Thursday, December 29, 2016

So What Do You Do?

My husband is pretty awesome. He helps around the house…a lot.

For example, while the girls and I were at a movie on Monday, Tom took down all the Christmas decorations (including the tree), put them all away and then cleaned the family room, which is where the tree had been.

He also put up a light my mom gave us for the girls’ room. It’s lovely. Wanna see?

Yep, pretty, right?

He also makes dinner for the girls several times a week as well as packing Liv’s lunch each evening for the next day at school.

Since he works from home, he’s the on-call parent when there is a snow/fog day, a sick kid who has to stay home (though since having their tonsils ripped from their throats, both of my girls have been doing really well as far as colds/illnesses go (now I’ll go knock on wood because I can just hear the karma bus revving it’s engine.)) and during holidays like this past week.

So yeah, he does a lot for our family.

Yesterday while at my mom’s house talking about all that Tom does, one of my aunts asked me, “So what do you do beside lay around and look pretty?”

Which…okay. I know she was almost, sort of joking and if I’d called her on the question, she’d have told me to stop being so sensitive, it was a joke but really? REALLY?!? What do I do?

Well, first, I leave the house five days a week and go to work. I provide our family with the insurance that paid for both of our girls to have their tonsils removed so they could get through a month without a strep diagnosis. I earn a paycheck that pays for our groceries every single week and buys the little things like a trip to the movie theater every few months.

And when I get home each evening after work I am the mama. I parent all evening long. Sure, Tom might have made the dinner but I make sure they eat it. I call them to the table, I sit with them while they eat, I listen to Alyssa talk about Pentatonix and Olivia tell me the elaborate dreams she wishes she’d had. And though he packed Liv’s lunch, I sit with her each evening and make sure her homework is done. I help her study her spelling words. I sign her agenda, I meet with the principal and her teachers when it’s IEP time.

I change Liv’s sheets at least three times a week. I make beds and fold and put away the laundry.

I sit with a girl on each side of me for hours every single night, seven nights a week and rub Liv’s back while Alyssa shows me a YouTube video of Pentatonix that she’s showing me several times before.

But honestly, does it matter?

How we run our family seems to be working for us. We’re all in a really good place right now and it really shouldn’t matter if others can’t see that.

And for the record, the aunt who asked the question has a very helpful husband too. They’re both retired and while she shops and visits with her sisters, he steam cleans their kitchen floor. But I’m not judging that because it works for them.

I guess what it comes down to is the fact that I sometimes feel like I don’t do nearly enough to make an impact in our family. I feel like Tom does so much more and having someone from the outside looking in question my contribution to our family stung a little because it was like the voice in my head that is so freaking mean to me came to life in the form of an aunt. And to have to stand there and justify my very existence in my marriage, my family was hard. It hurt to hear the question voiced by someone else because even though Tom seems to think I do enough and he never, ever complains about how much he does, I still wonder if I’m ever going to be or do enough to deserve him.

Wednesday, December 28, 2016

The Making and Breaking of Traditions

Years ago, when Tom’s older kids were still teenagers, we started the tradition of having pizza on Christmas Eve. Tom’s divorce agreement meant that his kids came over to our house on Christmas Eve, spent the night, had Christmas morning with us and then were back at their mom’s house by noon on Christmas day.

Well, since Tom’s oldest son was eighteen on our first Christmas together, that was the first and last Christmas Eve he spent the night but for the next few years, he did still come over and have pizza and open some presents.

The pizza thing, though, is one we’ve continued with the girls. Now that the older kids have families and lives of their own, we make plans to visit one or the other son’s house sometime around Christmas (this year, we’re heading down on New Year’s Eve.) or we invite them to drive up to see us. It’s only an hour and a half drive but it’s easier for us to make the trip since A and O are older than the grandkids and, well, there are only two of them and between them, J and D have six kids.

Another tradition is that I don’t want to go anywhere on Christmas Eve. Wait, let me clarify. What I mean is, I don’t want to have to go shopping on Christmas Eve if I can help it. I will travel to see family but shopping…please no.

This year, that tradition was derailed when the girls opened their Christmas Eve jammies and we realized that the Monster High onesie (a sleeper with feet?) that I’d gotten for Olivia JUST fit her. As in, if she grows another inch it will be too short and too tight. So I did go to Walmart on Christmas Eve to exchange the onesie for the next size up. Yep, my ten year old needs a size 14/16 onesie because girlfriend is just that tall.

But I was home by noon on Christmas Eve and we still had our pizza and hot & sour soup (a new tradition I started this year because…yum) and played our board games and I was done wrapping presents by 4:45 that afternoon, just in time to play The Game of Life with my girls.

Traditions, if they work and you enjoy them, keep up the fun. I’m learning, though, that if the traditions don’t work (you know, like the kids grow up and start to have lives of their own) you roll with it and let them go. You move on and find new traditions, new ways to make memories and have fun without the stress of upholding someone else’s idea of how the holidays are supposed to go.

Tuesday, December 27, 2016

Almost Too Much Fun

Is it possible to have too much fun? If so, I think the past four days (a FOUR day weekend for the win!) would rank right up there as too much fun.

There were games at the kitchen table, there was chocolate consumed like we might never see it again. We ate Chex mix until we thought we might burst, Olivia and I competing to see who could find the most Melba toast and eat it before the other could snatch it out of our hands. She won.

Best of all, though, was Christmas morning when we got to my mom’s house and the girls opened their gifts from Gram and Pawp. Alyssa stunned and thrilled by the laptop my mom got her. And Olivia…oh my goodness, who knew a Karaoke machine was the key to that girl’s heart?

Oh wait, my mom knew. I took several videos of her singing into that microphone with all her might.

The girls and I went to see the new animated movie Sing yesterday. I think, for A and O, the fun of seeing a movie in the theater is more about the snacks and being next to me than the actual movie.

When we got home, I sat down at the computer to check Facebook and within five minutes, I had a girl on either side of me. I laughed and said, “Wasn’t the last three hours of being next to me enough?”

Alyssa informed me quite seriously, “Mumsy, we can never get enough of you.”

Which…awwww and yet…dudes, a little space once in a while? I mean, just a couple of inches to either side would be appreciated.

Then, as she was reading memes to me last night, Alyssa stopped for a second, gave me a look of realization.

“What?” I asked, wondering what was going on in her head. Her brain never stops and she’s always got some fascinating nugget of information to share with me.

“It’s that moment when you realize that your celebrity crush is exactly like your mom.”

I admit it, I laughed at that one. Then I patted her on the shoulder and said, “Well, I supposed every kid’s first crush is probably their mom so…you’re just transferring your feelings of admiration and love for me to Avi.”

She blinked at me a few times and then declared, “I guess I still have a crush on you, but in the way that’s normal and not weird at all.”

Again, I laughed because…well, it was funny. “Nope, completely normal and not weird at all.”

I am so lucky to have another four-day weekend looming. I hope we managed as much fun as we did this past four-day weekend.

Wednesday, December 21, 2016

Programs and Concerts and Parties

This week has been jammed packed full of things to do and places to be.

Olivia’s school program (The Night the Toys Came to Life) was originally scheduled for Monday, December 12, at 7pm but since school was closed due to…was it fog this time or snow? I have no idea. Since school was closed, the program was postponed. Then it was rescheduled for Monday, December 19…at 1pm. Yep, smack dab in the middle of the freaking work day. Sigh.

I had scheduled Tuesday, December 20 as a vacation day months ago because that was the day that O’s class Christmas party was scheduled. It was to be my last vacation day of the year. Thankfully, we roll over on January 1st so I only have five working days until I can take a vacation day. How will I make my way through the next week knowing I’m out of vacation days?

Because of the change in day and time of O’s Christmas program, I switched my full-day vacation day from Tuesday to half day vacation days on both Monday and Tuesday. I could go to both the program and the party. Whoohoo! Of course, that meant for hectic mornings at work as I tried to get a day’s worth of work done in four hours but we do what we must (dramatic sigh…)

Throw in Alyssa’s Jr. High band and choir concert on Monday evening just for fun and we’ve had a busy few days this week.

Is it really only Wednesday?

On the bright side, this morning I only had to get myself up and dressed because as of yesterday at 3:02pm, the girls are on Christmas break. Thank you Lord!

Friday, December 16, 2016

Look How Far We've Come

This morning about a half hour before I usually leave for work Tom came upstairs to ask me if I could leave a little early and take Alyssa to school. She’d just told him that the junior high choir was supposed to sing Christmas carols at school starting at 7:40. The bus doesn’t get her to school until 7:45 at the earliest.

I told him I could make that work and we all went about our morning.

As I drove toward the school, Alyssa said forlornly, “I just don’t want to be the only one there.”

“Why would you be the only one there?” I asked her. I mean, weren’t all the other kids going to be there to carol too?

She said that her friend S said her mom would be dropping her off at 7:36. Which is…oddly specific. But whatever, I had to drop Lyss off at 7:30 because any later could very well lead me to being late for work.

I made soothing noises and assured her that even if she was the first one there, she wouldn’t be there alone for long.

As we pulled into the school parking lot, I pointed out the three cars parked in the front lot. Then I joyfully pointed to the other lot, which has LOTS of cars. Lyss rolled her eyes and reminded me that I was talking about the teachers’ lot and duh, of course they were there early. But what if none of the other choir students were there?

I refrained from rolling my eyes back at her (because I’m not a teenager and so I am supposed to be the mature one here) and told her to just put her backpack in her locker and then go to the choir room and everything would be fine.

Then I asked her if she wanted me to let her out by the sidewalk.

“No…” she said a bit sadly.

“Okay,” I said, still refusing to make any of this a big deal. Because it WASN’T a big deal. Then I pulled into the parent drop-off/pick-up parking lot, unlocked the car doors and said, “Kay, bye. I love you.”

She gathered up her backpack, gave me one last look and got out of the car.

As she started to close the door, I said with a smile, “Sing pretty!”

She grinned at me and as she walked away, I put the car in gear and headed for work.

I was probably a mile away when it hit me how far we’ve come.

When Alyssa started kindergarten, I walked her in to school every single day all year long. I walked her in, I waited with her in the lobby with all the other kids and when the bell rang, I watched her walk away so that if she turned around, she would see me still there.

I was gently urged by the office staff to just drop her off and go about my day. But this was my BAYYYYBEEEEE and she was scared and didn’t want me to leave her there all alone with all those other monsters children.

First grade was at the same school and it was more of the same, though I did managedto get her to agree to me walking her to the door and then I would just leave. It was a step in the right direction.

We moved right before she started second grade and so she switched to the school she currently goes to. This school is a twenty-five minute drive from where I work (as opposed to the five minute drive from her first school.) I simply couldn’t justify being almost a half hour late to work every day. So I drove her to school that first semester but she had to get out and walk in by herself. I still worried, incessantly, every single day. And I watched her from the moment she got out of the car until she was safely inside the school before I pulled away.

Her second semester of second grade brought a whole new step in this adventure…the bus. She worried herself sick about the bus but it was necessary. I just couldn’t do the drop off anymore and the bus went RIGHT by our house. I mean, duh, right? Of course it did. It’s the freaking school bus.

She couldn’t sleep the night before her first bus ride. I had to talk her down for hours, gently urging her to try to sleep even as she fought tears of nerves over this big new thing.

When I got home the day of her first bus ride to school her first words to me were, “I love the bus!”

And it’s been fine ever since.

But this morning’s drop off…it was something else. I knew she was nervous about the idea of being alone in the school but I also knew it was kind of silly. There was no way she’d be completely alone in that school. Even if none of her friends were there, there would be people and she’d be fine. I knew she’d be fine even if she was bored during her wait for her friends to show up.

This time, I didn’t indulge her nerves. I didn’t coddle her. She didn’t need me to either. She just voiced her fears, I assured her she’d be fine and when I get home, I’m betting she’ll tell me the caroling was great fun, having forgotten all about that bit of nerves over the possibility of being alone for all of six minutes this morning.

Not only have I come a long way in this parenting gig, but so has she. My girl is growing up and she’s doing so beautifully.

Tuesday, December 13, 2016


I think that’s what Olivia was feeling this morning. Mornings can be rushed and when you need extra time to things, well, it can feel like everyone is rushing you and that makes it harder to do even the simplest things.

I feel like we (every person in our house other than Olivia) need to be reminded often that she’s not deliberately making our lives harder.

I truly believe she isn’t. She’s just quirky and different and has her own way of doing things. She’s got a method and if we give her enough time and patience, she’ll get things done.

She cried this morning. This was one of those times when I wasn’t the one who made her cry. I won’t name names but it was the other adult in our house who made her cry. He was frustrated that she was trying to put on her socks while holding a ring in her hand.

And yes, that’s pretty frustrating because, duh, it’s hard to put on socks if both your hands aren’t free. But he snatched her beloved ring out of her hand and ordered her to put on her socks. She did it but I could tell from across the room that she was fighting tears.

I took her to the bathroom to brush her teeth and while in there we had a good hug. I told her to take off her glasses and just be sad for a few minutes. Then I told her I was sorry that her family isn’t more patient with her. And THEN I told her how much I love her.

She dried her tears and we brushed her teeth and I think she was okay when she boarded the bus for school.

But things aren’t always perfectly rosy around here. They’re hard and Olivia and her stubbornness and her quirks can make even the mundane just a little harder.

We’re still working on getting her to feed herself. She’s capable but she…doesn’t wanna. She wants us to feed her. She wants to sit at the table and doodle or play with a doll or just listen to the conversation, often piping in with her own thoughts or stories and have someone (preferably me) sit next to her and shovel food into her mouth. But she’s ten. And she’s got to very capable hands and Tom and I both want her to feed herself. So we’re working on that. These days, meals don’t often lead to tears but they have in the past because when she’s forced to feed herself it takes forever. And she hates cold food which means she asks us to warm up her food, which means we’re frustrated because if she’d just eaten the damned food when it was placed in front of her, it wouldn’t have gotten cold and just give me a freaking spoon and I’ll feed her myself because this is a nightmare!

So yeah, that’s going on.

I honestly don’t think she does it all on purpose. I mean, sure, she’d much prefer to be fed than to feed herself but I don’t think she sits there thinking to herself, “Well, this is stupid and my parents are stupid and I hate having to feed myself so I’ll just let my food get cold and then ask them to warm it up and then, after they’ve yelled at me for letting it get cold, they’ll just feed me because that’s easier.”

No, I don’t think her laziness is that calculated. I think she wants what she wants but doesn’t manipulate us into getting what she wants. It’s hard to explain.

I just don’t think Olivia is that conniving. I think she’s stubborn. I think the things we often take for granted as being easy are harder for her than we realize. I think she’s still weaker than we probably realize and I know she’s sensitive.

I know we owe it to her to be patient and firm and loving as we continue to work with her to show her how much she really can do. We need to continue to expect her to do all things and yet be kind to her when those things are a little harder for her than we think they should be. We just don’t know how her brain works. We don’t know how tired her hands might get as she struggling to yank those darned socks over her toes. We don’t know how her skin feels when fabric is rough or itchy.

We don’t know and we have to trust her to tell us. We’re so lucky that she can but we have to listen to her. We have to give her a chance to explain to us when things are hard. We have to be loving and understanding that comfort items, like that ring this morning, are what help her get through the day and it doesn’t occur to her that it would be easier to put her socks on if she’d just put the ring down for a minute. So we need to explain that too her instead of yanking it out of her hand and making her cry.

We’re going to keep trying. We’re going to keep failing and then apologizing and hugging it out and drying tears (hers and ours) and trying again. We owe that to her. We owe it to ourselves so we can sleep at night knowing we’re doing our best. She (and her sister) deserves nothing less.

Monday, December 5, 2016

One More Birthday Party

We had Olivia’s ‘Friend’ party on Saturday. I mean, you only turn double digits once, right? So why not have three parties (if you count us taking treats to her class on Tuesday after Thanksgiving/her birthday as a celebration, which, yes, I do.)

We only invited a couple of friends because we knew that Olivia would be overwhelmed if more than two or three of her classmates were to show up. With just two (and the big sister of one, who is friends with Alyssa, win/win!) Olivia could be her weird little self for a bit, warm up to having her two worlds colliding and then settle down and actually have fun with her classmates.

And that’s just what happened.

Tom and I spent most of Friday evening and Saturday morning cleaning the house. We’re lucky not to live in filth, so the cleaning was mostly just picking up clutter and dusting (okay, so maybe the layers of dust do count as filth...) but once the carpets were vacuumed the kitchen swept we felt pretty good about having company.

Tom even said, “We’re having nine-year-olds over, how much cleanliness are they going to notice.”

Well…the first guest arrived, one of the said nine-year-olds and one of the first things she announced as she walked through our living room was, “Wow, your house is WAY cleaning than ours.”

Which…hahaha. That was funny. I won’t tell her mom she said that because that would just be mean. But it was still really funny.

I told her, “Well, you do have a little brother and little sister. They probably make pretty big messes, don’t they?”

She gave a melodramatic sigh and said, “Yes, they sure do!”

I’d bought flower pots and paint and let the girls paint. Then we potted spider plants in the pots and the girls got to take their painted pots home with a new plant.

There was a Barbie cake to be eaten and presents to opened.

It turned out that two hours was the perfect amount of time to have guests over for a birthday party. The girls were sad when their parents arrived but honestly, I was kind of ready for the party to be over.

And so ends the November birthday season. Let the Christmas celebrations begin!

Thursday, December 1, 2016


I know I already did a post on Olivia's tenth birthday...but this isn't so much about her actual day but about how far we've come since her day she was born.

As we celebrated Olivia’s tenth birthday last weekend, I watched in awe as this girl, this sweet, sassy child ran around like a loon, ate cupcakes, opened presents and danced like no one was watching.

I watched her do all these things while remembering her first few minutes of life, when she was so floppy and gray, when three nurses worked on her to get her to breathe. I remember those first few hours when she lay under a cylinder that pumped oxygen into the air around her head to keep her breathing.

I remembered going to sleep the night she was born knowing she was over sixty miles away in another hospital, her daddy with her (he drove to Fort Wayne after she was loaded into the ambulance that took her away from me and he actually beat the ambulance to the new hospital.)

I remembered waking up the next morning and calling Julie to tell her about Olivia’s trip to the NICU, not even thinking about the fact that my call was probably a major trigger for Julie.

I remembered waiting impatiently for my doctor to come and release me from the hospital where I’d delivered Olivia sixteen hours previously so I could go be with her.

I remembered Tom greeting me and my mom and Alyssa at the new hospital, showing us how to check in, wash our hands and then leading us to O’s isolette.

She’d already kicked out of the swaddle the nurses had attempted. Tom introduced me to Liv’s nurse and she was lovely. She told me kindly that my girl was spunky and would not stay in a swaddle for anything. “That’s a good thing,” she informed me. “It shows fight. We like that.”

Oh my goodness, yes did Olivia have fight. She still has it.

As the memories faded and I focused on my sweet girl celebrating her tenth birthday, I found myself overwhelmed by my love for her.
I love this girl so much that it hurts sometimes. But watching her, still awash with memories of her first hours and days, I realized that I don’t love her because of her rough start or in spite of it. I don’t love her because of her syndrome or in spite of it.

I love her because of who she is. Sure, her first hours and days of life helped shape the person she is. Sure, 5p- syndrome is a part of who she is but neither of those things define her any more than the fact that she has blue eyes defines her.

Olivia can be such a weirdo and yet…I love her both because of that and in spite of it.

As we venture further into this life and further away from Olivia’s first hours and days (and yes, even her first months because those were hard too) I see this girl for who she is, not how she started, not based on a chromosome count.

I see a girl with a startling sense of humor. Her laugh is contagious and she gets the subtleties of sarcasm that some people twice her age might miss. She can start to tell a funny story and start laughing so hard at her own rendition of the story that you find yourself laughing simply because she’s laughing too hard to even tell the story.

She tries so hard. She wants so badly to be ‘normal’ and to learn all the things that her peers are learning and yet…she sometimes gives me a look during homework that tells me she knows…she freaking KNOWS this stuff isn’t important and she is forcing herself to just muddle through it because it’s expected of her.

Her joy is infectious. She loves life. She loves to be pretty and fancy and will accessorize you to within an inch of your life if you let her. She has amazing hair (look how far we’ve come on that subject!) and yet loves to wear wigs because they’re different and she just feels like they’re one more accessory. Oh, and because it annoys the crap out of her sister when she wears them, which is always a plus when you’re ten and your sister is almost fourteen.

The first ten years of Olivia’s life were a rollercoaster but we had so many more ups than downs and I feel so incredibly lucky to be along for the ride with this girl. If the theory that some believe is true, if we choose our life before we’re even born, I am so, SO grateful that Olivia chose me to be a passenger in the car that she’s driving along the road of life.

Wednesday, November 30, 2016

So Much Crap

We’re having two of Olivia’s classmates over on Saturday to celebrate her birthday. Obviously, it’s a very small party but Tom and I talked about it and decided that Olivia would have more fun and might actually talk to her guests if there were just two of them.

In preparation for this ‘party’ I have been attempting to clean/organize the toyroom. It’s a disaster and just stepping inside the door of the room last week was depressing.

But I’ve made strides in cleaning it up. One can now walk into the room without stepping on anything. But there is still so much stuff in there. SO…MUCH…CRAP.

And yet here I am, making lists of more crap to buy my girls for Christmas. It’s kind of a sick, relentless cycle.

I looked around the room, which needed vacuumed once I managed to get all the crap off the floor and saw all the things that need to be purged.

We have toys that neither of the girls has played with in years. YEARS I tell you.

We have blocks that need to be passed on to some awesome kid who likes to build things with blocks. Olivia has always hated blocks. I think it stems from her first year of therapy (yes, she was only a year old but some things can take hold even that young and manifest years later…) when she was forced asked to use the blocks to make ‘trains’ and towers and other stuff she had no interest in doing.

Alyssa played with those blocks back when she was as much into horses as she is now into music. She used those blocks to make corrals and training circles. She made very elaborate arenas in which her horses performed. These days? Those blocks are taking up space and need to go.

The amount of tiny crap that has accumulated in our house is insane. We have left over Squinkies all over the place, we have tiny Barbie Leggos, I filled a bag with used (but not completely!) lip balm and Olivia was ecstatic to carry that bag around all day last Saturday, layering her flavors of lip balm.
Now that we have to children whose ages are in the double digits, it’s time to get rid of so much of the clutter. It needs to go not only because the entire house would be easier to keep clean but also because I have to wonder why we’re keeping that crap. For whom are we keeping it? Not the girls…so am I keeping it for me? For the sentimental value of simply having it in the house?

I don’t get nearly enough emotional benefits from that stuff to justify keeping useless crap that no one wants or needs or really even cares about. It’s time to send that stuff away and hope it finds a good home where other kids will love it and treasure it.

Let the purge begin.

Monday, November 28, 2016

Double Freaking Digits

So yes, Olivia turned ten yesterday. She was so excited about her birthday in the days leading up to it, she almost couldn’t stand it. It was adorable and exhausting all at the same time.

She’s loved her birthday for years but this was the first one to which she really looked forward. She told Alyssa at one point over the weekend, “On my birthday, I’ll practically be a teenager.”

Ha! Hahaha… except, no. Not yet, my babiest girl.

She asked me several times if I thought she’d wake up on her birthday and be taller than Alyssa. I indulged her a couple of times but then gently reminded her that growth doesn’t actually work like that.

She listened to my explanation of how kids actually grow every single day, not just on the night before their birthday and then, when I was finished, she narrowed her eyes at me, shook her head once to let me know that she thought I was a bit of an idiot and then the bounded away, announcing to Lyss in the next room that she was, in fact, probably going to be taller on her birthday.

At ten, Olivia is still very much into Monster High. Her birthday presents were a Monster High sheet set, a Monster High book and a Monster High movie. She also got a new necklace and earring set, because, yes, that girl is WAY into jewelry. She currently wears three (or is it four?) bracelets daily.

She’s very into accessorizing. I kind of love it because I’m so NOT into accessorizing. I’m very bad at it and I love that she’s so good at it. I could totally see her becoming a stylist someday because it’s what she loves.

Olivia has attained a level of maturity that I’m so proud of. I often wondered how far she’d come when it came to emotional maturity but she’s getting there. She still doesn’t talk much at school but at my mom’s for Thanksgiving, she spoke in a normal tone of voice no matter who was in the room. She used her inside voice and asked clear questions even though my step-sister and her family, people we only see twice a year, were there. She talked while my brothers were next to her. And yes, she tried to climb on my head when my youngest brother gigantic dog attempted to lick her toes (that creature was put outside at that point.) but she talked. That’s the point. She talked.

She’s ten. She’s double digits. According to my babiest girl she’s practically a teenager!

Tuesday, November 22, 2016

Short Week

Because this is a short work week yesterday and today feel like they’ve been run at break-neck speed.

That opening sentence should probably just read: I’m tired.

I think at this point, I can safely say that Olivia is sleeping through the night. Though to be completely honest, she did wake me up twice on Saturday night to fix her blankets. So…hit or miss, I guess.

Except that her sleep is so much better these days as she edges in on ten (she’ll be ten in five days, so she’s more teetering on the precipice of ten more so than edging on it) than it was as she was turning eight. I remember those first eight years of her life. They were hard when it came to sleep. But then she turned eight and a month later started sleeping through the night five out of seven nights a week.

I call that victory. And sweet, sweet bliss.

When I got up this morning, Tom had turned on the space heater in my bathroom. That man is so kind to me in so many small ways. I will never be able to be nearly as kind to him in all these little ways and I am working hard at getting over my own sense of being unworthy of these kindnesses. He obviously WANTS to do them and I benefit from them. So…I need to get over myself.

My mom and stepdad got home from their vacation last night; which means I didn’t have to stop by their house this morning to feed their cat. It was a luxurious morning, having those extra fifteen minutes. I was able to spend them arguing with Olivia about which shoes she was going to wear to school (it is no longer sandal weather, sorry, kid!) and then brushing her teeth after ordering her to pee for over five minutes while she gazed lovingly at her reflection and fixed her earrings about three hundred times.

Have I mentioned how lovely it is to have a thirteen year old who is completely self-sufficient in all areas of personal hygiene? It’s delightful. I don’t even have to ask when that other girl (Not naming names but it’s not Olivia) last pooped. It’s so freeing, is what I’m saying.

So yes, this is a short week with holidays and large meals and perhaps a bit of shopping here and there.

I hope everyone out there (all four of you?) has a lovely Thanksgiving if you happen to celebrate it and a wonderful Thursday if you don’t.

Friday, November 18, 2016


So I started my Christmas shopping earlier this week. I mean, as much as you can call one item for each daughter starting shopping. Nothing is wrapped yet, so I’m way behind Julie in the area of holiday prep.

It is the season of the bun for Olivia and her hair. Last year, it was the year of the braid. We did all the braids one can possibly imagine but this year, she’s way into having her hair in a bun. She prefers a high centered bun but we’ve done middle buns, low buns, side buns, two buns ala Princess Leia. We use one of those donut things that you put over a ponytail. Then, when her hair is over the donut, we flip it over and then either twist the remaining hair or put it in colorful ponytail holders and wrap it around the base of the bun. She loves that her hair is up and out of her way and I love how neat and done she looks.

Alyssa’s obsession with Pentatonix is rivaled only by her newest love of Markipier. She’s adorable and yet…OMG, if I have to watch any of his videos one more time, I might just lose my mind. I think she’s watched everything he’s ever done seven hundred times and made me watch them six hundred and ninety nine times. I do wonder where this odd fixation with twenty-seven year old guys comes from…hmmm. Luckily, she’s a homebody and isn’t planning and road trips to go stalk these people anytime soon.

Finally, it’s Friday and I’m glad for it. I’ve had several early days at work and I’m ready to be done.

I’m also ready for my mom and step dad to be home from vacation because while it’s been great getting to watch their television (Hello, Holiday Baking Challenge) and eat their food, I’m kind of ready to spend an entire evening at home without having to go feed their cat, mouthy beast that she is.

Tuesday, November 15, 2016

About that Conference

So yes, I met with Olivia’s teachers last Thursday. It was a nice enough meeting that lasted, oh, maybe fifteen minutes.

Her regular classroom teacher was there was well as the special ed. teacher. This is the first year Olivia has worked with Mrs. B, the new(?) special ed. teacher. Mrs. A moved up to the fourth through eighth grades, which means Olivia will get to work with her again next year. Olivia’s worked with Mrs. A since kindergarten, so next year ought to be nice for Liv.

But we have to get through this year first.

Since Mrs. B is new to Olivia, it’s…going. She’s trying to bond with Olivia and get her to connect even a little. Olivia is slow to warm to new people but I do think she’s trying this year. The older she gets, the more she understands the rules and the more she tries to obey them. But sometimes she thinks the rules are stupid and so, well, she doesn’t want to follow them. I get it.

Mrs. H, O’s regular classroom teacher started the conference by saying, “What can we say about Olivia? She’s a mystery.”

Yes. Yes she is a mystery. We all agree with that. Everyone who has ever met and tried to talk to Olivia can see that this girl is a mystery.

We all agreed that there is so much going on in Olivia’s head, that she really is so smart and the real mystery is trying to help her figure out how to get all the information, all those ideas, all those thoughts out of her head and into the conversation or onto the paper.

Olivia does not test well. She overthinks tests and often doesn’t know what’s really being asked of her. Mrs. H showed me a test Olivia had taken the day before the conference. There were multiple choice questions as well as a couple of ‘essay’ questions, which are basically asking for a sentence or two.

Olivia had the right answer on most of the multiple choice questions but then tried to erase them and put new answers.

Mrs. H said that she often sits next to O during these kinds of tests and will put her hand over an answered question, telling Liv to move on to the next question.

Smart teacher.

I like Mrs. H better this year than I did when she was O’s KinderKids teacher. I think the fact that Olivia is more mature and heck, let’s be honest, Mrs. H is also four years older, helps. I think Mrs. H is a bit aloof, like Olivia, which means they both tend to wait for the other to make the first move in this teacher/student relationship.

And yes, we all know that Olivia can outwait a sloth. She is perhaps the most stubborn person I’ve ever known, so there’s that.

But really, at the end of the conference, we were all agreeing that we’ll keep pushing Olivia, keep helping her where she needs it and keep expecting her to perform at her best.

Really, that’s all I can ask of her teachers, to care enough to push her, to understand enough to accept her, mystery and all and to be mature enough not to take her idiosyncrasies personally. I mean, she is the kid in this scenario so…we’re going to go ahead and let her keep on being a kid as much as possible.

Monday, November 14, 2016


Alyssa follows (subscribes to?) quite a few people on YouTube. She enjoys silly videos and watches a lot of insanity. It amuses her and it amuses me when she shares it.

She found a young woman named Amanda and started following her. She enjoys this woman’s sense of humor.

Apparently, this young woman is a lesbian. One of Alyssa’s favorite videos from Amanda is where Amanda stands on the streets of New York and comes out to strangers. Alyssa thinks it’s hysterical that Amanda tells strangers she’s gay and then asks them if they love her as much as they did before they knew she was gay.

Over the weekend, Alyssa dropped the news that when Amanda came out as gay to her parents, they kicked her out their house.

They kicked their daughter out of their house. For being gay.

I just…I can’t even begin to fathom that line of thinking. I can’t imagine anything either of my daughters could do that would make me kick them out of our house.

I mean, I tried to think of something when Alyssa and I were talking and all I could come up with was, “Well, I supposed if you killed someone and ate their face, I might be worried for your soul.”

Alyssa asked, “Why on earth would I eat their face?”

“Well,” I said, “because you were crazy, I guess. I mean, why else would you kill someone to begin with? Maybe the voices told you to do it. But even then, I’m pretty sure I’d still love you. I’d just be scared you were going to eat my face while I slept.”

I know I’m making light of a serious subject (murder is pretty awful, even without the face eating) but I can’t fathom a parent disowning their child based on who that child loves.

When Alyssa first told me about Amanda’s parents I was speechless for a few seconds. I just gaped at her.

Then I said, “But love is love…is love.”

She looked at me with wise eyes and nodded.

Several of Alyssa’s friends have come out to each other. Alyssa and her friend Tessa joke that they’re the weird straight girls.

Honestly…I do not care if my girls are straight, gay, bi or even asexual. I don’t care if they eventually decide that they don’t identify as female. I want them to be happy and to find love. I want them to be kind and to surround themselves with kind people, with people who make them happy no matter how they define their relationships with those people.

As their mother, I just can’t imagine deciding that I don’t love my children based on the gender of the people they find romantically attractive. I mean…really? How freaking sad for everyone involved.

Friday, November 11, 2016

Good Music

In the midst of all the chaos and anger in the world right now, my mom and I were able to sit back and listen to over one hundred seventh and eighth graders learn from an amazing conductor.

I dropped Alyssa and her friend Tessa off at the school at 6:15 yesterday morning where they boarded a school bus (a small one because there were only seven kids and a teacher) that took them to Bowling Green, Ohio where they participated in a middle school honor band.

Later in the day, (after a conference with Olivia’s teacher, which deserves a post all its own) my mom and I drove to Bowling Green State University to join Alyssa and her friends.

We were lucky enough to get to sit in on some of the rehearsal so we got to see the conductor who was working with Alyssa’s group of kids. He was so great about engaging these kids. He listened to them, he made sure they were listening to him and he told relevant stories that made them realize how lucky they truly are to be doing what they were doing where they were doing it.

It was a very long day for all the kids. They got to BGSU at 8am, got their band assignments (there were three bands with about 100 kids in each, all seventh and eighth graders) and their music. Then they started practicing and with just a couple of breaks for lunch and dinner, they practiced their hearts out until the 7pm concert.

And that concert was amazing. Alyssa’s group learned four pieces of music and they sounded awesome.

I think the fact that we got to hear some of the rehearsal made the concert that much better for me and my mom. We knew how far they’d come and we knew how much the conductor pulled out of them.

I am so grateful to Alyssa’s school for giving her this opportunity. I’m so grateful to Bowling Green State University for hosting this event and I’m so, so proud of my girl who worked so hard, who made new friends and pushed herself harder than she thought she could.

She was very tired when it was all over but I could tell she’d had a blast. She loves music and she loves the fact that she can make music. Her conductor told the group, “Don’t just go out and make music. Make good music.”

I think that’s pretty awesome advice. If you can make music, make good music.

Tuesday, November 8, 2016

Two Buddies!

Of all the dance marathons we’ve attended over the years, I think IUDM 2016 might go down in history as the best one yet.

We arrived on Friday evening and after a decent four and a half hour drive (other than a few harrowing miles where the setting sun was blinding all the drivers and made for a bit of stressful driving) we decided to just hang out in our hotel room for the rest of the night.

Alyssa and I were even able to watch Z Nation as it aired rather than on Monday afternoon on DVR. That was sort of awesome and in the previews…there was Vasquez…yay!!

Anyway! Yes, we got up fairly early and headed to the dance marathon on Saturday morning. When we got there we expected to meet with our family ‘Buddy.’ This is a student who has been assigned to us, the person who will hang out with the girls the entire time we’re there, accompany us to the stage when it’s time to tell our story and just basically be the liaison for us for whatever we might need.

Every person we’ve ever worked with as a Buddy at both IU and Purdue has been amazing.

But this year…this year was the best one yet because both Olivia AND Alyssa got a buddy. There were two young women waiting for us to arrive on Saturday morning. Becca and Kylie were there to greet us, they had gifts for Alyssa and Olivia and they were so kind and thoughtful and good at being buddies. They made my girls feel like they were the most important people in that entire tennis center.

I think having a buddy specifically for her meant the world to Alyssa. In years’ past, Alyssa has always been treated well by the buddies but this year, she had Kylie all to herself. And having someone who was dedicated to making sure she had a good time was awesome for her.

I’m not sure everyone realizes how hard it can be to be the ‘typical’ sibling of a special needs kid. But Kylie wasn’t there for Olivia. She was there for Alyssa and it was so great to see Alyssa blossom under that attention.

Of course Becca was great with Olivia. She went in that bounce house more often than I can count and she was right by O’s side the entire time we were at the dance marathon. They were both always nearby, ready to do whatever the girls wanted or needed.

My mom asked at one point how people were chosen to be Riley Buddies. We were told that there is a long list of people who apply for the committee on which the Buddies serve. Not everyone who applies to be a buddy gets to be one.

We have always been so lucky with the young women who get assigned to our family but this year, having Alyssa get her very own buddy was the best thing of all.

It amazes me that these events manage to improve year after year. You’d think that at some point they’d hit the pinnacle of perfection, right? I mean, at some point there will be no way to improve, right? Maybe this year was that point. It certainly felt like it for us.

I am sending out huge thanks to both Becca and Kylie into the universe. May amazing things come to these beautiful, amazing young women who gave so selflessly last weekend to make my girls’ time so special.

Monday, November 7, 2016

Sharing Her Story

My mom joined me and my girls this past weekend in Bloomington, Indiana for the Indiana University Dance Marathon.

IUDM is an annual event that is put on to raise money for Riley Hospital for Children. We’re invited to attend this event as a “Riley Family”. Olivia was finally diagnosed with 5p- syndrome when she was two years and three months old by a developmental pediatrician at Riley. She had her heart scan, her kidney ultrasound and an initial x-ray of her spine at Riley.

We found a doctor who looked beyond Olivia’s beautiful face and saw a sick child and a mother who was doing everything she could to find answers.

We’ve been attending dance marathons since Olivia was four years old. We’ve climbed on stage and I’ve held a microphone while Olivia stood either beside me or in front of me as I tell the tale of her birth, the first few months when she cried pretty much all the time, the doctors who told me she was too pretty to have Cri du Chat.

I talk about how when she was two and still not walking, I asked her regular pediatrician for a referral to Riley because while he’s great at diagnosing ear infections and strep throat, he wasn’t all that proactive when it came to Olivia and her lack of meeting any milestones at all.

This year, though, I mentioned something I’d never said before. I told the audience, “This might be the last year I tell her story. I think she’s getting to a point where it embarrasses her and since it’s her story, well, it’s her choice if it gets shared.”

And they cheered. They cheered because this amazing girl who will be ten in twenty days is mature enough to make these kind of decisions. She’s smart enough to know her own mind and can tell me if something makes her uncomfortable. And I’m empathetic enough to listen to her, to understand that maybe it’s her time to make the call.

There is so much more to talk about from this weekend but for now…we might have just shared O’s story on stage for the last time but this doesn’t mean I’m done talking about her in smaller groups or here. I mean, she IS one of my favorite subjects and it’s still important to get it out there that a 5p- diagnosis isn’t the end of the world. It can break your heart for a minute but then you realize that your baby/child is still who they were in the moments before you heard the words Cri du Chat/5p- syndrome and you take them home and you love them and you expect amazing things out of them and they surprise everyone every single day with their strength, their joy, their stubbornness, their tenacity. And you surprise yourself with your ability to love someone so much, so completely and so unconditionally.

Thursday, November 3, 2016


There are moments when I sit back and wonder how I got so lucky. My girls are so sweet, loving, amazing. They’re kind and smart and funny.

And they love me so much. I sometimes wonder at the amazingness of that. I mean, what did I do to deserve them?

There are times when I am so far from perfect and yet these beautiful beings forgive me for my imperfections and love me anyway.

Last night I had a horrible headache. There was rain coming and the headache set in at about 1:30 in the afternoon and really took hold around 5:00pm. The rain started at 9:00, which is also when the handfuls of pain killers (ibuprofen and yes, ‘handfuls’ is hyperbole) kicked in. I finally started feeling better.

But before that point, Tom cooked the girls’ dinner. I helped Olivia with hers but Tom also washed the dishes because he could tell I was in pain.

Again…why am I so lucky? With all my faults, I get these girls, this husband; people who are so generous and kind and loving. They take such good care of me and at moments like last night, when I was feeling pretty worthless, it was humbling to know that they all love me so much…so much more than I feel I deserve.

I look into these eyes…

And I’m breathless.

I look at this face…

And I’m grateful.

Breathless and grateful that they’re mine. That they want to be near me, that they let me soak them in, that they share their perfect imperfections with me. That they forgive me for my own imperfections and love me both because of those imperfections and in spite of them.

If there is such a thing as past lives, I can’t help but wonder who I was and what I did to get so lucky in this incarnation.

Wednesday, November 2, 2016

An Orthodontic Consult

At her last cleaning, Olivia’s dentist recommended that Olivia see our orthodontist for her initial consult. She still has a lot of baby teeth (yeah, you’re welcome girls, for my dental genetics that means you lose your baby teeth WAY the hell after everyone else your age, sorry.)

Tom was kind enough to drive the girls into town to meet me at the orthodontist’s office. I’d already filled out forms and provided insurance information the day I scheduled the appointment.

This appointment was about pictures and x-rays and talking about what we were seeing in the pictures and x-rays.

At the beginning of the appointment, I told the consultant that we really didn’t want to start any kind of procedures on Olivia for at least a year. First of all, like I said, she has a lot of baby teeth that have yet to fall out. We also want to pay for it all up front and so, well, yeah, we need to save up for that price tag.

So there we were, looking at pictures of Olivia’s mouth.

The orthodontist came in and sat down with us. He showed me how Olivia’s teeth meet in the back and how her front teeth do not meet. Let’s remember that this child sucked her thumb until she was almost five, so yeah, there’s a bit of an overbite. What are you going to do? Oh, that’s right, put braces on those things in a year or so.

He said he’s not so much worried about the bite, we can correct that in time. But he is a bit worried about soft-tissue damaged when her bottom teeth come up against the gums at the back of her top teeth.

He also recommended a mouth guard for whenever Olivia will be participating in any sort of athletic events. I managed not to laugh at that one. He explained that with her two front teeth being a bit farther out than her other teeth, she could damage them pretty easily with a fall or being bumped by someone.

We took the mouth guard he offered but I did assure him that she’s not at all interested in any sort of sport that would put her in contact with other people.

The doctor did agree that we should wait at least six months before doing anything at all as far as orthodontics go. He wants to see how many of those baby teeth she can lose on her own before we have to do what we did to Alyssa and go in take some of those suckers out ourselves (or, you know, have a licensed dentist do it…)

So here we are; the same place we were yesterday before the appointment. Except, yay, Olivia got some free chap stick out of the deal. That’s always a bonus for her.

Monday, October 31, 2016

A School Party

I took a vacation day from work last Friday and helped at Olivia’s school Halloween party. I’ve been incredibly lucky over the years to be able to attend these parties with the girls.

I’m also lucky that they WANT me at the parties. Ha!

These parties are completely parent-led. We moms (and the occasional dad, there was one there this year, he’s totally a hero) plan the games, snacks, crafts, etc. We separate the kids into four or five ‘centers’ and then divide them into groups of three or four (and sometimes five) and put them in a center for about ten minutes where they get to play a game, do a craft or eat snacks.

This year Jaxon got to join me in Olivia’s class. His school was on fall break and so I invited him to come to O’s school party. His school doesn’t do parties of any kind so he was sort of in awe of this one.

I’m lucky that O’s teacher and all the other parents were so accommodating and just rolled with having one more kid in the room. Jax and O decided they wanted to be in the same group. He really is one of her very favorite people in the whole world and I was really glad they got to spend time together.

Olivia was acting up a little (flapping her hands, being giggly) because her mind was blown by the fact that her worlds were colliding. I mean, there we were, in her classroom at school and right beside her was Jaxon, the most awesome cousin in the world. And her mom was across the room helping kids make haunted houses out of craft paper.

I think the best part of the party, though, was when one of her classmates at my center asked me if Olivia talked at home. I get this question every year. I always answer the same way. “Oh yes, she talks at home,” I informed the boy. “Sometimes she talks so much and so loud that I have to ask her to quiet down for a few minutes just because I can’t get a word in.”

The boy laughed and said, “I’d like to hear her talk. She’s really shy, isn’t she?”

And there it is. Her class really seems to like Olivia. They don’t see her as a girl with a syndrome. They see her as this cute, funny girl who is really shy.

Way back when she was two years old and we finally got her diagnosis, her doctor told us that the fact that her face doesn’t give her syndrome away might be a double-edged sword. On the one hand, she looks ‘normal’ and so people expect her to act normal. This is what some parents have taken to calling an ‘invisible disability.’

On the other hand, looking ‘normal’ is a benefit because, well, people treat her like she’s ‘normal.’ They don’t see a child with a syndrome, they see Olivia. They see a shy girl who doesn’t talk much (at all?) and thankfully, they all like her enough to want her to talk.

I have hope that we’ll get there. I told the boy who asked the question that I hope she’ll talk to all of her classmates by fifth grade.

His eyes got huge. “Fifth grade?!?” he said. “I hope we don’t have to wait that long!”

Me neither buddy, but I’m being conservative here. For now, I’m glad she participates, that she can do everything currently being asked of her in a typical, mainstream classroom. I’m thankful that she’s accepted and that she still enjoys being at school.

And I’m thankful that I get to be there for moments like that Halloween party, to see her being silly, to see her classmates enjoying her antics and to see her cousin bring out even a little of her awesome personality for those who don’t always get to see it.

Can you stand the Draculaura awesomeness of this girl?

Thursday, October 27, 2016

How Olivia Felt

This is a follow up on a comment on my last post regarding Olivia and her status as a non-verbal child.

I showed Olivia the sheet of paper I made with her name and the phone numbers for her dad and her Gram. She read the paper and grinned at me.

I assured her that I would do everything I could, you know, like driving safely and being aware of our surroundings but if something happened and I couldn’t talk to anyone, she should hand that paper to a police officer or a firefighter.

She shrugged at me, and made some weird sounds because she’s Olivia and that’s what she does when she’s uncomfortable. But I knew she got it because of her shrug and weird sounds.

Olivia acknowledges that she doesn’t/can’t speak to strangers or really anyone who isn’t immediate family. I think she wants to do so though. I think she wants desperately to talk to her friends and teachers. She wants to be ‘normal’.

But right now, she can’t and so we’re doing what we can to help her until she can. Because you know what? I truly believe that we will get to a place where Olivia can and will talk to others. It may not be this year or even next but we will get there.

I have an aunt who is lovely. But she’s also a bit clueless when it comes to special needs. She asked my mom recently, “Why don’t you just make her talk to people?”

My mom and I laughed over this. I mean, sure, that sounds awesome. We’ll just make her do it.

Except it’s not that she won’t. She simply can’t right now. She tries. She whispers at school. She’ll talk above a whisper to all of two teachers/therapists/aides. These are women she’s worked with for over four years and it’s taken this long for her to be comfortable enough with them to make conversation.

At home, she’ll talk to one of her classmates when she’s there to spend the day. It takes a bit of time but if I leave them alone, she’ll eventually get over whatever it is that takes away her voice.

We are doing all we can to help her find her voice. We’re trying to so hard to make her comfortable and assure her that her voice is important and that we all want to hear it.

I don’t think making the paper for her to hand to emergency personnel scared her at all. I think she was pretty confident in my ability to avoid an accident and in my health. But having it back there made me feel better and I think Olivia is pretty aware of my moods. Since I felt better having it there, she felt better.

I love Julie’s idea of a bracelet with all that information for her. First of all, Olivia loves all things jewelry. And since it would be considered a medical bracelet, I’m hopeful that first responders would be quick to notice it. I’ll be looking into that before our next trip alone.

Monday, October 24, 2016


Olivia and I loaded up the car on Saturday and drove 162 miles from home to Purdue University for a dance marathon to raise money for Riley Hospital for Children.

Fun was had by all and it was great.

But…the time leading up to the trip was fraught with anxiety on my part.

See, this was the first time O and I had done this kind of thing alone. Usually Alyssa goes with us. But this year, she wanted to stay home and attend the birthday/Halloween party of one of her friends.

I figured that at thirteen years old, she’s old enough to make that kind of call and since Tom was home to take her to the party and pick her up the next morning, it really didn’t make sense to make her go with me and Olivia when she just didn’t want to do so.

But without Alyssa, it was just me and Olivia.

Which is fine, right?

Except…what if we were in an accident and I was unconscious? What if strangers tried to talk to Olivia, who looks like your typical nine year old girl and she just sat there? What if she was needed to tell them who she was because I couldn’t do so?

So I made a sign for her. It sat on the seat beside her and said, “My name is Olivia Ordinary. I have 5p- Syndrome. I am non-verbal. I my mom can’t respond, please call my dad, Tom Ordinary at XXX-XXX-XXXX…”

It also listed my mom’s name and her landline and her cell.

And the more I thought about that sign, the more freaked I got. I mean…obviously, we didn’t even need this little piece of paper with names and phone numbers on it. But I worried. I worried so hard.

But my worry transferred itself to the route we were taking.

The last time we went to Purdue University was two years ago and I missed a turn and got all turned around and flustered.

And damn it, West Lafayette is so freaking confusing. Of course it is. It’s a college town, so there are a bazillion one-way streets. It’s a nightmare when you only go there one time a year. So yeah, I was stressed about the drive.

But I probably wouldn’t have been nearly as anxious about the whole thing if it hadn’t just been me and Olivia going. Just the two of us…

We did it, though, because she really wanted to go. She doesn’t talk much (at all?) to the college student who is assigned to be her ‘buddy’ but she did go draw on a big dry erase board while I ate the dinner provided for us. And she and Sarah danced as we waited to go in and be introduced with all the other Riley families.

And in the end it was fine. I made the right turn at the right place and didn’t have to backtrack during the drive. I made all the right turns onto all the one-way streets and made it to our hotel with no problem.

Sure, we had to go back into the hotel twice to finally get out of the parking garage but that was low stress too.

I’ll probably keep that sheet of paper with Olivia’s name and the phone numbers in my car just because, well, it’s a good idea. I mean, even if Lyss and/or Tom were with us, well, we could all be incapacitated and she’d still need to be able to communicate and handing a piece of paper to a stranger is way more likely to happen then her suddenly speaking to them.

It’s just one of the things we have to worry about because we have a mostly non-verbal child. Sure, she’s not non-verbal at home but get her around anyone who is not immediate family and she’s clams right up.

If she could help it, I’d get frustrated but I don’t think she can. I honestly think she WANTS to speak to others but she can’t force the words out. And so for now, we’ll pass notes as necessary. The written word is still a form of communication and I’m going to run with it for as long as she needs me to.

Friday, October 21, 2016

And Then I Took a Nap

Last night when I got home from work, Tom informed me that Olivia had one page of homework to do.

I opened her folder and found THREE pages of homework. One was something she’d obviously started at school but hadn’t finished so it counted as homework because, yeah, we needed to finish it.

We sat down to work.

First we did the math. It was subtracting three digit numbers. No biggie, really. Except she also had to write an estimate of what she thought the answer would be AND come up with an number model of how she came up with the estimate. Ugh! So much busy work. I mean, seriously?

THEN! Then she was supposed to write a sentence on the back of the math worksheet explaining how she’d come up with one of her answers. I was all…what? For real? What were they even looking for? I truly didn’t understand what the point of that was. She subtracted…duh.

In the end, that’s what she wrote. “I used subtraction to find the answer.”

I’m sure whoever wrote the worksheet wanted a more in depth answer, such as, “I took four from seven and got three. I realized I couldn’t take seven from six, so I borrowed from the five, which made the six sixteen and the five four…”

Yeah, that wasn’t going to happen. Honestly, I don’t even think it would have happened with a typical third grader but it definitely wasn’t going to happen with MY third grader.

So the second worksheet was questions about a story we’d read the night before. They wanted to know pretty specific detail and I finally, by the end, just wrote by the last two questions, “We do not have this book at home. We cannot answer these questions.”

We had to study spelling for the test today. “Studying” entails me telling Olivia the word, her writing it down. I snapped at her after the first word, “You don’t have to write in GIGANTIC letters.”

In my defense, I was tired.

So she went the other direction and tried to write as small as she could. Sigh. I told her, “If you’re concentrating more on the size of the letters than the actual words you’re writing, you’re not actually getting anything out of this exercise.”

Then I had to fill out her reading and math log. I know she’s probably supposed to do it herself but , come on, it needs to be legible, okay? Each week, we have to do a second page of the reading log. It’s always a little different but it’s basically trying to get her to actually read for content rather than reading just to prove she can read the words.

When that was done, I had been home for forty minutes and hadn’t even taken off my shoes. I did just that and joined Tom in the living room where he was watching television. I told him I was going to lay on the couch in protest of homework.

I fell asleep about three seconds after laying down and work up over an hour later.

And that’s how I ended up taking a nap on a Thursday evening.

Tuesday, October 18, 2016

Everything and Nothing

I fought for over two years to find Olivia’s diagnosis. I have two years’ worth of posts (almost daily for a while) in the archives of ShareYourStory where I lamented not knowing what was wrong with my baby.

I also spent a lot of time talking about sleep because back then I was getting very little of it.

But that search for a diagnosis was very much the focus of a lot of my posts. I thought having a diagnosis would change everything.

In the end, it actually changed nothing.

We continued with therapies. We continued loving Olivia. We went on with treating her like Alyssa’s little sister, expecting that she would walk even if the research her doctor told us not to do (duh, of course we researched 5p- syndrome) said she wouldn’t walk.

We continued to talk to her even though the research said she would never talk back to us.

And I continued to post at Share. I continued to lean on the women I’d met there, women who were further in their journey and who understood my desperate need to help my baby be the best she could possibly be.

Nothing changed.

And yet, everything changed. Suddenly, having a diagnosis of 5p- syndrome (aka Cri du Chat) meant we had an answer to why Olivia only weighed five pounds and two ounces even though she was born nine days past her due date. That’s 41 weeks, two days gestation for anyone counting.

We now knew why she didn’t sit up until she was a year old, didn’t crawl until she was seventeen months old, why she didn’t walk until she was twenty-nine months old.

That answer meant the world to me; even if it didn’t really change anything.

It changed my heart. It gave me something to focus on. It let me see that even at two years old, Olivia was already defying the odds that the research gave her. It showed me that she was amazing and I was allowed to be so proud of her just for being her. Every single milestone started to mean even more than it already had meant, which was a huge morale booster.

But nothing changed when I thought about Olivia and who she was. She was still my feisty, stubborn girl who rolled her eyes at her occupational therapist. She was my second born, my baby, who fought so hard to learn everything that came naturally to her sister and her cousin, who was a year younger than she was.

She was still my competitive sweetheart who watched that one-year-younger cousin walk and decided that damn it, she could do that too. And so she did.

Getting that diagnosis opened a whole new world for us. It brought new Facebook friends into our world to show us that we were alone in this world of 5p- syndrome. Even though the statistics say that only 1 in 50,000 babies are born with 5p- syndrome each year, there are lot of these amazing kids out there. And their parents love them as much as we love Olivia.

But still, the diagnosis changed nothing when it came to my main source of support, which continued to be ShareYourStory. This is the place where I vented before the diagnosis and it’s where I’ve continued to post both celebrations and frustrations for the past almost eight years since receiving Olivia’s diagnosis.

This place is everything to me. It’s provided lasting, deep friendships for which I am so grateful. It’s a place where I can vent, where I can laugh and cry and not feel judged for anything that’s happened.

It’s a place where I can give back to others who are facing diagnoses of their own, who are facing NICU stays, who have been dealt the most difficult journey of all, a world without their child. In this place, we can support each other, lean on each other, be each other’s everything while expecting nothing in return.

Monday, October 17, 2016

The Best of Friends

I got home last night at about 8:40. I was supposed to be home around 7:00 but my flight from DC was delayed by an hour and then, it was raining in Detroit. I hate it when it’s raining and I have to drive roads in the dark that I’m not very familiar with.

But I made it.

And it was worth it.

My weekend was so lovely in so many ways. My flight out of Detroit left right on time and actually arrived in DC early. EARLY!?! I know, right?

I was the first one to arrive at the our destination city and so I was able to buy the girls souvenirs before meeting with the first of many friends who were coming in from all over the country. Around 11:30 the last of our core group arrived and we made our way to our hotel where we were lucky enough to be able to check in early and drop off our bags.

We managed to get a little sight-seeing in that afternoon and spend the evening laughing and, for some, (not me) drinking. Much bawdy laughter ensued during a crazy game of Cards Against Humanity.

I was lucky enough to room with Julie and Laura. And these two generous, gracious women let me have my own bed. See, they’ve known me for what seems like forever at this point and they know that Olivia STILL tends to join me in my own bed more often than I appreciate (once is more often than I can appreciate these day…just saying.)

But because they’re loving and generous women, they made sure I wasn’t missing home too much.

At one point, Julie pulled up Pentatonix’s cover of the song Cheerleader so I wouldn’t miss Alyssa too much.

And on Saturday morning, after Julie and Laura worked out at the hotel gym (I did not join them because, well, because I didn’t want to) Laura climbed into bed with me and asked me to scratch her back.

I responded to her the same way I respond to Olivia these days. I rolled away from her and muttered, “Sleeping.”

Everyone should have friends like this.

Wednesday, October 12, 2016


This time for the past, oh, eight years, I’ve gone away for a weekend. Away is in, alone, leaving the kids home with Tom. I’ve been to places like Houston, DC, Orlando, Atlanta, Phoenix and this year, I’m heading back to DC for three days and two nights.

I leave on Friday morning and will get home Sunday evening.

So yes, one weekend out of each year, I leave my family.

Yesterday morning as I walked into the kitchen, I heard Olivia ask Tom, “Why does Mom always have to go away?”


Obviously, this amuses me. I mean, 1/52 is not always. But when you’re nine years old and your mom is kind of your whole world, it feels like she’s always gone because that one weekend feels like it lasts forever and it blocks out all those other 51 weekends when Mom is home.

But it’ll be okay. They’ll be fine and next weekend they’ll probably have forgotten that I was ever even away…until next year, when Olivia laments again, “Why does Mom always have to go away?”

Never fear, I am leaving them well stocked. There is plenty of soup (never again will I leave them with the possibility of running out of soup!), I made oatmeal raisin cookies (Tom’s favorite) last weekend. This evening I’m making triple chocolate chip cookie (Olivia’s favorite) and sugar cookies (Alyssa’s favorite). The girls and I are going to the grocery store tomorrow after Lyss’s orthodontist appointment to get any other staples needed for the 64 hours I will be gone.

And, get this, there is a grocery store a mere ten miles away from our house. And even better, this grocery store allows men to shop there. I know!! So even if they do find that I’ve somehow failed them, Tom and the girls can get in his car, drive to the store and BUY anything their little hearts desire.

And because she’s a freaking hero, my mom is picking the girls up on Sunday around noon and taking them with her to a baby shower for my cousin. So they won’t actually be stuck in the house all weekend as they both feared.

Seriously, it’s going to be fine.

And best of all? I get to hang with some of the most awesome women I’ve had the honor of meeting and we’re all going to try and come up with more ways of supporting families who have lost babies, have babies in the NICU or bring home babies with birth defects.

This whole always leaving my family thing? It’s for a good cause.

Monday, October 10, 2016

Fall Fun

For the past four years, the girls and I have made a point of visiting a local farm and navigating their corn maze.

They have a wagon ride through the woods, a ‘train’ ride for the kids, which is really these weird plastic barrels with a side cut out of them on top of sets of wheels and then pulled by a tractor.

This year we invited my mom and my nephew Jaxon to go with us.

It felt like the perfect day to spend several hours outside. The sun was shining, there was a breeze blowing and it was a chilly 60ish degrees, which made jackets perfect and cozy.

As always, when we first arrive, Alyssa and Jax had to climb the stairs and go down several slides made from weird yellow piping/tile.

Olivia tried but got scared on the first landing of the stairs and I had to ‘rescue’ her. If Alyssa hadn’t already gone down the first slide, she’d have brought her sister down, she’s awesome like that. But since she was already on the ground on the other side of the apparatus, I went up the stairs to help Liv down.

Then Jaxon had to climb into the corn bin and scoop corn for a few minutes.

There were games to be played, tricycles to be ridden and let’s not forget about the maze we needed to navigate.

We finally headed for the maze with Lyss leading the way. She’s pretty good with the map.

Jax insisted on being right by her side and Liv wasn’t going to be left out so my mom trailed behind them, only giving directional advice when asked.

Alyssa rocked that maze. She OWNED it. It was really fun watching her confidently take turns and twists and backtrack when necessary. She’s just a perfectly awesome kid.

The littles (because in our world, even at eight and nine, O and J will always be The Littles) stayed right on her heels, following her blindly through the maze, trusting their hero to bring them out without any trouble at all.

After the maze, Lyss and Jax rode on the ‘train’. It was adorable.

Then we took the hayride through the woods. It was the perfect length, long enough to be worth the wait but not so long that two year old Connor (Jaxon’s little brother) got bored with it.

After the hayride, we wandered around a little longer, bought some gourds, my mom bought a beautiful bluish purple mum and then we headed home.

I’m thinking all three kids slept well that night. But I wouldn’t know because they spent the night at Gram’s. Which, of course, means I slept incredibly well because there were no calls of “Mom!” through the night.

Friday, October 7, 2016


Wednesday evening was rough in our house. Olivia couldn’t seem to fall asleep, tossing and turning and just basically driving me crazy on the couch.

Alyssa had found a new video (to her) of Avi Kaplan singing and playing the guitar. She wanted to watch it over and over.

At 9:10, Olivia asked tiredly when we were going to go to bed. I told her to just try to sleep right there and she sighed and rolled over again, digging her shoulder into my thigh.

I looked over at Alyssa, who was starting obsessively at her tablet. She saw me looking at her and sighed, “How have I missed this video all this time?”

I may have rolled my eyes at her. I mean, sure, I get it. She’s thirteen and she’s crushing hard on all of Pentatonix but Avi’s absolutely her favorite and so…I do get it and yet, at that point, I was over it

So I told her we were going to bed soon.

She sighed a different sort of sigh this time and said, “Can I just watch this one more time?”

I sighed (there was a lot of sighing going on in our house that night) and muttered, “Fine.”

It hit me. I was NOT being a nine mom that night. I was dipping into the low sixes if you must know. I was tired, I was irritated that my children would just NOT go to sleep. I wanted ten minutes of not having a one child rolling on me and another child talking to me about a group that I, while I can appreciate their talents, I’m kind of tired of hearing about.

I was just kind of done.

Olivia rolled over AGAIN and I stood up, pushing her off me. I declared, “Okay, let’s go. Sorry, Lyss, but I can’t do it tonight. That video will be on the internet forever. You can watch it more tomorrow. Come on, Liv, let’s get you into your bed where you can toss and turn all night long and NOT dig your elbows, head, and shoulders into my leg.”

Yeah, I was a real treat by this point.

We trudged up the stairs and as I was tucking Olivia in, she stopped me to ask me, “What about my Monster High blanket?”

I rolled my eyes and snapped, “Am I done tucking you in? Have I stopped and walked away? Of course I’m going to put your Monster High blanket on you…if you’d give me a chance!”

Again, not my proudest moment. But this child…she can make me crazy when she asks me to do the very thing I was just about to do if she’d have waited ten seconds before making her demand request.

I finally got her tucked in, Monster High blanket and all, kissed her goodnight (gently) and wished her sweet dreams when Lyss came into the room for her hug.

I apologized to her for being so grumpy and promised that tomorrow I would try hard to be better.

She assured me that she thinks I’m a perfectly fine mom and we went to bed.

So many sighs.

On my way home from work last night, I decided that I needed to go into our evening as if I were a robot who’d been programmed to be kind and loving. I told the girls this because I knew it would amuse them and they both told me that I’m weird. But they said it with a smile as we sat down to dinner so I felt like that was a win.

By the time we made our way upstairs to be that evening, I could happily say that I’d done it. I’d managed to be kind and loving and attentive to my children for most of the evening. I hadn’t yelled or grumbled or become overly frustrated at any point.

I think I need to do the programmable robot thing a little more often, if only because a loving, attentive mother is nothing less than my children deserve. Does ‘programming’ myself make it less real?

Nope, at the end of the day, getting attention is attention and love is love and that’s what they need from me. Of course, they also need rules and limits and to sometimes be reminded, kindly, that even Mom has her limits and that’s okay too.

Thursday, October 6, 2016

BGSU Middle School Honors Band

I got an email earlier this week congratulating me on the fact that my child had been accepted into the Bowling Green State University Middle School Honors Band.

As I read the welcoming letter, I vaguely remembered Alyssa bringing home some paperwork that she filled out and I signed requesting that her teacher write a letter of recommendation for Alyssa to apply to this very thing.

And look at her now, fully accepted.

There were more forms for me to fill out as well as a link to the site at which I could make the $65 registration payment.

I decided to go home and check with Alyssa to be sure she still wanted to do this honors band thing before forking over a non-refundable $65 dollars. I mean, if she had decided not to do it, that’s not a little (at least to me) amount of money to be leave my account for nothing.

When I got home Alyssa was so excited to share the news with me that she’d been accepted into the one-day intensive program. She told me that her band director had emphasized to those who were accepted that their parents were NOT supposed to pay the $65 registration fee, that the school’s music boosters program was going to pay for everyone.

Well, that was nice to hear.

But the best part was how much Alyssa is looking forward to this. She takes her music very seriously and is very excited.

I’m excited for her because I know it’s something she’ll take seriously and that she’d enjoy and remember fondly for years to come.

Obviously I’m very proud of her and want to continue to support her in things like this as long as it makes her happy. I love that she's willing to work so hard at this sort of thing. She admitted that she's a little bit afraid of this opportunity because it starts at 8am with rehearsals that will go throughout the whole day and end with a concert performance that evening but she's going for it because she realizes that some things are worth working very hard at in order to do them well.

She's a pretty darned awesome kid even if I do say so myself.

Wednesday, October 5, 2016

Putting the 'Pal' in Principal

Okay, bad pun but the sentiment is there.

I had a meeting with the principal of Olivia’s school today. Her teacher was supposed to be there too but had a last minute appointment and couldn’t make it.

I feel like we got so lucky when we moved to this school district. This principal has been at our school for about three years. She’s on the young side (probably early forties) for a principal and she’s just so lovely.

She cares about the kids and seems to have taken a personal interest in Olivia and her education.

The first thing she said to me when I arrived was, “I want to make sure Olivia gets the most normal education possible. That’s why it’s so important to me that she remain in the typical classroom. I want to pave the way for her to keep learning as much as possible. She’s going to be surrounded by typical people her entire life, this is the time when we can teach her how to deal with those people to the best of her ability.”

This meeting was mostly to talk about state-administered reading fluency tests that are coming up later this month. Olivia will be taking this test but if she doesn’t pass (she doesn’t test well even though she reads VERY well) she will not be held back from moving on to the fourth grade next year.

Mrs. M went on to tell me how well she feels O is doing this year. She said she tries to spend about fifteen minutes a day with Olivia and her goal is to have Olivia speak an entire sentence to her before she leaves the elementary side of this school in sixth grade.

“Olivia is such a mystery,” Mrs. M said. “Her syndrome is so rare that I will probably never get to meet another person with it.”

I nodded and said that most doctors will go their entire careers without having a patient with 5p- syndrome. I told her how lucky I feel that we have the medical providers we do have and how much I appreciate all that her doctors and her teachers/therapists/Mrs. M do for Olivia.

“She’s so sweet,” Mrs. M said. “But she can also be so stubborn. I’ve never met anyone quite like Olivia.”

I appreciate an educator who admits that sometimes she doesn’t really know how to help my child but who isn’t giving up on doing just that. She said that sometimes Olivia defies the assistance put in place to help her. Sometimes, the very thing that is supposed to make school easier for her makes her dig in and refuse to even try.

I agreed and said that all we can do is keep looking for ways to help Olivia help herself.

“Her biggest fear,” I told Mrs. M, “is being viewed as different. She KNOWS she’s different but she doesn’t want it pointed out or made any more obvious than it already is.”

I mentioned how awesome Mrs. H is at helping Olivia not feel singled out.

Mrs. M gave me some ideas to work on at home to help Olivia develop her already really good reading habits. We’re going to institute a reading journal, in which I will encourage Olivia to write about the characters we’re reading that day. I can ask her questions and ask her to write the answers.

Reading isn’t a problem for Olivia but writing…well, that’s more challenging. Thankfully the test she’ll have to take will be done at the computer not written out by hand but there is still the struggle O has with attention. She’ll have an aide by her side to keep her on track and keep her from erasing all her hard work the first time she gets distracted or bored.

As always, we are so lucky to be where we are, working with this team to help Olivia be the very best she can be. We’re on track for an excellent year and with all the help in place and Olivia doing her very best, well, we’re all looking forward to third grade being the best one yet for our little mystery.

Tuesday, October 4, 2016

Lucky Thirteen

Thirteen years ago today, I walked down the aisle of the church I went to Bible School in as a child and said, “I will.”

That simple two line sentence was in response to the question of whether I would take Tom to be my husband.

He said the same thing when asked if he’d take me to be his wife.

And here we are.

Has it always been awesome? Well, no, of course not.

But it’s mostly been worth it. And that’s saying something.

This morning I was hugging Alyssa goodbye and Olivia joined in. She wanted it to be a group hug. Then Tom joined and we were all bound together, kind of the physical manifestation of how I envision our family. It was cool.

I feel lucky that I can look back on the past thirteen years and see more good, more fun, more laughter than bad, hard tears.

I still swear by the advice I give to new moms. Don’t make decision about your relationship/marriage during the first year of your baby’s life. It doesn’t matter if you’ve just had your first baby or your fourth baby that first year is going to suck and you’ll probably hate your partner more often than you love him/her. But if you stick it out, it usually gets better. It can get so much better.

These days we make a pretty good team. He packs Olivia’s lunch, I wipe her butt help her with homework. He makes them breakfast, I do their hair (when Alyssa lets me help her with hers, which is rarely, but Olivia makes up for it by letting me do her hair every single day.)

I won’t say that every day is perfect because, duh, that would be a lie. But most days are good and I’m grateful to be able to say that now, thirteen years after we kissed that perfect kiss in front of our friends and family.

Monday, October 3, 2016

Staring Down October

I realized this weekend that October is booked. We’re not that family that has something going on every single weekend. We don’t have activities each evening throughout the week either.

We’re all homebodies and are happiest when we have nowhere to be and no one expecting us.

But somehow October weekends became booked when I wasn’t looking.

This past weekend, Alyssa had an All-County band concert. She was amazing and loved the whole process. She gets such a kick out of making music and performing. She very much enjoys it when her teacher points her out as a perfectionist who practices hard to do as well as she does.

So yeah, our usual Sunday of baking and cleaning and doing laundry was interrupted by a concert a half hour away. But it was worth it.

Next weekend we have plans to hit up the local corn maze and pumpkin patch. Because you HAVE to do that kind of thing in October. This will be our fourth year of visiting this maze and it’s always great fun, especially since I no longer have to carry Olivia even part of the way. Yay for strong legs.

The weekend after that I’m heading off to DC for a weekend with some of the most amazing, strong, smart woman I’ve ever been blessed to know. The only bad part? I have to leave my house at 3am that Friday morning so I can drive to Detroit and board a plane at 7am. Yeah, that kind of sucks but, well, worth it once again, right? Right.

Then we have the Purdue dance marathon the weekend after that. We head to West Lafayette on Saturday afternoon, come home Sunday late morning and then we’re supposed to drive up to Battle Creek, Michigan for my grandma’s 91st birthday party. That’s a lot of driving. Just saying…

And the weekend after THAT is Halloween. Right now it’s only October 3rd and yet it feels like this month is already flying by.

Yikes, talk about busyness.

Friday, September 30, 2016


Okay, so I’ve been watching that new show on NBC This is Us. I really like it.

In the second episode, a mother of three asks her husband how he thinks they’re doing as parents. She gives them a six, then ups it to a seven and admits that she believes she’s actually a nine but he’s bringing their score down with his drinking and late nights. She does tell him that when he’s there, when he’s sober, he’s actually a better parent than she is.

But this isn’t about the show. It’s about my score as a parent.

These days, I’d give myself a solid seven. I think I’m doing okay; not great, but okay. My girls know they are loved. They are clothed and fed (separate dinners each night because…well, I guess it ups my score.)

They seem to be getting enough sleep and they’re doing pretty well in school. Alyssa has a lot of friends and has her interest in which I take a decent amount of interest as well, because I know that’s important to her.

Olivia has a vivid imagination and I listen (mostly) attentively when she tells me her imaginings, her stories, her dreams.

I hug them both as often as they want and they get a lot of physical affection from me, which ranges from hugs, to holding hands (while watching TV) to back scratches and gentle touches to soothe a tired nine year old to sleep.

But I could be better. I could yell less. I could scold less. I could set more limits and enforce them better.

I realized last night that one thing that would make me a better parent is if I set a bedtime and then just took the girls to bed at that time so I could have even a half hour to myself.

See, our routine right now is at 8pm, we sit on the couch together, me between A and O. I read to Olivia while Alyssa watched Pentatonix videos on her tablet. We finish reading at 8:15, at which time I take Olivia’s glasses and put them away. Then I settle back on the couch and rub/scratch Olivia’s back until she falls asleep with her head in my lap. This can take anywhere from fifteen minutes to forty-five minutes. Which is frustrating for me because, dude, JUST GO TO SLEEP.

And so because sometimes I’ve scratched/rubbed her back for up to forty-five minutes, many of those minutes with her twisting and turning and rolling and fidgeting with her blanket or her nightgown, I’ve had it when those forty-five minutes are up. And then I yell or I tell her sternly to settle down and go to sleep. Our peaceful time if over and I’ve turned into grumpy mom.

If I were to institute a bedtime for her of 8:30, we could still read and rub/scratch back for a bit but then when 8:30 rolled around we could calmly head up the stairs, I could kiss her good night, hug her and then tuck her into bed. Grumpy mom would never have to make an appearance. My score would move from a seven up into the eight range just like that.

Alyssa, on the other hand, could stay up until 9:30, doing her thing, sitting next to me watching either television with me or watching videos on her tablet but at 9:30, I could just send her to bed. There would be no hissing at her to turn her tablet down because I can’t take the noise of Tom’s TV from the family room, my TV and her tablet all being noisy at me. Again, if I knew there was an end time to her tablet time, to her sitting next to me and showing me every single comment on every single video, I could take a more sincere interest in the things she shows me and grouchy mom would stay away.

These are definitely things I need to consider implementing. It would be good for all of us. And grouchy mom could possibly pack her bags, never to return. If that happened, I could see myself hitting a score of nine in no time.