What Does It Mean?

I am part of a pretty amazing community on Facebook for parents, siblings, teachers, grandparents, anyone who loves someone with 5p- syndrome.

I read the celebrations and pride in parents’ voices as their kids do things doctors told them their children would never do.

I read the prayer requests as children are hospitalized or having procedures done to help them live a better, more comfortable life.

I read it all and I watch my girl run and flip and dance and stomp around in plastic high heels, laughing as her sister tackles her to the ground.

This past weekend, I was reading one such post and Alyssa came up behind me. She read what I was reading and asked why I was reading about it.

I told her that the child I was reading about had the same syndrome that Olivia has.

Alyssa looked over at Olivia, who was reading quietly for once.

I could see the confusion on A’s face. I said, “You know she has 5p- syndrome, right?”

She nodded. I’d told her about O’s syndrome over the years, explaining it as simply as possible in the beginning, getting more specific as they both got older.

Alyssa finally said, “I know she has it what does it mean?”

What does it mean? That was a really good question. As far as Alyssa is concerned, Olivia is a little sister just like every other little sister out there. She pushes buttons, she irritates her big sister, she gets into her things and makes messes. She gets her big sister in trouble by crying out when they’re ‘playing.’

I told her, “For Olivia, it means she needs a little extra help when it comes to a few things. Remember that she didn’t walk right away the way Jaxon did? Remember that she didn’t talk as soon as he did?”

Alyssa nodded, taking it all in.

I continued, “It means she’s a little weaker, that’s because of low muscle tone, which means her muscles don’t have the strength yours do. She can make them stronger, though, by eating right and exercising. It means when she gets a cold it takes her a little longer to kick it than it takes your or me.”

Alyssa was listening intently, glancing over at her sister every so often and then back at the computer screen where a sick child’s picture caught her attention.

“But she’s not sickly, Mom,” Alyssa told me.

“We got lucky with Liv,” I replied. “You’re right, she’s not sickly. She’s remarkably healthy. She’s never needed a feeding tube or surgery of any kind. She does well with therapies and we have great teachers working with her. And…she has you. You’re the best teacher and therapist she’s ever going to have. She thinks you’re the best, most amazing person in the whole world. She wants to be just like you.”

Alyssa beamed. I’ve told her these things before but I don’t know if she’s ever really gotten it before.

For us, 5p- doesn’t really change anything. We think Olivia’s pretty great and we know how lucky we are that she’s so healthy. She’s strong, she’s incredibly smart and she’s getting sassier every single day.

What does it mean? It means we celebrate the milestones a little more, we grasp those miracles and hold them a little tighter. We watch her a little more carefully and beam with pride a little more brightly.

New Glasses

I picked up Olivia’s new glasses last Friday after work. I wondered how Olivia would do with her new glasses. I worried she’d constantly pull them off her face, put them down somewhere, try to flip with them on. You know, all the crap that can and does happen when kids wear glasses.

When I got home and pulled them out for her to try on, she was almost vibrating with excitement.

I let her put them on and asked her if they helped her see.

She stood there for a minute, looking around. She pulled the glasses down her nose so she could look over them. Then she slid them back up and gasped as she looked out the window at the tree in our front yard.

“Everything looks different,” she said in awe.

We asked if she meant different good or different bad. She shrugged and said, “Just different.”

But after a weekend of her wearing her glasses, I’m going to go with different good because I didn’t have to nag her even once to put her glasses back on. She wore them from the minute she woke up to the minute she laid down to go to sleep.

My dad came over that night and he was happy to see Olivia at her most animated. She ran around the room, danced, sang and talked almost non-stop. He didn’t realize how well she speaks because she’s usually so quiet when he’s there.

Tom is very worried about keeping the glasses on her face. He wants me to find some kind of strap to go behind her head to keep them on her.

My mom declared that to be a horrible idea because she thinks it will make Olivia look like a dork (that’s a quote from Gram.)

I decided to wait and see. The glasses have fallen off her face twice so far. Once while at Kohl’s because some clothes hit her in the face. The other time was when she was putting on a crown and had her head tipped forward to get her hair just right.

I know. What can I say, she’s a princess through and through. Example of her princess tendencies: Her glasses frames are purple. She insisted on wearing purple all weekend so that her clothes would match her glasses.

I hope she continues to like them, to be cooperative about wearing them and be as confident as she has been so far.

I’ve talked up how cute they are, how great it is that she can see and how much I love seeing her wearing them.

I wore glasses for about a thousand years (okay, so it was more like 26 years, WHATEVER!) and I hated them most of the time, except for the fact that they helped me see.

But I never had glasses that make me look this cute:

My Ugly Side

Lest people start thinking I’m some kind of wonder mom, let me tell you about last night.

Wait, last night was just the end of a string of nights just like it. This week has been miserable.

I brought a cold back with me from Phoenix. It was just a head cold that stuck with me for all of four, maybe five days and that was it. I sniffled, I sneezed, I coughed and fought a little congestion but it was never even anything bad enough to call in sick.

Last Sunday evening, Olivia started sniffling. Uh oh. Colds for her tend to last longer, go deeper and cause way more trouble than colds for the rest of us.

Colds make her miserable and she likes to share the misery, especially between the house of 11:30pm and 3:00am.

So last night I went to bed at 9:00, thinking I could get a good two hours of sleep before things got shifty. As in, before Olivia woke up and came to me, asking to use the bathroom.

She’s done this every night this week, starting at around 11:30pm. She’ll wake up, come to my bed (no longer the twin bed, thank you very much!) and tell me she needs to potty.

I’ll drag myself out of bed, take two steps to the bedroom door, open it, take two more steps to the bathroom where there is a lovely flower nightlight glowing. Olivia will be right behind me. She’ll use the toilet, I’ll help her out of her pajamas, because what is a middle of the night wakeup call if it doesn’t include discarding all articles of clothing that protect the sheets from your naked butt?

Then we’ll go back to bed, both of us to my bed, of course.

Then she’ll toss and turn for a bit, dig her toes into my calf or thigh for good measure and finally settle down. I’ll have about twenty minutes to fall into a decent sleep before she rolls toward me and whispers, “I need to potty again.”

And we do this about four times in the next two or so hours before I’ve had it. Each time I get a little more surly as we make our way to the bathroom where she deposits all of three drops of urine into the toilet.

By the fifth wake up, I’m done. I heave a huge sigh, I stomp to the door, throw it open in exasperation and say through gritted teeth, “Last time, Liv! Go pee and then GO. TO. SLEEP.”

She’ll do her business as she whispers, “Okay.”

I’m not proud of this behavior on my part. I’m not happy that I get so grouchy but I’m so, so tired.

Once we’re back in bed AGAIN and she tosses and turns a bit more, I’ll grumble, “Stop screwing around, go to sleep.”

I want my child to get better sleep. I want myself to get better sleep.

Of course she’s not going to kick her cold if she’s not resting. And this getting up five or six times in between 11:30pm and 3:00am does not qualify as rest.

I wish there were some way I could kindly get my point across. But the kinder I am, the more she wants to get up and pee. Honestly, she doesn’t need to use the bathroom. She’s just awake and bored and wants company and she knows the surest way to get me out of bed is for her to say she has to pee.

My inner monster comes out at 3am after four hours of broken sleep.

I’m not proud of this. I’m very much ashamed, in fact. I want to be better. I want her to sleep better. I just don’t know how to break this cycle.

And there you have it. My ugly side of mothering.

Sassy

As she approaches the grand old age of eight, Olivia is finding her voice more and more.

And it turns out her voice is very, VERY sassy.

Last night Tom brought in a small watermelon that he’d grown under one of our apple trees. The melons that grew in that spot turned out quite small this year. I asked him if they were supposed to be individual sized watermelons and he said they weren’t, they were just stunted. But the melons themselves have managed to ripen anyway, even though they were the size of softballs.

I should mention that last night was the third night in a row that he brought in one of these melons. When he called Olivia to the table for her to eat some of the melon she stood where she was in the family room, put her hands on her hips and informed him, “Dad! I do not have to eat that every night.”

He managed to not laugh and replied, “I know you don’t but we have it tonight and I want you to eat some.”

She sighed. “I don’t have to eat it every night!” she repeated even as she started walking toward the kitchen table.

I think she took about three bites before informing him that she was done and didn’t want to even be offered watermelon tomorrow night.

She’s got opinions and isn’t afraid to share them. I love that about her.

This morning we were going about our morning business. I showed her the clothes I’d laid out for her the night before. She informed me, “I want a shirt with REAL sparkles.”

Okay then. The shirt I’d originally picked out was black with flecks of color throughout. It was cute but definitely not sparkly.

I decided it would take longer to argue with her than to just go get her a shirt with real sparkles.

Two minutes later, she was thrilled with her sparkles and ready to head down to breakfast.

I know. I probably shouldn’t indulge her sassiness but I feel like we’re so lucky that she has a voice, I want her to use it, I want to hear all the thoughts going on in her head and I want to encourage her to share her opinions with us.

As far as she’s come, I never want to try and muffle that awesome voice of hers.

Being the Mom

My husband works from home. This is a wonderful thing for our family because it means he’s there when the girls’ school calls a two-hour delay due to fog, or like last week when the fog was so bad that they cancelled school altogether. He’s there, he can care for the girls while I brave the fog and head off to work.

But even though I am the one who works outside the house, I am the mom. I’m the one they want the minute I walk in the door each day, the one they both want to sit with, read with, watch television with, snuggle with and eventually fall asleep on.

I’m mom.

I wouldn’t change that for anything. I don’t think my husband would trade places with me either. I think he’s glad he can be there as needed but he prefers being the supporting parent, not the star parent.

The hart part is when I try to juggle it all.

We need my income. More than that, we need the benefits my job brings, most specifically, the insurance. We’re so, so lucky that I work for a company that provides excellent insurance. Even if we don’t use it very often, knowing it’s there is a big relief.

So even if I wanted to stay home and be a homemaker, I couldn’t. Not if we want to continue to enjoy decent healthcare.

So I go to work every day, Monday through Friday. I get the girls up and dressed each morning and then my husband feeds them breakfast while I finish getting myself ready for the day. Then I go down to join them as they’re finishing eating and it’s time for me to put Olivia’s shoes and socks on her (a chore that can take from ten seconds to five minutes, depending on how sensitive her feet are that day and how much her socks annoy her.) I brush her teeth and hair, have her go pee because she has a forty minute bus ride and no one wants to be the kid who peed her pants on the bus.

Then we wait for the bus. These days we wait outside because the weather has continued to be mild, thank goodness. As it gets colder, I might leave this task to Tom, he’s just not as wussy as I am when it comes to cold. Why? Why did we settle in northwestern Ohio? Oh, yes, because that’s where family is and what are we without extended family?

Then I go to work.

When I get home, I check homework, take O’s hair down from whatever ‘do we’d done that morning. I might sit and tickle Olivia for up to ten minutes before I start dinner. After dinner is eaten (or fed to Olivia as the case may be) I wash the dinner dishes and if it’s Tuesday or Thursday, Olivia and I go upstairs for bath time. While she bathes, I fold laundry and put it away. It has to get done at some point, right?

After bath, it’s time for dessert and books. Then we sit and she falls asleep on my lap as I rub her back, or her legs, or her arms, or, yes sometimes, even the web at the base of her thumb.

Once O’s asleep, Alyssa will call from the couch, “I miss you.”

At that point, we spend about forty-five minutes together, laughing, talking, or sometimes just sitting. More often than not, she falls asleep with her head in my lap. I wouldn’t change that for anything. How lucky am I that my eleven year old wants to sit near/on me, spend time with me.

I admit that being the mom, in my case, the mom who also works outside the home, is tough sometimes but it is so, so worth it. My girls are amazing. They make me laugh every single day. They make my life so much better just by being a part of it.

Olivia asked me last night, “Why do you love me?”

Oh, baby. Let me count the ways.

Sixth Grade and First Grade

So we’ve finished two months of this school year. How’s it going?

Sixth grade seems to agree with Alyssa. She comes home with homework most nights but doesn’t complain about it, gets it done with minimal fuss and has passed all tests given to her.

She still has some pretty fabulous friends. Just this year, though, she’s mentioned the ‘popular’ kids. She actually puts air quotes around the word popular. Ha. She’s funny. She doesn’t understand how kids are deemed ‘popular.’ I think she wants to understand it so she can crack the code. She says she doesn’t care if she’s popular but I think every kid wants to be part of the cool crowd.

The thing is, she and her core group of friends are sort of their own kind if ‘in’ crowd and I’ve been trying to explain that to her. I’ve told her how it was when I was in school, how much I really just wanted to hang with people I actually liked rather than with people everyone else though was ‘cool.’

I think she gets it even as she ponders the necessity of a hoodie in hopes of fitting in.

We put some more color in her hair this past weekend and she tried on a hoodie but hated the way it felt. She picked out a black jacket that zips up the front instead. She looks pretty cool to me.

First grade is way less socially stressful, let me tell you. In first grade, it doesn’t matter if you wear the right clothes or shoes. First grade is all about spelling tests (done verbally for Miss O, thanks so much) and learning to eat lunch at school.

First grade has brought two falls in the hallway and one pinched hand during gym class. Olivia’s being put through the physical wringer, that’s for sure.

But she seems as happy as her sister. She still doesn’t really care if she has friends but she’s taking more if an interest in what those non-friend classmates are up to. It’s a start, I think, toward wanting to interact.

What I want most for both of my girls is that they be happy. That they find people who let them be themselves and make them feel good about who they are. I want them to work hard and to their fullest potential. I want them to make mistakes and learn from them, I want them to learn to laugh, at themselves and life in general.

I hope sixth grade and first grade continue on this path, a path that leave happy, if tired, kids each night. They’re learning, both academically and socially. They’re learning their way in their worlds, worlds that don’t always include me. But I’m there, on the periphery, a steadying hand when needed, a cheerleader, a shoulder. Whatever they need from me, in these grades and beyond.

Will You TIckle Me?

I can’t count how many times Olivia asks that question. She asks it of me, of Tom and even of Alyssa, in hopes that someone, anyone will tickle her.

Before my weekend in Phoenix, I thought maybe Olivia was looking for an excuse to sit on my or Tim’s lap and just be near us.

After my weekend in Phoenix, I realize that when she asks us to tickle her, Olivia is actually asking for sensory input. She’s feeling a need and the only way she knows to ask for it to be fulfilled is to ask us to tickle her. She wants to sit next to (or on) someone, feeling their warmth, their strength, and she wants, or needs us to touch her, to tickle or scratch or even brush her skin. She’s asking for tactile sensory interaction without using those words.

I figured that out during one of the amazing sessions I attended a couple of weeks ago. Barbara C. was awesome as she explained that kids with sensory issues sometimes need more input than others in order to figure out their place in the space around them.

Sounds weird, huh? But sometimes, kids (and even adults) can feel lost in the space around them. Sensory input grounds them, makes them more aware of their bodies and how they fit into space.

This weekend when Olivia asked me to tickle her, I did. I sat with her and I let her lay across my lap. I tickled her back and her neck and her tummy. I tickled her feet and knees as she squealed and laughed. Part of this interaction, I know, was just her wanting to be near me, both of us concentrating on the other in that moment, but the other part was her need for sensory input and I was glad to give her that.

Later, I explained to Tom and Alyssa what I’d learned, how this helped Olivia get through her day. They both nodded like I was crazy but then watched Olivia calmly go about her business after a bout of tickling.

I’m so grateful for the session because I think it makes me a better mom. It helps me provide what Olivia needs when she asks for things like this. It also helps me understand that when she finds a quiet corner into which she can huddle, she’s looking to eliminate sensory stimulation. I can help her calm her senses when I know that’s what she needs.

All this to say, sometimes, when Mom goes away, she comes home with some awesome tools to make life better for everyone in the family.