Monday, August 31, 2015

Why I Get Nothing Done on Weeknights

So I had an epiphany last Friday as I was sitting around talking to a mom-friend of mine.

We were talking about how busy our weekends are with laundry and cleaning and cooking and shopping. Oh and, you know, the occasional parenting.

I said something about how I never get anything done during the week because I only have a total of four hours with the girls each night (that is IF they both stay awake until 9pm) and I don’t want to spend that time doing laundry or cleaning out closets.

I now have a solid reason, beyond incredible laziness, for not doing more around my house during the week.

Heck, I already feel like I spend too much time each evening cooking dinner and cleaning up after dinner. And honestly, those are things I can’t not do, because, well, we all need to eat every single day and after we eat, there are always dishes to be cleaned so we can go on to eat another day and on and on and on. Sigh.

But yeah, the reason my house is a disaster from Monday morning until Saturday afternoon is because I’m parenting. I’m being present with my children each evening, spending real, valuable time with them that involves sitting and watching television and laughing and snuggling, and yes reading aloud to each other. It does not include vacuuming the carpets or folding laundry.

There you have it. My Mother of the Year trophy can be engraved now, thank you very much.

Friday, August 28, 2015

On My Boring Mind

I woke up with a headache yesterday. That just sucked.

About a week ago, I decided to try this weird brace thing on my left foot because my stupid bunion hurts like crazy these days. Did it help with the pain? Not really. But it did make my second (index?) toe go numb. It’s been numb for a week. I wonder if I should be worried about this numbness. I haven’t worn the brace thing since I realized the second toe was numb but the numbness hasn’t actually gone away.

Olivia joined me in my bed this morning around 2am. This is the first time she’s done this in months. I didn’t enjoy this experience even a little. I get plenty of snuggle time with this girl during our waking hours. When we’re both sleeping she’s just all elbows and knees and feet. It’s not restful and this morning, after I woke up I found that someone’s pull-up had leaked through. I’m not naming names but there were only two of us in that bed, and I wasn’t the one wearing a pull-up.

So guess who gets to change the sheets on her bed this evening?

Guess who is also going to be a bit more strict with the boundaries surrounding her bed?

Yeah. So. There you have it. My stupid head sometimes hurts after a decent night’s sleep, I have the feet of an eighty old and my bony eight year old still sometimes sneaks into my bed when I’m too tired to fight her off.

Thursday, August 27, 2015

She Wants to Know

Everything. That’s what she wants to know. She, of course, being Olivia. She wants to know how everything is made and how it works and why it works and what it means.

I love this boundless need for knowledge but yes, sometimes it makes me very tired.

We’ll be sitting at the dinner table, eating peacefully (unless Alyssa’s reading aloud from one of her many, MANY ‘dinner’ books and then…um, it’s not so peaceful) and Olivia will want to know how I made whatever she’s eating.

When she’s old enough (mature enough?) to start cooking, this girl will have all kinds of recipes in her head, what with all the things I’ve told her how to cook.

She’ll be playing with a toy and ask how it was made. Tom often answer this with, “Well, you take a mold...”

And she always interrupted him with, “Dad! They’d don’t take a mold.”

Sometimes I have to be on Team Dad and gently say, “Actually, Liv, that toy really was made with a mold.”

Her incredulous look of wonder is always a delight in those moments.

Most recently she’s been wondering about gravity. How does it work? Why does it work? Is it always working? When she jumps is she defying gravity? When she holds her hand up above her head is gravity no longer working on her hand? Does gravity work when we’re swimming? How about when we’re sleeping? What makes gravity?

She wants to know everything there is to know about everything.

I love this but will admit that it gets tedious. I try so hard to listen to her stories and her questions and to answer her the best way I can in a way that she’ll understand. I haven’t yet said, “Gravity works because it works and that’s why it works.”

But I’m tempted. Sorely tempted.

Instead, I answer her questions. I listen to her stories. I pay as much attention as I can as I go back and forth between both girls as they talk and ask and tell and question and demand all evening long.

And Tom wonders why I often take solace in zombies.

Wednesday, August 26, 2015

Bed Time

School started a week ago. In that time, we’ve been trying to figure out our new bed time and routine.

It’s a little hard when the kids are almost four years apart. Olivia obviously needs to go to bed earlier than Alyssa and yet when we all go to bed at 8:45 (which we did last night) Alyssa is sound asleep by 9 and she sleeps until I wake her up at 6:30, so I’m thinking she needs more sleep than she’d like to admit.

Liv, though, would actually go to sleep if I took her to bed at 8:00 each night. The problem is that she wants me to lay down in the same room with her. Well, she wants me to go to sleep at the same time and stay right there in the room with her all night but sometimes, I don’t stay there after she’s asleep. You know, because there is so much zombie TV to watch and so little time.

All kidding about zombies aside, the 8pm bedtime doesn’t happen because I don’t get home from work until 5:00, we have dinner at 6:00. Olivia is usually in the bath at 6:45, having her evening snack at 7:30 and we have to read and then brush teeth between 7:45 and 8:15. All that depends on a perfect night, a night where there are no unexpected visitors, or phone calls, or homework help needed. If we can just go and go and go from the minute I get home, we can get to bed at 8:30.

Alas, this causes a bit of whining from Lyss because when we got up to bed at 8:30, she doesn’t get her daily snuggle-with-mom time and that makes her cranky.

I know…I know. If, once upon a time, I’d taught these girlies how to go to sleep on their own…If I’d put them in their beds, tucked them in, kissed them good night and vacated the room, I could do that very thing with Olivia at 8:15 and then go down and spend the next forty-five minutes giving Alyssa her very much needed snuggle time. Then, I could send that child to bed at 9:00 and then, maybe, have an hour of zombie time all to myself.

In my dreams. For now, we’re making do with an 8:45 bedtime for all.

On the bright side, I’m getting way more sleep these days, what with going to bed at 9:00 each night…since, you know, even if I plan to get up after the girls go to sleep, I always fall asleep right along with them. Huh…guess that means I need more sleep too.

Tuesday, August 25, 2015

Using Her Words

During her evening serving of Jello (this week’s flavor: strawberry lemonade) Olivia informed me that the recess teacher had told the second graders that if they wanted, they could bring a toy to play with at recess.

Alyssa was quick to interject, “I don’t think you should take anything, Livie. Kids always seem to lose or break their toys during recess.”

Liv looked to me for confirmation of this new information.

I shrugged, “If you want to take something, you can. Just take something that isn’t all that important to you.”

She returned my shrug and took a bite of her Jello.

After she swallowed she told me, “The recess teacher told us to play in the mulch or on the cement. She doesn’t want us to play in the dirt.”

“Do you play in the dirt?” I asked her, motioning her to continue eating so we could get done with the snack and brush her teeth.

She obliged my urge to eat and then continued our conversation, “No, I never play in the dirt. Sometimes I swing but other times I just sit and wait for recess to be over.”

Sigh. My poor baby. I think she wants to play with the other kids but just doesn’t know how.

I distracted her by asking, “Why does the recess teacher want you guys to stay out of the dirt?”

Liv showed me her hands, pointing to her fingernails. “Because when we play in the dirt, we get the dirt under our fingernails and it takes forever in the restrooms after recess to get our hands clean.”

For some reason, that made her giggle like crazy.

I laughed along with her because, well, her giggle is contagious. “Well,” I said when I caught my breath, “I guess you should be using your time at school to be learning instead of having to wash dirt out from under your fingernails.”

She nodded wisely and ate the last of her Jello.

I asked her every day if she talked to her ‘friends’ that day. She usually either shrugs or says that she didn’t. I try to walk that fine line of giving her time to mature and encouraging her to keep trying.

I mean, look how far she’s come in four years. Her first year of school she didn’t even talk to her teacher, so the fact that she does talk to her teachers and aides, is a big step, but she’s in second grade. Friendships are forming, these kids are getting social. Some kids are even having sleepovers. Not that Olivia, even if she were invited, would want to go to a sleepover at this stage in her life but just talking to a classmate in the hall would be so awesome for her.

I am so lucky she uses her words with me. I am so incredibly blessed that she talks to me every single day, that she tells me stories, makes up dreams each morning to tell me. How do I know she makes them up? Because she waits until Alyssa has told us what she dreamed about the night before and then Liv will brighten up and declare that she ALSO dreamed that exact same thing. She always embellishes, which is awesome and I’m so glad her imagination allows her to make up dreams but yeah, they’re made up. I kind of love her that much more because of it.

I feel really lucky that she does actually speak to her teachers, that she’s comfortable enough with most of the adults at school that she’ll talk to them, interact with them, tell them about her home life almost as much as she tells me about her school life.

But I wat more for her; I want her to have what almost every other kids has. I want her to have friends. I want school to be about more than the academic work. I want it to be fun, I want her to be social and tell me about her friends.

I know I’m probably being selfish, I mean, this child TALKS and she WALKS and she’s RUNS and she READS and she converses with me. She can tell me where it hurts when she’s sick, she can tell me when she’s sad or when she’s mad. She can inform her dad in no uncertain terms when she’s done eating and let him know that nothing he says will change the fact that she is not going to another bite of what he’s offering.

But selfish or not, I want more. I want it not for me. I had my childhood and my friends and my social life. I want it for my daughter. I want her peers, her classmates, to get to know her, to see how funny, how sweet, how imaginative she is. I want her to have someone her own age to listen to her stories and share her dreams, made up or not.

Okay, I’m owning it. I want it all for Olivia. I want as much for her as I want for Alyssa. I’m their mother, it’s my job, my calling to want more for them and to help them find ways to get it.

Monday, August 24, 2015


Several of my awesome friends out there in the world homeschool their kids.

I think this is awesome. I think it’s a great choice and I’m so glad it’s an option for those who want to and choose to do it.

It is not really an option for us.

First of all, I work fulltime, so I wouldn’t be able to actually be AT HOME to school my children. I don’t think Tom wants to take on that kind of responsibility and I’m not sure either of my kids are self-motivated enough to do it online on their own. Okay, so maybe….a big maybe, Alyssa could do it, but Olivia? Yeah, not so much.

The real reason homeschooling is not an option for Alyssa is that she needs to social time she gets at school. She’s introverted by nature and if she hadn’t been plunged into a public school setting at the ripe old age of five years old I could see her becoming quite the hermit.

And she loves school these days for the very same reason…the social aspect. She gets to spend time with her friends and then come home and decompress with some time in her corner, away from everyone, including pesky little sisters.

The other day, my mom mentioned that another of our friends had decided to homeschool her kids. They were planning to use an on-line guide/site to do this. Mom went on to mention that at some point, we might have to consider homeschooling Olivia. I nodded but then said it would be hard, you know what with me working and all. My mom said she’d be willing to help if it came to that.

Olivia overheard this and later asked, “What is homeschool?”

I told her it was when kids stayed home with their mom or their dad and did school work at home.

Her eyes lit up. I believe she thought she hit the jackpot. Stay home! Work on school work at home?! Why had no one ever told her this was an option?

Well, right now, it’s not really an option, which is why she hadn’t been told it was an option. Poor kid’s face dropped when I told her she was going to second grade AT school.

And honestly, three days in, she’s fine. She’s actually eating her lunch at school. Sure, she’s sitting a good five tables away from her rambunctious classmates, but she’s in the cafeteria (okay, they call it the auditoria at their school but I’m sorry, that’s kind of a stupid word.)

One of Olivia’s biggest challenges at school is the social game. She can’t/won’t speak to her peers. One on one, she’s doing so, so much better but at school, she just gets overwhelmed. But see, my biggest fear is that if we pull her out of that environment, she’ll become that much more shy, she’ll be that much less likely to speak to her peers in any setting.

So we’re working on it and so is the school and right now, at this time, it’s the best place for her to be. We’ll keep an eye on it and re-evaluate as necessary but as long as she’s learning and growing and maturing in this setting, we’ll keep on keeping on. If things change, if she stops learning or things get overwhelming for her, we’ll figure something else out. We’ll look into every option, up to and including homeschooling to be sure we’re giving Miss Liv the best chance of succeeding at this thing called life.

Thursday, August 20, 2015

Nanny McFee 2

Last summer one of Olivia’s front teeth became loose to the point that it was sticking out almost horizontally from her gums. It was funny and awkward and we were all so relieved when that thing finally fell out that we didn’t even get mad that it was Alyssa’s hand that ended up knocking that tooth out.

Recently I noticed that another of Olivia’s teeth was loose. It was the one just to the right of her front teeth. When I looked closely, I could actually see the permanent tooth pushing its way in behind the baby tooth.

That permanent tooth was actually moving the baby tooth almost daily. It was being moved both forward and to the right. It was becoming unsightly, if you want the truth.

Finally, last Saturday, I’d had enough. She wouldn’t let me wiggle it, she refused to wiggle it herself and it needed to come out.

I offered, “Hey, Liv, if you get that tooth out today, I’ll let you pick out a toy at Walmart.”

Her face lit up. She knew JUST what she wanted.

Alyssa looked on with doubt. She was pretty sure even the lure of a new toy wasn’t going to be enough to get Olivia to yank that tooth out.

I was more confident in my youngest daughter’s fortitude. Girl likes her toys, is what I’m saying.

She started wiggling only to stop a few seconds in and grimace. She asked for an apple, hoping it would help get that darned tooth out.

It didn’t.

I offered to help. She hid her face.

She wiggled while I showered. I reminded her from behind the shower door that if that tooth didn’t come out before we left for town, there would be no new toy.

She muttered something I couldn’t quite hear over the sound of running water and went about her business of wiggling her tooth.

Once I was out of the shower, she asked me if her tooth was bleeding.

It wasn’t. But while I was inspecting it, I decided to do her a little favor and give it a little wiggle.

I wiggled it the way she’d been wiggling it and…nothing. I then grasped that damned Nanny McFee tooth and twisted it in the opposite direction and bam, it’s tenuous hold on her skin gave and it dropped onto her tongue.

She spat it out as fast as it fell from its former home.

I picked it up off the bathroom counter and showed it to her. She inspected the gross thing and then looked in the mirror.

“I’m bleeding,” she announced and promptly found a cup, filled it with water and rinsed her mouth.

“You’re not bleeding much,” I told her. “And better still, that tooth is out!! You get your toy!”

We high-fived and went to tell Alyssa the good news.

She was impressed that Olivia had ‘let’ me yank it out. When I confessed that I sort of tricked O into letting me ‘help’ Lyss laughed and admitted that Liv did, in fact, deserve a toy for that one.

When we got to Meijer that afternoon, Olivia decided to see if the toy she wanted was in stock. We headed to the doll section and she found it immediately. She picked up that Baby Elsa doll so fast I thought she might knock another tooth out with it.

Was it worth the $14.99 we paid for the doll to get that tooth out?

Yes. Yes it was.

The tooth fairy even left a token dollar for Olivia. And a note, telling her how brave she was for ‘letting’ her mom get that tooth out of her.

Now if only Alyssa would let me go to work on her remaining eight baby teeth. I’m telling you, I could save us hundreds of dollars if she’d just open wide.

Here's Olivia pointing to the new tooth that was already growing in before we even got the baby tooth out.

Wednesday, August 19, 2015

Gotta Go Back, Back, Back to School

It’s that time of year again. We attended the open house last night at the girls’ school. I love open house because it lets us take the $90 (EACH) worth of school supplies to each girl’s classroom so they don’t have to carry them on the bus on the first day of school. Back in my day (you know, a hundred years ago, before there was electricity and television and cars) we had to take all our school supplies on the first day and that was nightmare on the bus.

As she embarks on second grade, Olivia is a little iffy about whether or not she’s actually excited about school. Alyssa had the same teacher for second grade and she’s (the teach, that is) wonderful so I have high hopes for O’s continuing education. Olivia, on the other hand, asked the other day, “What is homeschool?”

Ha! That’s a post for another day, kiddo.

But Mrs. P was excited to see all the kids last night and was so enthusiastic and energetic that I can’t help but think this is going to be a great year for Olivia.

Alyssa is SO ready for school to be back in session. She’s had fun this summer but I know she’s missed her friends and she can’t wait to have a full eight hours away from me and Tom and Olivia. I know, that should probably make me sad but really it just makes me proud of her. She’s grown so much in the past few years in all ways. I mean, obviously, she’s grown physically but she’s also grown socially and emotionally. She’s going to have an awesome year just because she’s decided to make it so. She amazes me every single day just because she’s so awesome. I love how much she loves her family even as she’s branching out, making friends, feeling her way toward independence.

Sure, I’m not looking forward to packing lunches every single night for the next nine-ish months but…it’s a small price to pay to have my girls getting a quality education surrounded by people who genuinely like them.

And get this…the bus route changed this year. The girls’ pick up time, which was 6:50am last year, is now 7:29. Nice!!! So much better. We all get to sleep for an extra half hour. That makes everything better in my world.

Last night at 8:30 Olivia asked me if we could go to bed rather than sit on the couch together. I declared that to be an excellent idea and we all headed to bed. I don’t know about A and O but I was zonked out by 9:00. We all slept until 6 with nary a peep. Now that’s a good night’s sleep. I’m glad they got that kind of sleep before the first day even though on the first day, they don’t usually do much other than get settled.

I do hope Olivia decided that second grade will be THE year of eating her lunch with her peers but we’ll see. And if she doesn’t? There’s always third grade.

Tuesday, August 18, 2015


Last Friday the girls were with my mom. She decided to bring them to town right before I got off work, so I met them all at Menards. My nephew was with them and so O and J were being little maniacs throughout the store. If you happened to be in the Angola, IN, Menards last Friday…I’m sorry for the crazy girl and boy who were running around.

Olivia was wearing a new shirt that Gram has given her. It had the minions on it and said something like, “Normal is boring.”

Later that evening, she sat beside me after we’d read our three books for the night and asked, “I’m not normal, am I?”


Oh Livie.

Let me assure you that she didn’t say this with any sadness in her voice. It was more a tone of resignation, which was still so hard to hear.

I hugged her tightly and told her, “You are amazing. You are so smart and sweet and you are funny. So many people love you and are so happy to know you. No one is normal, you know. Everyone is a little weird or different and that’s what makes everyone special.”

I don’t have the answers. I don’t know what to tell her to make her feel better, to make her see how wonderful I think she is. She sees the kids at school running around, playing with each other, talking to each other, being ‘normal’ and she knows that’s not how she is.

How do you explain it all to a child who is just special-needs enough to know she has special needs?

She knows she different and most of the time, she’s fine with that but she’s getting older and noticing more and taking more in and seeing the differences magnified by the microscope of the public school setting. She wants to fit in just because she knows she’s supposed to want to. But it’s hard. It’s so hard and I know this is not the last time she’ll ask a question like that.

What is normal?

Someday, when she’s all grown up and doing amazing things, she’ll realize that normal is overrated and be grateful for how special she is. I mean, look at Ellen. She’s not normal and she’s brilliant at what she does.

But when you’re eight years old and heading into second grade, normal would be awesome. Normal would let you fit right in with the masses, it lets you disappear a little and be part of the organism that is second graders at recess.

When you’re not normal, you play at recess by yourself. You stand and look at your peers when they speak to you, unable to reply back to them. It makes you stand out and at eight, most of us don’t want to stand out.

Someday, my sweet Livie, you’ll embrace your specialness. You’ll see how great you are, how much you’ve overcome and how strong you are because of it.

Until then, I’ll be here, trying to be a buffer between you and what can be a very cruel world. I’ll be here for you to land on when things get hard, when ‘normal’ feels eons away, when life gets lonely and you need to know you’re appreciated because of your specialness, not despite it. I’ll be here to celebrate your unique sense of humor, your beauty, your charm. I’ll be here to listen to your stories, marveling in your imagination, your sense of adventure.

I’ll be here to wipe your tears and remind you that normal is overrated even as you strive to achieve just that.

I will always be your biggest cheerleader, your loudest fan. I will always be a place where you can rest your head when you’re tired and where you know your accomplishments will be celebrated.

Because, like your shirt said, normal is boring and you, my sweet girl, have never, ever been boring.

Friday, August 14, 2015


The entire family woke up tired today.

Tom was so bewildered. See, he usually wakes up refreshed and ready to start his day. He usually wakes up between 4:30 and 5:00...ready…to…start…the…day.

Take a minute and let that sink in. He rarely wakes up tired.

When he told me this morning, with a bit of confusion in his voice, that he woke up tired this morning, I just looked at him. Because, hello, I thought everyone woke up tired every day.

I mean, I’ve been waking up tired for over twelve years at this point.

What is this word ‘refreshed’ and what does it mean? I can’t even imagine just opening my eyes one morning and being ready to get up and start the day. I have a feeling I will always, ALWAYS open my eyes, check the clock, do a quick mental tally and decide if I have time for a ten minute snooze.

I know people are probably wonder why I don’t go to be earlier so that I get more rest in the night. I don’t want to. After the girls are asleep, I get maybe an hour of time alone. I need that time alone. I need to recharge emotionally even if I’m not recharging physically so that I can be kind and loving to my family.

After Tom left the room, Olivia looked up from the drawer she was rummaging through and asked, “Why am I so tired this morning?”

I managed, barely, to not roll my eyes at her and said, “Well, maybe if you weren’t up half the night whimpering in your sleep, you wouldn’t be tired this morning.”

She gave me a look of wide-eyed innocence. “I did that?” she asked.

Yep, she did that. And because she was only half asleep all night, it meant I was none-asleep.

So yeah, we’re ALL freaking tired this morning. I wanted to welcome the rest of my family to my world. But I didn’t because I’m afraid that if I make it too welcoming, they’ll stay and we’ll all spend the rest of our lives cranky and tired and that’s not appealing at all.

Thursday, August 13, 2015

Too Much Togetherness

Can I tell you how glad I am that school starts next Wednesday? The girls need a break from each other. They’ve spent the entire summer together, except for the few times Lyss has gone to spend time with a friend.

I think A and O are sick of each other.

I know I’m sick of their near-constant bickering.

The worst is when we’re all in the car. They’ll be in the backseat. One will say something, the other will either mishear and then ‘correct’ her sister, at which point, the original speaker will defend herself and it will degenerate into a yelling, hissing, whining mess that I have to yell over just to get it to stop.

Do you know how frustrating it is to yell, “Stop yelling!” It feels so stupid.


Yes, in our world, school can’t start soon enough.

Bring on the pencils, bring on the books, maybe the girls will stop giving each other dirty looks.

Wednesday, August 12, 2015

So Many Appointments

With the start of school looming (next Wednesday!!!) we’ve had so many appointments for the girls.

So many…

The girls had their teeth cleaned about two weeks ago and at that appointment, we started Alyssa journey toward perfect, straight, white American teeth. Yes. I know. Americans tend to be obsessed with orthodontic care. I’m one of them, sue me. I had braces at the ripe old age of 27 because until that point, I hated (HATED!) my teeth and my smile and while I’m not exactly happy about my current orthodontic state, it’s so much better than where I started that, eh, I can’t really complain. Get this, at forty-four, which is fifteen years after I got my braces off, my retainer still fits in my mouth and yes, I do still wear it. Probably not as often as I should but I do still wear it.


As I was saying, Olivia saw the doctors at Urgent Care twice last week and a hematologist at the hospital once. Alyssa saw the orthodontist once last week.

Tomorrow, Alyssa gets to see the orthodontist at 8:40 for a forty minute appointment. I don’t even know what’s going to be happening then other than we’ll be getting a referral to the oral surgeon who will rip out her remaining eight baby teeth. Yes, I have been encouraging her to wiggle those teeth and maybe save me a couple of bucks but she’s refused to let me get my pliers and have at it myself.

After her orthodontist appointment, we get to come back to my work for a couple of hours before heading off to our family doctor where Alyssa will have her sports physical so she can run track this year with her friend Big. She’s all about doing things with friends. In fact, her other friend, Man, got her braces on like yesterday and Lyss is quite excited to be embarking on this adventure at the same time a friend is doing so. Man has told Lyss that the braces are quite painful. This is scaring Lyss just a bit.

Next Monday morning Liv has an appointment with the pediatric dentist. Sadly, this is just the exam during which they’ll decide what work needs to be done, tell me how much it will cost and THEN we’ll schedule the appointment to actually get the work done. Sigh. It will probably necessitate her missing a couple of hours of school. This makes my head hurt.

So many appointments and only so many sick/personal hours left to use.

I honestly don’t know how parents of more than two kids manage it. My hat is off to all of you out there who are outnumbered by your children. You’re so much better at this whole adult-ing thing than I am.

Tuesday, August 11, 2015

Aggressively Affectionate

As mentioned, Alyssa went to most of the seminars/break out groups that my mom and I attended at the 5p- Society Conference.

I figured at twelve years old, she was able to sit quietly and listen to what was going on if she wanted to do so. She wasn’t interested in going to the sibling outings or to child care. She actually laughed when I suggested child care. As if!!

I want Alyssa to understand how far her sister has come and also understand the things Olivia faces every single day. Of course, I also want her to just see her little sister as that, a little sister, the one person in the world who know exactly how to push her buttons and irritate her more than anyone else in the world and yet somehow also be someone in this sometimes cruel world who will always love her unconditionally.

One afternoon when we got back from one such breakout group, Alyssa was quiet for a bit. My mom and I thought nothing of it as we all got ready to go to the pool.

Finally, Alyssa figured out what she wanted to say. “Olivia isn’t really aggressive, is she?”

Obviously, Alyssa had been processing the fact that several parents had voiced concerned about how aggressive their kids tend to be, with both the parents and with sibings.

“Not really,” I said, just as Olivia pressed her lips to my upper arm. She’s been doing that lately, kissing until I have to tell her, “Okay, be done.”

Alyssa laughed at her sister’s antics.

I rolled my eyes and said, “Well, sometimes she’s aggressively affectionate, though.”

And this is true. Olivia loves to give affection. But only to those she’s very close to, as in, she’s aggressively affection with me, Tom and Alyssa. Sometimes, she’ll be aggressively affection to my mom but it’s usually aimed at those of us with whom she lives.

Later still, Alyssa admitted that listening to those parents talk about how physical their kiddos could be, she realized how lucky we are that Olivia doesn’t hit or pinch or pull our hair.

If you’ve got to put up with aggression, Alyssa decided, it really is better to have that aggression manifest itself as affection, because even if the affection is annoying, at least it doesn’t hurt.

My sweet Alyssa…she’s getting it. She’s seeing all that her sister is, all that she can be, all that she means to all of us and she’s realizing that even with all the irritants that come with having a little sister, we’re pretty darned lucky to have O in our lives.

For the record, as much as Alyssa might roll her eyes and complain about Olivia’s annoying habits, when Olivia felt outside the hotel last week as we were walking to our car, Alyssa was the first one to scoop her little sister up and carry her, skinned knee and all, the rest of the way to the car. How’s that for a protective big sister? Pretty awesome, if you ask me.

Monday, August 10, 2015

So Much to Say about the 5p- Conference

Okay, so I wanted to post more about the conference we attended the week before last but Olivia got sick and everything was thrown into chaos and yes, here we are.

What was the girls’ favorite part of the convention? Swimming in the hotel pool.

We went to the Indianapolis Zoo and it was lovely but it was soooooo hot that day that all Olivia could do was complain. “Why are we here when we could be at the hotel swimming?” she wanted to know.

Since this was our first conference, Alyssa chose to stick with us. There were several sibling mixers/outings but at twelve, Alyssa is not one to go to something like that one her own. If we’d brought one of her friends? Maybe, but not alone. I get that. I was very similar when I was her age and look at me now.

Olivia wasn’t sure what to think of the other kids in attendance. There were a lot of huggers and Olivia is not much of a hugger. She’ll stand there and take a hug, but she isn’t likely to hug back. She is one of the few shy kids with 5p- syndrome. I realize that is a huge generalization but…well, considering most of the kids/adults we met at the conference, it panned out.

It helped a lot going into this conference knowing that 5p- is a spectrum disorder. There are so many levels of the spectrum. There is someone like James, the keynote speaker, a man who wasn’t diagnosed with 5p- until he was eleven years old. He’s 43 now and works, drives, runs marathons, volunteers at the Special Olympics. He’s awesome.

But you know what? The others in attendance were awesome too, all in their own way. There were the kids in strollers/wheelchairs who brightened the room when they entered because their smile was so bright. There were the kids who giggled when they met new people.

Not every person with 5p- syndrome is going to go on to be a James. And that’s okay because every single person at the conference is loved dearly and that’s what really matters.

Olivia is adored by her family. Taleigha is adored by her family. Helena is loved by her mom and dad and big brothers. Matthew’s family loves him more than words can say. Amy’s parents are so proud of her and it shows when they talk about her. Katie’s mom can’t say enough wonderful things about her daughter.

So many of us attended that conference not just to learn more about the syndrome that affects our kids, we also attended because we’re just so damned proud of our kids. We want to show them off in a setting where they’re (and we’re) not judged, where their accomplishments shine for what they are, amazing achievements reached through love, perseverance, strength of character.

No one thought anything of the fact that Olivia carried around a small (think Christmas tree ornament sized, since, uh, that's actually what the shoe was originally supposed to be) gold show around all weekend. She needs some kind of comfort item to carry around and it can't be a stuffed animal because, duh, those things are gross, at least as far as Olivia is concerned. One mom commented that O had her shoe and the mom's daughter had a small (smaller than a Barbie) doll clutched tightly in her hand. In fact, rather than think the shoe was weird, more than one other child very much wanted to abscond with Olivia's beloved shoe. Their parents were awesome as distracting the kids from the shoe while Olivia tucked it into my purse for temporary safe-keeping.

No one batted an eye that I sat at breakfast, lunch and dinner and fed my eight year old. They were happy to see that very same eight year old was able to tell me, with words, when she was done eating. They were thrilled that my eight year old could tell me, again with words, that she had to us the bathroom. Everyone celebrated every single milestone, every achievement, every step, every word and every sign like it was the achievement of the year. Because each one is. Our kids overcome so, so much just to be here, to breathe, to eat, to wake up every single day and we celebrate them because they leave us in awe.

One grandma said, “I believe in miracles.”

I replied, “I get to live with one every single day.”

She wiped away a tear in agreement.

Friday, August 7, 2015

Well, It's Not Mono

I got home yesterday afternoon expecting a on-the-mend Olivia to greet me at the door. Instead, found a very pale, obviously still-sick Olivia laying on the couch, lethargic and feverish.

She started antibiotics on Monday. Yesterday was Thursday.

I sat and held her for a bit, her head on my lap. I was rubbing her hair and neck when I felt swollen glands in her neck.

That decided it. We were going back to Urgent Care.

I bundled her up, drove the eighteen miles back into town and we were actually seen fairly quickly at Urgent Care. This was a different doctor than the one we saw on Monday.

He agreed that after having three days' worth of antibiotics in her system, she should absolutely be better than she was presenting.

He sent us to the hospital for blood work.

We got home at 7:30, she fell asleep by 8:15 and we had a very restless night with her up and down most of the night, achy, feverish and cranky because damn it, she should be feeling better.

We received a call from Urgent Care this morning that O's lab work was back. She does not have mono. Yay, right?

Right, except since it's not mono, we don't actually know what it is. Her white blood count is down but the nurse said that might be because she's on antibiotics and her body is also trying to fight whatever is going on in there.

The suggestion she gave us was to continue to antibiotics, keep pushing fluids and get her to eat what we can and if Sunday arrives and we don't see improvement either take her back to Urgent Care or make an appointment with our family doctor early next week.

Ugh! I just want her to be well. I want her to stop hurting and feel better. I want us all to sleep better and well, this all just sucks.

But yeah, it's not mono so...that's one possible diagnosis that's been crossed off the list.

Thursday, August 6, 2015

And She Slept

The last few nights have been rough on Olivia. Her fever seems to get worse in the night and this makes her miserable and well, we all know that misery loves company and in our house, this translates to a miserable Olivia loves a miserable Mom.

The night before last she woke up at 12:30 and cried out that she hurt all over. I went to her, touched her hot forehead and went to get her some medicine. I also brought her water with me and settled in next to her bed in hopes that she’d fall back to sleep, even if it was fitful, in just a few minutes.

Man, I’m stupid.

She tossed and turned and moaned and whined for over an hour. Some of the things she said/asked:

“Why do I hurt so much?”
“Where did I get these germs?”
“How did the germs get in my body?”
“Why does God even make germs?”
“Why can’t God just make me better?”
“When is the medicine going to work?”
“I think I’m going to cry.”
“Do I look like I’m going to cry?”

After an hour of murmuring reassuring answers to her questions, I gently suggested she try to sleep. She started to argue, in that sad (and yet SO annoying) sick voice, but I continued, “Sleep is another way, along with medicine, for you to feel better. When you’re sleeping, your body is fighting the germs.”

She looked suspicious (and sick) but agreed to try.

I kissed her warm cheek and went to my own bed, hoping desperately that she would sleep.

Fifteen minutes later, she called out, “Can I have the bunny?”


But…she’s sick. So I got up, found the bunny-shaped nightlight and handed it to her. I rubbed her back for a minute or so and then told her I was going to sleep in my bed and reminded her that sleep would help her feel better.

She played with that stupid bunny for over an hour, turning the light off and on, moaning every so often, and whimpering between the moans.

At 3:00, I finally gave in and asked her if she wanted to lay with me in my bed. I just couldn’t sit on the floor by her bed for another minute and if she was next to me, maybe the comfort of my sleeping body would help her. I don’t know; I was desperate.

But last night…ahhh, I’m hopeful we’ve turned a corner. She fell asleep around 8:30 and slept without a peep until 5:00. Can you even imagine? It was wonderful.

I’d given her Tylenol at 8 as a preemptive fever preventer. When she woke up at 5:00, she was warm but not burning hot. I got up and got her a dose of ibuprofen because, yeah, warm when she’s been as sick as she’s been, let’s not take chances. By 6:00, when I felt able to drag myself down to get the thermometer, her temp was 99.5, so yes, still low grade, but… ‘only’ low grade, right?

We’ll take our victories where we can.

The point is, she slept which means, of course, that I slept!! Hallelujah and amen.

Wednesday, August 5, 2015

So It Begins

It being orthodontic care, chapter Alyssa.

We had her consulting visit yesterday.

Much to my (but more so Tom’s) surprise, they actually started the process yesterday. She’s going to need quite a bit of work, due to a slightly crossed, deep bite. The doctor said he’s actually impressed that she doesn’t have more pain and that is due to the fact that she takes very good care of her teeth. Yes!!

The cost, though, is a bit of a shock to Tom. Why? I don’t know, maybe because he’s always surprised when things cost a lot of money? Tangent: Last year we took the girls to the Fort Wayne Zoo. This was Tom’s first visit to the zoo during which we had to pay in several years and the cost hit him hard. I think he often thinks we’re still living in 1955, when things were affordable and consistent with single income families. End tangent.

So even though I allowed the orthodontist to put separators on six of Alyssa’s teeth yesterday (she was in some pain last night, poor kid) he wants a second/third/fourth opinion on the cost.

Sigh. I’m worn out by the mere thought. Have I ever mentioned how much I hate using the phone? Especially for things like making appointments, asking for rough estimates for cost, etc. Ugh.

If we go with our current orthodontist (we’re going with our current orthodontist) Alyssa is looking at thirty (30!) months of orthodontic work. I know!! THIRTY months. We’re starting when she’s twelve and a half, and she probably won’t be done until she’s at least fifteen. I apologized to her for giving her my crappy teeth. And I wore my retainer last night in solidarity with her pain.

She still has eight baby teeth that need to come out like now. They’re impeding the growth of her permanent teeth, which yeah, not so good. The doctor said that he usually gives a time estimate of twenty-two months but for each baby tooth still hanging in there, he has to add a month. Yikes.

She has another appointment tomorrow at which they’ll add the spacers on her back teeth and at that point, we’ll talk about when she needs to have those baby teeth pulled.

I think we both just want to get this party started because the sooner it’s started, the sooner we can start the countdown to when it will be finished. And someday, like when she’s 27, Alyssa can thank me for the fact that she won’t have to pay for her own orthodontic work, like someone else we know.

Tuesday, August 4, 2015


It came on so fast. She was fine when we went to bed on Sunday night but when she joined me in my bed at 4am on Monday morning; Olivia was burning with a fever. Her hands, her feet, her skin was fiery hot.

I gave her some ibuprofen and water and we tried to sleep a little more.

When we got up at 6, I took her temperature. It registered 101.4. I settled her in the recliner with Tom, set the timer for three hours and told him to give her children’s Tylenol when the timer went off and then ibuprofen three hours after that in hopes of getting the fever down and keeping it down.

I went to work and worried all day long.

At 3:00, Tom called me and asked if I could meet them at the local Urgent Care at 4:00. He was brining Olivia in. Her fever had spiked to 103 at that point.

When I got to Urgent Care, Tom and the girls were already there. Olivia cried when she saw me, either in relief that I was there or just because she hurt. She told me she was weak and that she hurt all over.

I carried her into the office, noticed how flipping cold the room was and asked Alyssa to go to the car and get the blanket we keep out there. We settled onto a couple of armless chairs so that Olivia could lay with her head on my lap, the blanket covering her shivering body.

While we waited (and waited and waited) for our turn with the doctor, I noted that O’s breath was really bad. Like, sick bad.

It was finally our turn. I carried O back to the scale where she was weighed and then we found our way to the examination room. She was grateful to lay on the table available for exams. There was a pillow and her blanket kept her warmish in spite of her fever.

The nurse took her temp, her bp and her pulse. The doctor arrived and checked O’s ears, which were clear.

Olivia told he doctor that she hurt all over. The doctor had O put one knee and then the other to her (Olivia’s) forehead, explaining that kids with encephalitis can’t do that due to stiffness in the neck.

Then the doctor looked in Olivia’s throat. At that point, she put her pen down and said, “I don’t even need to do a swab. She’s got strep. Even if we swabbed her throat, it could come back negative and I’d still give you the same prescription for antibiotics and lots of fluids.”

We were told to keep her hydrated and watch her closely for the next few days, that if she doesn’t show marked improvement, we’re to take her back to either our regular doctor or to Urgent Care for further evaluation.

As of this morning, after two doses of Amoxicillin, she was already feeling better. The achiness seems to have abated and while she was feverish at 2am, after a dose of ibuprofen, as of 7am, the fever was being held back.

So we’re wait and watch and yes, we’ll baby her because Olivia is an easy child to baby. Even Alyssa babies her, though she wouldn’t be happy that I’m telling the entire world that.

Olivia asked a few times why she was so sick and how she got sick. I reminded her of the busy weekend we’d just had, all the new people we’d met and all the people who wanted to hug her. She managed to shrug off a lot of those hugs but there were a few kids there who were bigger and more determined to hug than Olivia was not to be hugged. Who knows where the bug came from? All we can do is fight it now that it’s here.

Monday, August 3, 2015

5p- Society Conference

My mom, the girls and I attended the 5p- Society Conference this past weekend in Indianapolis. It was lovely. There were over 80 families in attendance. It was amazing to see all the kids/adults affected by 5p- syndrome. The seminars/talks were great.

I think the best part (for me; we’ll get to the best part for the girls in another post) was the keynote speaker. James is 43 years old. He was diagnosed with 5p- syndrome when he was eleven years old. I know!! We thought Olivia was diagnosed late at 2 years and three months old. James has us beat big time.

James lives on his own, he works, he volunteers with Special Olympics. He runs marathons, he has his driver’s license. He inspires parents like me to keep pushing my child, to keep my dreams for her and her dreams alive as we both learn and grow through all this.

We attended a talk called Cri du Chat 101, which gave us the basics of the syndrome, talked genetics and debunked a few myths. Perhaps the best thing the speaker said was that our kids continue to develop skills even into adulthood. The speaker’s daughter is 23 years old. He said she has better verbal skills now than she did two years ago. She’s still learning, just as we all continue to learn.

I’ll be honest…I think if I’d attended this conference when Olivia was first diagnosed I would have cried…a lot. I would have been worried sick about the worst-case scenarios and maybe lost focus on what is possible when confronted with the fact that for a lot of individuals with this syndrome, life can be hard. Walking isn’t always going to happen, talking isn’t always going to happen, potty training doesn’t always happen.

But you know what does seem to happen at least most of the time? These kids, these adults are happy. They’re loved beyond measure and with therapies and medicines improving even as our kids improve, the prognosis gets better all the time.

Attending this year for the first time when Olivia is eight years old, I was able to look at my walking, talking, potty trained girl and know that life for her is only going to continue to get better. At least if I have anything to say about it.

I am honored to be a part of the 5p- family. I’m honored to be Olivia’s mother, one of many parents out there who will do absolutely anything to help her child reach her fullest potential and to love that child every step of the way.