Monday, December 30, 2013

The Right Time

With her first real school year looming in the not-so-distant future, I've been thinking more and more about Amelia and her size. Specifically, the differences in physical ability between her and other typical-size kids.  When she starts school, there are going to be things that have to be addressed. She will need something under her feet at her desk--maybe even something to sit on.  Going through the lunch line is going to be hard, if not impossible, for her to do independently. Going up and down stairs while keeping up with a line of students is going to be tough. Every time I try to talk to anyone about my concerns, they're quick to shush me, to say that it'll be fine. I get it; I know people want me to think that Amelia is just another kid and that it'll all work out. And it will. But that's not what I'm asking for when I bring these thoughts up in conversation. I'm really just wanting someone to listen, to problem-solve with me.

It was with these things on my mind that a little incident occurred over winter break. I hesitate to call it an incident even, because it was not a big deal in the grand scheme of things. Just another thing for me to think about, as we edge closer to going to school. However, it did happen, and it did add to all kinds of thoughts that have just been jumbled up in my head over the last few weeks.

It was Christmas Day night (haha...I like saying that).  I had an errand to run, and I took Amelia with me. Marty simultaneously took Anderson for his third trip to see the fire station Christmas lights--the boy can't get enough. After we had completed our task, I was feeling all Christmas sentimental, so I asked Amelia if she'd like to go see a big house with lots and lots of Christmas lights. My girl prefers her lights on actual houses, so she was game. I drove her by this house, which is locally notorious for going above and beyond when it comes to holiday decorating. I haven't seen the house myself in several years, and I thought she would love it. We headed to that side of town. When we got there, lots of people were parking and getting out to look, and so of course Amelia immediately asked if she could get out, too. So, we parked and walked up the drive.

At the top of the driveway, there was a family looking at the lights, taking pictures of themselves with the decorations. We were walking up the drive past them, and the mother turned, saw Amelia and I walking, and squealed, "Oh my GOSSSSSHHHH! Look at HERRRR!"  I totally cringed; I knew exactly what she would say next. And I was right. " She is so TINY!!!!! How old is she?" When Amelia was younger, I could avoid answering the question. However, now that she hears and internalizes these comments, I can't avoid them or even (gasp) lie. So, I drew a deep breath (because again, I knew what would come when I answered--and again, I was right) and said, "Actually, she's almost five years old." Pause. And happened.

I'm not proud of this. In fact, I'm downright embarrassed that I was so unprepared and reacted so...stupidly.  The woman said, and I remember the exact moment just like it was yesterday, "Oh, does she have..." And before she could finish that sentence, I started shaking my head. Vehemently. Then she finished, "Does she have dwarfism?"  I responded with my standard "Yes, she has an unidentified form of dwarfism..."  Then the lady, a bit befuddled because of the head-shaking and my clearly agitated expression, went on to say, "Well I think that's so cool!"  Fortunately, her teenage daughters were fawning over Amelia, and Amelia loves attention from older girls, so she kind of missed the whole exchange.

I was so ashamed of shaking my head. Like I was trying to DENY that she was different or embarrassed to admit it. But that's not it at all. You all know from reading my blog that I'm more than outspoken about both of my kids and their issues--nothing about my darlings is embarrassing. I just hate that it LOOKED like I was embarrassed. But the reason behind the head-shaking is more complicated.  I didn't want this woman to ask, because Amelia doesn't know. Amelia doesn't know the word "dwarfism" yet, and she hasn't comprehended that she's significantly smaller than her peers.  See, she's gone to the same daycare/preschool since she was two.  She's grown up with the same group of kids, who are totally used to her. I think they KNOW that she's smaller but they don't question it, because she's always been there and been small. It's just never naturally come up.

Thus...the dilemma. Do I wait until someone asks her why she's so small, and then she in turn asks me? Or do I head it off at the pass, talk to her about it ahead of time so that she is prepared with the best answers?  It's hard, because I know what I would want, but she is not me. She's definitely her own independent person, and I'm not sure which is best for HER. The biggest part of me wants to sit her down and talk to her soon, answer her questions and give her words to say to those who ask, words that she is comfortable with, that make her feel good about her answer.  I think this comes from the same part of me that cringes when I see her on a playground, trying to play with kids who are most definitely her age, but who immediately disregard her because they think she's a baby. It's the same part that aches inwardly when she continuously talks about "getting big" someday.  And it's from the part of me who literally wants to cry at the thought of someone asking her why she's so little and her getting upset. I like to be prepared, and I want her to be, too.

So...thoughts?  Tell her now? Wait until she asks? What do you think?

Monday, December 23, 2013

A Room of Her Own

So, as I previously mentioned, I've been all caught up in the redecorating of the girl's room. In hindsight, I probably wouldn't have tried to cram so much into such a short amount of time. From the idea entering my head to the finish of the project was less than a week. There was much driving to pick up furniture and online ordering and many, MANY trips to Home Depot (one of which was spent talking to a straight CREEPER for a good fifteen minutes while he mixed my paint). Although doing it while the kids were out of town was definitely the best option, trying to get it all done super-fast was...challenging. Especially for a perfectionist painter. Who refuses to tape off, because tape is for PANSIES (in my head, I don't say the word 'pansies'...). But I digress.

Be warned...many transformation pictures ahead.

I wished that I'd taken one last picture of the room before I'd done anything to it, but I felt so rushed I just jumped right in. This is when I started painting the walls pink--you can see the hideous taupe color that she lived with for almost five years:
The walls of her room had never been painted, and we bought this home as a 'spec home', meaning that it was brand new, built by the builder. They don't do a whole lot of upgrades to spec homes, and the paint was no exception. It was flat paint, and it literally SUCKS paint in. Like a dying man in a desert. The light pink took two coats, three around the trim; the dark pink took three coats, four around the trim.

After I got some of the dark pink on her wall, I hesitated. I wasn't sure about it. I also needed a break. So I literally laid down in the floor and took a picture, left it up to Facebook. Everyone unanimously agreed that I should keep painting. Thank you, Facebook friends.  You were right.
 On day two, I worked on the bright pink wall and the tree.

That took ALL DAY. While one coat would dry, it would be time to add another to a different area. It was slightly maddening. I finally stopped for a bit to go pick up a new mattress for the bed, and to eat dinner. As soon as we got home, it was back to work.

Day three was all about the flowers and trim The flowers are tissue paper, which means they won't last too long. However, the added benefit is that we can change them out as often as we want, the kids can help make them, etc. Kind of a fun little ever-changing addition to the room. However, despite how it seems, I am NOT a crafty person. I am capable, but I don't enjoy it. Cutting those flowers made me absolutely INSANE. I couldn't wait to be done. Putting them up was fun, though.  Day three wrapped up with trim painting--also maddening. Again, everything needed two coats of paint. Painting the arched window was a straight pain in the ass.
Sunday was reveal day, so I had to hurry to get all the finishing touches taken care of. Paint touch-ups, painting her door, more trim work. I also went to get some sheets and a new lamp for her room. I ordered her comforter online, but that hasn't come in yet. It's just plain white with lots and lots of ruffles. White and five-year-olds probably don't mix well, but it was cheap. I won't feel bad if it gets ruined.

They got back at about 8:00 on Sunday. I helped get them out of the car and whispered in Amelia's ear, "I have a surprise for you..."  She was so sweet--huge smile, lots of curiosity. I made her close her eyes, and when she opened them, she was in shock. We did video it, but she was kind of speechless, so she doesn't say much in the video. After she took it all in, she asked lots of questions: "Did you paint the walls? Are they both pink? Light pink and dark pink? Did you paint a tree?" She also said, "I LOVE my new room!" and "Thank you Mommy!" many, many times. I was both happy that she loved it, and proud that I've raised a grateful child who is truly thankful when someone does something for her.

She slept in her new bed last night. She spent the better part of the day playing in there, including eating her breakfast in the bed. Anderson loves it too. It's just so pretty and bright during the day. Anderson is excited for his new bed (coming soon...). He says he wants new curtains, too. Why curtains, I have no idea.

Let me tell you...I wasn't prepared for the physical pain that this makeover would cause. I carried around the heaviest ladder known to mankind, and it bruised my forearms and shins like you wouldn't believe. I also have a crappy back, and bending to paint, standing in one place, standing in odd positions to paint the highest points--they all hurt badly. I dropped the curtain rod straight on my head. It's heavy. I ran into the foot of Amelia's bed with my knee--HARD. I look like I've done battle, and all I've done is repaint and decorate a room. Sad.

But, who wouldn't endure a little pain for these eyes?

Tuesday, December 17, 2013

Rite of Passage

At this very moment, I am over-the-top, head-over-heels involved in a bedroom makeover project. I am redoing Amelia's bedroom for Christmas/her birthday--no longer will she have plain walls and random non-matching furniture, which she has had her entire life. My girl is getting a "Big Girl" room, complete with "Big Girl" bed. All kids eventually grow out of nurseries and into more age-appropriate rooms. It happens all the time.

Except this is more than just redecorating a room. Much, much more.

When I was pregnant and was told Amelia wouldn't survive, I didn't allow myself to buy anything for a girl. No pink, no purple. No flowers. No lace. Looking at those things while I was still pregnant was literally painful. All of those gorgeous, girly things were for a feminine space, and I wouldn't be bringing home a girl. It was hard. It hurt more than I can describe.

When Amelia was born, and we were told that she didn't have Trisomy 18, we celebrated.  However, we were given many, MANY words of caution. She was still tiny. She was still in a very, very precarious situation. Every day that went by was bathed in uncertainty. And so I didn't buy anything girly. No soft pastel colors. No plush, pink bunny rabbits. No special going-home ensembles. I couldn't let myself hope. I couldn't risk my heart. I couldn't bear the thought of looking at those things in my home and not having a girl to whom they'd belong. I just couldn't. So I didn't. I didn't even buy her a car seat until she was ready to take the car seat test required by the NICU to go home.

When Amelia came home on oxygen, I felt more safe, but not out of the woods. She was still so tiny--less than 4 pounds--and so fragile. We had been given no diagnosis and had absolutely zero idea of what to expect from her both developmentally and health-wise. So, although she had a crib, her room remained undecorated. Plain beige walls. A few picture frames, but nothing else. This is how it stands at this very moment. Plain.

Here we are, almost five years later. My girl is growing (albeit slowly). She is developing at an amazing rate. She's funny, and smart, and very VERY girly. She has worked her ass off her entire life, and has absolutely, 100% earned a room that matches her personality. She deserves a room, a space that is marked as hers, to show her absolute permanence, determination.

So no, this isn't your average room redecorating. This is both something for her AND something for me, for my mama heart. Something I longed to do almost exactly five years ago (we were told she wouldn't survive in November 2008), but couldn't. This is so much more than paint and furniture and art. We both need this.

Stay tuned for pictures. She knows we are doing something, but she hasn't seen anything. It's mostly a surprise. Big shout-out to Nana and Papaw; she'll be going to visit with them for a few days while the transformation takes place. I. CANNOT. WAIT.

Also, as an aside, I'm using customized art from this Etsy store. It is absolutely what I would call my ideal art for a child's bedroom. Whimsical, gorgeous, it exudes happiness. I've been in touch with Phyllis Harris personally, and she has been A-MAZING to work with. I highly recommend if you're in the market for childrens' art.

Tuesday, December 10, 2013

Hair Raising

I was...shall we say..."adventurous" with hairstyles as a kid. And that is putting it nicely. I was very vocal about how I wanted my hair to look, and my mother always let me do whatever I wanted. I don't know if it was because she was an "older" mom and was just tired of fighting kid battles, or if she really just wanted me to have independence and choice, but regardless, she allowed me to make some bad decisions.

Here, let me take you on a hair retrospective.

Note exhibit A:
 I know...there are so many things wrong with this picture. Aside from the knitted ribbon that I'm wearing like a bolo tie, this was my first major hair cut. I just wanted short hair, and a teenager on my street had gotten a nice, cute short 'do. Being the ever-so-hip second grader I was, I insisted on getting the same cut. Never mind the fact that I couldn't put the same amount of effort into the styling as a teen! My mom took me right up to the salon and I walked away with this hot number. Woo-eee.
So then, I had this short hair, so I thought, 'hey, why not just go for it and get a Shirley Temple 'do?' Which is exactly, word-for-word, what I asked for. I asked to look like Shirley Temple. What did my  mom do? She sat me on two phone books at the kitchen table and proceeded to give me a home perm. And voila, here I am! Angel in a school play. I look like your grandma.
Ohhhh, Wendy, Wendy. Please, don't be jealous of my USA Olympics t-shirt (skin-tight, too!), or my awesome clip belt on my high-waisted jeans! Capping off the look is my grown-out perm look. Actually kind of looks like a bad cut I got in about 2002, honestly. I don't have pictures of that one, though.

Now let me warn you about this next one. It's going to BLOW. YOUR. MIND. Not because of the look itself, but because I asked, in no uncertain terms, for the look.  Here, let me preface it with a little description. I told my mom that I wanted it short on the sides, by my ears, and long in the back. I wanted the bangs and top to be PARTED down the MIDDLE and FEATHERED on the sides! You all, I ASKED for that! All because a girl in my class sported the same 'do and I wanted my hair like that, too. Without further ado...

Yes, I had a mullet. Not accidental mullet, even! Note the bad feathering...I never could "train" my hair to feather appropriately. The giant sweater vest and cloth-wrapped earrings only top off the look here. I do kind of remember my mom suggesting I rethink this one, but I was adamant, and I got my wish. Let me tell you, growing out a mullet ain't easy.

Over the rest of my years, my looks have been much less drastic, but I do always opt for change.

I've had this look:
The all-one-length pageboy type cut. Notice my hair was straight here. It didn't become curly until the last 10 years.
Super-short bob. I was growing out a bad cut. I actually kind of liked this one, but I'm not crazy about how the back of my head looks when my hair is short. Crazy? Probably. But still.

Longer bob, all one length. This wasn't a bad cut either, but also not the most flattering. Note again...straight hair.

You know what my hair looks like now--long and curly or straight, depending on the day and my level of motivation.

I tell you all of this because I can tell already that Amelia is going to be like me--very adventurous with her hair. At this point, she's only demanding about her hair styles, and that's an easy one to work with--I don't mind doing silly things with hairstyles, because they're not permanent. But, I can tell, she's going to want to have the crazy cuts, too. Right now she insists she wants incredibly long hair worn in two braids like Anna on Frozen.'s all fun and games, until she chooses a cut like SHIRLEY TEMPLE!!!  Little girls disguised as 80-year old-women are not cute, friends! I'm living proof!

I'm torn. I don't know whether to handle it like my mom and just go with it, or help her avoid making mistakes like her mother. Mistakes that live on forever in pictures. Mistakes that might end up on the interwebs, like my pictures above! I'm not afraid of putting them out there. If I can save just one child from making such fashion mistakes, all the mullets and poodle-perms will not have been in vain!

So what do I do?

Sunday, December 8, 2013

Whine? Wine!

Y'all...I'm about to lose. my. mind.

My girl. Oh, my girl. She is in a phase of perpetual whining. And it is KILLING HER MOTHER.

It's not all-out temper tantrums. Honestly, I think I might prefer that. Temper tantrums are rough for a few minutes but subside quickly. This whining thing? It's all day. Every day.  The minute she get doesn't get something she wants ("No, Amelia. We are not watching the Flemish version of "For the First Time in Forever" from Frozen for the 30th time..."). And it doesn't let up.

It's not loud whining. It's these soft little "humph" noises, often followed by a folded-arm flop onto the floor. Accompanying the whine is a dirty look that rivals any, along with the refusal to speak using words.  This is particularly frustrating, because much of her whininess comes when I need her to make a choice. A conversation might go something like this.

Amelia:  I want a snack!
Me: What do you want?
Amelia: I want chocolate chips!
Me: You've had enough chocolate today.
Amelia: Whining noise followed by thumping on ground
Me; You can have ___________, or ___________, or _____________. Which would you like?
Amelia:  (silence)
Me:  Which one?
Amelia:  (silence, evil stare)
Me: Fine. I won't get you anything.
Amelia: Continued whining noises

 Sister can hold a grudge like no other. Let's just say I walked away from the above scenario. If I come back to her maybe an hour later and try to talk to her, I'm still likely to get the whine and the flop.

I think this is why I always enjoyed teaching classes of boys over girls. I loved all my students, but boys were so much easier, so much less drama. All this harrumphing and grudge-holding exhausts me to NO END. I love her to pieces, but she's wearing on me.

The solution to whine? Wine. Lots of wine.

You know how sometimes people start little fundraisers for their families, with a link that you can click to donate? Like a diaper fund for mamas of multiples? I'm going to start a WINE for WHINE fund for myself. Would you please donate? I prefer reds.

Thursday, November 28, 2013

My Thankful List--2013

It's 9:30 on Thanksgiving, and I'm already in PJs, under the covers in my bed. It was a grand, grand holiday, but I've been up and on-the-go since 6:30, and I'm tired.  Before the day of thankfulness expires, though, I want to write down what I'm thankful for this year. You know, for posterity. And also so I can look back and laugh at myself.

This year, I'm thankful for:

1.  Of course, my family. I have a great family, both here in our house and extended. I've gotten in touch with cousins and aunts and uncles in the past year, relatives I was very close to in my younger days. I'm thankful to get to know them all again, because they're part of my very happiest childhood memories. I love family.

2. Technology. I love having the world at my fingertips. Yeah, that's all very 1st world, but I'm just being honest. I love being able to connect with people instantly, being able to get information quickly. Makes me feel more efficient. It also allows me to keep in touch with my far-reaching friends.

3.  West Sixth Brewery. Yes, I'm thankful for a bar. Not in the alcoholic kind of sense, but just because I love that place! It's kind of my "Cheers" place. I've had some of the best times there with my friends--just the other night, I did yoga there, then had a beer and dinner and laughed until my face hurt. No joke. They have great beer, yes, but I am more grateful for a place I can go to hang out with friends and just relax, be happy. So yeah. I'm grateful for a bar.

4.  My job. I love what I do. Despite feeling incompetent and harried much of the time, I absolutely love where I work, love the kids and my teachers and our mission. Even when it's downright frustrating--and it is, much of the time--it's also incredibly rewarding. I love working with intelligent, passionate women. I love problem-solving and discussing what's right for our kids and knowing that we truly do put our students first in all we do.

5. Bedtime. I love my children with all my heart, but there's something so satisfying about bedtime. Putting them to bed at the end of the day, and sitting down to relax. Something so wonderful about settling in for the night. Getting all cozy under the covers, watching mindless TV...good stuff right there.

6.  Anderson's creativity. Oh, that boy and his imagination! There is not a single day that goes by where he doesn't do something that makes me smile. He is ingenious, I tell you. He's talented, and smart, and funny. He's determined and silly and passionate. He owns, absolutely owns, half of my heart.

7.  Amelia's curiosity. I love her age right now. She's infinitely curious and incredibly intelligent. She's sensitive and sweet, and sassy. She's devoted and loving and just the right amount of shy. She's timid and brave all at the same time. The other half of my heart.

8. Wine. No explanation needed.

9. strange as it may sound to some people, music is just so incredibly important to me.  It's a form of expression, even though I don't write or make the music. I choose songs with interesting or personally relevant lyrics. I love hearing a song so well-written, it gives me goosebumps. I love that my boy shares the same fascination with a good melody, good harmonization. I don't know what life would be like without it.

10. All of my pregnant friends and all of my mama friends. I have baby-mania so badly right now--I would literally LOVE to have another. I'm grateful to my girls who don't mind when I smell their babies' heads, just to soak up that newborn awesomeness. I love patting my friends' round bellies, and remembering when I had two wiggleworms tumbling around, kicking and hiccuping. There was a time when having pregnant friends was just insanely difficult for me, but I know exactly how lucky I am. Instead of being bitter, it's just bittersweet.

11.  My infertility experience. I'm thankful for it, because I take nothing for granted. Not one minute, not one word, not one newly learned skill.  Not one single smile, not one kiss. When you are forced to come to terms with the fact that having children might not be in your future, and you are lucky enough to find a way to make it happen, you appreciate it all. Every temper tantrum, every bedtime struggle, every tear and feisty word. It's all a miracle and I am so damn lucky.

12.  Nick at Nite. I love old sitcoms--TV was so much better 10 years ago. I secretly enjoy Full House, which has to be one of the worst shows of all time. Friends, all the good stuff.  It lulls me to sleep every night. Yeah. I'm thankful for it.

13.  Hair products. Y'all, I've finally tamed my insane mane. Got a great layered haircut, bought the right product and brush and styling tools. $300 later, I finally have decent hair most days! Sounds a bit material, but it's amazing how feeling better about your appearance affects everything else. I swear I'm a happier person.

14. "Snuggling".  Anderson isn't a loving kid--he rarely wants to be held or kissed or hugged. You can watch him when you do it, or when you make him show affection--he does it begrudgingly but he doesn't like it. But...he has a thing where he wants to "snuggle" in bed with me before he goes to bed. Now, he isn't close enough under the covers to actually snuggle, but we look at each other and talk and laugh. Almost as good as a real snuggle.

15.  Finally...this simple life. We don't live fancy here in the Jones house. Our house is small, our personal property limited. We don't have a lot of anything, honestly. We live fairly small. Our furniture is old, our home not updated. And yet--we are pretty happy here. Don't get me wrong--I'd love to have new things and more space. And we will--someday. But it's nice to know that we can be happy where we're at, too.

So there you go. Now, I'm going to bury myself under my sheets and watch some Full House until I fall asleep. Happy Thanksgiving!!!

Friday, November 22, 2013


Throughout the course of this year, Anderson's teachers and the other teachers throughout their preschool have become more and more fascinated by Anderson. I love talking to them about him, telling them all of the funny things he does, because it reminds me of just how...shall we say, 'quirky'...he really is. It's amazing how easily his funny little habits become "normal" to us--anything that is a part of your everyday life becomes commonplace. Watching the teachers' reactions when I talk about my boy makes me remember just how interesting he really is.  Most of his teachers are young, and the afternoon teachers are college girls working on education degrees, so he's the first "different" kid that many of them have worked with (and yes, I'd like to possibly set a record for how many "quotation marks" ever used in one blog post).

When I pick Anderson up from school on Fridays, no less than three adults will tell him--along with Tofu--goodbye, and tell him to have a good time at Hollister on Saturday. Of course he flashes his million-watt smile and those baby blues shine, and they fawn all over him and marvel at the uniqueness of his weekly visits to Hollister. More than once, they've commented that they wished ALL kids could just go to a store--a free trip--as a reward for good behavior. They're definitely on to something there.

The boy is also a crazy-good mimic. He pretends to be both Marty and I all the time. If I'm drying my hair, he pulls a chair into the bathroom and dries his hair, too.  If I'm flat-ironing (damn you, adorable new haircut!) my hair, he's flat-ironing his hair, too.  If Marty is making coffee, Anderson is grinding his beans, too.  Apparently, this is now carrying over into school.  One day last week, Anderson decided he was his teacher, Ms. Stacy. He sat at the top of the "circle" (which is really a half circle. Hmmm.), in the teacher's spot, and said, "Okay, now, Lindy. Here's what we are gonna do."  Now...Lindy is his other TEACHER. So to call her by her first name--well, in my book, that's questionable. However, as they were telling me about it, they were cracking up and they took absolutely no offense. I think it's because he clearly means no disrespect. In fact, that's one of his finest qualities. He is very, very true. He can't lie. He's honest about his emotions and is unable to take into consideration how others might feel about him. It's the most pure, sweet quality.

Today, as I was gathering the kids' belongings from their locker, I noticed a plastic Kroger bag hanging on one of the hooks. Curious, I  peeked inside. It contained one of his lotions, and a small notebook. Now, knowing my boy, I immediately knew what this was. Each day when Marty takes them to school, he packs one of the reusable black Kroger bags with their lunch box, their backpacks, jackets, notebooks, etc.  I figured that this was his bag that he'd packed, too.  When I went into the classroom, sure enough--he asked for his "black bag". He pulled out his lotion, and Ms. Stacy kind of raised her brows. The teachers didn't know about his obsession with little lotions! So, of course, I filled them in on the wide variety of hotel lotions he carries around and sleeps with. Again, they were--for lack of a better word--charmed by him. Another little quirk that makes him HIM.

Tonight, I was retelling the story to Marty. He responded with, "Anderson has to be one of the most memorable kids that they've ever had at the school."

"You're right," I replied, thinking about it. Realizing that he probably is one for the record books. My teacher friends will get it. He's one that they'll talk about long after he's gone. They'll tell stories about Tofu, and the Story Bus, and lotion and Hollister and all of the other funny things he's said and done.

And then, I said, "And how lucky are we that we get to keep him forever?"

And it's true. We are very, very LUCKY.

Monday, November 11, 2013


Really, being a parent is the equivalent of doing a life-long study in sociology. Or maybe even participating in a psychological experiment. In any case, I never get tired of studying children.  One of the coolest, most interesting things about having kids is that they become tiny reflections of yourself. Not only do they pick up on and subsequently mimic little quirks in your behavior--little things you may not even realize you do--but they also, by the laws of genetics, innately have other little parental qualities.

For instance, Anderson is an excellent mimic of his dad.  Marty doesn't really have a lot of little oddities (other than counting things and needing even numbers, but I digress...), but he does have some things that he routinely does. Things that I noticed a long time ago but kind of forgot about--until Anderson started doing them. When Marty is thinking hard about something, or is stressed out, he has a habit of running his hand across the top of his head, through his hair. He does it completely absent-mindedly. One day, I noticed Anderson doing the same thing. At first, I didn't put the two together, but then it clicked in my head. I questioned him, and he indicated that he was acting like Daddy. It was adorable. Another smile-inducing little thing that Anderson has so astutely picked up on is how Marty swallows. If you've eaten with him, chances are you noticed it. Marty has a paralyzed vocal cord, so to avoid aspirating food and liquid into his lungs, he has to turn his head to one side when he swallows, and he has to swallow hard. At dinner one night, we looked over and Anderson was doing the exact swallow--and I mean EXACT. We couldn't help but crack up. It's so endearing. It's just sweet that he picks up on little nuances in our behavior.

He is also a great mimic of my facial expressions.  I think I realized just how exaggerated my own facial expressions are when I was in college. At U of K, we had to interview to get into the Teacher Education program (which seems kind of weird, looking back on it...). It was pretty much my first interview ever--I mean, I'd had jobs before, but they were of the sort where, when you "interview", they pretty much just ask your name and beg you to start immediately. This was different, and I was nervous. I also got the professor who was notoriously mean as my interviewer, which didn't help things.  I sweated through the entire thing and at the end, she said, eyebrows arched, "Well, you're certainly an expressive person, for sure..."  Trust me. I know I do it. I can't help it. I've tried. My niece recently told me I look like Miley Cyrus when I get the idea.  Anyway, Anderson is practically a mirror. He talks to me with such exaggerated emotion, such facial expressions of seriousness, earnestness, even sternness, that I cannot help but laugh. And be a little self-conscious. But mostly laugh.

They also share some of my qualities, some of my likes and dislikes, and that's fun, too.  For instance, Amelia absolutely LOVES anything related to the sky. Clouds, the sun, stars, the name it, she loves it. She truly delights in a gorgeous sunset. She talks about all of the colors that she sees as the sun descends with such enthusiasm. I'm the same way. Cheesy as it may be, I love the sky, too. I love amazing sunrises and sunsets, I love when the sky is a million different shades of color. I love astronomy--took two classes in college and would've taken more but my major didn't require it and I definitely wasn't meant to be an astronomer--the sky and space are so fascinating! Confession: I will set alarms at crazy times to watch meteor showers. I've gotten up in the middle of the night and very early in the morning at various times in the year, just to go sit in a lawn chair in the backyard and see shooting stars. One time, I convinced my friend Matt to do the same.  He texted me the next day and said, "I got up in the middle of the night and stumbled outside. I looked crazy--I was wearing boxers and looking through binoculars at the sky."  Amazing visual. :-) Some people just aren't as interested.  I love that Amelia is already interested. I told her that one day, she and I would get a very nice telescope and we would look at the sky together. And we will.

She's also stubborn, hard-headed, and independent. But I don't know where she gets that.

Anderson shares my love of music. He expressed interest in specific types of songs, the sounds of certain musical instruments, before he could even talk. I would play "Band of Horses" and his little 16 month old butt would come running into the living room to listen intently.  I instinctively know what kinds of music and songs he will like. He can keep the beat and hum/sing better than more four year olds. A few nights ago, he took two Lincoln Logs and started using them as rhythm sticks, making sounds that started slow, and then got faster and faster. It reminded me of this scene in the movie "Memoirs of a Geisha":

(if you can't view the above clip, click here)

I looked it up on YouTube and played it for him. He asked me to play it another four times, and walked around playing his rhythm sticks in the same way (what you hear in the very beginning of the clip, and several times throughout). I love that I just knew he'd appreciate the music in that scene. It's a bond I know we will share for the rest of our lives. Something that connects us in a way that is special.

Anderson is also incredibly impatient--when he wants something, he wants it NOW--and he gets frustrated the minute he cannot find something. He's also a smeller. When he picks something up, be it food, a new toy, paper, he smells it. I'm a smeller. I'm not impatient. Not at all.

It's good to see yourself outside of yourself sometimes, and kids are the perfect mirrors in which to look for both the good, the quirky, and even the not-so-good things about ourselves. What about you? Do your kids share anything with you?

Sunday, November 10, 2013

Feeling Redundant

I don't know what it is (probably seasonal affect disorder), but as soon as the weather starts to change from hot to cold, I start feeling so BLAH.  It seems like I start living a Groundhog Day life--every day is the same as the one before, which is the same as the one before, etc. etc.  It feels like life gets more routine, and I'm the girl who hates too much routine.  I've been feeling the same about this blog. I feel like I keep saying the same things over and over, and is there really any point in continuing to write about how Anderson struggles with weird ebb and flow behavior issues, how Amelia continues to deal with her tininess, and how crazy our lives are? I'm not sure. I'm just not sure.  I read a lot of blogs, and I feel like if I kept reading the same things over and over, I'd probably quit reading.

The problem is, I really LOVE writing.  It's kind of an outlet, something I do for me. A little guilty pleasure. I like having a written document that I can look back on and see what was happening with us at any given point in time. That's definitely cool. But I also like writing for others, to make people laugh, to make people feel good about themselves because I make plenty of mistakes, and there's nothing more true than the statement "Misery love Company". Hello, Misery--you're in good company here. Probably more than half of the things I do in life, I could reflect upon and safely say that I'd have done things differently. That feeling is what unites us, the commiserating when things don't go as planned, or when our choices end up creating chaos. I get that kind of camaraderie from reading other blogs, and I hope that people get the same warm-fuzzy from mine.

I know, I know...ramble ramble ramble.  I'm just reflecting upon what I'm doing here, in this space. Whether it's meaningful, or just me alternating between story-telling and bitching, over and over.  Something to think about. In the meantime, to make this more useful, a few snippets of what's been going on with us.

**Amelia is suddenly a super sponge for learning. She has gone from asking the annoying kiddie questions that kids ask when they suddenly realize that they CAN ask questions, to asking really good questions about the world around her. Why does it get dark at night? Where does the sun go?  Why do the leaves change colors? What does that word say? I find I never get tired of her wondering. I am fascinated by how her brain processes things, and of course I can't help but be amazed that my one-pound wonder who was just destined, according to her doctors, to have diminished cognitive ability, is thinking and inferencing and in awe of everything. I am enjoying her so much right now. She is logical, and smart, and funny.

**Anderson is...well, he's still Anderson. :-)  Behaviorally speaking, he's doing better. Sleeping--not so much. I can't wait for their 5 year check-ups to talk to the doctor about it. The circles under his eyes are ever-present these days. He's very, very into "cooking" right now, especially mixing with his mixers. He is always in the kitchen, cooking up something. He continues to crack us up with the crazy things he says, and like all of the stores right now, he's already looking forward to Christmas. It's funny--he isn't the kid who is all about the presents. When you ask him what he wants for Christmas, he might say "an elevator", or something, but toys aren't exciting to him. He is more interested in the ritual of the holiday (go figure, right?). Last week he told his teacher that "Daddy is going to clean up the living room, and move the table, and build the Christmas tree, and put some lights and ornaments on it".  He can't wait for us to get out our little light-up village--he talked about that at school, too. I think he truly just loves the season, and I have to say, it's infectious. Not infectious enough for us to start decorating, though. I'm standing my ground on refusing to decorate before Thanksgiving.

**Anderson has what we can only assume is an imaginary friend.  Her name is Chessie. He talks about her all the time. Chessie lives in a little bitty house, and goes to his school. Chessie is a kid, but also a teacher there, apparently. He laughed uproariously when I asked if she took naps at school, as if that were ludicrous.  I'm kind of getting a kick out of it. I actually had two imaginary friends myself, as a kid. Keeker and Boomer. I talked to them all the time and my family got a huge laugh out of my descriptions of them. Apparently imaginary friends are supposed to be a sign of intelligence. Not so sure, but he's definitely a creative little dude.

Well, nothing more to share, I don't think. I have to make our Trader Joe's run before the kids wake up because we didn't get to go to Hollister yesterday, and we all know that's just not acceptable. Enjoy your Sunday.

Thursday, November 7, 2013

Ask Away...

Well, life has been so insanely crazy that I haven't had time to write--or even really think about writing--which is depressing because I absolutely LOVE writing. Anyway, I'm hoping things will slow down very soon (like this weekend), and I'll be able to write up a real post, because despite being uber-busy, funny/amazing/hilarious/unbelievable things keep happening under this roof with these crazy kiddos and I WANTTOWRITEABOUTTHEM!

I also got a suggestion from an anonymous reader who got my email address through a previous post, and I thought hey, why not? So, I will do a Q & A blog entry. Ask me anything--about my family, about autism, about dwarfism, about cancer, about growing up as a child of an alcoholic, about whatever you want to ask about. Nothing is too personal, and if it is, I just won't answer it! :-)  Doesn't matter if I know you or not--if my life experiences can be helpful, or reassuring, or laugh-inducing--I'm glad to share.

So...I have a blog email address now.  Send any questions to:

I will be back soon, once the tires stop spinning and my brain stops smoking. In the meantime, enjoy this video of one of Anderson's (and my) current favorite songs:

Tuesday, October 29, 2013

It's a Wash.

Lots going on around the Jones house. Some of it good, some of it not-so-good--life's been kind of a wash lately. The good rubbing out the bad, and vice versa.  That sounds a tad depressing, but the depressing counteracts the get the idea. Here's what I mean:

The good:  Amelia is learning so much! She's so curious about the world, which means she asks great questions. Lots of questions about people getting married (she insists she's marrying "Isaiah", a boy with whom she's had a special relationship for going on a year--I should probably meet him), why things happen in nature, etc.  She also suddenly has great listening comprehension. I can read harder books with fewer pictures, and she can answer really tough questions. The teacher in me can't help but be excited about this recent turn of events.

The bad:  Amelia has apparently picked up a pack-a-day smoking habit. Okay, maybe not, but she has developed a very, VERY nasty cough. It started about a week ago. I kept waiting for it to get better, and it kept...well...not getting better. In fact, it started sounding worse. Then, Marty got sick, which brought back lots of fun memories and fears, and I figured they were sharing the same awesome germs.  Marty went to the doctor (in a timely manner! Exciting!) and got some antibiotics, and then he got better. Amelia...well, she continued to hack incessantly.  The thing is, she wasn't running a fever! She didn't even act sick, with the exception of nighttime, when she coughed to the point of gagging--YAY!. Finally, I could take no more. Took her to the doctor yesterday, and found out that she doesn't seem to have an infection of the respiratory kind, but she did have a raging ear infection.  The doctor thinks the cough is allergy-related. He asked if we had a family history of allergies. Insert ridiculous-because-I-have-no-control-over-it-but-yet-it's-still-there mom guilt. I'm the most allergic human alive. So yes...she has allergies. We upped her dosage of Zyrtec, added regular inhaler use, and put her on the fun antibiotics that turns kids' poo red. Nice touch.

Yeah--it's a wash.

The good:  Anderson is a walking episode of "Kids Say the Funniest Things".  He comes up with things...I don't even know where he gets them. It's like he overhears snippets of conversation and stores them in his memory for later usage, then inserts them into his own talking whenever he sees fit--sometimes it might make sense, and sometimes it's just waaaaaay out there.  Lately, he's been VERY into cooking. Specifically, pretending to use the mixer to make mashed potatoes or cake. I actually own THREE mixers--one that works, one that is missing the beaters (which he calls "blenders") because he lost them, and one that broke from his rough handling. So, the two that are non-functional are his. He pretty much puts on a show worthy of Rachael Ray fame in the kitchen on the daily. I hear him in there, describing what he's doing, and it's so funny.  Yesterday, he was talking away while I was looking for something. I think he could sense my frustration, because suddenly he said, "Mom, you need to make a decision..."  Ummm...thanks? It was fantastic. Of course I laughed out loud, which of course makes him repeat whatever he says that is hilarious. He has no idea what a decision is. Trust me.  Another thing he says lately is "I'm the teacher, you're the kid"--which I'm sure comes from school.  When I questioned him further about what it means to be a teacher, he said, and I quote--"Teachers say EVERYTHING!"  Pretty sure he is implying that teachers talk a lot. But I think my absolute favorite conversation lately happened last week. Marty had a late meeting at work, and made the dreaded mistake of taking Tofu with him in the car. Bedtime came, and the boy was beside himself. Since it was obvious that he wasn't going to be able to settle in to bed, I told him he could get in bed with me until Daddy came home with Tofu. Now Anderson likes his bed; he was leery of getting in my bed but I assured him that I'd leave the lights on. So, he climbed in, and I went ahead with my nightly ritual of reading all of my blogs and then playing Candy Crush. I told him he had to rest his eyes and be quiet, so that his body could rest (I wanted him to get sleepy). He would lay there for a bit, quiet and still, then talk a little, mostly to himself. He told me his nose was itchy. I tried not to comment, so as not to break the quiet restfulness. Then, he says, "Yeah, I have a meeting tomorrow at school..." He knew Marty was at a meeting, so apparently he decided that he also had one. THEN...he goes on to add the following: "Tomorrow, I am going to wake up, and eat my breakfast, and scratch my nose with a toe-stick, and get my clothes on and start the car and go to my school meeting!"  Ummm, which item doesn't belong in that list? If you guessed toe-stick, you'd be right!  Toe-stick is an Anderson-ism for fingernail file.  He saw me giving myself a pedicure and it became a toe-stick. Now, why he'd want to scratch his nose with a toe-stick? That's beyond me. I guess he figured it was nice and scratchy. At that point, I laughed profusely, put the iPad down, and we talked and snuggled until Daddy brought home the much-missed Tofu. It was a memorable, sweet night.

The bad:  Anderson is having a pretty rough time in terms of sleeping and temper tantrums. Unfortunately, they have a reciprocal relationship--the less he sleeps, the more he has tantrums, and vice versa.  Anderson was ALWAYS my good sleeper. Always. Slept through the night early, never once fussed about being in his bed. I'm not saying he is always ready to go to bed when it's time, but he would sleep through the night with absolutely no problems. Until recently. He gets up anywhere between 4:30-6:00. When it wakes us up, we tell him to go back to bed, but I don't think he's always getting back to sleep. Sometimes, we don't hear him get up.  Marty found him laying on the floor outside of the guest bathroom one morning. The hard, laminate floor.  He's starting to get dark circles under his eyes. It worries me.  He's also having pretty severe tantrums.  Not violent--he's never been a violent kid at all--but all-out, on-the-floor screaming and crying tantrums. The kind that break my heart. However, two days ago, we decided to tell him that he had to go to his room if he was going to continue screaming and crying. He didn't go willingly, but for whatever reason, as soon as he got into his room and sat down, he was able to regain control.  The next two tantrums, I repeated the process.  We are also talking a lot about calming our body down by taking deep breaths. He does it on his own--and it is 100% adorable.  We are trying to give him practical strategies for dealing with his frustration.  I am not dumb enough to think that a little deep-breathing is always going to help, but if it works now? That's enough for me.

So--the good and the bad? It's a wash. Again.

The good?  Halloween is almost here.
The bad?  Anderson is convinced that he's wearing a costume that we do NOT have and are NOT going to get.

The good? The school-year is flying by!
The bad?  I'm so busy at work that I literally cannot keep my head above water. I have about 10 partially-finished tasks.

See how that works?  Waiting patiently for the day that the good outnumbers the bad!

Leaving you with a little funny from Amelia:

Me (to Amelia, as we listen to the song "The Jungle Sleeps Tonight" in the car): "We could watch the movie 'The Lion King' if you weren't such a Scaredy Cat!!"
Amelia: (silence...)
Amelia: "I'm not scared of cats!!!"

:-)  Enjoy the rest of the week! It's Red Ribbon week at school, which means we dress up differently every day. On Thursday, we are busting out the hideous formal dresses we've had lurking in our closets. Potential pictures to come...

Monday, October 21, 2013

They're MY Role Models...

I confess. I've been Scrooge already this year. October has been a busy month for us, and as of this past weekend, we hadn't yet visited the pumpkin patch with the kids.  The first year that we took them, we were SO excited! We had bags for the camera and bags for the baby supplies and bags for the bags and it was All So Exciting! Last year, we were still excited, but I probably didn't take quite as many pictures, and the enthusiasm waned when Anderson freaked out when we put him on the hay ride and we had to wait in line for 45 minutes to get tickets for the poor, obese, dirty animals petting zoo. This year...well, this year, I was dreading it.  It's so incredibly crowded, kids run around everywhere, there are hay bales to climb and big slides to slide on and keeping a good eye on your kids is next to impossible, unless you want to be one of THOSE moms or dads who literally hovers over their kid to the point of knocking everyone else down, and I'm not up for that.  Equally annoying, the bigger kids never watch where they are going and Amelia inevitably gets knocked down the steps. Yeah, yeah..that sounds like a 90-year-old complaining about the noise next door. I know. I own it. I didn't want to do it.

Saturday was cold and rainy and we were stuck inside all day.  We did the regular stuff--ballet and  Anderson's weekly trip to Hollister, but it wasn't enough to keep the grouchiness away. Bedtime was ROUGH and Marty and I were pretty much exhausted. So, the next morning when the kids got up, fresh-faced, happy, and ready for a new day, I asked Marty if we should just suck it up and do the pumpkin patch. The weather was set to be a little cold but gorgeous, and the kids needed OUT. Now, in my house, we don't tell the kids we are going to do something unless we absolutely plan to follow through because it is just not worth the repercussions. Cancelled plans = temper tantrums beyond your wildest nightmares. Therefore, it was with much reluctance that I told the kids where we were going to go. Anderson's eyes--oh, when I told him, they were AMAZING. Watching him process the information was just intriguing. His first words: "We don't have to ride the tractor." No, buddy--not this year. He then went into detail about what we would see and do--and he missed nothing. He was only three last year when we went--I cannot believe how much he remembered.  We decided to skip naps (!!!!!!!!) and go right after lunch.

Now here is the part where I REALLY own it: it was impossible to watch my kids at the pumpkin patch and have a miserable time. Believe me, I tried. I failed.  Their enthusiasm and glee was unmistakably adorable. I think I smiled for three hours straight. Cute, and smart, and just downright brave. I felt pretty guilty about my bah-humbugness.

Two things stuck out to me, though--two wonderful qualities in my kids that I am always subconsciously aware of but that days like the pumpkin patch bring to the forefront of my mind, where truthfully they need to be more often.  Marty and I took turns following each kid around, as they have different interests and tend to go in opposite directions.  Amelia...oh, sweet girl.  She is the absolute most determined little thing.  One of the amusements at this particular patch is a little figure eight track with old-school pedal tractors.  My kids were late-bloomers in the pedalling game and just learned how to do it this past summer, so I was kind of excited that they'd finally be able to ride these tractors. fate would have it, Amelia's legs were too short for the tractors.  They have different sizes, and believe me--my girl tried out every single tractor in the place. Every single one.  She finally found one that she could almost reach, and could get enough action to make it go about a foot forward. Then it would roll backward about two feet.  Not one time did that child quit. She tried, and tried, and tried.  The bigger kids (who have no business on the tractors but I digress..) would bump her from time-to-time, and she would turn around indignantly and yell, "HEY! Watch where you're GOING!".  Spunky thing. Finally, I had to drag her away because we were going to go have a drink and a snack. Oh, that perseverance. What a fantastic quality for a kid who is inevitably going to face many challenges in her life. She was seriously inspirational.

Unsurprisingly, she's equally determined when she is scared to do something, but really wants to do it because all the other kids are doing it.  She wanted to go down one of the tunnel slides, but she was scared.  She would sit on the edge, think about it, scoot back down. Repeat. Kids would line up behind her and she would get irritated about having to move out of their way.

Finally, the line got backed up and she wasn't moving, so I did what all fabulous parents do. I pushed her. She loved it.  Pretty sure the dad next to me was horrified, but hey. She conquered that little fear and enjoyed the rest of the afternoon flying off the bottom of that slide. She would've gotten there on her own. She always does. But sometimes, you need a little nudge from your mama.

Anderson--my brave, brave boy. Oh I can't tell you how proud I am of that kid.  Just about six months ago, he wouldn't even DARE sit on a swing. He wouldn't let you hold him upside down. He had the typical equilibrium, center-of-gravity issue that lots of ASD kids have. He hated rough-housing, anything that made him feel off-balance.  However, over the course of the last little bit, he's been working hard to overcome it. He finally let Marty start trying to hold him upside down. Little by little, he got there. He also decided to swing on swings, slide down big slides, climb on structures. So hard for me to watch because I'm terrified that he will fall, but he's just really overcome so much that I try to bite my tongue.  Yesterday, at the pumpkin patch, he climbed to the highest hay bale (to my dismay/awe). He jumped off of the hay (into more hay...soft landing). And my boy went down the biggest slide--and let me tell ya, it is tall, and they go fast! They have little potato sacks to sit on to go faster, and he absolutely loved it. I stayed at the top to ensure that he stood in line as he doesn't always understand the line concept and this particular slide always has a line. His excitement every time he'd run back up there--it was almost tangible.

Like his sister, he worked hard to get to a point where he could not only tolerate these kinds of things, but he actually enjoys them! He enjoys something he was terrified to do only a few short months ago. Something to learn there? Absolutely.

So, friends...I went into the day as Scrooge and came out a big ol' pile of mama mush. I love those kids. I learn so much from them every single day. They truly are role models for me--and probably all adults. I definitely need to be more like them.  Persevere when things are hard, never quit, and if all else fails, just take the leap. It might turn out to be much more fun than expected.

Wednesday, October 16, 2013


Since my "cry-for-help" post, I've really become connected with the dwarfism community. I quickly learned that October is Dwarfism Awareness Month. I had no idea...none at all. And, if I'm being completely honest, it totally caught me off-guard. Because I've never even considered dwarfism awareness.

You see, I've been wrapped up in Autism Awareness.  Anderson and his developmental/social issues have, quite frankly, taken precedence over Amelia's physical issues. Learning how to navigate his need for structure and routine, his social inadequacies, the public's understanding of him, has just engulfed the part of my mind devoted to creating awareness. And then, I joined a Facebook group for parents of children with dwarfism, and I realized that dwarfism awareness is equally important.  Children with dwarfism face both physical and emotional challenges that deserve public attention and support. Anderson's issues may seem more pressing because his issues exist now, but Amelia's are just as significant, and will become even more so in the future.

If we're talking about awareness in terms of awareness days and months, then really I need to support many more. Infertility Awareness, Prematurity Awareness, Breast Cancer Awareness...Cancer Awareness in general...the list goes on and on. Because--and I'm not complaining here or looking for attention but just stating a fact--my life has been deeply, life-changingly affected by all of those things. Equally affected. Affected by those just as much as autism and dwarfism have affected me.

In a dream world, I would equally promote each awareness month. I would fund-raise and post facts on Facebook and the internet and spread awareness at work and preschool and create/wear clothing spreading the message. But in reality, I don't have time for those things. I don't have time, and I don't have the mental strength it would take to dwell on each affecting issue for each of those months.  As bad as it may be to admit this, there are times that I don't like to think about autism.  I don't like to think about cancer, or infertility, or dwarfism. Sometimes, I just like to BE. I like to just be part of a family with two kids. I like to just be a teacher, with two preschoolers and a hardworking husband, who comes home at night, does the routines, and watches a little TV before bed. You know...a regular person.

So, we support awareness a little differently around here.  We support awareness by teaching our children, our families and friends about kindness. About being accepting of differences.  About treating every living thing with dignity and respect. About recognizing that all people are capable of great things, regardless of their size or shape or education or income or color or family situation. We talk about how to show love, how to demonstrate courtesy, and how to navigate life in a society where everyone--EVERYONE--is different.

Because really...if everyone had a strong foundation in all of those things, would we really need awareness months?

Monday, October 14, 2013


Oh, you guys. I am SO overwhelmed with the kindness, the love, the concern you've shown for Amelia and our family. I have a list of people to contact (making a spreadsheet--gotta keep it organized!), and I've made some fantastic connections and gotten great information that I will most definitely use.  Please…keep sharing. I appreciate each and every comment, suggestion, and email more than you even know. Thank you, thank you, thank you!

I think I got a little click-happy and posted/shared without giving enough details about Amelia's story--I was just so excited by the thought of finding some connections that I wasn't thinking clearly. clarify, here is what we know about my girl:

* We were told at 22 weeks gestation that, based on her brain and heart on ultrasound, she likely had Trisomy 18, which is a fatal chromosomal issue. We were told not to expect her to live to birth. Fortunately, our first geneticist was at the hospital on the day that they were born, and told us that she definitely didn’t have Trisomy 18. She was still screened for it, and of course the test came back negative. She was 1 pound, 1 ounce at birth, and was in the NICU for 99 days just learning to eat and to gain enough weight to keep up her body temperature.

* She had a PDA that didn’t close with medication, which caused her to be on oxygen for the first seven months of her life.  She had the hole surgically closed (she was too small for a catheter closure procedure) and came through that procedure fabulously. She continues to be followed by a cardiologist, just to be sure all is well.

* She has Dandy-Walker Variant, which is less severe than Dandy-Walker Malformation. She has enlarged ventricles (can't remember offhand which ones are enlarged; it’s been awhile since we’ve even talked about this with a doctor), and she’s actually missing a part of her brain right at the stem because during her in-utero development, the fluid from the enlarged ventricles collected where her brain should’ve been growing.  Fortunately at this point, her cognitive development doesn’t seem to be impaired. In fact, she’s a pretty bright little girl, and that’s hard for me to say because as an elementary teacher, I have high standards. J She knows all of her letters and sounds, some sight words, colors, numbers through 12, shapes, etc.  We are followed by a neurologist who sees her yearly just to check in and see how she is doing. One of the potential complications of  DWV is hydrocephalus

* She has echogenic kidneys. This means that her very tiny little kidneys don’t work at 100%. She’s followed by a nephrologist who keeps a pretty good eye on things through blood draws, urine samples, and kidney ultrasounds every six months. So far, they’ve not gotten any worse, so we just watch and wait and hope for the best.

* She does NOT, according to three blood samples and two endocrinologists, have a growth hormone issue. Three blood draws at two different hospitals indicate that her levels are very normal. Our endocrinologist followed her for about a year and a half and dismissed us this past summer.

* She does NOT, according to two geneticists, have Russell-Silver Syndrome. I really thought that was our answer; she really looks like a child with RSS and has some of the characteristics. However, both geneticists agree she doesn’t have all of the hallmarks, and that she is in fact too small for that diagnosis. We continue to see a geneticist in Cincinnati.

That’s Amelia’s life, in a nutshell.  She is also a very feisty, spunky girl who loves to learn, loves Minnie Mouse and Doc McStuffins, has an amazing imagination, and makes us smile every single day. She’s our miracle baby, and we just want to pursue a diagnosis. We realize that we may never get any real answers, but I would, quite honestly, feel like a failure as a parent if I didn’t continue to at least try.  We've never spoken to or seen any real experts in the field, so that's where I feel like we need to go next.  Our geneticists have admittedly not seen anyone quite like her, but I just can't shake the feeling that someone else might have. Gotta keep on keeping on.

Thank you, again, for all of the advice, comments, everything. I feel so undeserving of it all—it’s surreal. I’m going back to my regular, snarky, silly blog posts, but I’ll definitely update as I get return emails from all of my requests, so I’d love it if you’d check back in and see how we progress!

Sending all kinds of love through the interwebs to you all.

Sunday, October 13, 2013

I need your help...

Social media is an incredibly powerful thing.  This weekend alone, I've watched prayers and kind thoughts for a former co-worker's grandson spread through our area and even other parts of the country like wildfire, all because of Facebook. It's a wonderful, wonderful way to spread knowledge, ask for help, share love and caring for one another. So, I'm putting it out there. I need help.

Here's how this idea started. I was bored last night and looking through Netflix for something to watch. One of the TV shows caught my eye--it was a TLC special that I'd heard of but never watched.  It's called "The Tiniest Girl in the World", and it chronicles the life of a little girl with severe primordial dwarfism. At the time of the video, she was two years old and weighed in at seven pounds. SEVEN POUNDS.  Amelia is tiny; she's not close to that tiny.  The show was so interesting though, and I learned a lot. The word "primordial" means that the small size showed up before birth--so technically, Amelia DOES have primordial dwarfism. At 32 weeks gestation, she was the size of a 24 weeker.  Interestingly enough, this girl was much bigger than Amelia when she was born--this child was born at 36 weeks and weighed 1 pound, 11 ounces. Amelia was a mere 1 pound, 1 ounce. Amelia now tops the scale at a whopping 20 pounds--she will be five on February 10th.  This particular story took place in England, and it was high stress because they were trying to determine which kind of dwarfism she had--one type meant that she'd only live to be about three years old, and the other meant she could live into her thirties.  Fortunately, they determined she had the latter--the show had a happy ending.  It got me thinking though...thinking about the thought that is always, ALWAYS in the back of my mind.

Amelia is undiagnosed.

She's seen two geneticists--one at UK, one at Cincinnati--and they've run the common tests for all possible diagnoses, all of which have come back negative.  Essentially, they look at her, measure her head circumference, take pictures of her dysmorphic features (clinodactyly, triangle-shaped face, small eyes, wide nose...I could go on and on), and tell me that they still don't know.  Which wouldn't be a big deal, except that I want to be like the mom on the TLC special. I want to KNOW something about her life expectancy. Most days, the not knowing doesn't bother me. But it's always there, a nagging thought in the back of my mind. Will she be around in her teens? Her twenties?  She is healthy enough now, but will the Dandy-Walker be affected when her head grows? Will her echogenic kidneys get worse? Will her small size somehow impact her growing organs? No idea, because nobody knows what's going on with her.

Here's where you come in. I've asked repeatedly at Cinci if there is a specialty clinic somewhere in the country that I can visit, somewhere with someone who might know more about what could be going on.  They always insist that they don't know of any. So....I want you to share this post--share her story. Re-post it to Facebook. Send it to friends, to ANYONE who might know any specialists in the field of dwarfism/small stature. Send it to the news--I don't care! I just want help in finding someone--anyone--who would be willing to take a look at her (more than just her head circumference and body) and try to figure out what is going on with her. We will gladly travel anywhere in the country that has someone who would be willing to see us.

Please...if you think you or any of your Facebook friends could be of help, please consider sharing this post or sending them an email.  If you have ideas and want to send me an email, my address is After watching that show, I really want to pursue this. We appreciate any and all help you can offer.

Some pictures of Amelia from birth until now, for anyone who might want to see her dysmorphic features:

I mean, who wouldn't want to help that little face?

Thanks so much...

Sunday, October 6, 2013

Defining Normal

First of all, for those of you who sent messages inquiring about my procedure, thanks so much for the kind thoughts. I'm all ablated, and hopefully the procedure worked wonderfully and I'll have no more issues. The procedure itself was a breeze; the recovery has been fairly mild. The scarring and adhesions from endometriosis have caused a bit more pain than usual for this procedure, as everything goes back to normal in my abdomen, but all in all very tolerable.

I've been thinking a lot about "normal" lately. Especially in terms of our family unit.  For instance, I thought about it tonight, as I was picking up Amelia's messy messy room, the kids helping me, while Marty threw together dinner in the kitchen. I stepped over a spatula, unused balloons, a tampon wrapper (Amelia LOVES them. Not sure why), dress-up toys, an empty cup, some dried-up shredded cheese.  The kiddie chairs had been dragged over to the front door (for watching the rain?), the kitchen table was covered in art projects and notes home and pictures and a paint stirrer and a mixing bowl. Some of that? Some of it is normal in a house with two kids. Some of it is not-so-normal.

I think my idea of a "normal" family is kind of how I grew up (which is funny because honestly my childhood was anything BUT normal, but to outsiders, it looked pretty damn vanilla).  House was always clean, dinner was a family affair with no television, we followed pretty much the same routine day in and day out.  My dad NEVER cooked--I am certain he wouldn't even know where to start. He did clean some, but most of the cleaning was my mom's job.  She ironed on certain days--even ironed pillow cases.  All in all, it kind of looked like Ward and June Cleaver's household.

My family, by that definition, is not normal.  On any given day, my house can be very neat, or very messy (not dirty...messy. There's a difference.).  By the end of a work week, our kitchen table IS covered in stuff.  Sometimes the floor is, too. The kids' rooms--well, they're always horrific by the end of the week.  You can always find laundry hanging from door frames (no laundry room--have I mentioned I can't wait to move?), drying. Sometimes I cook dinner, sometimes Marty cooks dinner. Sometimes we eat together, sometimes we don't. Sometimes we watch movies at dinner. Sometimes, we play outside until it gets dark. Most days are completely different from the ones before.

One day a few weeks ago, as we were following our bizarre night time routine with the kids, I looked at Marty as we passed and said, "Do you think we are normal? And do you think we are scarring our children because we aren't?"  Looking back, I feel silly even thinking that, but I was really concerned.  His response really stuck with me. He said that no, we might not be "normal", as in like other typical families. But he said that we aren't scarring our children because even though everything isn't always neat and orderly (both physically in our home and emotionally, dealing with special needs and illness and all of the other insanity that life has thrown our way), our children are loved, and supported. They feel comfortable being themselves and they know without a shadow of a doubt that our love is unconditional, that they are safe. That our home is full of happiness.  Stable. And THAT? That's what was missing from my childhood. My childhood was normal on the outside, not on the inside. And if I had my choice? I'd go for normal on the inside any day.

So...maybe we are the normal ones. Maybe normal doesn't exist. We create and define our own normal.

Monday, September 30, 2013

At A Loss--Or A Gain

You guys, I'm so TORN on this issue. Torn, I tell you.

I want to talk about it and get it out there, and anything I feel that strongly about, I usually blog about. But, I don't know if I want to bring attention to the issue, to give it attention because I'm not sure it NEEDS any more attention than it already gets. From the media, from society--everyone is talking about it in one way, shape or form. And the damage it is doing to our girls?  Hopefully not irreparable.  

It's body image. Specifically, MY body image.

I went to the doctor today, and the number on the scale was the highest it has been since I was pregnant.  The number itself was a bit of a surprise, but I know I've put on a little weight. In fact, I broke down and bought bigger pants this year--for the first time in a very long time, even pre-pregnancy. So it was no big shock that my weight was up.

Now, the reason for gaining weight is multi-faceted. I'm getting older, the metabolism is slowing down.  I'm not exercising nearly as much as I used to, pre-child.  But worse than that, my taste buds are changing.  I crave carbs, starches. I still like sweets, but bread and salt call my name.  My taste is changing and my will power is shrinking.  I used to be able to turn down junk like it was my job. Now, when something delicious is lurking in the staff lounge, I just cannot make myself pass it up (and let me tell you, teachers are the WORST for bringing in delicious treats!). Put all of those things together, and you ever-growing ass.

I feel like Jekyll and Hyde on this issue.  On one hand, I long for my old body. I miss putting on cute jeans and not worrying what I look like from behind. I miss being able to shop at just about any store. I miss feeling good about my appearance, and not feeling like I have something to cover up every time I get dressed. Hell, I miss not feeling a fat roll when I sit up normally at my desk.  But--on the OTHER hand--I don't pig out every single day. I'm not totally sedentary. Admittedly I worked out a ton more in the summer than I have since work started again, but it's not like I don't do anything. Long story short--maybe I should be accepting of this newer me. Maybe it should be okay to me that my body doesn't look like I'm in my 20s anymore. Maybe it should be okay to everyone  that an upper-30s woman has a little more meat on her bones than she did when she was younger. As long as I feel "fit" and healthy, should it matter what the scale says, what size my pants are?  These are the things I am thinking about.  Self-versus-society-versus-right-and-wrong-and body-image-and-raising-a-daughter-in-this-messed-up-world-of-unrealistic-expectations. 

Don't worry. I don't talk about my weight or body disappointment in front of Amelia. We talk in terms of what makes a body healthy and strong, not in terms of shape or size. Regardless of where I end up on the issue, I will never make my issues her issues by proxy.

So, I continue to ponder and think and decide where I truly am with this (and let's get real for a minute; we all know which would be politically correct and which we would like to say we agree with. However, we also hold ourselves to a different set of standards than what we deem as societally-acceptable. That's just life.). I'd love to hear from you--all of my readers. Where are you on this?

Tuesday, September 24, 2013

Smokin' Hot...

On the eve of my fun surgical procedure (click at your own risk), I'm feeling...well, I don't know what I'm feeling. Today was a day of awesome co-workers (and I really do love them...promise) provided an endless supply of burning-of-the-uterus jokes.  Smokin' hot, burn-out, en get it.  In fact, I joined in on the action. I absolutely face stress with humor. I figure you can either laugh, or you can cry. Given the choice, I will always choose laughter.

I'm a bit sentimental though. Yeah, I'm technically "Advanced Maternal Age", so having more kids isn't the best idea anyway, but man do I have some baby fever.  A co-worker and friend brought her baby to work this week, and I swear, he was like crack. He smelled good, he cooed, he did the whole lay-on-your-shoulder-like-a-sack-of-flour thing. He was precious. I want one. I want one bad. My kids are at the perfect age to have another. And body (not to mention Marty's) has other ideas. Infertility is a bitch...excuse my language, but there's no other way to put it. Anything less harsh doesn't do it justice.

On the flip side, I'm so happy with what I've got.  I would say "I'm blessed", but I kind of hate that phrase.  Sometimes people say it to you when you ask how they're doing and it comes across as almost haughty, like they have something you don't have. It gets to me--but that's a great way to put it. I'm lucky. I have two fantastic, entertaining, miraculous children. My heart is seriously full every time I'm around them. There's this scene in what is probably my absolute favorite movie of all time--Lost in Translation. Charlotte (Scarlett Johansson) and Bob (Bill Murray) are talking about marriage and having children. Here's their exchange:

Bob: It gets a whole lot more complicated when you have kids.

Charlotte:  It’s scary.

Bob: The most terrifying day of your life is the day the first one is born.

Charlotte: Nobody ever tells you that.

Bob: Your life, as you know it… is gone. Never to return. But they learn how to walk, and they learn how to talk… and you want to be with them. And they turn out to be the most delightful people you will ever meet in your life.

Charlotte: That’s nice...

It's the most perfect quote to describe parenthood. My kids ARE delightful. I delight in them every single day--even when Anderson tries to delay the bed time routine about 10 times...even when Amelia is so engrossed in Mickey Mouse that I can't get her to answer a single question. Always. They're just awesome.

So...I say goodbye to fertility with mixed feelings. Sad that things weren't different. Happy for what I've got. Grateful. Wistful for what might've been. The procedure starts at 1:15--wish me luck.

Wednesday, September 18, 2013

Making Contact

**Disclaimer: if there are any missing periods in this post, it's because the button on this laptop is sticking horribly. It is NOT bad writing.

I'm big on oral hygiene here in the Jones household. I have a condition which leaves the enamel on my own teeth very weak; combine that with "deep crevices", and you end up with a person who pretty much leaves every dentist appointment with a filling.  As I've shared with you before, we have a fun (read: painful after three months of doing it) bedtime teethbrushing routine, which helps me sleep at night because I know that the kids' teeth are taken care of appropriately, so that hopefully they won't have a life of miserable dentist appointments like me.

Part of getting them more into brushing has been electric toothbrushes.  With Anderson, I knew it could go either way--he'd either really LOVE it, or really HATE it.  Fortunately, he loved it. I love it, too--I feel like it buys me time in their mouths brushing because they tolerate it better, and it gets their teeth cleaner. Unfortunately, when the kids get sick, we like to replace their toothbrushes. Now, I'm not talking Sonicare for the kids; I just get the cheap-ish little battery-operated toothbrushes. Still, they cost more than plain brushes, and I hate wasting money on those kinds of things.

Recently, we went through a little round of stomach bugs at home, which of course prompted me to get new brushes for the kids. Quite frankly, I wasn't liking the thought of shelling out ten bucks for toothbrushes. Yeah, yeah...I know that's not a lot of money at all. It's just the principle of the matter. Then, the Target Gods shined their heavenly light down on me and there they were--CLEARANCE electric toothbrushes! With convenient two-minute blinking light timer to encourage proper brushing time! Barbie! And Spider Man! It couldn't have been more perfect. I snapped up the last two clearance brushes and excitedly took them home. Of course, the kids were thrilled with them. Lights and sounds and the Mommy Dentist--there was Great Excitement in our house at bed time.

For a few days, all things were normal.  Then, one night as we were collapsing in exhaustion onto our respective couches after our ever-growing bed time routine, I heard a very odd noise. My first thought was that one of the kids was up and playing with something in their room. I jumped up, prepared to do battle with a stubborn four year old. However, as I stood crouched between their doors, ready to throw open the door and catch the offender red-handed, I realized it was not in fact a misbehaving child, but rather a rogue toothbrush.  At first it sounded like this...

"bzzzzzzz, bzzzzzzzz."

Then, later, it was a full-on two minute buzzing and flashing. Hmm.

Every day since that time, the possessed toothbrush has randomly come on. Generally it starts at the most inopportune times--like when we are trying to get Anderson to focus on peeing before bed (he finds it HYSTERICAL...), or when I'm trying to sneak a nap on the couch for ten minutes while the kids play outside with Marty. I got all settled in and was just dozing off when I heard that stupid buzzing--it scared the crap out of me. The next night, as he laid on the couch with his eyes half-closed, I begged Marty to get one of his mini-screwdrivers and take the battery out.  His solution was just to close the bathroom door. This doesn't work for me because I have an aversion to repetitive noise. Thank God for my air purifier and its magical white noise.

 Sometimes, I can almost convince myself that it's Morse code, and that someone is contacting me.  Is it the St. Dentistine, the saint of good oral hygiene commending me for tricking my children into letting brush and floss their teeth? Or St. Motherwell, the patron saint of good parenting, trying to tell me that Mickey Mouse Clubhouse does not count as an educational experience? Regardless, the toothbrush is STILL. GOING.  As much as it has come on in the last week, you would think that the batteries would be dead.  Seriously.  When we finally take the battery out, Marty is sure that the Energizer Bunny himself is going to jump out. Regardless, I'm getting a little freaked out. Time for another Target trip.