this point isn't helping. Knowing that she has this mutation helps, but labeling her after that doesn't, except to give us some closure and maybe give us some idea that it has gotten as bad as it can get. Naming the beast doesn't change treatments or meds, or anything. We still have to be as aggressinve as we can, and we still have to stop trying to limit her abilities as much as we can. In fact, I think not naming it keeps us from limiting her as best we can.
But GEFS+ needs a family history of seizures, which we don't have, and so it is off the table. Which means we are now in the part of the map where there be dragons.
Beware, dragons. You don't know what you're up against.
Labels:
Dravet Spectrum Disorders,
Genetics,
Guvmint,
In the (Parent) Hood,
Medicaid,
OT
Wednesday, May 8, 2013
I got what I wanted SO WHY DON'T I LIKE IT?
Lucy has medicaid.
We are getting a caregiver.
I am going back to work.
BALLS, Y'ALL.
Just balls.
Excuse me. I will be off in the corner sniffing her shoes and sobbing.
We are getting a caregiver.
I am going back to work.
BALLS, Y'ALL.
Just balls.
Excuse me. I will be off in the corner sniffing her shoes and sobbing.
Monday, April 22, 2013
Results. Finally.
Lucy's mutation is a de novo mutation. Unfortunately, this may mean that her Dravet Spectrum disorder may be worse -- but on the bright side, we do know that other people in the family that plan on spawning have little to worry about.
Friday, March 29, 2013
It's not 5:00 here,
but if you're judging me and my glass of Pinot Evil, then you and I are not friends.
Lulu screamed for three hours before she finally fell asleep three minutes ago.
And my in-laws are coming this weekend. They don't understand toddlers, but they want to visit with Lucy.
On an average day, Lucy falls asleep for afternoon nap somewhere between 1 and 3. Today at 1, she was yawning and rubbing her eyes, so I put her down. She screamed for 3 SOLID FREAKING HOURS. My ears are still ringing.
We had told the in-laws that she normally can't last much beyond 5:30 for her dinner (and normally she can't) but as she just now made it to sleep at 4pm, I doubt she'll wake before 5:15.
AND they're here.
Well, not HERE. They're at their hotel. And I am negotiating with Travis about whether to wake her at 5 or let her sleep a little and tell the people who don't speak toddler why the schedule has suddenly changed.
Also, no results. I am quite disappointed.
Lulu screamed for three hours before she finally fell asleep three minutes ago.
And my in-laws are coming this weekend. They don't understand toddlers, but they want to visit with Lucy.
On an average day, Lucy falls asleep for afternoon nap somewhere between 1 and 3. Today at 1, she was yawning and rubbing her eyes, so I put her down. She screamed for 3 SOLID FREAKING HOURS. My ears are still ringing.
We had told the in-laws that she normally can't last much beyond 5:30 for her dinner (and normally she can't) but as she just now made it to sleep at 4pm, I doubt she'll wake before 5:15.
AND they're here.
Well, not HERE. They're at their hotel. And I am negotiating with Travis about whether to wake her at 5 or let her sleep a little and tell the people who don't speak toddler why the schedule has suddenly changed.
Also, no results. I am quite disappointed.
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. . . . .
Monday, November 28, 2011
Before and after
I am a worrier by nature. When I had a kid, I just simply ramped up the worrying, but that's really because there's just more to worry about. I mean, you get to run the wprry-gamut from whether baby is cold or hot or sick or comfortable to worrying about a plugged tear duct and dry skin and unusual discharge.
And then, on Thanksgiving, there was a line drawn, and I went to a new level.
Baby had some sort of event on Thanksgiving. She had a tremor in her left arm; or some sort of seizure but only involving her left arm. We spent that evening in the emergency room at a country hospital in KY and then in the pediatric emergency room at the University of Kentucky. She spent two days at Children's Hospital. They ran every test*. They all came back negative. So they discharged us with a diagnosis of "dystpnic posturing" which we both googled and got freaked out about and have sworn off the googles because of. I know that's a lot of poor preposition use. Bite me.
We made an appointment with our pediatrician before we left the hospital. We were hoping that it was a fluke of sorts -- after all, there had been no activity while we were at KCH.
And then yesterday, I saw the shaking again. And again today. So either it's simply something she does and we're overprotective or something is wrong and nobody knows what. I keep looking at the pictures we took Thanksgiving when she met her paternal grandparents. They are from "before." We live in the "after," where we're all scared.
*I am not joking. From 10pm on, we were in an episode of "House" -- they did a lumbar puncture, an mri, an eeg, bloodwork. Travis and I were waiting for one of the residents to say "auto-immune."
And then, on Thanksgiving, there was a line drawn, and I went to a new level.
Baby had some sort of event on Thanksgiving. She had a tremor in her left arm; or some sort of seizure but only involving her left arm. We spent that evening in the emergency room at a country hospital in KY and then in the pediatric emergency room at the University of Kentucky. She spent two days at Children's Hospital. They ran every test*. They all came back negative. So they discharged us with a diagnosis of "dystpnic posturing" which we both googled and got freaked out about and have sworn off the googles because of. I know that's a lot of poor preposition use. Bite me.
We made an appointment with our pediatrician before we left the hospital. We were hoping that it was a fluke of sorts -- after all, there had been no activity while we were at KCH.
And then yesterday, I saw the shaking again. And again today. So either it's simply something she does and we're overprotective or something is wrong and nobody knows what. I keep looking at the pictures we took Thanksgiving when she met her paternal grandparents. They are from "before." We live in the "after," where we're all scared.
*I am not joking. From 10pm on, we were in an episode of "House" -- they did a lumbar puncture, an mri, an eeg, bloodwork. Travis and I were waiting for one of the residents to say "auto-immune."
Wednesday, September 21, 2011
Scenes From a Marriage, New Parent Edition
I'm nursing Baby Blue, and she makes about the cutest face ever -- while her right hand is clearly flashing the "East Coast" gang sign. I called in my husband, and we chuckled, and I said, "I wish I could get a picture of this."
In no more than THREE SECONDS FLAT, Superdad is standing in front of me with a camera.
And I said, "Um, you're not actually going to take this picture, are you?"
In no more than THREE SECONDS FLAT, Superdad is standing in front of me with a camera.
And I said, "Um, you're not actually going to take this picture, are you?"
Thursday, September 1, 2011
Holy crap you guys, we're getting a new roommate this week.
Another human being is moving in here in the next seven days. She won't be paying rent.
I've organized just about everything, except the areas that I really just can't. (Seriously -- it's hard to crawl into our closets, so those I've been trying to ignore. But now I'm going to have to obsess about them for the next three days, because I can't obsess about the linen closet anymore, because I cleaned it out.)
I'd pack my cats into boxes, except that seems cruel. But very organized . . . .
Speaking of which, my cats are high right now. We put these calming-pheromone collars on them so they don't freak out too much when we bring the tiny human home, and they are in a state of zen most often seen after too many special brownies. So I suppose I did "nest" the cats, although luckily enough for them that just included furminating and a new collar.
I highly recommend. These things kept them calm on a 24-hour car trip, the last four hours of which involved a Very Loud Radio and a driver who was belting every song she knew (I was trying to stay awake by any means necessary.) Needless to say, I lost my voice.
And, to bring this stream-of-consciousness back around, I was pregnant during that move.
So now, we continue to wait for the little . . . .
I've organized just about everything, except the areas that I really just can't. (Seriously -- it's hard to crawl into our closets, so those I've been trying to ignore. But now I'm going to have to obsess about them for the next three days, because I can't obsess about the linen closet anymore, because I cleaned it out.)
I'd pack my cats into boxes, except that seems cruel. But very organized . . . .
Speaking of which, my cats are high right now. We put these calming-pheromone collars on them so they don't freak out too much when we bring the tiny human home, and they are in a state of zen most often seen after too many special brownies. So I suppose I did "nest" the cats, although luckily enough for them that just included furminating and a new collar.
I highly recommend. These things kept them calm on a 24-hour car trip, the last four hours of which involved a Very Loud Radio and a driver who was belting every song she knew (I was trying to stay awake by any means necessary.) Needless to say, I lost my voice.
And, to bring this stream-of-consciousness back around, I was pregnant during that move.
So now, we continue to wait for the little . . . .
Thursday, August 25, 2011
Talking to baby
I talk to the baby a lot. I find I do it now more in public (before, I just talked to myself, which is admittedly weird but I do it).
I like to tell her I love her when she kicks, and to talk to her about what she's up to, and what I'm up to, and how one day she'll go to UVA and then NC State and then wherever else she wants to go.
But lately, I punctuate every sentence with "please come out."
Please?
I can't sit at a table or desk anymore. I can't reach stuff anymore. I can't sleep more than three hours at a stretch anymore.
My description of myself sounds like a newborn.
Please come out.
I like to tell her I love her when she kicks, and to talk to her about what she's up to, and what I'm up to, and how one day she'll go to UVA and then NC State and then wherever else she wants to go.
But lately, I punctuate every sentence with "please come out."
Please?
I can't sit at a table or desk anymore. I can't reach stuff anymore. I can't sleep more than three hours at a stretch anymore.
My description of myself sounds like a newborn.
Please come out.
Thursday, July 28, 2011
The threat of death drives my husband to shop.
Soooo, last week I was tested for pre-eclampsia, because I have very diligent midwives (for the record, my blood pressure was high for me, but not what the medical community considers high. I was feeling some stress.)
HOWEVER, I called my husband after the Midwife dropped the news of the possible complication (and whined like a spoiled brat about not wanting to spend six weeks in bed) and he told me not to google. He did google, however, and approximately three hours later during a text-message conversation wrote: "When I get back, we'll go do some baby shopping." It's how I knew that this was serious. Most of the time, my husband would rather pass a kidney stone than shop.
Last night, he tried some backpedaling, now that we know I'm fine: "It'll be nice for you to get out and shop this weekend."
Note the change from plural to singular.
HOWEVER, I called my husband after the Midwife dropped the news of the possible complication (and whined like a spoiled brat about not wanting to spend six weeks in bed) and he told me not to google. He did google, however, and approximately three hours later during a text-message conversation wrote: "When I get back, we'll go do some baby shopping." It's how I knew that this was serious. Most of the time, my husband would rather pass a kidney stone than shop.
Last night, he tried some backpedaling, now that we know I'm fine: "It'll be nice for you to get out and shop this weekend."
Note the change from plural to singular.
Saturday, July 16, 2011
Pieces of advice I wish I'd gotten about pregnancy.
This will probably become an ongoing thing, because it's not like I can remember all the pieces of advice I wish I'd gotten in one fell swoop. Dude -- yesterday I forgot my zip code, for Peter's sake. And while I entitled this "Pieces of advice I wish I'd gotten about pregnancy" it would probably be better explained as "Pieces of advice I wish I'd gotten about pregnancy or that I had listened to better or that had been explained to me in such a way that I really understood the magnitude of what is happening."
But it occurs to me that there's some stuff you don't really get from the books. I'll try to warn you if TMI is coming, so you can avoid it.
1. No matter how much you think you will not have a problem doing what you normally did, you will. Case in point: at eight weeks pregnant, I became unable to (1) run and (2) wear high heels, ever.
Prior to the infant, I could run 2-3 miles 3-4 times a week. After infant, I suited up for a run and made it ten feet before my knees ached miserably and I was winded. As for the high heels -- let's just say I used to be able to handle working a ten-hour retail shift on a stone floor in four-inch heels. I mean, my feet ached a little afterwards, but I could walk the next day. At 8 weeks, I wore my favorite comfy stacked-toe four-inch heel Wonder Woman boots and could barely limp around the apartment the next day. At now 8 months (or 7, depending on which book you read) I am unable to cross my legs without regretting it, sleep more than 3 hours at a stretch, tie my own shoes properly, bend over to pick something up without having to make a plan, lie on my back without it becoming painful, and sit or rise from a sitting position without some struggle and prayer. I am a graceless hippo wearing mascara.
2. If you don't know where the bathroom is, you should not go to that location. In fact, you should be able to get to a bathroom in no more than thirty minutes from the last one. Or you should invest in adult diapers. Because you may think you can hold it, but you can't.
3. Stretch marks happen. Research indicates that they are genetic, and you will get them no matter what happens in terms of weight or creams or what-have-you. That said, if it makes you feel better to rub an expensive cream on yourself, go on. Do whatever soothes your brain, because you will be anxious about stuff. Which brings me to:
4. Anxiety. You will be anxious about things outside your control (OMG WHAT IF I HURT THE BABY WHEN I TRIPPED OVER MY OWN FEET AND FELL ON MY STOMACH ON THE BED?) and things within your control (WTF HOW DO YOU BATHE A BABY IN THAT RIDICULOUS TUB?) Mitigate stress by being ans immediate as possible with things within your control. So I felt some bathing-baby anxiety. And I bought the tub to look at and play with and googled "giving the baby a bath" (BTW, don't do that. There are sickos in the world) and asked a nurse at one of our "How to Have a Baby and Not Screw Up Too Badly" classes. I suggest you do the same. Because you can't get rid of all of your stresses, but if you can mitigate some of the smaller ones, you will be much calmer. Oh, and my midwife is pretty sure I didn't hurt the baby by landing on my stomach -- when I told her about it, she laughed.
5. Speaking of anxiety, nest. It will also mitigate your anxiety. Once, during a particularly stressful time, my husband found me in the baby's room moving around her clothes, and then moving them back. And I knew this was ridiculous. But it calmed me. So my husband came in, and sat down, and watched me rearrange the baby's wardrobe and then put it all back in its original places. You'll be aware that what you are doing is illogical, but then again, it's calming. So do it.
But it occurs to me that there's some stuff you don't really get from the books. I'll try to warn you if TMI is coming, so you can avoid it.
1. No matter how much you think you will not have a problem doing what you normally did, you will. Case in point: at eight weeks pregnant, I became unable to (1) run and (2) wear high heels, ever.
Prior to the infant, I could run 2-3 miles 3-4 times a week. After infant, I suited up for a run and made it ten feet before my knees ached miserably and I was winded. As for the high heels -- let's just say I used to be able to handle working a ten-hour retail shift on a stone floor in four-inch heels. I mean, my feet ached a little afterwards, but I could walk the next day. At 8 weeks, I wore my favorite comfy stacked-toe four-inch heel Wonder Woman boots and could barely limp around the apartment the next day. At now 8 months (or 7, depending on which book you read) I am unable to cross my legs without regretting it, sleep more than 3 hours at a stretch, tie my own shoes properly, bend over to pick something up without having to make a plan, lie on my back without it becoming painful, and sit or rise from a sitting position without some struggle and prayer. I am a graceless hippo wearing mascara.
2. If you don't know where the bathroom is, you should not go to that location. In fact, you should be able to get to a bathroom in no more than thirty minutes from the last one. Or you should invest in adult diapers. Because you may think you can hold it, but you can't.
3. Stretch marks happen. Research indicates that they are genetic, and you will get them no matter what happens in terms of weight or creams or what-have-you. That said, if it makes you feel better to rub an expensive cream on yourself, go on. Do whatever soothes your brain, because you will be anxious about stuff. Which brings me to:
4. Anxiety. You will be anxious about things outside your control (OMG WHAT IF I HURT THE BABY WHEN I TRIPPED OVER MY OWN FEET AND FELL ON MY STOMACH ON THE BED?) and things within your control (WTF HOW DO YOU BATHE A BABY IN THAT RIDICULOUS TUB?) Mitigate stress by being ans immediate as possible with things within your control. So I felt some bathing-baby anxiety. And I bought the tub to look at and play with and googled "giving the baby a bath" (BTW, don't do that. There are sickos in the world) and asked a nurse at one of our "How to Have a Baby and Not Screw Up Too Badly" classes. I suggest you do the same. Because you can't get rid of all of your stresses, but if you can mitigate some of the smaller ones, you will be much calmer. Oh, and my midwife is pretty sure I didn't hurt the baby by landing on my stomach -- when I told her about it, she laughed.
5. Speaking of anxiety, nest. It will also mitigate your anxiety. Once, during a particularly stressful time, my husband found me in the baby's room moving around her clothes, and then moving them back. And I knew this was ridiculous. But it calmed me. So my husband came in, and sat down, and watched me rearrange the baby's wardrobe and then put it all back in its original places. You'll be aware that what you are doing is illogical, but then again, it's calming. So do it.
Thursday, June 9, 2011
You know what I've got?
I've got a daughter who gets the hiccups a lot.
And they tickle. Which means that occasionally, I just start giggling because somebody's tickling me on the inside.
A lot.
And they tickle. Which means that occasionally, I just start giggling because somebody's tickling me on the inside.
A lot.
Wednesday, June 1, 2011
Imma tell you a little something
about being pregnant in the South in the summer.
You don't need to tell me it's hot. I know it's hot. I am currently carrying around my own personal heater who kicks.
Or, for an analogy that will make sense to those of you who have never been pregnant, imagine an extra twenty pounds on you. Yup. That's a lot of padding.
Here's what I want: I want a totally empty pool. I want to get into water up to my neck and just stand there. Forever, maybe, or for at least an hour. Maybe I'll walk around. Maybe I'll just stand there.
You know. Chilling.
You don't need to tell me it's hot. I know it's hot. I am currently carrying around my own personal heater who kicks.
Or, for an analogy that will make sense to those of you who have never been pregnant, imagine an extra twenty pounds on you. Yup. That's a lot of padding.
Here's what I want: I want a totally empty pool. I want to get into water up to my neck and just stand there. Forever, maybe, or for at least an hour. Maybe I'll walk around. Maybe I'll just stand there.
You know. Chilling.
Saturday, May 28, 2011
Motherhood Lesson No. 1* (Okay, probably not the real first one I've learned, but definitely the first one I've blogged.)
I am starting to wonder why my bulging stomach means there is only one topic of conversation I can have.
Motherhood.
Subcategories:
1. How bad labor and delivery is. I won't go into too much detail, but "tearing" has been said to me more than once. Way to pump up the mom-to-be.
2. Women who have catastrophic things happen during labor and delivery.
3. Stories about their pregnancies and experiences as a mother. Mostly the pregnancy stories are negative (except for my friend M who always tells me how much she loved being pregnant and that really does make me feel somewhat sunnier about my swollen extremities and acne) and the motherhood experience stories run the gamut.
4. Breastfeeding.
5. How I'm going to deliver this baby (currently, I'm planning on a walking epidural, not that it's any of your business. Not that you have been nosy enough to ask, but people have, and I feel like the only people who have a right to ask that are the Merry Midwives.)
6. Diapers. For the record, disposable, and if you hate it you can suck it. I've done extensive research, and cloth really isn't all that more environmentally friendly, what with the energy wasted in washing and soap and stuff.
7. (And this is my favorite) How big my stomach is.
And I love my daughter. When she kicks, I pretend like I'm annoyed (and occasionally at 5am I am annoyed) but mostly I love it when she lets me know she's there. I'm so happy I'm having her, and I've started planning her nursery and buying teensy little hats and socks (the socks will break your heart) and a blue corduroy stuffed elephant because it looked like it needed a friend.
But I have been growing frustrated with the general public's inability to see past the protuberance and realize that I have a brain.
However, today I think I figured it out.
So I'm visiting my in-laws, and we stopped to pick them up some Subway. I'm in line, and I've already got my milk in my hand. There's a woman in line ahead of me about my age who looks at the milk, then me, and smiles. I smile back. It's nice to have a good choice acknowledged.
She orders a sub and a pizza, and requests an extra box to use when she splits the pizza amongst the kids. We chat about what a good idea that is. I get my husband to hold the door for her on her way out.
We order our food. As we're leaving, I see the mom and her husband and kids picnicking in the parking lot. She catches my eye again and waves like we're old friends. And that's when it hit me.
I'm in the Motherhood Sisterhood now. My application is signed and accepted and sticking way out in front. I'd been inducted and all that is happening in the mommy chats is, essentially, woman's wisdom to me, the neophyte.
So while I reserve the right to be annoyed, I am also grateful. It's nice to be in a club like this -- membership is international. We'll know each other just by sight -- no special handshake needed.
Oh, and when I am inducting new members, I promise to be more like M. Some (okay, a lot) of stuff will suck, but it will be worth it. And some of it will be awesome. I will tell you the truth about the stuff that sucks, though I will not focus on it, and I will do my best to help you focus on the awesome.
*I promise this won't become a Mommy Blog, though it will be hijacked from time to time (probably with increasing frequency through the end of this year.)
Motherhood.
Subcategories:
1. How bad labor and delivery is. I won't go into too much detail, but "tearing" has been said to me more than once. Way to pump up the mom-to-be.
2. Women who have catastrophic things happen during labor and delivery.
3. Stories about their pregnancies and experiences as a mother. Mostly the pregnancy stories are negative (except for my friend M who always tells me how much she loved being pregnant and that really does make me feel somewhat sunnier about my swollen extremities and acne) and the motherhood experience stories run the gamut.
4. Breastfeeding.
5. How I'm going to deliver this baby (currently, I'm planning on a walking epidural, not that it's any of your business. Not that you have been nosy enough to ask, but people have, and I feel like the only people who have a right to ask that are the Merry Midwives.)
6. Diapers. For the record, disposable, and if you hate it you can suck it. I've done extensive research, and cloth really isn't all that more environmentally friendly, what with the energy wasted in washing and soap and stuff.
7. (And this is my favorite) How big my stomach is.
And I love my daughter. When she kicks, I pretend like I'm annoyed (and occasionally at 5am I am annoyed) but mostly I love it when she lets me know she's there. I'm so happy I'm having her, and I've started planning her nursery and buying teensy little hats and socks (the socks will break your heart) and a blue corduroy stuffed elephant because it looked like it needed a friend.
But I have been growing frustrated with the general public's inability to see past the protuberance and realize that I have a brain.
However, today I think I figured it out.
So I'm visiting my in-laws, and we stopped to pick them up some Subway. I'm in line, and I've already got my milk in my hand. There's a woman in line ahead of me about my age who looks at the milk, then me, and smiles. I smile back. It's nice to have a good choice acknowledged.
She orders a sub and a pizza, and requests an extra box to use when she splits the pizza amongst the kids. We chat about what a good idea that is. I get my husband to hold the door for her on her way out.
We order our food. As we're leaving, I see the mom and her husband and kids picnicking in the parking lot. She catches my eye again and waves like we're old friends. And that's when it hit me.
I'm in the Motherhood Sisterhood now. My application is signed and accepted and sticking way out in front. I'd been inducted and all that is happening in the mommy chats is, essentially, woman's wisdom to me, the neophyte.
So while I reserve the right to be annoyed, I am also grateful. It's nice to be in a club like this -- membership is international. We'll know each other just by sight -- no special handshake needed.
Oh, and when I am inducting new members, I promise to be more like M. Some (okay, a lot) of stuff will suck, but it will be worth it. And some of it will be awesome. I will tell you the truth about the stuff that sucks, though I will not focus on it, and I will do my best to help you focus on the awesome.
*I promise this won't become a Mommy Blog, though it will be hijacked from time to time (probably with increasing frequency through the end of this year.)
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