Thursday, October 30, 2014

Already Behind

So we’re heading into our busy season. I should probably but the word busy in quotes because compared to other families (I’m looking at you, Julie and Riley) we’re not really all that busy but compared to our own, more sedate schedule, the coming months are going to be busy.

And here I am, already behind on the laundry and dirt patrol of our house.

Last weekend we were only gone one day and things got away from me.

This coming weekend should be okay, Alyssa has a party on Saturday but it’s only a few miles away and I can drop her off and pick her up instead of staying with her like I did when she was in second grade (can you say hover?)

Next weekend is my birthday. Yay me!! But it should also be fairly easy to stay on top of our weekend chores.

The weekend after that the girls and I will leave on Friday afternoon (I’ll pick them up from school) and we’re head to Bloomington for the IU dance marathon. We’ll be gone until Sunday afternoon. Guess what the laundry will be doing? Accumulating. I know, so sad.

The weekend after that, we leave on Saturday morning for West Lafayette for the Purdue dance marathon. We’ll come home on Sunday but before we can actually come home, we’ll stop in Fort Wayne for O’s birthday party. Yay her!! Tom will meet us there along with all her little guests. Fun.

The following weekend is Thanksgiving and O’s actual birthday. We usually put the Christmas tree up on the Friday or Saturday following Thanksgiving, so that’ll be fun and messy. But still fun.

Then it’s December and the real fun begins.

I don’t know when the laundry is going to get done. Or the carpets will be vacuumed, or the floor swept. But fun will be had and memories will be made. In the end, that’s all the counts.



Wednesday, October 29, 2014

I Worry and Worry and Worry

When Alyssa was younger, I worried so much about how having a sister with a rare syndrome would affect her. I worried that Olivia was so needy at times that Alyssa was being pushed aside, her needs neglected because her sister’s needs seemed greater.

I worried that Alyssa would feel as if her sister received preferential treatment, that Alyssa would feel like she’d been pushed aside as her sister was celebrated and treated with tenderness.

I worried that they wouldn’t have a good relationship because what if Olivia couldn’t relate the way Alyssa needed her to. I worried that Olivia’s status as a child with special needs would push Alyssa to the background and make her feel invisible.

I worried that I could never be enough for both of them, that they’d both always need more from me than I could give. I worried that when I was doing something for one of them, the other would feel neglected or less loved.

I worried and worried and worried.

And they just kept growing and doing and learning and becoming these amazing people that I love so, so much.

Olivia is still kind of needy at times, but Alyssa has developed a maturity that allows her to wait until Olivia’s needs (or wants, yikes!) are met and then she voices her needs reasonably and I do my best to meet them.

At eleven years old, Alyssa is very capable of doing a lot of things for herself. She packs her own lunch each day, she showers without help, she folds towels and clears the table. She does her homework with minimal help and she knows what she needs to take to school each day and does it.

But each evening, after I’ve read to Olivia and settled her to sleep, Alyssa will call out, “I miss you.”

And that’s my cue to go sit with her. Sometimes she sits with her feet across my lap, other times she just leans against me. She even likes to lay with her head in my lap sometimes. I love this quiet time with her, time when we’re both a little sleepy but still totally there with each other. We talk about the day, about her classmates/friends, sometimes about what’s happening on whatever we happen to be watching on television. We laugh, we tease, we connect.

I watched my girls together and realize that I should never have worried about their relationship. They love each other so much. They also know exactly how to push each other’s buttons. They’re sisters, they fight, they laugh, they tease, they team up against the parents and I am so grateful for it all.

Will this stop me from finding new things to worry about? Probably not, but it helps to keep the worry in perspective.

Tuesday, October 28, 2014

When the Doctor Listens

Alyssa has had the sniffles for about four days. Olivia told me on Sunday evening that her ear hurt. I noted the date just in case we ended up at the doctor later in the week and I had to report when her symptoms started.

When I got home last night, I found Olivia curled in the recliner, a blanket covering her. I kissed her forehead and found it hot to the touch. Alyssa insisted on taking O’s temperature and reported that it was 101.2.

I went out to find Tom, who was on scaffolding with her brother, putting siding on our detached garage. Yeah.

I told him I was taking O to Urgent Care. He asked why. I explained her fever, her sniffles, her ear pain from the night before.

I told him, “I can either take her today or you can bring her in on Wednesday afternoon when she’s suddenly worse.”

He nodded that taking her to the doctor right then was the right decision.

I packed Olivia and Alyssa up, made a stop at my mom’s to drop Alyssa off (the power was out at our house, she would have been stuck inside a dark house while Tom worked outside) and then O and I made our way to Urgent Care.

After a 45 minute wait in the waiting room and a half hour wait in the examination room, the doctor finally came in to look at her.

She examined O’s ears, listened to her heart and lungs and then let me talk a little bit about O’s history.

She finally said, “If this were a typical child, I’d probably tell you she’s got a virus and send you on your way. But you know her better than anyone and if you think she’s just going to keep getting worse, I’ll write you a prescription for an antibiotic. You can wait a few days to start giving her the medicine to see if she kicks this herself but from your description, that’s not going to happen.”

The clouds parted and the angels sang as the miracle of a medical doctor actually listening to a parent, taking that parent’s knowledge of her child into account and admitting that she might not know that child as well as the parent does sank in.

I was amazed that she was so willing to take Olivia’s history into account instead of just looking at her clear ears, her deep, non-raspy breaths and her steady heartbeat. She acknowledged that we’d been down this road before and my knowledge of my child and her health trumped the symptoms of the moment.

There are doctors out there who care about the people they’re seeing. We met one when Olivia was two and a half and we met another last night. I was so, so grateful to this doctor who looked at my child and saw not just another number to get in and out the door. She saw a little girl who has a mom who knows her very well. She saw a child with a rare syndrome (this doctor had never before seen a person with 5p- syndrome) and acknowledged that perhaps, as the mother of this child, I just might actually know more about her and her syndrome than the doctor herself did, since I live with Olivia and how 5p- affects her.

I gratefully took my child and that prescription home. I didn’t fill it last night. I decided to go ahead and wait.

This morning, Olivia spent the day with her Gram and I took her prescription to the pharmacy. Her fever was lower this morning, but still there. She was full of pep and energy but when she breathed near me, I could smell the sickness in her. We’re starting the antibiotics this evening.

Monday, October 27, 2014

I'm the One Who Fell in the Lake

My grandma turned 89 this past weekend. We drove up to Battle Creek, MI to celebrate with her. We, this time, is not the royal we so much as all of my grandma’s living children and their children and their children’s children.

Yeah, there were a lot of us in my aunt’s house, is what I’m saying.

My aunt’s house is on a lake. Okay, so it’s not ON the lake, but the backdoor opens and if you take about ten steps out onto her deck, you’re almost IN the lake. So yeah, there was water right there, water that little girls were yearning to throw sticks and rocks into.

I took the girls out to ‘look at the lake’ a little while after we arrived. Jaxon, my nephew, wasn’t there yet so the girls played with sticks, tossed fallen leaves into the water, and just enjoyed a very mild October day in southern Michigan.

Before we left that morning, Olivia asked to wear her Elsa dress to the party. I figured, what the heck, she’s already been trick or treating (yes, our town had trick or treating on October 25. Why? I don’t know, they’re stupid, I guess) and so I let her wear it.

I did take extra clothes, though, just in case she wanted to change at some point in the day.

We got there, the dress and hair caused exclamations of joy and delight, the water was appreciated, lunch was eaten, Olivia decided she wanted to change out of her dress and into the warm pants and shirt I’d brought for her and then…Jaxon showed up.

The girls wanted to show him the water. Olivia kept telling Jaxon that Alyssa was going to throw him in the water. Then she’d laugh like a maniac and tell him she was just kidding, that Lyss wasn’t actually going to do that.

Out we went to toss more sticks and rocks into the water.

My aunt’s deck is built up to a sea wall which has a step about three feet down. That step is about two inches above the water. Last summer, when the lake was higher, the step was actually under water by about two or three inches.

Olivia had climbed that sea wall countless times earlier in the day with no trouble at all. She refused help from me whenever I offered it. She was fine with climbing up and down, thank you very much.

I watched her climb up to get another stick and then, I watched her start to climb back down the three foot step. I watched her slip and tumble. I watched her roll across the step and plop right into the water.

I was about six feet away from her when she started slipping. I was stepped down off the sea wall and onto the step when she made her first splash into the water. I was pulling her out of the water before she even had time to stand up in the eighteen inches of water that lapped against the step.

She shivered and said, “My shoes are full of water.”

I put her on the sea wall and then onto the deck and told her, “Baby, your entire body is soaked, not just your shoes!”

But she couldn’t stand those wet shoes on her feet. While my cousin Aaron went to get her a towel, I took her shoes off and poured the water out of them. When the towel arrived, I helped her out of her clothes and into the house, where we dried her off, put her clothes into the washer and put her dress back on.

She declared, “I’m not wearing any underwear!”

I told her that if she didn’t tell anyone, no one would know. She giggled.

We waited for the wash cycle to be done with her clothes and it was time to go home. Her shoes were still soaked so she had to be carried to the car.

Alyssa was not amused by this entire spectacle. She kept saying, “I’m the one who has a bad cold, why is she the one being carried?”

Liv would answer, “Well, I’m the one who fell in the lake.”

By the fifth time this answer came, Lyss was over it.

When asked if falling in the lake was kind of fun, Olivia nodded with a sly grin. If I hadn’t been there to see it happen I might have thought she’d done it on purpose.

When we got home the first thing Olivia told Tom was, “I’m not wearing any underwear because I fell in the lake.”

Alyssa’s eyes might have rolled out of her head if they weren’t stuck in there from all the snot in the poor girl’s sinuses. You’re welcome for that image.

Thursday, October 23, 2014

A Plain Old Boring Shirt

I lay out Olivia’s clothes for the entire week every Sunday afternoon. This is a left over habit from when I was packing for myself and the girls each weekend when we had our nightmare commute.

It just really makes things easier to already have clothes laid out. No arguing, no thought, just grab the next outfit and make it work.

Except, this morning, I started to put a black and white striped shirt on Olivia and she groaned, “Why do I have to wear a plain old boring shirt?”

I thought this was a reasonable question so I said, “I guess you don’t. We can go pick out a different shirt if you want.”

She didn’t actually want. She wanted to sit in front of the space heater while I went and picked out a different shirt. Thank you very much, the end. Except not the end. As I left the bathroom, where she sat in her black pants in front of the space heater, she ordered, “Get me a shirt with a picture on it.”

Aye, aye, Captain!

As bratty as it sounds here, it was actually fairly amusing this morning. She’s just such a girlie girl, so very much all about being pretty and presentable.

I picked another black and white striped shirt, but this one had glittery red letters that spelled out, “Love to Shine.” She was thrilled with this pick and agreed to finish getting dressed.

There is one thing about Olivia that can be counted on and that’s the fact that she believes in the motto, “The fancier the better.”

And I love that about her. She notices everything fancy. I can count on her noticing if I wear earrings because, well, I rarely wear them so when I do, she’s the first to see them and mention how pretty they are. She’d wear lipstick every single day if we let her (we do not.)

Each morning she asks me how I’m doing to do her hair that day, hoping for some sparkle or fanciness to dress up her day.

I hope she never changes this about herself. I hope she always finds joy in glitter and rainbows.

Wednesday, October 22, 2014

Shaking Things Up

When I got home from work yesterday evening Tom informed me that the girls wouldn’t be hungry for dinner at the usual time. He’d waited to feed them snacks after school and so they needed a little time before dinner.

“Okay,” I said. “We’ll just go up now for Liv’s bath instead of waiting until after dinner.”

Olivia was thrilled with this shake up. She loves bath time and is always willing to change up the schedule if it means bath time is now instead of later.

Alyssa joined us in the bathroom, which was unusual. She’s usually either outside with Tom or on her tablet. But this time, she got out her horses and played with them in Olivia’s bathwater while I folded towels.

Olivia loved the extra attention she got from her sister so much she ended up soaking Alyssa and the bath rug. But a little water never hurt anything and fun was had by all. A lot of water? That can do some serious damaged but a soggy rug wasn’t anything to get annoyed over.

After O’s bath, Alyssa figured since she was already wet, she’d shower before dinner.

In the end, dinner was only about a half hour later than usual and it was lovely knowing that bath and shower were out of the way for the evening.

Sometimes, you’ve just got to shake things up.

Monday, October 20, 2014

Every Kid

I ‘shared’ something on Facebook this weekend that was so awesome. It is something I’d like to print out and hand to every single ‘well –well meaning’ adult I encounter with my kids.

Most especially, I’d like to print it out and hand it to the librarian at our local library who is constantly trying to get my girls to talk to her. You know the one? The one who will stoop down and point to her eyes, telling Olivia, “I’m speaking to you. Not your mom.”

This woman is so sure that my kids are spoiled brats that just need to be taught manners. She has no clue what Olivia has overcome just to speak to me. She has no clue that there are doctors who said my child would never speak at all so her ability to talk to those she’s most comfortable around is a miracle. The fact that she doesn’t talk to a woman she sees every few weeks does not indicate brattiness on O’s (or A’s) part but instead a shyness that is difficult to overcome.

Ahem. Sorry, that woman just makes me crazy with frustration. The girls have gotten to the point of pretending to look at CDs while I check out the books if that particular librarian is working the check out desk.

Why do they have to change their behavior because she’s so rude?

Anyway, the post I shared said this:

And I love it. I love that it points out that just because a child doesn’t react the way someone thinks they SHOULD, the child isn’t necessarily being rude or hasn’t been taught manners.

We’re doing the best we can around here. Olivia is absolutely doing the best she can.

This weekend, Alyssa has a friend over. Olivia TALKED TO that friend. She didn’t ever say S’s name but she did speak directly to her, calling her “Lyssie’s friend” whenever she wanted to get S’s attention. Last year O would only speak to A’s friends by talking through either me or Alyssa. Now? She’s talking TO them. This is awesome. It’s a step. We’ll get there, and we’ll do it much faster if nosy librarian’s would mind their own business and just check out my damned books.

Friday, October 17, 2014

Feeling the Love

My mom dropped O’s Halloween dress this week. Big surprise, she wants to be Elsa for Halloween. She and the rest of the under 10 girls (and probably some boys, no judgment here) in the U.S.

The dress turned out beautiful. My mom said it was the hardest thing she’s ever sewn in her life. And my mom has had quite a bit of sewing experience.

Olivia loves it. She loves it so, so much.

When she tried it on she twirled and danced around the room, declaring, “I feel so beautiful! And magical.”

Then she tried to freeze her sister because, well, duh, that’s what Elsa did. Though Elsa’s freezing of Anna was accidental, I quickly reminded Olivia. She giggled and went back to spinning.

Later, after O’s Gram had left and Alyssa peeled herself off the floor to which she’d fallen, bereft that Gram had to leave at all, I helped Olivia out of her beautiful dress and into her pajamas. She settled in to bed, waiting to be tucked in. I leaned in to kiss her and she looked dreamily into my eyes.

She then said, “I feel so loved.”

Awww, my heart might have burst into a million pieces right there.

I told her, “You are very loved. I’m so glad you can feel it.”

“I do,” she nodded. “I know I am loved because I have a Gram who makes me beautiful dresses and a mom who reads to me and a dad who feeds me breakfast every day.”

That girl. She surprises me every single day. She is so loved, adored, cherished. I’m so, so glad she feels it and can articulate those feelings.

Wednesday, October 15, 2014

Conference Time

It’s that time of year again. I got the form in O’s folder to schedule conferences to meet with the girls’ teachers.

I debated whether or not to even bother meeting Alyssa’s teacher. These poor souls sit there and try to come up with constructive criticism to make it worth us even meeting. In fourth grade, A’s teacher told me that Alyssa could work on her handwriting. Her handwriting. That was her biggest complaint about Alyssa.

Last year, the teacher didn’t even bother coming up with a complaint. She said, “I wish I had twenty more kids just like her. My days would be perfect.”

It’s nice to hear.

Tom often says he doesn’t believe she’s that good at school because she gives him a lot (A LOT) of attitude at home. But I believe it.

I believe it because I was that kid in school. If there were rules, I obeyed them. If there were kids who didn’t have friends, I played with them at recess. But at home I was meaner than shit to my brother. I was rude and obnoxious to my grandmother. I was safe at home and so I let my rage fly.

At school, I kept it together, I did everything that was expected from a ‘good’ kid.

Alyssa’s the same way. She holds it together at school and when she gets home, her stress can be freed. And poor Tom gets the brunt of it. I’m working on both of them to figure out how they can communicate with each other a bit more constructively.

So why do I meet with Alyssa’s teacher? Because I’m that mom. I want to know how she’s doing even if I’m pretty sure she’s doing well. I also want to show her teacher that I’m involved, that I’m there, I’m part of the team and I am supporting my child’s education. Yes, I care what the school thinks of me. I can’t help it.

Olivia’s teacher has been great about communicating with me all year already so there shouldn’t be any surprises during our meeting but I’m going to that one too.

I want to hear her say to my face that Olivia has come REALLY far this year. I want to be able to share with her how much I appreciate ALL that she’s doing and will do for Olivia. O’s growth, both social and academic, is astounding this year. And I feel like it’s all because of Mrs. A and how she’s connected with Olivia. I want her to know that I see that and it means the world to me.

Yes, conferences can be stressful but they can also be very informative and they’re a tool to helping my girls make the most of their time at school.

Tuesday, October 14, 2014

Frog People

I was probably about six years old when I started dreaming about the frog people. My cousin Chet and I would be on an island where we were being chased by frog people. That’s the best way I have to describe the things that were chasing us. They had green skin, looked like frogs and wore cloth diaper-esque clothing over their privates. They carried spears and laughed as they chased us.

We’d always make it to the edge of the island, where we could see another landmass across the water. On that other shore stood our mothers and siblings, waving to us, calling out to us to make our way to them.

I had this dream many times as a child. I convinced myself that if I slept on the outside of a bed, rather than against a wall, I’d have the dream. I was also sure that if I slept holding my mom’s hand, I wouldn’t have the dream.

I mention this because we had five whole days in a row of Olivia sleeping through the night, in her own bed and it was awesome. Seriously, those who are not chronically sleep deprived do not have a clue as to how amazing it is to sleep five whole nights, IN A ROW, without someone, anyone waking them up even once.

So yeah, she’s slept well for the past week or so. Except the night before last, when she woke up at 11:30 to join me in my bed after she had to potty. I know, I should be happy she’s waking up to pee at night, right? Okay, I am. Sort of.

Last night, though, Olivia started in my bed, and again, she slept all night long with nary a peep.

As I drifted off to sleep, I remembered the comfort of my mom’s hand when I was Olivia’s age. I wondered if my mom often felt the same frustration and exhaustion when she dealt with me and my frog people.

I realized how amazingly patient my mom was. How I never knew if she was exasperated with my need to hold her hand as I fell asleep.

And I vowed to be a little more patient with Olivia on the nights she starts in my bed and even the nights she wakes me up and ends in my bed. She could have her own version of frog people dreams, dreams that haunt her, that freak her out, that make her need my nearness.

If I’m able to be half the comfort to my sweet girl that my mom was to me, my job is absolutely worth the almost eight years of sleeplessness I’ve experienced.

Monday, October 13, 2014

One Last Day at the Park

The weekend before last, Alyssa asked on Sunday afternoon at about 4:30 if we could go to the park. I glanced at the clock and told her it was a little late in the day to do something like that, that dinner was going to need to be started soon, baths/showers needed to happen, blah blah blah.

I told her that the next nice weekend that occurred during which we didn’t have a bunch of other stuff to do, we’d go to the park. (Our weekends are filling up as we get closer to the holidays.)

On Saturday, we had to go to Huntington to a baby shower for Tom’s youngest son and his wife (the son’s wife, not Tom’s wife. Duh.) We left home at 11:00 that morning and got home at about 8:30 that evening. Yeah, long day. No park for us even though the weather was absolutely wonderful.

Yesterday morning, the first thing Olivia asked when we got up for the day was if we could go to the park.

I looked outside, was a blustery wind blowing and told her that if it warmed up, we’d go.

She watched the wind all day, wishing it away and hoping the sun was doing its job of warming up the air outside.

At 2:00, Tom came in, watched his favorite tv show (the weather channel) and said that if we were going to go to the park, we should probably do it in the next hour or so.

Alyssa raced to get dressed, Olivia let me put some annoying socks on her poor little Rapunzel feet and off we went.

We ended up spending over an hour at the park, first dodging what Alyssa called annoying seventh graders and an even more annoying classmate of hers. We had the park to ourselves for most of the hour, running, swinging, falling off the teeter totter, sliding down slides, climbing back up slides and pretending we were a wolf pack and one of the climbing areas was our den.

After the park we went to the local dairy treat and were happy to see that we’d made it for their last day of business for the season. The girls enjoyed their ice cream even though Olivia had to eat it with a sore knee. She tripped right outside the Dairy Treat and had to be carried to a table where her ice cream was delivered to her by a concerned sister.

It felt good to be outside, enjoying what is left of the sun as it weakens with each passing day into winter. The girls needed the fresh air (so did I) and the exercise. I love having these moments in time when memories are being made, when moments are being taken to just be together, to enjoy each other, to remember that we actually like each other as much as we love each other.

Friday, October 10, 2014

When One Becomes Five

About a week ago, I had my annual physical with my OB/GYN. I know, TMI. But it pertains to this story.

While speaking with the nurse practitioner, I asked about getting Alyssa the HPV vaccination. Ginger, the nurse practitioner (not her real name but very similar to her real name, which is even weirder than Ginger, just saying) said that their office doesn’t administer the vaccine but that our family doctor, who happens to be in the same office area does.

She also emphasized that it is very important to get the three shots that give this vaccination before a girl (or boy, boys are encouraged to be vaccinated to…end PSA.) is sexually active. I told Ginger that Alyssa is eleven a couple of times but she kept coming back to the emphasis that it needs to happen before sexual activity. Yeah, I finally said. I know, which is why I’m asking about it now, when sexual activity is the last thing on her mind. She’s ELEVEN and still thinks boys are gross, thank you Lord!

So I made the appointment with our family doctor.

I gave Alyssa a heads up about a week ago, letting her know she had to go in and get a shot because it was in the best interest of her health.

She wasn’t happy with me but got over it pretty fast. MY girls are pretty cool about this kind of thing. They understand that sometimes we have to do things we don’t want to do because it’s for our own good.

The morning arrived and Tom gleefully reminded Alyssa that he’d be bringing her to town that afternoon so I could take her to the doctor to get her shot.

She frowned at him as only a preteen girl can frown at someone and went about her day.

I left work about a half hour early, met Tom and the girls at O’s eye doctor to get her glasses bent a little to fit her face better.

Then we headed off to our family doctor where Alyssa was all ready to get her shot.

Except…we were ushered into the consult room where the nurse looked over Alyssa’s records and informed us that Alyssa was behind on a couple of other vaccinations and did I want to just get them done today?

She told me that in Indiana all sixth grade students need to be vaccinated against Tetanus and Meningococcal.

Alyssa’s eyes widened and I saw that she was fighting tears. As the nurse spoke, her face got more and more tense.

“So we’re talking about to three shots at this point?” I asked, giving Alyssa my most sympathetic look

The nurse said, “I’m not done. She’s also due for an MMR booster and her HepA booster.”

Alyssa made a choking sound. “Five?” she said, incredulous at this news.

I mean, seriously. Can you blame her? The poor kid has herself all pumped up to receive on shot and she’s hearing this nurse tell her she needs five.

“I’m sorry,” the nurse was kind enough to say. “But yes. Five.”

I asked, “Is there any reason we shouldn’t give her all five today? Is it bad for her to have all of them at once?”

The nurse told us that there was no reason not to give her all the shots that day. They wouldn’t interact, she’s young and strong. It was better to get it all over with.

Alyssa maintained her composure, not even a single tear made its way out of her eyes.

The nurse left for a few minutes and then came back with reinforcement. She’d brought another nurse with her so that they could do the shots together.

She got two shots in her right arm and three in her left. She remained calm and barely flinched with each of the five shots.

And get this. When we left the doctor’s office, Alyssa was kind enough to tell me that she didn’t blame me for allowing this to happen. She blamed the nurse for bringing the awful news about needing all five shots.

Then, in her graceful way, she admitted that now that it was all over, she was glad we’d gone ahead and done it all at once instead of spacing them out over the next few weeks.

I didn’t have the heart to remind her that we’ll be back in a month and then again in six months for the next two HPV shots. That reminder will come soon enough.

Sometimes we have to do things we don’t want to do because it’s for the greater good. This time, it was for Alyssa’s greater good. Even she understood that.

Thursday, October 9, 2014

New Normal

A new mom posted on the 5p- support page on Facebook last night. Her one month old daughter has been diagnosed with Cri du Chat.

This mom is devastated. She’s crushed that her child has received this diagnosis. She’s saddened by what she feels is the loss of all the dreams she had for her daughter, the loss of the child she thought she was having.

I get it. I get that feeling of loss, that feeling of sadness, that worry about the health of her baby.

But I didn’t say that when I responded to her post. Instead, I told her that she’d find new dreams, that with therapies and lots of love, her daughter would show the world how amazing she could be.

I also posted a picture of Olivia. I couldn’t resist.

I go all Pollyanna and often think that if parents of brand new babies just diagnosed with 5p- syndrome could just see Olivia, hear her voice, watching her run and dance and join her in a moment of laughter, all the sadness they’re feeling will melt away.

I know that seeing how awesome my child is won’t necessarily erase the fears and sadness new parents feel as they start the journey of parenting a child with special needs but I do think that if they can see someone (like us) a little farther down the path than they currently are, if they can see us living and loving and laughing and experiencing joy and hope and happiness, it might bring them at least a little comfort, the idea that maybe this new normal they’re facing isn’t all gloom and doom.

Wednesday, October 8, 2014

Stories from First Grade

The other night, Olivia was full of energy and sass.

She’d had quite a day at school and seemed eager to tell us all about it.

“Today we had some third graders in our class,” she said. “One of them was crying and so the rest of us went to the sensory room to have a snack.”

“Did you guys leave the third grader alone in the classroom?” I asked.

“No,” she said, reaching for a pen with which to doodle. She tells some of her best stories while she doodles. “A teacher stayed with the third grader. I think the third grader was throwing a fit.”

“That poor third grader,” I commented. “She must have been having a bad day.”

“A really bad day,” Olivia agreed.

Olivia’s teacher is the special education teacher and is certified to work with kindergarteners through third graders. I love this teacher and hope that Olivia gets to work with her for as long as O needs to do so, up to and including third grade. Mrs. A has brought Olivia so far already this year.

Late that evening, Olivia asked me, “Do you know the Macarena?”

I smiled and said that I did know the Macarena.

She asked me to do it with her, but to a new song.

So as she sang the months of the year, we danced the Macarena together. It was awesome.

She informed me, “We can also do the Macarena while singing the days of the week.”

Good to know.

The sponge that is Olivia’s brain is soaking everything in these days. Her handwriting has improved immensely from last year to this year. It’s like she’s grown three years in just a couple of months.

This is the year we actually get to hear stories from Olivia herself about what happens during the school day. She tells us about what her teacher wore that day, to which students might have talked to her. She laughs at jokes she heard during the day and retells when she gets home.

Last night as I was washing dishes after dinner, I heard Alyssa and Olivia in the living room. Olivia was reading a book to Alyssa. Yes, that’s not a typo. OLIVIA was reading to Alyssa. It was so, so great. She put emotion into the words she was reading aloud to her sister. They giggled and shared glances as Olivia read the story.

It was a beautiful moment, one out of so many we get to enjoy these days.

Like Olivia, I’m soaking it all in, marveling at how lucky we truly are to all have each other in this moment in time.

Tuesday, October 7, 2014

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.

Monday, October 6, 2014

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:

Friday, October 3, 2014

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.

Thursday, October 2, 2014


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.

Wednesday, October 1, 2014

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.