Tuesday, February 26, 2013


If you are a close friend in real life, you know that I have crazy dreams.  And by crazy, I really mean certifiably insane dreams.  All my life, I've been one of those people who remembers my dreams--I actually still remember dreams that I had as a kid.  I've heard that this means I don't sleep soundly, and I'm going with it, given that I'm always tired (or at least it's a good excuse to whine about being tired...). Whatever the reason, my dreams are vivid, realistic, and most often a little on the bizarre side.

At about 2:00 am this morning, I woke up from one of the worst dreams of my life.

I woke up whimpering--crying without actual tears--and so profoundly sad that it took more than a few minutes to realize that I had actually been asleep.  I woke up from any parent's worst dream--that my child had died.

 Now, in reality, I know NOTHING about that kind of pain. I have friends who have lost children, and I absolutely in no way claim to understand their anguish. All I have is my imagination--and the memory of what it felt like for those 10 weeks we thought Amelia wasn't going to survive.  I can tell you, just from that alone--this is the worst kind of tragedy.  Losing the love of your life (and your kids ARE the loves of your life)...it's excruciating. Soul-emptying. True devastation.

I dreamed that Amelia died.  We were planning her funeral. The dream was so vivid that I remember holding her, feeling her in my arms as she passed away quietly. I remember going through pictures on our computer to create the funeral program, sobbing violently.  In this dream, my mother was alive, and she was crying with me.  She and I watched a forest burn in the distance...symbolic probably of the loss we were experiencing.  It was gut-wrenching on many levels.

I wish I could say I have no idea where this dream came from...but I can't.  This is definitely a latent fear of mine.  Because we don't know what is "wrong" with Amelia, we don't know anything about her life expectancy.  Whatever causes her many conditions is so rare that it can't be identified. All we know is that her brain isn't completely developed, her kidneys are damaged (but maintaining nicely), her heart has some abnormalities, and all of her--every organ, every nerve--is TINY.  She's doing well, but we have no idea of what to expect in the future. We may never know.  That, in and of itself, is the stuff of nightmares.

I wish I was a glass half-full kind of person who could really "live in the moment", not waste any time worrying about the "what might happens"--but that's not me, friends.  I'm a worrier by nature (see this post).  If I'm being honest, my fears kept me from totally bonding with Amelia right away. I was so fragile after the whirlwind surrounding her birth that I just couldn't risk falling in love with her and having her snatched away abruptly.  Fortunately, she's just incredibly lovable, and after the raging post-birth hormones finally evened out,  I fell hardcore in love with the tough little one-pounder.

It doesn't affect me every day. I don't waste time stressing over this on a daily basis. Instead, it just sneaks up on me at odd moments--like when I'm watching her play with her toys, making them talk to one another, or when I watch her manipulate the iPad with the ease of an adult--and for that moment, I'm overcome with the fear of losing her.  She's my heart, that little one.

Cross your fingers for a good night's sleep tonight.

Sunday, February 24, 2013

Random Ramblings...

Nothing heavy to write about today--which is not a bad thing, in my opinion--just some random craziness from this insane life.


Marty has handled the funk very well this time around.  There's not really an adequate word to describe my relief. I think we have it down to a science, now.  When it starts coming on, he starts taking round-the-clock decongestants, along with what he calls my "witch-doctor" supplements (AKA Zicam, Airborne, etc.). Part of his issues with his lungs are because he aspirates at night. He has a paralyzed vocal cord (an awesome left-over of the brain tumor). During the day, he can protect his airway by swallowing with his head turned to the side, but at night...it's a different story. So, when he's sick and has drainage, it can run straight into his lungs when he sleeps.  One thing that he can do to help this is to prop himself up while he sleeps, which makes it more likely for drainage to run into his stomach versus his lungs (and wow...this drainage talk is disgusting. Sorry about that.).  This time around, we decided on an insane set-up that makes it look like we're trying to redecorate our house, rather than keep him healthy. He sits propped up on the couch, and pulls the loveseat over to use as an ottoman.  Hard to describe but it works kind of like a Laz-E-Boy (which I wish we had, and I can't even believe I'm saying that because those suckers are hideous! In our next house, we will have one, though, if nothing else but for this purpose). I think it helped...he only ran a fever for a short time and his lungs sound great today. He says he's feeling better today. Bullet dodged.

They're all snotty and nasty, but hopefully on the mend.

I casually mentioned to Amelia something about taking dance lessons and she was all like, sure, I can be like Angelina Ballerina, and can we go to the store today to get a ballerina outfit??  So off we went. We tried Once Upon A Child first, and they had a few things, but nothing that would really fit her tiny butt.  Then, we went to hell Wal-Mart, and they had a selection of dance items, but again--nothing in the 18 month size. I was ready to give up, then looked at that little hopeful face, and decided that, come hell or high water, I was finding a way to make that girl into a ballerina. So...I bought a pair of 18-36 month tights, some slippers that are kind of ballet-like, and a 24 month long-sleeved onesie to substitute for a leotard, and we called it a day.  The result--what I like to call a redneck ballerina, but she was thrilled and of course doesn't know the difference.  She didn't notice the saggy tights or the onesie that hung a good two inches below her crotch.  I plan to continue the hunt for real ballet clothing, as we are going to observe a dance class hopefully next week and then maybe actually start classes. I want this for my girl so badly--partly because I never got to take dance lessons as a kid, but mostly because I think it would be very good for her. She's so outgoing at home, but so introverted at school and in public.

Doing a few ballet moves...

She's really fascinated by the shoes.

Yesterday, while we were on our little adventure looking for ballet clothes, Marty texted me to tell me he was taking Anderson to the park. About 30 minutes later, I texted to ask if they were having fun, and Marty's response was "Not really. He's having a very autistic day."  Sadly, I knew what this meant for the little guy.  Lots of anxiety and echolalia. Apparently he couldn't climb up one of the structures on his own and that sent him into a tailspin of anxiety.  One of the things he's started doing lately when he's upset is asking if he can do something (and the answer is usually yes...), but then he says he can't. A conversation might go like this:

Anderson:  "Can I go down the slide?"
Me:  "Sure. Go ahead."
Anderson: "I can't! I'm too big!"
(Insane crying and whining ensue)

Obviously that makes no sense; he's not too big. This is just how his frustrations manifest. Let me tell you, it can be frustrating to the parents. He will ask over and over if he can do something and then repeat this same scenario.  We try to "reset" him by getting him engaged in something else. Sometimes it works, sometimes it doesn't.  He's definitely been more challenging the past few weeks. We are hoping it's a phase.

He looks so big here!  My sweet boy...notice that the background of my pics NEVER shows a nice, clean house. This house was spotless yesterday. It lasts oh...maybe 30 seconds.

Marty and I are self-professed coffee junkies. I blame him for this ridiculous and expensive habit--he got me addicted in college.  In our early days, we would just drink Folgers or, gasp, Kroger brand coffee! Not sure when it all changed, but now I can't stomach that funky stuff. I only drink that in emergency situations.  We used to order gourmet coffee online  (that stuff is A-MAZING. If you're wealthy and can afford it, try it...), but then realized how ridiculously pricey that was. Unfortunately, going back to the cheap stuff was difficult.  We usually get whatever "good" coffee is on sale, or cheapest--either Starbucks or Dunkin' Donuts (my personal favorite).  Well...our coffee world changed last week. We invested in a coffee bean grinder for the first time ever. It was our Valentine's Day gift, and it is fabulous! I did a little research, decided a burr grinder was what we wanted, and got a fairly cheap one. Bought some Trader Joe's beans at the recommendation of a co-worker, and wow. Mind blown.  Marty got a french press as a get-well gift from his bosses when he was in the hospital, so he's been enjoying the best coffee ever!  If you like coffee, I recommend getting a grinder. Freshly ground beans have absolutely no bitterness. It's heavenly.

I always see these artsy shots of really hip coffee cups with latte with the art-in-the-foam-topping on Instagram.  I have these cups, from our marriage place settings. They are hideous.  The coffee is still delish.

That's about it from around here. Happy Sunday, friends.

Friday, February 22, 2013


That should be said the same way that Wilford Brimley says "The Diabeetus" in his commercials. It also MUST have the word "the" in front of it--I would never say, "I have PTSD"; I would say, "I have THE PTSD". It's like "the Walmart" or "The Krogers" (the s on the end is intentional...).

My life has been one barrage of medical tragedies--seriously.  A brief summary...my mother was diagnosed with breast cancer when I was 10, and she died when I was 12. Many, MANY family crises later...I'm in college and I meet Marty. Fall in love, blah, blah, blah...and he is diagnosed with brain cancer about 9 months later.  The outlook is grim, odds are not in our favor with the type of cancer he has (anaplastic oligodendroglioma, if you're curious...).  He undergoes surgery, chemo and radiation.  Fortunately, 13 years later, he remains cancer-free and defies the odds.  In that time, he's also had melanoma, but it didn't require any further treatment other than removal.  Not as bad--but still frightening, given what we'd already been through.

Fast forward to 4 years ago, when, after years of fertility issues, we undergo IVF and I'm pregnant with the twins.  At 22 weeks, I find out that Amelia "has" Trisomy 18 (which she doesn't...you can read about that here), and we prepare for her to either be stillborn, or to die shortly after birth.  In a word--nightmare.  It's not even describable, that feeling.  Fortunately, again--positive outcome. She doesn't have Trisomy 18, and she's still here, albeit tiny, changing lives every day.  However, we had to endure "the roller coaster ride of the NICU"--and every NICU parent reading this is collectively rolling their eyes right now, because that phrase is said OVER AND OVER when you have a child in the NICU.  Unfortunately, it's true. Anderson contracted a serious infection in his PICC line when he was there, and he got pretty sick. We were NICU parents for 99 days...that is 99 days of staring at monitors, watching your child's sats and heart rate, hoping that everything is going to turn out okay. Nerve-wracking medical experience, and that's an understatement.

This past August, we returned from a trip to NYC--just Marty and I, the longest vaca away from the kids we'd had up to this point. The day we are set to return, he comes down with a respiratory infection.  Less than 24 hours after getting home, he's admitted to the hospital for pneumonia.  He's there about three days, and starts to get better. Then he gets worse. Then he gets dramatically worse.  They do a surgical biopsy of his lung, put him in a rotoprone bed (looking at that honest-to-god triggers anxiety...) and keep him on a ventilator, tell me it's very, very serious.  The diagnosis is ARDS, and the outlook can be grave.  He's in intensive care for a week, in this bed for five days. Five impossibly long, incredibly frightening days. On the scariest of nights, I spend the night in the ICU waiting room. And then, when I'm exhausted beyond belief, I sleep fitfully at home.  I go through the motions--wake up, take the kids to preschool, spend the day at the hospital, return home to the kids around dinner time, do the bedtime routine--trying to keep some semblance of normalcy for them.  After about a week, things start to improve. One horrible bout of ICU Psychosis and about two weeks of rehab later, and he's home.  Since then, he's been hospitalized once for pneumonia--fortunately, just a three day stint, which seems like nothing compared to the five weeks in August.

All of this--all of my personal experiences with illness and loss and near-loss--all of these lead to a fun new diagnosis of "the PTSD".  Post-traumatic stress disorder, for those of you not versed in the psych stuff.  It manifests in me as extreme anxiety, for which I have to take medicine (and I am not the least bit ashamed to say that. It has changed my life for the better, and in turn, the quality of  life for my family..). I have also battled panic attacks, which are awful. I have flashbacks to August--and I literally have to shake myself to get myself focused on something else.  My sleep suffers, my body suffers--it ain't pretty.  I'm working on it--I go to therapy and read self-help books, and generally try to tend to my mental health--but it's a battle, and it's definitely real.

This week, Anderson has had the funk. Same funk Amelia had a few weeks ago. Unfortunately, when Marty was in the hospital in August/September, I ran out of sick days. My co-workers were magnificent and donated days to me so that I wouldn't have to take days without pay. However, I just found out that I can only use donated days for sick days directly related to the condition that caused me to use all of those days and take FMLA--Marty's illness.  The days taking care of Amelia didn't count.  Therefore, Marty had to stay home with Anderson and do the care-taking--which is my worst PTSD nightmare, because I do not want him to get sick!  But what do you do???  We don't have family in town to watch the sick kiddies--we have no real back-up.  Marty stayed home...and today, he's in the process of getting sick. 

So...blog-reading friends...if you could send us some sickness-fighting, good-health vibes, prayers, whatever you've got, we will take them.  I'm trying to be chill about the whole thing...making him take supplements and vitamins and decongestants, but "the PTSD" is flaring up. Hope we remain hospital-free in the next few days. Stay tuned.

Monday, February 18, 2013

Why I Love YouTube

Disclaimer:  YouTube is not paying me to say any of this, although they should! In fact, if they wanted to pay me for, it, I wouldn't turn them down...(are you listening, YouTube?)

This post is aimed at parents, soon-to-be-parents, or parents-of-babies-of-the-four-legged-variety--basically, anyone who has loved and nurtured a tiny being.  If you don't have a YouTube account (or really any online video/photo storage site), you need to get one immediately. Even if you have the settings on private, so that nobody can see your videos except you, DO IT.

See, this weekend, I've been in a little reminiscing mood.  When I feel like the kids are growing up way too fast (and they are...and they ALL do), I like to remember when they were little.  Because I have been documenting their childhood using my iPhone (and camera, for the earliest videos, pre-iPhone video camera--can you even believe there was a time when iPhones didn't record video? That's a whole 'nother post entirely...), and religiously uploading to YouTube, I can watch snippets of when they were little any time I want to.  Just a quick 30 second/1 minute video immediately takes me back to a time when we were sleep-deprived and they were precious tiny ones.  I don't know what I'd do without these videos, honestly. I knew when I got pregnant that this was essentially my one shot at children, so I've been making an effort to enjoy every single moment, and being able to relive their infancy is so incredibly important to me.

You don't have to pre-plan your videos--they don't have to all be special moments. Some of my favorite videos were taken on days when I was just bored and hit 'record'.  The ordinary moments are somehow even sweeter than some of the big ones.  Short clips are much faster to upload, so I try to keep them to between 30-130 seconds. Just enough to get some of the good stuff.

So...because I'm enjoying watching these videos, I'm going to share some of my faves here.  I will not, in any way, shape, or form, be offended if you choose to skip this part.  I mean, I don't know why you wouldn't enjoy seeing my kids being adorable, while my house is in various states of disarray in the background, my dogs constantly photobombing, my hick voice and Marty's even hicker (totally a word) voice...  But, if you ARE in the mood for some adorable-ness, enjoy these. I sure do.

Saturday, February 16, 2013


First of all, if you didn't read the title in your head the way that Prince says it here, please go back and re-read.

Thank you.

At work recently, I was whining about Anderson's elevator obsession, as I'm wont to do because ohmygod, elevators can get SO. DULL.  A friend made a comment that he gets a lot of "positive reinforcement" at home for playing elevators, so of course he continues to play the game.  Now, I didn't question any further because I like this person a lot, and I didn't want to get into a discussion about what she thinks I should and shouldn't be doing with Anderson. Believe it or not, I like to keep controversy away from work, especially when it comes to my kids. So...I made a quick comment about how I didn't mind that he plays elevators at all, just that I was a tad sick of the whole thing and ready for a new fixation, and we switched topics. It kind of stuck with me, though, because if she thinks it, then I'm sure others think it as well.

Here's where I stand on Anderson's fixations, which obviously are related to his autism. I don't mind them, and I don't mind supporting them.  They are part of who he is, and I stopped trying to change that a very long time ago.  Honestly, I'm ashamed to admit that I did try to change him.  When he was much younger--say, around 18 months old--he became a hand-flapper.  Of course, this is when I started thinking about autism, and like every other mother of a child with autism, at the time, I didn't want it to be true. So I tried to stop the behavior (thinking that would change the fact that he had autism? Obviously not very realistic, but when you're faced with something like this, reality isn't in the forefront of your mind. Trust me.).  He'd flap, and I would try to redirect him to something that might take his mind off of doing it.  I'd put a toy in his hand. I'd point something out to him. Or, in my darkest moments, I'd even scold him and tell him no. I am horrified now thinking about that, and ashamed.  He wasn't doing anything wrong, and I was telling him that what felt natural to him was in fact bad. I've forgiven myself, but still--not proud.

Here's the thing--playing with toys in a regular way doesn't interest him.  He's not going to sit down with a  paint brush and watercolors and paint a Toy Story picture.  He isn't going to go into the store and ask for a Spiderman toy, and come home and re-enact the cartoon.  To him, that is not fun.  What IS fun to him is playing elevators, albeit repeatedly, which does get a bit old.  He likes to look at how things move and work, and then take ordinary toys and turn them into moving machines.  He likes familiar routines, and playing the same game in the same way each day.  This is what makes him happy, and the one common thread that all mothers share, regardless of any disabilities that their children might have, is that they want to see their babies happy.  This is what makes him happy--and I am here to support it.

Does this mean that I don't want to help Anderson learn to function better in society? Absolutely not. I do believe in therapies to help him navigate life in a neurotypical world, mostly because I want him to be able to avoid the pain of other people's intolerance, but I have no interest in changing him--his personality and his likes and dislikes.  There's a difference there.

So, even though it does drive me crazy (but all kids drive their parents crazy sometimes...), we will continue to play elevators, and printers, and lawnmowers, and fans, and whatever other funky games our future has in store for us.  I mean, who could resist this face?

I so hope you left the Prince window open and listened to the whole song. I love that song--and that little short dude.  In fact, I think I'm going to add more Prince to my iPod right now...

Enjoy the long weekend, friends...

Wednesday, February 13, 2013

The Unknowns...

I've been thinking a lot lately about the enigma that is Anderson. Specifically, how even though he talks from the minute he wakes up until the minute he falls asleep, he really struggles with language.  His IEP puts it best..."Anderson has excellent auditory memory for sentences but does not process spoken language as well as expected, given his age...".  Essentially, he can repeat anything, but doesn't necessarily know what he's talking about.  He is making a lot of progress with using "original utterances" (aka non-echolalic phrases), but when he's sad or upset, he almost always reverts to echolalia.  What is interesting is that he always echoes a time in his life when he had the same emotions of whatever is happening in that moment--if he's feeling angry, he echoes a time when he was angry (or when someone was angry with him). If he's sad, he echoes a time when he was sad.  This is intriguing and often a little comical because he tells on himself a lot--he echoes what his teachers say when they are not so happy with him.  A common one in our house when he's angry, is, "ANDERSON! YOU will SIT in the SAD CHAIR!". Ummm...wonder who was in time out that day? :-)  Another common one is, "THAT makes me SO VERY SAD!"--another teacher line.  He even changes the expression on his face to match that of his teachers, which is definitely funny! He has a real knack for impressions.

Sometimes, his randomness isn't so fun, though.  Like the night he had a severe and sudden ear infection. He couldn't just tell us that his ear hurt, or that he didn't feel good--instead, he echoed times when he was stressed out. He wouldn't go to sleep--he just cried and echoed, cried and echoed.  He spiked a temp in the middle of the night and we realized that he was sick, thankfully, but it wasn't until the next morning when we saw drainage in his ear that we realized the real issue.  Obviously he was just fine after some antibiotics, but it was heartbreaking to realize that my baby, who knows so many words and has  perfect articulation, couldn't just tell me what was bothering him.  Of course, my overly reflective brain started really thinking hard about this, and I realized that if he can't tell me when he's in physical pain, he's certainly not going to be able to put into words when he's having emotional pain.  All you mamas out there know--there is nothing worse than not being able to help when your baby is in pain.  Wrapping my head around this was T-O-U-G-H. It also motivated me to get working on getting him more speech services, so that we can start helping him really develop that receptive/expressive language.

I am not in denial about the autism at all--definitely not like I was about a year and a half ago, when I didn't even want to say the word--but I think I am kind of clueless about the challenges that we are going to face. That one was certainly a little bit of a shocker, and I know that there are so many more that I'm not even aware of yet! If you know me at all, you know I'm a planner, and that I kind of freak out when I have to deal with a lot of unknowns.  Hope there's enough medication in the world to handle me these next few years...

In other exciting news, we *might* be starting to move out of the elevator obsession!  He's suddenly very interested in printers...he does a GREAT printer impression, and he's spending a lot of time using our computer desk to "print" papers. Guess we will be watching videos of printers soon--wonder if those exist?  In the meantime, though, he's mixing up his man buttons. Today, it looks like this:

Cats. So weird. :-)

Sunday, February 10, 2013

On Their 4th...

The kids' birthday is an incredibly emotional day for me.  I'm so thrilled that they are thriving and happy and have enjoyed another year of life, but I can't help but be reminded of the trauma that was my pregnancy and their birth, which leads to the most significant emotion--gratefulness.  Grateful that our story turned out much different than expected.

A slightly shortened version of the story:  I had contractions from about 15 weeks on. I had to take Terbutaline around the clock, and spent a night or two in the hospital. At a 22 week ultrasound, we were told that Amelia had Trisomy 18, and that she probably would not survive to be born alive.  We grieved--oh, how we grieved, but we knew we had to get ourselves together for the other little one in there.  We had weekly ultrasounds to check on their growth, and at 28 weeks, I was admitted permanently because of some scary things going on with potential cord compression, not to mention the contractions. I spent the rest of the time on continuous monitoring, getting two ultrasounds a week, biding my time.  We talked to the chaplain and the NICU team, we planned for bereavement photography for immediately after their birth, we talked about things like "comfort care", in the event that Amelia was born alive.  We walked the shaky tight rope between the elation of meeting our son, and the sheer bitter horror of planning to lose our daughter. It was tumultuous, to say the least.

On February 9th, I had my final ultrasound. Anderson's growth had also completely stopped, meaning that he was not being appropriately nourished, and we planned for my c-section the next day--at 32 weeks, 2 days gestation.  That day was a complete whirlwind--I don't remember much about it.  I remember a nurse trying to go ahead and start my IV, and she missed my vein twice (I may have said some very, very bad words...if that's never happened to you, let me tell you, it is AWFUL), got upset with me for writhing in pain, and left.  I remember my regular nurse, Martha, coming in the next day and saying she'd do my IV--and I was terrified! This woman was an older former L/D nurse who had been retired to the antepartum wing--her hands were shaky; she dropped my pills all the time! I was terrified after the previous night's agony, and then she proceeded to perform the very best IV stick of my life.  I was given all the fun pre-surgery drugs, Marty was taken away to put on the oh-so-attractive husband c-section gear, and things got underway.

I remember thinking one thought--"please, let him cry...please, let him cry...". I didn't expect Amelia to cry, but I was just clinging to hope that at least HE would cry.  Amelia was born at 1:09 pm--she didn't cry, as expected, but she was breathing, they quickly let me know.  At 1:10 pm, Anderson was born. My boy didn't disappoint; he let out the tiniest cry I had ever heard (up until that time; Amelia would cry a few days later and the sound was identical to a kitten--so tiny. I cried every single time she cried.). They were cleaned up and brought over to us.  We loved on them briefly, then they began their journey to the NICU. I went to recovery and got some wonderful Mag Sulfate for high blood pressure (aka the torture drug--I've never felt so sick in all my life).

Fast-foward about an hour...I was up in my room, waiting for them to bring Amelia up to us.  The bereavement photographer was setting up her equipment.  I was alone with her, and thankfully slightly delirious (turns out they give you the good drugs if they think you're going to be having to deal with bereavement).  I remember this next part as clear as if it happened yesterday, though--it was an earth-rocking, life-changing moment, and no amount of drugs can keep someone from forgetting one of those. My sister and brother-in-law came running into the room. They were so excited...they'd been in the NICU with the babies and a geneticist had evaluated Amelia--and determined that she did NOT have Trisomy 18. She was recommending transfer to a better NICU.  I remember apologizing to the bereavement photographer, who of course was thrilled and not the least bit upset at having to re-pack and leave. They quickly transported the kids to U of K Hospital, and the rest is history.

There are no words to describe how the whole experience changed me, us, forever.  We are eternally grateful for Amelia and Anderson--they've already taught me so much about life and love and acceptance.  They are amazing.

And now...because I'm all up in Reminiscing Alley...some photographs from their first days and their hospital stay:

Amelia Rebecca--1 pound, 1 ounce.
Anderson Martin, 2 pounds, 8 ounces

Friday, February 8, 2013

7 Unexpected Things I Learned From Parenthood

Parenthood has got to be the craziest adventure that anyone embarks upon in their lives.  I feel like I've done some slightly adventurous things in my life--I've gone white-water rafting on one of the most dangerous rafting rivers in the US, I've gone zip-lining over one of the most gorgeous parts of our state, I've traveled to Japan for three weeks in a group of teachers where I didn't know a single soul (okay, so it was really a pretty cush trip and I made plenty of friends, but still...I didn't know anyone going into it--and Japan is far away, right?)--none of this really compares to being a parent.  It's kind of funny...when I first found out I was pregnant, I thought, "Hey, I've been a babysitter for a very long time. Surely I know pretty much all I need to know to take care of some kids." How painfully naive that is.  To get prepared for being a parent, the most important thing you can do is acknowledge that there's no real way TO truly prepare.  This means that the parenting experience is an educational one...you learn something new almost every day.  Marty and I were recently talking about some of the disgusting joyous things we've learned, and I thought that it would make a good blog post--and my hope is that if you're a parent, too, you'll comment and share what YOU'VE learned.

Without further ado, 7 Unexpected Things I Learned From Parenthood:

7)  Even when you THINK your carpet/floor is clean, it's filthy. Infants and young toddlers who are starting to scoot and move WILL find unexplainable, unidentified objects on your floor. I don't care if you just vacuumed, swept, mopped, scrubbed, Roomba'ed 3 minutes before, they will find something funky, and it will head toward their mouth, lest you intercept it.

6)  Pre-Child, you have a hell of a lot more time and money than you realize.  I wish I knew where all of our money that we made pre-kids went, because it sure isn't in my bank account! However, it must have existed, because now we somehow manage to eat and clothe ourselves, and yet pay for a monthly childcare/preschool payment that is twice our mortgage.  The same goes for time...and seriously, if you're considering becoming a parent, please relish your time right now because from that first sleepless night until probably the day the kid moves out, it is no longer YOUR time.  Now, I'm not saying that I don't love my time with my kids, because they're amazing and funny and pretty darn enjoyable, but sometimes I definitely wish I had just a few real minutes to myself every day.  Sometimes it happens, sometimes it doesn't.

5) If you think you're an anxious person, you don't know anything yet!  My kids have evoked an anxiety within me that I never knew existed (Marty is laughing as he reads that, thinking about what an understatement that is...). Wait a second, though, before you take that as a bad thing.  The anxiety comes from that deep, unequivocal love for my kids. I'm anxious thinking about them getting sick. I'm anxious about whether or not they know just how much I love them, how they seriously completed me when they were born. I'm anxious about whether they will learn what they need to learn to lead a productive life. I'm anxious about whether they'll find love, and deep friendship, and all of the other things that make life beautiful and worthwhile. I'm anxious thinking about that inevitable day when someone hurts their feelings, makes them hurt.  I carry that around with me, deep in my subconscious, mind you (I don't stress about all of those things every day or anything!), and it's hard. It's also totally worth it.

4)  The speed at which a child can expel bodily fluid has GOT to be faster than the speed of light.  When Amelia and Anderson were in the NICU, they could, ahem...'dirty' an incubator within 1.2 seconds.  I saw poo shoot with such force that I swear, had anyone been in the line of fire, there would've been an injury. Think salt rifle or something. :-)  Unfortunately, lately, I've seen some sneezes that make Flubber look like a little silly putty. Pre-kids, had I seen a sneeze like that, I'm certain I would've physically gagged, but now I just kind of chuckle, grab a Kleenex, and wipe all while still holding my cup of coffee.

3)  There is nothing so glorious as nap time.  I'm not talking about nap time for me--I'm talking about nap time for the kids.  There have been days so hectic around here that I pretty much get a tear of joy in my eye when I see the clock nearing noon.  That 1-3 hour time period mid-day when you can either actually get something accomplished or not be forced to repeat random phrases about elevators is truly blessed.  Sadly I think mine are getting closer to giving up naps altogether, which breaks my heart.  I'm hoping to at least institute a mandatory 'quiet time' in their rooms when this happens...

2)  Poo in a training potty is WAAAY grosser than poo in a diaper.  I know "grosser" isn't a word, but prim-and-proper "more gross" doesn't do this justice. This is a recent item on my list, and one that surprised me!  We were late in the potty-training game and I was so excited for them to use the real toilet! Unfortunately, Amelia's tiny hiney doesn't fit on a regular toilet seat. In fact, it doesn't even really fit on the little seat you put ON the regular toilet seat--she's too small and her butt slips through and startles her, which she doesn't like (and rightfully so). So, she uses a little training potty that's nice and low to the ground.  I couldn't WAIT for her to finally get the concept of pooping on the potty...and then it happened. I don't know if it's the fact that, when it's in a diaper, it's...smooshy and patty-like (I KNOW! SO GROSS!) and less like actual real, adult poop, but when I have to dump out that little tray that has poop in it, and some kind of sticks to the sides, I gag.  How in the heck can I have wiped butts, changed an unbelievable amount of diapers, and gag over that? I mentioned it to Marty, and he agrees that it definitely takes disgusting to a whole new level. Glad it isn't just me.


1) You have no control over your heart when you have kids. I've heard the cliche that "having kids is like having your heart walking around outside your body". I'm not an overly sappy type and probably rolled my eyes at that more than once, but wow is it the truth. Despite the insanity that is my house probably 75% of the time, I love those kids more than I ever imagined I could love anything. Kids make you feel powerful and exhilarated, and yet exposed and vulnerable all at once. It's the most disconcerting, awe-inducing feeling ever. I recommend it. :-)

So the kids' 4th birthday is Sunday! I cannot believe that they will be four. This time four years ago, I was in a hospital bed for the 30th consecutive day, dealing with pre-eclampsia and wondering when we'd have to deliver. Little did I know that the next day, they'd tell me it was time, and the day after that, my two miracles would enter the world. We are keeping it low-key this weekend, celebrating with just us, and then getting together with family for a real party in April. Right now we are all still recovering from sickness, as is a lot of our family, so we just decided to wait until we are all healthy and able to enjoy.  They were actually due in April, so it's like a party around their full-term due date. :-)

So share with me...what is something that YOU have learned from parenthood??

Tuesday, February 5, 2013

On Mom Guilt...

As far as we know, Amelia is what we consider "neurotypical". She has some speech articulation issues, which I find adorable at this point ( eg. "Ho-wee Mo-wee!" for Holy Moly; "Goyah" for Girl, etc.), and she can be very shy in social situations, but otherwise seems pretty darn "normal" (whatever that is. In my opinion, NOBODY is completely "normal"...).  She loves Mickey Mouse Clubhouse, specifically Minnie Mouse and Daisy Duck, loves to play with cars and trucks and stuffed animals, loves horseplay and being tossed and flipped all over the place, and enjoys art. She is also one of the most empathetic children I have ever known--she bursts into tears if she thinks you're upset with her. She will even cry if she sees me crying (okay, maybe I accidentally made her cry once by pretending to cry..it was not my proudest parenting moment. Hey, I didn't know she'd actually cry!!). If she accidentally hurts, you--let's say, she accidentally scratches you or bumps into you--she apologizes and kisses you wherever she thinks you hurt. I think she's pretty socially average, for a 3-year-old, and pretty awesome, too. 

 Sometimes, though, I kind of worry that Anderson's, shall we say... "interesting"...social behaviors have impacted Amelia's social functioning.  Anderson didn't really start attempting to play "with" Amelia until probably 6 months ago, and prior to preschool, the kids had an in-home sitter--so the opportunities for same-age interaction for her was limited, to say the least.  Now, they "play" together daily, but I use that term loosely because really, it's more Anderson convincing Amelia to participate in elevator play in a very ritualistic way--he makes her go in and out of the elevator (bedroom doors) over and over, sometimes asking her to repeat certain words each time.  She accommodates him probably 75% of the time, which I personally think is extremely generous of her, since I honestly get tired of the elevator game like two minutes after we start playing.  Sometimes, she gets adventurous and tries to get him to deviate from the game in some way--yeah, 9/10 times, that's a no-go for Anderson.  Other than that, they don't play together. They still participate in parallel play quite a bit, but they're really getting to the age where that should fade (They'll be FOUR on Sunday! Where did the time go???).  Bottom line--we didn't provide either of them with a lot of same-age peer time until preschool, and the socialization with Anderson was not quite typical.

Amelia has received two progress reports from preschool now. The first time around, we had a parent-teacher conference, and her teacher spoke very highly of Amelia but indicated that her biggest concern was Amelia's lack of interest in playing with friends.  Amelia would participate successfully in circle time and other whole-group educational situations, but when they split into centers with friends, she preferred to play alone. She wasn't alarmed, but said she just hoped Amelia would make a friend.  I wasn't too concerned, but I did encourage her to play with others.  We just received the 2nd report, and, to make a long story short, there is some concern with Amelia's language development, in addition to the lack of socialization.  Now, I just got back from out-of-town, so I haven't had time to talk to Marty or her teacher about it (I just read it like, 30 minutes ago), but I'm starting to grow a bit more concerned. I know we work really, really hard to provide language-development opportunities for Amelia, and I know she is super-smart and has a great memory, so I am not sure what's going on here.

 Here's where I'm at:  I can't help but let a little bit of guilt sneak in because I feel like we've devoted so much time to Anderson and figuring out his diagnosis and everything that goes along with it--maybe we've overlooked something? I don't know...I just don't know.  This is one of the most difficult things about having children of the same age--sometimes, there's just not enough of you to go around, and everyone is needy.  It would break my heart to think I neglected something going on with her because I was so overwhelmed with what was going on with him.  My plan is to try not to worry too much about it until I can speak with the teacher, but who am I kidding? I am the most anxious person you'll ever meet; I'm going to worry.  Looks like I'll be having a parent-teacher conference soon.

In the meantime, of COURSE I have to add a little humor to this post. It wouldn't be right if I didn't.  As described above, Amelia was playing along with Anderson's elevator game pretty well this past weekend. I bought some Tap Lights (remember those awesome infomercials?) at Wal-Mart, we stuck some push-pins in the wall, and voila, real man buttons!  Of course, their curiosity wouldn't let them leave the man buttons on the wall; they had them all off and on the kitchen table in about 30 minutes.  Anderson was perseverating on some small elevator nuance, and Amelia was kind of doing her own thing; I was drinking coffee on the couch and only half-listening while watching the news. All of a sudden, this is what I hear Amelia say:

"Hi, little man button! We're going to put you back on the wall! Hey, maybe a Mouseketool will help! Everybody say, 'Oh, Toodles!'".

Only she would find a way to incorporate HER favorite--Mickey Mouse--with HIS favorite--elevators. I love that girl.

Monday, February 4, 2013

The Trip House

Hello, friends! I started to post about how I started this little trip to Columbus with such excitement for both good intellectual stimulation and some good quiet time, and ended up coming down with Amelia's nastiness from last week, which put a bit of a damper on the whole thing--but I decided that's way too "woe-is-me" and dull. So...I decided instead to talk about Anderson's first experience at a hotel--AKA "Trip House".

A little background--last week, Amelia came down with a bad respiratory virus that led to pneumonia. She was a hot mess. If you're a FB friend, you know that Marty got very, very sick this year and in fact almost died (harsh, but incredibly true) of complications from pneumonia. His lungs are still recovering, so obviously we want to keep him from getting sick. Actually that's a major, major understatement; I actually wish I could put him in a bubble for the rest of cold and flu season. No joke. I'd put him in a real bubble. Or on total house arrest. He's having none of that. But I digress...with Amelia having such a bad illness, I used Priceline to get a great deal on a hotel room for two nights. They packed up in a hurry and were off (sidebar: does anyone else's husband seriously overpack when taking kids anywhere on his own? When I saw everything Marty had packed, I was in awe. I mean, enough food to survive for weeks, half the toys..it was a tad ridic).

Now, here's where it got interesting. Anderson is visually uncomfortable in new situations--part of his autism. He doesn't tantrum, and I am grateful for this. Instead, his coping mechanism is to TALK. I mean serious, serious talking. Some is echolalic, some is narrative (where he just narrates everything he sees and thinks), but often it is...well...pretty humorous. I mean, if he's really agitated/upset, we don't sit around and laugh, but when he's just taking it in and processing, it can be amusing. I told Marty to text me to let me know how things were going. This is the first message I got:

I cracked up. The Campbell House does kind of look like a big house--it's older and big. And of course...it has an elevator. He was apprehensive at first (hence the not wanting to go in the house). He found the elevator but of course wanted to use the steps instead, as he doesn't actually RIDE elevators, he just watches them and emulates them--pushes all the buttons, things that annoy the general public. I can only imagine what he thought when he saw the room with the bed...he was not impressed with the thought of staying there. 

Here was the next message:

This was where I started to get a little nervous--what if he didn't settle in?  We haven't had a situation yet where he hasn't been able to acclimate, but I know there's a first for everything.  Apparently he just needed to see the entire environment. After Marty got him into the room, he started to settle down, although the talking a mile a minute didn't stop.  At first, he had no interest in taking a bath in the tub, but of course after Marty got him all wiped down and ready for bed, he wanted to take a bath--because it's part of our nightly routine. So...he took a bath. That's when he started to enjoy the experience. I refrained from texting much, mostly because a) I wanted Marty to be able to give Anderson all his attention, and b) I had a sweaty, snotty, grouchy girl flopping around in my bed. This was his next message:

I had to totally stifle my laughter so as not to disturb Typhoid Mary next to me, but OMG, so funny!  I was also relieved because I knew he was all good. This was when they had finally exhausted the wholes"explore every aspect of the room" thing and were in bed.  The saying "Hi, Dad" from the other side of the bed is cute enough, but the awesome Dave Seville and the Chipmunks reference--priceless. If you're wondering, there's a scene in one of the movies where Dave is looking in a mirror and shaving. Anderson thought the headboard was a mirror...and that's how his mind works. they watched the UK basketball game, and finally the boy quit talking and fell asleep around 11:30--3 1/2 hours after his bedtime. 

The next morning, they woke up, ate, and left. Marty warned the teachers that they might hear random murmurings about the "trip house" and "night mirror", and went to work. When he picked Anderson up from preschool, the first thing he said when he got in the car was, "Hey Dad, I want to go to the trip house. I want to push the buttons, and go up the steps, and take a bath, and get in the big bed, and watch basketball,  and see the night mirror, and go to sleep." He remembered EVERY. SINGLE. DETAIL. In the exact order. Can't argue that he doesn't like routine. :-)

Saturday, February 2, 2013

Conference Time!

I'm typing this post from my cozy, warm, QUIET hotel room at the Hyatt Regency Columbus. I am fortunate enough to be able to attend the National Reading Recovery/Literacy Conference, which is held every year in Columbus. I love a good literacy conference (I'm a HUGE literacy nerd. HUGE.), and this is one of the best. I'll be here until Tuesday afternoon, and I couldn't be happier.

What I'm about to say could be controversial on the interwebs, but I'm saying it anyway. Here goes......I actually ENJOY a little time away from my kids. Yes, yes...I know, not everyone shares this point of view. I've heard and read of many a mama who hates having to spend even one night away from her kids. I've seen several comments on forums where women proudly comment on the fact that they've never spent a night away from their children. And I'm not judging...I think that's great, if that's what they choose as part of their momming identity (and yes, momming is totally a real verb). It's just not part of MY momming identity.

For me, spending time away from the kids to decompress, relax without anyone asking for fruit snacks or demanding more Mickey mouse or whining when I say no, we cannot go outside in the 15 degree weather, is about my mental health. My brain enjoys the quiet, the adult conversations, the being-able-to-crawl-into-a-bed-without-crumbs-in-it. It invigorates me, recharges me, makes me a better mom. I appreciate my kids more after a little break. Okay, that's an understatement. I appreciate them a lot after a little break.

Oh, please don't misunderstand. I'll miss them the whole time. I'll drive Marty crazy with an insane number of texts asking how they are, what they're doing, and could he please send me some cute pics? He will text me to let me know all about the hysterical things Anderson says and how Amelia is doing the Mickey Mouse hot dog dance, and I'll feel a little pang of longing every single time. We traveled an insane road to have those two crazies, and I don't take a minute for granted. Not one minute. I'll miss them with my whole heart and I'll be so freaking happy to see them Tuesday night--but for now, for tonight, and every day until Tuesday, I'll enjoy this empty king-size bed and the quiet and the learning about the career I love. And I'll return home well-rested, intellectually fed, and ready for some quality time with my loves.

I'm blogging from my iPad, so forgive the lack of pictures. You can always follow me on Instagram--my username is on the top right of the blog. I would also love to hear your thoughts and comments anytime!

Friday, February 1, 2013

Man Pictures and Paper Lights...

As I mentioned, Anderson was recently diagnosed with autism.  Let me tell you...it is a LENGTHY testing process to get an autism diagnosis. We went through our local school system, and they were amazing. Not sure if it's because they know I'm a teacher who has been a part of many evaluations, ARC (Admission-Release Committee) meetings, and IEP (Individualized Educational Plan) writing sessions, but they did an outstanding job.  Getting the diagnosis involved many classroom observations of Anderson, as well as one-on-one evaluations with him, questionnaires by his teacher and myself, and finally an interview with his teacher and myself.  It was a lot, but they were very thorough, so I have no doubts at all about his diagnosis.

The parent interview was enlightening. The evaluator would ask me questions about things Anderson does, and it really made me think about all of the little quirky things he does.  One of the questions that really inspired a lot of thinking on my part was "Does your child create his own names for things?" Ever since Anderson really started talking a lot--probably this past summer--he has been the MASTER of coming up with his own names for things. I didn't realize this was one of the traits of many children with autism, but alas, it's true. And he's the pro.  We get a big kick out of it around here...we call them "Andersonisms", although it's a bit more like his own language.  Here are just a few examples of our common Andersonisms:

* "Paper-Light":  This could be anything from a tiny piece of paper to a CD case. He actually used to take tiny pieces of papers ("paper-lights") to bed with him and fall asleep with them in his hand, and then he'd wake up in the middle of the night and have dropped it, and cry until I went and retrieved it. Not a fun game.

* "Nails":  Our multiple sets of nail clippers; these became almost like a stuffed animal or lovey to him. He'd also sleep with them at times.

* "Skirtin'":  One of my personal favorites. :-)  If you're a Facebook friend, you know that Anderson's lovey/stuffed animal is Tofu. Tofu is actually from a trip I took to Japan about 6 years ago. Anderson found him and fell in love--they're inseparable. Tofu is a whole blog post onto himself--another day.  Anyway, Tofu does many things, and one of the noises that Tofu makes (aka Anderson makes for him) involves talking in your mouth with your mouth closed.  He calls this "skirtin'". He asks us to "skirt" sometimes--it's pretty funny when we're all skirtin' simultaneously.  No clue how he came up with the word. None at all.

* "Black Doors":  Black doors refers to any elevator, regardless of door color.  He knows the term elevator; he just chooses to call them black doors.  He alternates between terms at leisure.

This is his elevator-riding stance.  Pretending to ride an elevator at the store.

* "Trip House":  Hotel.  He named it after his first stay at a hotel this past week (also another blog post onto itself).  He went on a trip, it looked like a  house, that's what he put together.

* "Roozer":  Another word for razor.  He HATES getting his hair cut, so we borrowed a social story book from school about getting a hair cut. It talks about the razor going down the little dude's neck. Again, Anderson knows that it's called a razor, but one day he switched it to "roozer", and anytime we tried to correct him (because sometimes it's fun to mess with him...), he would insist that we call it a roozer.

* And finally, "Man Pictures" AKA "Man Buttons": We have absolutely NO idea why he came up with this name, but these are the buttons that you push on an elevator.  They started as "man buttons" (and yes, Marty and I had a good laugh at how inappropriate that sounds!), and morphed yesterday into "man pictures".  Actually, we had a pretty funny conversation last night; when Anderson first called them "man pictures", he was asking me to draw some "man pictures". When I realized what he meant, I said something like "Oh, you want me to draw man buttons. That's a better word"...and then I realized in fact it was not really a better word. Man buttons. As in "push the man buttons".  Say it out loud to yourself and see if you don't either a) laugh a little or b) feel a bit like a perv.

                                                     Pushing the man button/man pictures on our "elevator".

Those are just a few good examples of Andersonisms.  Sometimes, Marty and I sit back and crack up thinking about how if someone randomly came to our house and hung out for an extended time, it sounds like we're speaking a foreign language.  It is actually incredibly endearing. My little creative guy.  He's so much fun.