Saturday, May 31, 2014

On the Mend

Olivia will take her last dose of antibiotics this evening. She went to school yesterday for half a day. She's on the mend.

My new nephew was born on Wednesday. Connor weighed 7lbs, 6oz. He was induced a week early and is perfect. I'm so happy for my brother and sister-in-law. They're family is complete and they couldn't be more blessed.

The girls have three days of school left. This is such a relief. After the long winter, we're all ready for some sun and heat and swimming and yes, even ice cream.

Alyssa will be officially be a sixth grader as of Wednesday at 3:02pm. I'm not going to say that I don't know where the time went because, well, I've been here, watching this girl grow and learn and amaze me every single day for the past eleven plus years. She's earned her way into the sixth grade. Heck, she picked out three books at the library today to read toward next year's AR points. She came in fourth in the entire elementary school this year for the most AR points. She'd really like to be first next year. That girl is just plain awesome. Though, wait, I had to inform her yesterday afternoon that she is not allowed to be a sullen teenager. She was making a pouty face at me and it was such a sullen teenager face that I had to declare that it's just not allowed. I won't have it.

We'll see how that works out.

Olivia is heading into the great big world of first grade next year. She's excited about having a locker even if it doesn't lock. I've put a positive spin on her being in a self-contained class with the special ed teacher. She's excited about it and I'm excited about the academic opportunities this is going to open for Olivia.

We're all ready for a summer break. Ready for a more laid back schedule, for even a little extra sleep, for a break. Bring on summer.

Wednesday, May 28, 2014

One Day More

Olivia stayed home from school again today. I got up at the usual 5:30 this morning to start our morning routine. I found Tom at his usual spot in front of the window. He asked how O’s night went. Aside from some cough, cough, coughing off and on through the night, she slept well.

He asked how long it is suggested that one keep a child with pneumonia home from school.

I said that when asking a medical professional that question, the stock answer is, “Keep them home until they feel better.”

Huh. Not necessarily as helpful as one might think.

I googled the question. Again, there was no solid answer but the suggestions for caring for a child with pneumonia at home included keeping that child well hydrated, rested and comfortable.

While I was at work yesterday Tom and Olivia spent the day eating and resting. Perfect. When I called home before leaving work to see if they needed anything, Tom said that Olivia wanted him to call me earlier to tell me that her hands hurt. She was slightly feverish and her joints were aching. Poor baby.

When I got home (they didn’t need anything) he told me that just before I got home, she told him that her heart hurt. One of the symptoms listed on the site I pulled up this morning listed chest pain. O isn’t sure what or where her lungs are but she does know where her heart is and so chest pain to her meant her heart hurt.

She informed me last night that cold oranges and popsicles make her heart feel better. I’m glad something does.

So after all that, Tom and I decided that since Olivia refuses to eat or drink while at school, she was better off staying home for at least one more day.

I think we both feel good about that decision. I know Olivia did. She was quite happy when I left for work this morning, her cup of water by her side, her tablet in her hand, Frozen on the television (in English this time, with the English captioning on.)

If you can’t spoil a sick child, who can you spoil?

Tuesday, May 27, 2014

This Time We Didn't Wait

She started coughing on Friday. I wondered if maybe it was just a residual cough, left over from the ear infection/cold she’d had a month ago.

Saturday, she said her arms and shoulders ached. I gave her some ibuprofen and cough medicine and hoped for the best.

Sunday, Tom brought her to me at 9am, saying she wanted to lay down with me. I pulled her into bed and realized how warm she felt.

A half hour later, Olivia and I were on our way to Urgent Care, one day short of a month from when we were last there.

Last time, I tried to wait the cold out, to give her body time to fight it. I kept telling myself that it takes ten days for a person to get over a cold.

This time we didn’t wait those ten days and I’m so, so glad we didn’t.

The wait at Urgent Care was insane. She wanted to sit on me and have me keep her warm.

Once we were finally called back, the nurse took her temperature and Olivia had a fever of 103.1. Yikes.

The nurse gave her a dose of Tylenol (probably $10 for that single dose) and the doctor finally came in to look at my girl.

She looked in O’s waxy ears, declared them clear (yay), looked at O’s throat, declared it also clear and then went about listening to Olivia breathe.

Olivia took deep breath after deep breath.

The doctor sat back and did not declare Olivia’s lungs clear. Instead, she stated, “Pneumonia.”

Not yay.

We left with a prescription for another antibiotic and instructions for Olivia to drink as much water and other clear liquids as possible. We were also instructed to take her to the ER if her temperature went above 104.

We headed to the Walmart (because, duh, where else does one go for anything at all?) pharmacy where we saw all the new friends we’d made in the Urgent Care waiting room and waited for O’s medicine to be ready. The lady who took the prescription paper from me mentioned that Olivia didn’t look like she felt well and when I mentioned the pneumonia she said she’d had it several times and it wasn’t fun. She also said she’d put Olivia’s order in as critical so I could get my girl home. People can be so kind.

There was still going to be a wait, so we bought some powdered donuts and cranberry/apple juice for Olivia to eat/drink while we waited. Never fear, we paid for these things before she consumed them. We’re not THOSE people who hand the cashier an empty wrapper at the end of our shopping trip.

When we were finally called to the pharmacy counter for a consultation with the pharmacist, he explained the dosage and then mentioned that this particular antibiotic will make her sensitive to the sun. He then glanced down at my bare arms (never fear, I wasn’t wearing anything as scandalous as a tank top, just a short sleeved shirt) and said, “Well, you’re both already pretty pale. Stay out of direct sunlight.)

Ha! Hahaha. Yes. Okay, we’ll do that. Thanks.

But seriously, this means Olivia needs to stay inside for recess this week at school, when she finally returns to school, which wasn’t be today, since she had a 101.3 fever just last night.

Finally, we got home and got Olivia settled in for a Frozen marathon. She watched it many, many times, often asking to watch it in either French or Spanish with the subtitles on as well. She’s funny like that.

But at least she’s on the mend now. And can I say again how glad I am that this time we didn’t take the whole wait-and-see route with O’s health. Yikes. But since we didn’t wait, she’s on the mend, often asking why there is “ammonia” in her lungs. I’ve tried to explain that it’s just a germ that’s making her sick and that the medicine, which she’s declared is yucky, will make the pneumonia go away. She usually just shrugs at me and goes on to ask if there is ammonia in her bones too. Seven year olds are funny, even when they’re sick.

Thursday, May 22, 2014

Cultivating Kindness

I can be a pretty snarky person. No, no, it’s true. I can be heard saying obnoxious things about television commercials, people on television shows, slow people in Walmart, etc. pretty much all the time.

My girls hear all this and think it’s hilarious.

I realize how awful that is, actually.

Alyssa and I were watching the finale of this season’s Dancing with the Stars (Maks and Meryl for the win!) and listening to Meryl speak made me realize how lovely it is to listen to someone who is genuinely kind.

She’s so soft-spoken and gentle. She comes across as a lovely person. Maybe she’s snarkier when there isn’t a camera in her face, who knows?

Well, I do know that even if there were a camera in my face, I’d be whiny and snarky. Why do you think Tom and I have never auditioned for The Amazing Race? Duh, because when it was over we’d either be divorced or one of us (me) would be dead due to justifiable homicide. The judge would declare it justifiable after watching tapes of my whining to Tom during the race. Seriously.

So as we watched Meryl work her kindness with Maks throughout the season and saw him soften up and become an actual likable partner to her, I said, “She’s so sweet. I should be nicer.”

I followed that up with, “Damn.”

Which Alyssa found highly amusing.

I am not setting good examples here.

But you know what? There is a difference between being nice and being kind. You can be kind in all things while still not being a pushover or a door mat.

I resolve to be kinder. Even when I’m telling the girls to turn off their damned tablets, I can do so with kindness rather than snark.

I admit that I’ll miss the snark a little though. Snark is funny.

But kindness is better. It’s who I want to be, the example I want to set for my girls. I definitely want them to be kinder to each other and I know that starts with me.

On this day, I will start a whole new experiment. I’m going to be kinder. I’m going to approach everything in my family life with kindness. I want to see if kindness is contagious. I want to see if my kindness seeps into Alyssa and Olivia and even Tom. I want to see if a gentler mom/wife can cultivate gentler children and a gentler father/husband.

You know the saying: If mom’s not happy, no one is happy.

Well, I’m hoping to prove that if mom is kind, everyone is kind.

I guess we’ll see.

Wednesday, May 21, 2014

The Talk

Alyssa’s fifth grade class is being separated by gender today. Upon separation, the two groups will make their ways to different locations where the female school nurse will show the girls a short video and then discuss said video while the boys will be shown a video presented by the male physical education teacher and a discussion will follow.

Alyssa was all eye-rolly about this entire situation. When I read that parents are invited to attend the discussions, she begged me not to go.

Ha, as if I would. I sat through that very discussion during my own fifth grade year. I don’t need to see/hear it again. Though admittedly it was fun to tease Alyssa with the possibility that I might show up and embarrass her by sitting in the back of the classroom while she and her friends ‘learn’ about puberty.

I air-quote the word learn because at this point, Alyssa and I have had many discussions about this very subject. She isn’t going into this meeting with the nurse uninformed, is what I’m saying.

Funny enough, Olivia asked just last Saturday about how a baby gets out of its mom’s tummy.

When I told her, she was delighted and disgusted all at once. Her eyes got huge and she giggled a little bit, as if thinking I might be kidding. When she realized I was serious, she got a quiet, digesting the information.

I’m sure there are those who think seven if too young for this sort of discussion but you know what? If she’s asking the question, I don’t feel like I should lie when I answer her. I try to keep the answers age-appropriate but sometimes, you can’t sugar-coat it.

I know she’ll have more questions as she gets older and I’ll try to answer them all as honestly, as simply as possible. I want them both to know they can come to me and I’ll never lie to them, never lead them astray.

And I’ll never embarrass them by going to the school during their “What’s Happening to My Body” presentation. That I can promise.

Tuesday, May 20, 2014

A Lil Unfriending

So my Facebook friend list is pretty big. Big for me, probably not big for other people. Whatever.

I have several lists to which I assign anyone who requests my ‘friendship.’ These lists include, 5p-, high school, Chicago, IU and, of course, family. There are others but since I don’t have Facebook up right this second and I’m lazy, I don’t remember them all.

Anyway, there are people on that list I will never meet face to face. There are people I met a hundred years ago (or, you know, back in high school) whom I will never see again.

Last week, I was reading through the updates on my Facebook home page. Alyssa was reading over my shoulder.

I came across an update in which the ‘friend’ wrote ‘lil’ at least three times. ‘Lil’ makes me just a little crazy. Why are those three extra letters so hard to type?

I mean, come on! I also hate prolly for probably and many other cheats when it comes to text-speak.

But for now, we’re talking about ‘lil.’ I grumbled a little about the laziness of people these days and how irritating that very update was. Then it hit me. I don’t have to see posts like that. I checked to see how I even knew this person. She was an acquaintance from high school. She hadn’t even been in my class, she’d either been a year or two ahead of me or behind me. We’d never actually been friends, even when we saw each other in the halls at school. We were, at best, nodding acquaintances.

I unfriended her. I didn’t know this woman. I will probably never see her again and reading ‘lil’ three times in a single status update was too much for my brain at that moment.

Alyssa expressed what was probably an unreasonable amount of glee at my unceremonious unfriending. She was impressed that my desire to not read lazy, inane status updates trumped my desire to have a high friend number (which wasn’t hard to do, I really don’t care how many ‘friends’ I have on Facebook, to the point that I rarely extend a friend request but will usually accept one if sent to me.)

But that lil was too much for me. It just was.

Alyssa told my mom about this little unfriending incident and my mom joked that she was going to write something lil in her status. I declared that I’d unfriend her too. But…I probably wouldn’t. I might try to be funny and type, “Unfriended.”

Of course, my attempts at funny often fall short. Just a lil, but a lil is often just enough.

Monday, May 19, 2014


The McD’s in our town has a play area that consists of tubes kids can climb and slides they come tumbling down. There is also a ‘room’ at the bottom of the tubes the kids can go into that probably once held a ball pit but now is just a place for them to look out and scream for the mom to look, look, look at them.

It took Alyssa until she was about four years old to be brave enough to climb into and up the tubes and come down the slides. She was shy kid and wasn’t much interested in other kids’ invitations to play.

But at about four she became a little more socially aware and got brave.

Olivia? Still doesn’t much care about other kids and definitely hasn’t felt strong or steady enough to climb the tubes or go down the slides. She loves slides at the park but those are usually open, she can see where she’s been and where she’s going. She can also see me, which is important because I am her home base, if you will.

Last weekend, Alyssa was invited to go to Jaxon’s t-ball game with my mom. Olivia and I met them at our local McD’s after the game.

After coercing all three kids to eat even a little of the food we’d purchased, Alyssa and Jaxon made their way into the play area.

At 5’4” Alyssa is on the verge of being too big to play in those structures but when Jaxon asked her to go with him, she went gamely.

She came back out after one trip down the slide, though and took her seat next to my mom.

Olivia did her usual jumping off the step that kids use to enter the play area. She climbs the two steps up and then hurls herself off the top step.

She looked up a few times when Jaxon screeched from the top for Gram to look at him.

I saw the longing in her eyes. She wanted to go up there. She wanted to want to go up there, actually. She wanted to try but she also wanted to know that it was okay to decide it was too scary or too hard.

I asked Alyssa if she’d help her sister. I reminded her, though, that if Olivia said she didn’t want to, Alyssa shouldn’t try to force her.

I suggested to Olivia that she try to climb up with Alyssa.

Just as A and O disappeared into the first tunnel, Jaxon came down the slide. I called him over. “Hey Buddy, Alyssa and Olivia are climbing up. Will you go up behind Olivia and help her be brave?”

He gladly agreed to do this. He loves being tough.

A few minutes later, Olivia called down to me from the first level of the tunnels. She was so excited. She pressed her face to the plastic window up there and waved frantically, wanting me to see that she’d made it.

Then, minutes after that, they called down from the very top. The look of pride on O’s face was priceless. She’d done it. She’d overcome her fears and climbed to the top of the tubes. She was going to come down a slide, one with a cover on it, one she couldn’t see the end of.

They ended up climbing up and sliding down that thing for another half hour, Olivia doing the climb by herself a few times.

I’ve always known she could do it. But she didn’t know. And until she did it, with a little help from her sister and her favorite cousin, she didn’t have the confidence to even try. Once she’d taken that first brave climb? There was no stopping her.

Friday, May 16, 2014

When I'm a Mom Like You

Olivia has all kinds of big plans. She’s going to be a singing cop who arrests bad men who dress up like women (we have definitely been letting her watch way too much Cops Reloaded.) On her days off, she is going to be a princess who helps ladies brush their hair. I kind of love that one.

Last weekend we were all outside planting new trees and flowers and just enjoying a brief glimpse of summer (so brief, today the temperatures aren’t even going to reach 50, the Midwest sucks this year.) and Olivia was trying avoid Orville, who was desperate to rub himself against her legs.

She announced, “When I’m a mom like you, I’m not going to have any animals living in my house either.”

Alyssa heard this and declared, “Well, when I’m a mom, I’m probably going to have two dogs and three cats living in my house.”

Olivia wrinkled her nose and said, “Then I won’t visit you at all.”

Alyssa rolled her eyes and said, “Promise?”

I wonder where they get their sarcasm…

I asked Alyssa if we were the only family among her friends who doesn’t have an animal in the house. She replied that maybe one or two of her friends didn’t have pets. But then she reminded me that Bomber, the betta fish lives in the house.

Olivia interjected, “Yeah, but he doesn’t jump on us or leave hair on our clothes.”

She’s a smart one, that Olivia.

I know there is a chance that Olivia won’t have children. I know there is a chance that she won’t be mentally capable of caring for children but I hold tight to the chance that she WILL be able to do those things. I cling to the possibility that she’ll be able to make every single one of her dreams come true, even those dreams of motherhood.

I’ve met some amazing people on Facebook, some of whom are adults with 5p- syndrome who didn’t even know they had the syndrome until they’d had a child of their own diagnosed with it. At that point, the parents are often tested as well and some of these people are diagnosed as adults.

So it’s possible that Olivia will be mom like me someday.

I refuse to be the one who tells her that’s not possible. I won’t be the one who puts limits on either of my girls. I’ll support their dreams and their goals and work to help them come true. And if there comes a time when we realize those dreams aren’t possible? I’ll be there to console them, to hug them, to dry their tears and help them find new dreams.

Thursday, May 15, 2014

I Made Her Cry...Again

“Mom, I’m hot,” Olivia called from the backseat of the car.

“Go ahead and take off your jacket if you can,” I replied as I merged onto the highway. We were on our way to a dentist appointment. It was just a consultation for some work O needs done.

About ten minutes later, I glanced in the rearview mirror and saw Olivia leaning way over in her car seat. She was reaching for something. She shouldn’t have been able to lean that far over. She rides in a five point harness car seat that prevents her from leaning too far.

I realized she’d taken her arms out of her straps to take of her jacket and hadn’t bothered to put the straps back on.

I told her, “Put your arms in your straps.”

She asked, “Why?”

“Because if you don’t and we’re in a wreck, you’d probably die.”

Dramatic? Maybe. But also true. We were flying down the highway at 70 miles per hour. If we crashed at that point, the straps between her legs would do nothing to stop her from hurtling into my seat and perhaps killing us both. A tragic though, yet but still true.

But perhaps I should have been a little gentler with my seven year old.

She asked, “What would happen if I died?”

“You’d go to heaven and I’d be here without you and I’d cry and cry and cry.”

She settled back with the straps of her car seat safely over her shoulders and I went back to concentrating on the road because, hey, let’s not test the strength of those straps even if they were probably placed.

About ten minutes later, with about ten minutes left to travel, I glanced back and saw what looked like Olivia trying to hold back tears.

“Baby, are you sad?” I asked.

Her lips turned down and she glanced away from me.

“Oh Sweetie,” I said, “I didn’t mean to make you sad. I just want you to be safe.”

A tear fell and she whispered, “I don’t want to be in heaven without you.”

I couldn’t stop the car and get out and console her. I had to keep going. So I talked to her. I explained that in heaven, she wouldn’t be sad because heaven is a beautiful place full of love and light and while I’d miss her down here, she’d be too busy playing and loving and being loved by Jesus that she’d be just fine.

It didn’t help. She picked up her jacket, put it to her face and sobbed.

I fought back my own tears. “Oh baby, I’m sorry,” I called out to her. “I don’t want you to be sad. I’m so sorry.”

She cried harder.

I assured her, “We’ll be there soon and I’ll hold you. It’s okay.”

She took in a deep, hiccupping breath. She put her jacket down and wiped her eyes. She asked me if I had a tissue. I didn’t but I did have a napkin I offered. She took it and wiped her nose.

We finally arrived at the dentist’s office and I parked. I pulled her out of her car seat and hugged her tight.

As we walked into the office, she declared, “I probably will be a hundred when I die, right?”

I just nodded at her.

“And by then, you’ll already be in heaven waiting for me, right?”

I nodded again. Then I told her, “And then we’ll all be together forever, always happy, always loving each other.”

She went directly to the play area at the dentist office and settled in with the magnetic board, no longer worrying about death and heaven and missing her mom.

But gosh did I feel like a jerk. Poor kid.

When she got home from school that afternoon, she demanded that I tell her dad and Lyssie how I’d made her cry on our way to the dentist.

Tuesday, May 13, 2014

Awards and Concerts and Escapes

We got a letter in the mail a couple of weeks ago letting us know that Alyssa would be receiving an award for art during a ‘visual arts’ program on May 12.

Last week, Alyssa announced that she was performing with the fifth grade band on Monday, May 12th.

“But you’re receiving an award for art that night,” I told her.

She shrugged and said, “The band is performing too.”

Huh. Okay then.

So we planned for an evening at the school, a chance to see Alyssa’s artistic ability rewarded and the chance to see if/how much the fifth grade band had improved since January.

Last night as I was scrambling to get the girls fed before we had to leave to be at the school by 6:30 (I hate that they insist the performers be at the school a full half hour before the concert begins. Why? They certainly don’t warm up for that long and if the kids have to be there that early, you know darned well the parents are there that early and just sitting around, waiting for something to happen.)

Ahem. Tandem.

Anyway, I was getting the girls fed and finding clothes for them both because after a day of school they definitely needed to change.

At 6:00, Alyssa told me that some people were bringing cookies for a reception after the concert.

I’d taken cookies for a reception after the kindergarten program a couple of months ago, so I asked Alyssa if she was supposed to maybe tell me about the cookie thing a week ago instead of fifteen minutes before we were leaving.

She gave me a sheepish look and got a couple of pieces of paper out of her backpack.

One was a request to bring cookies and the other was about the concert itself. Before dinner, Alyssa told me she didn’t have to wear the usual black pants with white shirt that is required for band concerts.

I picked a yellow shirt with black pants for her.

On the sheet she’d given me, it gave the dress code. Spring colors, no short skirts or tennis shoes.

Nailed that one.

The cookie one? Sorry but they were out of luck on that one.

I consoled myself that one out of two wasn’t bad.

We got to the school at 6:25. We found our seats and Olivia decided she better try to pee. She and I made the trek from the auditoria to the restroom and then back again. That burned off all of eight minutes.

My mom showed up and passed out some tic tacs, which took another three minutes.

Then Olivia started to fidget. She asked when it was going to start, she asked when she and Tom could escape, she thought maybe she should try to use the bathroom again. I vetoed that idea and so we waited.

Finally, the visual arts awards were handed out. Alyssa was so cute up there, all quiet and reserved. So different from home.

And now the concert begins. The junior high choir was first. They’re good singers and we love the choir director/music teacher but she picks really sucky songs.

Then the fourth grade played recorders. Ugh. That is a sound that even a parent can’t appreciate. Seriously. Alyssa still loves playing her recorder. She’s taught herself “Let It Go” on the recorder and while the fact that she can actually play that song is amazing and wonderful and I’m full of maternal pride and joy, the sound coming from the recorder makes me want to stab myself in the ear with a screw driver.

After six songs played with recorders (damn I left my screw driver at home), it was time for the fifth grade band.

They were definitely better than they were in January. They looked better too, more confident, more aware of their instruments. Yes, I’m a band geek, why do you ask?

The instant the fifth grade band finished their last song, Olivia stood up and took Tom’s hand, declaring it was time for them to make their mistake. My mom and I laughed as they left the room quickly enough that it looked like they feared someone might come along and try to make them stay for the sixth grade band and even the junior high band.

We did stay for those because it seemed like the right thing to do. Alyssa came out and sat with us. She’s a great girl that one.

I love that she’s getting this experience. I love that she’s enjoying music and exploring the world of art, both visual and musical.

I do think I’m going to go home and hide all three of the recorders we have laying around the house, though. Those things were instruments of evil.

Monday, May 12, 2014

Happy Coincidence

About nineteen Mother’s Day ago, I bought my mom a mother’s ring. It has my birthstone as well as the stones that represent my brothers.

When the girls and I went to visit my mom this past Saturday to give her Mother’s Day gifts, she ushered us back to her bedroom where she pulled that ring out of her jewelry box.

She asked me to try it on. She said it hadn’t fit her in years and wondered if it would fit me.

It did. It fit perfectly.

She asked me if I wanted it. She didn’t think it would ever fit her again and, she pointed out, the stones were just right for me.

I looked down at the ring on my finger and realized she was right.

Alyssa was born in the same month as my brother Mitch. Olivia was born in the same month I was. My mom and my brother Jason shared a birth month.

This ring, which was my mom’s mother’s ring, is now a ring that represents three generations of women in our family. My mom, me and my girls.

I love this happy coincidence.

Friday, May 9, 2014

The Big Sister

I’ve worried about Alyssa since before that girl was born. Of course, in the beginning it was typical mom stuff, was I taking good enough care of myself during pregnancy? Would my gestational diabetes affect her?

Once she was born, it just intensified. She couldn’t nurse and so I felt like a failure as a mother. She ended up with thrush, which ruined my life.

I was a bit of a drama queen in those early months.

Then we decided to have another baby. I was so excited to make Alyssa a big sister. I assured her over and over that I had two arms, and so, so much love in my heart. She’d always be my first baby.

When Olivia was born and spent eleven days in the NICU, I felt torn in so many directions, but most especially between my two girls. They both needed me so much and I couldn’t be with them both all the time.

Olivia came home and disrupted the entire household. I felt horrible for poor little Alyssa, who was not quite four years old when her sister was born. She’d had no idea what was coming when we told her she was going to be a big sister but the reality was even worse than I’d imagined. I worried so much that Alyssa’s needs were being pushed aside was we searched for answers to make Olivia comfortable, happy, healthy.

Obviously, Alyssa’s needs were met, she was fed, bathed, clothes and enrolled in school. I still read to her each night and she slept in my bed. But I often worried that she felt left out, ignored. She was always good about playing by herself, even before Olivia was born. It was easy to let her go about her day with little interaction while I dealt with therapies and medicine (O was on Zantac for reflux until she was a year old) and trying to get Olivia to eat as much as possible to get her to gain weight.

These days, Alyssa and I have more time together than we did back then. We really talk to each other. I feel like the past year or so has given us an even better connection than ever before. After Olivia’s asleep, Alyssa and I sit on the couch and either talk, watch television, or just laugh about silly things that went on in our days.

I used to worry about how having a sister with special needs would affect Alyssa. But Alyssa doesn’t see Olivia as having special needs. She thinks we all baby Olivia too much but special needs? Alyssa’s pretty sure that’s not the case.

I love that about her. I love that she looks at her little sister and sees just that. She doesn’t see a syndrome or therapies or someone who is a burden on society. She just sees Olivia, a little sister who knows just which buttons to push to make her big sister crazy.

I think that Lyssie girl is going to be just fine.

Thursday, May 8, 2014

The Trouble with Travel

My mom is going to my aunt’s house this coming weekend to spend time with her mother on Mother’s Day. Grandma Dorothy lives in Battle Creek, MI with my aunt Lorry.

That’s a little over an hour drive from our area.

There are quite a few people going to Lorry’s house this weekend. My mom mentioned yesterday the girls and I were totally invited if we wanted to go.

I didn’t even have to think about it. We’re not going.

See, my mom and her sisters (and some of their kids and husbands) will be spending Saturday night at Lorry’s house.

If I were to drive the girls all the way up there and spend the night, guess who would have to get up with their own children on Sunday. That’s right, me! And I don’t wanna. Tom is very much a morning person, as are the girls, so he always comes up and gets the girls at around 6:30 or 7:00 every Sunday morning so I can sleep in.

If the girls and I travel and leave Tom at home, that leaves me to be the one who has to take care of my children on Sunday morning because obviously, I’m not going to ask my mother to get up early and care for my children on Mother’s day, it still, even eleven years into this mom thing, feels more like her day than mine.

I like to sleep. Everyone who has read even three posts here knows that. I usually feel like I don’t get nearly enough. Okay, maybe my biggest complaint isn’t so much the amount of sleep I get as it is the amount of UNINTERRUPTED sleep I don’t get.

This week Olivia has woken me up at least once every single night. It’s beyond frustrating to the point of irritating. I’m not the nicest mommy at 1:00 in the morning, let me tell you.

All the words, blah blah blah, to say that I wished my mom happy travels and a wonderful Mother’s day and thanks, but no thanks. I’ll be staying home with my daughters and my lovely, morning-person husband who graciously lets me sleep in, especially on Mother’s Day.

Obviously, the girls and I will go see my mom on Saturday before she leaves for Battle Creek to give her gifts and tell her she’s the best mom/gram ever.

Wednesday, May 7, 2014

Still Olivia

I’m wearing striped socks all week long to honor Olivia and continue to share how Cri du Chat has affected our lives. (Oh, who am I kidding? I pretty much always wear striped socks. But this week, it's for Cri du Chat awareness week. Yeah, that's why I'm wearing them.)

I’ve said before that I’m glad we got Olivia’s diagnosis when she was two years old. I know others are grateful to get a diagnosis at birth or even before because they can start with therapies and interventions.

This is not the wrong reaction. My reaction isn’t wrong either. We all have our own reasons for feeling the way we do.

I am glad we got O’s diagnosis later because it gave me a chance to know her, my sweet girl, before I knew anything about her diagnosis. I never had to grieve the child I thought I was having because she was right there.

When Olivia was born nine days past her due date and needed to spend eleven days in the NICU, I learned pretty fast that she was going to be unpredictable. She fought her swaddle even at two days old. She cried her sad little cat cry at the drop of a hat. I could be in the cafeteria for a small break from the monotony of sitting by my baby’s bed and another NICU parent would see me and say, “I was just up there, your baby was crying.”

Everyone in that place knew her cry.

But it didn’t signal anything to any of us, not me and my husband, not the doctors, nurses, therapists already in to see her. She just had a unique (to us) cry. My mom and I even mused about what her voice might sound like in a few years.

Then she came home and she kept crying. She cried and cried and cried for months until we finally got her on medication for reflux.

During the few and far between moments when she wasn’t crying, I started researching things like, “early signs of autism” and “what if three month old isn’t making eye contact?”

I knew something was up with this baby girl but I didn’t have any answers yet. She was small, she was angry, she was in pain. She rolled early, at about six weeks. But by six months, she still wasn’t holding her head steady.

When she was nine months old, I asked for an MRI because I feared she had cerebral palsy. She seemed to be weak on the right side. She was finally making eye contact at that point but she wasn’t sitting independently and there was absolutely no sign of her thinking about crawling.

Her MRI came back fine. Her brain was not damaged in any way.

At that point, I’d Googled her symptoms and Cri du Chat came up several times. I suggested it to her pediatrician and to the chiropractor we were taking her to, just to get a ‘professional’ opinion on the idea that she might have this.

They both declared her ‘too pretty.’ I think this is actually kind of insulting now. All kids with 5p- syndrome are beautiful. So O doesn’t have the typical features, so what. That doesn’t make her prettier than any other child with this syndrome.

By now, we were treating her symptoms even without having a diagnosis. She was in physical therapy, developmental therapy, speech therapy and occupational therapy. Each therapist came to our house weekly. We were so lucky to get amazing therapists on the first shot.

And Olivia continued to be sweet (now that she wasn’t in constant pain and screaming for hours on end) and she grew, she was thriving. She was making us fall in love with her each and every day.

So when we finally got her diagnosis, it didn’t really matter. She was still Olivia, still our silly, sweet, funny, sometimes extremely loud but always loving, cuddly little girl.

I know parents sometimes mourn the child they thought they were having, especially when they get their diagnosis early on. I get that. I don’t begrudge them their grief.

I just feel lucky that I didn’t ever experience it because she’s always just been Olivia. And now we know why she’s always felt extra special to us. She’s doing what most of us do with less DNA. If you ask me, that’s a pretty amazing super power.

Tuesday, May 6, 2014

A Parenting Experiment

Last weekend, the girls and I were doing our usual library, lunch, grocery thing with a run to Home Depot thrown in for variety.

By the time we got to the grocery store, we were all tired and ready to be done and just go home.

But we still had to buy those darned groceries. So we traipsed through the store, hitting the produce section first, getting behind people who felt the need to squeeze every damned orange before selecting the only one they deemed perfectly firm. Ugh.

We’d managed to put blue berries, strawberries and mushrooms in the cart when Olivia announced, “I have to pee!”

When she announces this, she says it in such a tone that suggests that if we don’t get her to a toilet in the next five seconds, there will be a mess and it won’t be her fault. In the past two years or so, she’s been able to hold it for longer than that, but she seems to think that the moment she declares she needs to go, we need to make it possible for her to go right that second.

So I sighed and made my way from the produce department to the bathroom, which, of course, was all the way across the store. I was irritated that my seven year old needed to pee when I wanted to pick out five cucumbers and a couple of heads of lettuce. Ugh! The injustice of it all.

Obviously, I knew this reaction was unreasonable. We’d just come from lunch, of course one of us needed to pee. But knowing that didn’t actually ease the tension in my shoulders as I pushed the cart or take away my fierce desire to growl at the lady in front of us who was moseying her way through the store. I wanted her to get out of my freaking way!

While in the restroom, I decided to stop being such a grouch. I know, so simple, right?

Except, I took it a little further, I started speaking very softly and patiently to my children. Even though I didn’t feel soft and patient, I spoke to them as if I were the most saintly mother in the world.

It drove them both nuts to hear my talk like that. But it also lowered my blood pressure. I felt my shoulders relax. My anger and impatience dissipated. When Alyssa announced she had to pee fifteen minutes after we’d visited the restroom for Olivia, I didn’t sigh, I didn’t have to grind my teeth to stop myself from growling at her (mother of the flipping year, right?) I just turned the cart and headed back toward the restrooms, asking Olivia if she needed to go again since we were heading that way.

Of course, it helped that the sound of my voice irritated Alyssa to no end, which amused me as much as my own physical results from the experiment.

I’ve tried this a few more times this week, just to see if it continues to work. And what do you know? It does. It also still annoys both the girls, which is a bonus in itself.

It was a little experiment of faking it until you make it. I told Alyssa that, actually. I told her I was faking being patient and calm and it was working, I WAS calm and patient. I suggested she pretend that my voice didn’t annoy her so much but she wasn’t interested in being a participant in my experiment. She was too busy trying to put me in a headlock to stop me from being a calm, loving, patient mother. Some people are just impossible to please.

Monday, May 5, 2014

A Few Facts About Cri du Chat (aka 5p- Syndrome)

Okay, so I’m not necessarily the expert on this syndrome. I’m just one mom with one daughter with Cri du Chat.

But there are a few facts out there that we’re trying to spread.

There are about 1 in 50,000 babies born with 5p- syndrome each year. These babies are small for their gestational age. They often have breathing problems at birth.

Olivia was born nine days overdue but showed symptoms of a collapsed lung. I didn’t know it at the time but she turned gray almost immediately after her cord was cut. She had three nurses surrounding her, trying to get her to breathe. I couldn’t see much because the nurses were protecting me from the view but I did see her retracting as she struggled to breathe.

The information available concerning Cri du Chat is very outdated. Pediatricians and geneticists are giving parents terrifying statics that aren’t based on recent studies.

We had an amazing developmental pediatrician who finally gave us O’s diagnosis. This doctor told us not to go home and Google the syndrome because the information was so outdated. She said it was based on information gathered over forty years ago. She explained that the information was based on patients who’d been institutionalized either at birth or soon after. She reminded us that every child does better, shows more progress and learns more when they are in a loving home with their parents. She told us to take Olivia home and let her show us what she can do.

The old information says that individuals with 5p- syndrome will never walk, they will never talk and they will likely live their lives in a vegetative state.

By the time we got Olivia’s diagnosis, she’d already proven this ‘fact’ wrong. She wasn’t walking yet, she walked two months after we received her diagnosis. But she was crawling, she was sitting up, she was laughing and she was thriving. She started talking right around her third birthday, which was six months after she started walking.

Obviously, there are varying levels of severity with this syndrome. There are definitely some kids who will never walk or talk but for doctors, medical professionals to tell new parents that their baby will absolutely never, ever do these things is so unfair. There is no way to tell by looking at a new born baby who has just been diagnosed with Cri du Chat whether or not this child will walk or talk. All we can do is give our children the therapies, the love, the chance to reach their fullest potential.

Today we’re wearing striped socks to honor Olivia and all her brothers and sisters with 5p- syndrome. For parents of children with this syndrome, every day is Cri du Chat awareness day. But we’ve set aside this week to remind the world to look beyond the high pitched voices, the awkward gait, the wheel chair and even the feeding tubes and see beautiful, strong people who have so much to offer this world.

Friday, May 2, 2014

Cri du Chat Awareness Week

Next week, May 5 – May 9 is Cri du Chat awareness week. Cri du Chat syndrome, also known at 5p- syndrome occurs when a person is born missing part of the short arm of their fifth chromosome.

Olivia has 5p- syndrome. We didn’t get her diagnosis until she was two years and four months old. Even though we didn’t have a diagnosis for her, she started therapies when she was a year old to address global delays.

Most children with Cri du Chat have delays in both gross motor skills and fine motor skills. Sometimes, they have difficulty eating. They are usually small for their gestational age. Olivia weight 5lbs, 2oz. She was born nine days past her due date.

The name Cri du Chat comes from the cat cry that most babies with this syndrome have at birth. Olivia did have the cat cry but none of her doctors/nurses/therapists considered the possibility that she had 5p- syndrome. Olivia doesn’t have the typical features of a child with this syndrome.

But she does have low muscle tone, she did suffer from severe reflux as an infant. She was delayed in walking, talking, and her fine motor skills were delayed as well.

We’re asking that people spread the word on this rare syndrome. Supporter are asked to wear striped socked next week, one pulled up and the other down to represent the missing short arm of the fifth chromosome.

We want people to understand this syndrome, to see our children as we do. We think they’re amazing, beautiful, so incredibly strong.

I always say that Olivia does most of what we all do but with less DNA. That amazes me every single day. I feel incredibly lucky to be her mother, to watch her show the world how awesome she truly is.

Thursday, May 1, 2014

All Through The Night

Last night Olivia didn’t wake me up a single time.

This shouldn’t be news, I know. She’s seven.

But the week before, will the fever and the coughing and the sniffles, she woke up a lot and called to me. And because she was sick, I went to her. I even, gasp, let her sleep with me two nights last week because of either fever or ear pain. It was either pull her into my bed and let us both get just a little crappy sleep or get not sleep at all. Anyone who knows me at all knows which option I’ll choose every single time.

So this week Olivia’s been feeling ever so much better. Her sleep should have shown that, right?

No. No, that is not right. See, a week of having mommy at her beck and call made Olivia think that habit should continue, thank you very much.

So when she woke me up three times on Monday to either rub her back, cover her back up or help her take off her pull up because it was soaked at 2am, I did it. But on Tuesday evening I gently suggested to her that since she’s feeling better, perhaps she could just roll over and go back to sleep should she wake up in the night.

She nodded her agreement and then, between 11:30pm and 2:00am, she woke me up four times.

The first was to rub her back. The second was because I’d stopped rubbing her back. The third was because, well, I don’t even remember, but it was irritating.

The fourth time she woke me up, I didn’t get out of my bed. When she called to me, I said, “No. It’s night time, go back to sleep.”

“Mom?” she called.

“No,” I replied. “You’re alright, go back to sleep.”

“But Mom…” she tried.

“No, Livie,” I called back. “Go back to sleep.”

We went back and forth like this for a couple of minutes before she sighed and went back to sleep. I hate that I feel ‘win’ in situations like this. There is no win, just a chance for us both to be some much needed sleep.

Wednesday night started out with my having high hopes for the night. She was feeling better still and had been able to spend a bit of time outside that day which often leads to good sleep.

She woke up at a little after midnight with a kiss to my cheek. Instead of calling out to me, she’d come to my bed. I got out of bed and took her back to her own bed. I helped her climb in next to Lyssie and pulled the blanket up over her, rubbed her back for a few seconds, whispered that I was going to go use the bathroom and I’d be right back. The last time I ‘sleep trained’ her, this was the method I used. I always detoured from the bathroom back to my own bed instead of going back to her.

That night? I wasn’t even finished peeing when her little shadow scared me out of my skin.

I called, “What are you doing, Liv?”

She whispered, “Are you going to come back to me when you’re done?”

I sighed. I said, “Sweetie, Mommy’s really tired. It’s not really fair of you to ask me to be awake and rub your back when it’s the middle of the night. You need to go back to sleep.”

She sighed in resignation and let me tuck her back into bed. I skipped the backrub this time, just kissed her told her it was night time and to go back to sleep. She didn’t wake up again that night.

Last night? She slept all night long. And get this, so did I. How awesome is that?

Yes, you can sleep train a seven year old. Just beware that you might have to do it over and over and over again.

The eleven year old? She sleeps like a champ, never waking me unless she’s really, truly, pukey sick. Some things really do get easier as they get older (though, admittedly, there are other things, bigger things, that get so much harder.)