Friday, May 31, 2013


One Saturday morning a few weeks ago, Olivia and I were out for breakfast at our local Bob Evans. She was enjoying her French toast and I was digging into an omelet.

A family sat at the table behind us. There was a mom, a dad and a little boy. Because they were behind us, I couldn’t see how old the child was but he sounded young. He was very, very unhappy. He cried pretty much the entire time we were there. Until, that is, he finally got some toast.

Poor little guy was hungry.

O and I left before the family behind us did. When we got up, I saw that the boy was actually about three years old. I was surprised by his age. His cries had sounded younger. And the fact that both of his parents had tried unsuccessfully to soothe him and reason with him as they waited for their food.

We’ve been really lucky as far as tantrums go in our family.

I see on the Facebook groups I belong to that support parents of kids with 5p- syndrome that a lot of parents out there deal with moodiness and tantrums from their affected kids.

Olivia has never really thrown tantrums. She accepts ‘no’ pretty well. She might say, “Please” over and over again in response to an answer she doesn’t want to hear but that’s the extent of it.

I do realize how lucky we are that she’s a verbal as she is. She can tell us what she needs, ask us for the things she wants, make her thoughts and desires known. I imagine that less verbal children probably get so, so frustrated when their parents/teachers/caregivers can’t understand them.

Please note that I realize that none of the credit for having two non-tantrummy children goes to me. It’s just who they are, they’re pretty laid back, easy going kids. And for that I’m ever so grateful.

And you know that since I just wrote this up, one or both of my girls is going to throw the tantrum to end all tantrums this weekend. That’s just how it goes.

Thursday, May 30, 2013

Warming My Nerdy Little Heart

After seeing the latest Star Trek movie, Alyssa asked me if I had any DVDs of the original series. See, she’d seen the first of the ‘new’ Star Trek movies, so she’d seen the original Spock as played by Leonard Nimoy but she had no idea who William Shatner was and she wondered how he compared to the dreamy Chris Pine.

Ahh, my sweet little nerdy girl just makes this nerdy mama so happy.

I was quick to remedy her lack of knowledge of the wonder that is William Shatner in the roll of Captain James T. Kirk.

Because OF COURSE I have DVDs of Star Trek: TOS (The Original Series for those who don’t speak nerd.)

So the other night I popped in a DVD and started it up.

The first scene had Kirk, Dr. McCoy, Mr. Scott and Lt. Uhura on the surface of a planet, speaking to the natives of this planet. I turned to Alyssa and said, “You can tell these guys are aliens because they have a blue dot on their foreheads.”

She was highly amused. I reminded her that this episode had originally aired in 1967, which was before I was even born. To her, that means it was made in the ‘olden days.’ Ha!

Anyway, I said that because it was made so very, very long ago, it was going to come across as poorly made in her modern eyes. The special effects back in those days were obviously not up to her 21st century standards.

She was more than willing to overlook the obvious special effects issues and even the poorly done stunts to just enjoy the episode for what it was. Which was pure entertainment. Though she did mentioned twice that the scenes of the ship just flying through space were pretty fake looking.

I just replied with, “Duh.”

At one point, she asked me if I thought Shatner’s Kirk was as cute as Pine’s version of Kirk. I pointed out that even in 1967 I’m pretty sure that Shatner was older than Pine is now as he portrays a younger, less experienced Kirk.

She got that but still wanted an answer. I admitted that Chris Pine takes the prize in dreaminess as far as I’m concerned.

Alyssa nodded her agreement but then, in a moment that will forever warm my nerdy little heart, admitted, nodding at the screen where Shatner was being his broody, heroic best, “But this guy is still pretty cute.”

I just love nerdy ten year olds. Especially when they’re mine.

Better still? Both A and O went to sleep wearing Star Trek themed pajamas. I really do love those little nerds.

Wait, what? Your kids don’t have Star Trek themes pajamas? Why ever not?

Wednesday, May 29, 2013


In fourth grade at the girls’ school, the kids are introduced to music via the recorder. You know what I mean, that plastic ‘musical’ instrument that makes a tinny sort of sound and makes for ‘fun’ fourth grade concerts.


Alyssa loved it. She loved the music, the practicing, the being part of a group doing the same thing and making the same horrific noise.

The last week of school, the kids were invited to the band room at school and offered the chance to try out some of the instruments. See, in fifth grade, they get to move on from the recorder to actual instruments played in actual bands.

Alyssa was pulled toward the flute.

Something you might know about me…I played the flute for eight years, from fifth grade through my senior year.

Yes. Yes, I was a band geek. Why is no one surprised?

But, as I explained to Alyssa as she bounced in the backseat of the car, anxious to get home and find my old flute (what? Of course I still have it!) I wasn’t a very good flute player. In fact, I was the worst in the band.

It took me six weeks just to figure out how to make the sound on the mouth piece. I never once challenged the players in chairs better than mine. Duh, I knew I wasn’t good enough to actually take their chair.

I just loved being in the band. I loved playing the music, even if I didn’t do it all that well.

As I pulled out that old flute and put it together for Alyssa I told her about how, in my sophomore year of high school, I was asked by our band director to be the drum major of the marching band. No, not the majorette, I didn’t carry a stupid baton. I was the drum major. I wore a whistle, I lead the band. I told them when the march, when to turn, when to mark time and even when to play music. I was in charge.

And it was awesome! I loved that part of being in the band.

I did tease my band director, though, and ask him if the reason he was offering the position to me was because I was the worst actual musician and no one would miss my flute playing. He assured me that this was not the case that, in fact, the reason he’d asked me to do it was because I could march with my feet straight in front of me and not pointed out like a duck. Well…okay then.

I also loved being in the pep band at basketball games. That was great fun even though I didn’t actually even like watching basketball. Being part of the group was what made being in the band so awesome.

We got to take fun trips, we played in the pit band for the school musicals, we went to competitions (get this, I was once in a flute quintet. We played The Entertainer. We got a first, which was top prize, from the judges. Yes, I played the third part. Someone has to play the third part. Not everyone gets to play the first and that was okay with me. It was fun.)

I want all of this for Alyssa. I want her to enjoy being part of a group, making friends in all cliques, learning to read music and feeling like she’s actually translating it for the audience.

It took her all of ten minutes to be tooting along with just the mouth piece of the flute. A half hour later, she had it put together and was making ‘music.’

She’s definitely got more of a natural aptitude for music than I do and I’m glad for her. I would love for the flute and music to come easily to her.

But I am proof that you don’t actually have to be a natural born musician to enjoy being in the band.

Tuesday, May 28, 2013


When we last left off, Olivia’s developmental pediatrician was concerned that Olivia has selective mutism.

And I’m pretty sure she’s right.

And yet…yesterday, Olivia followed me from room to room to room, talking and talking and talking. She told me every single thought that came into her head. It was lovely, except, well, six year olds have pretty boring thoughts.

She was having an imaginary day. She kept going on dates, which is cute, until it’s not anymore.

She told me that her boyfriend was picking her up and taking her out to a movie. Then she told me she had a new car and each new thing she described, she insisted that I actually LOOK at the imaginary thing and describe it for her.

But I can’t actually see what she’s imagining and so I was always so very wrong in my descriptions. After the fourth wrong answer, I suggested she describe her imaginary things to me. Which was still boring but not nearly as irritating as being wrong as I tried to read her mind.

I realize that ‘selective’ is the descriptive word in O’s most recent diagnosis. I know that she talks to me because, duh, I’m her favorite person in the whole wide world and because of this, her mutism doesn’t extend to me.

She’s comfortable with me, she loves me and I’m so, so flipping luck that she can and does talk to me. I really do know all of this. And I’m grateful for it. So, so grateful.

But you guys, the imaginary stories of six year olds, are not best-selling material. And after listening and replying to her narration for five solid hours, I was ready for a little bit of muting.

Not that it happened. She didn’t shut up until she fell asleep last night. I think she might have fallen asleep mid-sentence.

Friday, May 24, 2013

On the Last Day of School

This morning Alyssa woke up to shower before school and whispered to me, “Let’s not tell Livie that today is the last day of school.”

I asked her why.

She wanted Olivia to be surprised when they walked into Gram’s house this afternoon when Alyssa announced that it was summer vacation.

I smiled and said that was a cute idea but then reminded Alyssa that we’ve been talking about the last day of school all week. Olivia kind of already knows that today is the last day of school.

Alyssa suggested that maybe Olivia forgot.

I went with it. Who am I to ruin a potential surprise? (Alas, poor Alyssa, Olivia absolutely did not forget that today is the last day of school.)

So yes, today is the last day Alyssa will be a fourth grader. She’s had a great year. She missed two spelling words all year. She won three spelling bees. She learned to play music on the recorder and is interested in taking up the flute next year. As one who played the flute for eight years, I could not be more excited for her.

Friendships that started last year have solidified this year while others that seemed really solid have drifted, changed. And that’s all good, Alyssa is finding herself, learning who she needs by her side, who she wants there when things are at their best or, heaven forbid, at their worst.

I watched her write something the other day and marveled at how much her handwriting improved from August to now. Last August, at the beginning of fourth grade, her handwriting was barely legible. Now? It’s lovely, all loopy and highly legible.

Olivia has asked all week if she’s going to be in kindergarten tomorrow. Each time she asked the question I reminded her that she had a few more days as a kinderkid but then, after a nice long summer vacation, she’d be a kindergartner at last. She wants that so much.

She’s come a long way in this school year too. She actually talked to her teacher this year. Her peers? Not so much but hey, we’re taking whatever improvements we can get. Talking to her teacher is most definitely an improvement. Sure, those conversations were whispered on O’s part but still, communication was happening, no matter how quietly.

She recognizes all her letters, counts until she’s bored, can write her name fairly well and is cutting better than ever. She hops on one foot, runs after her sister screaming at the top of her lungs and flings herself onto the floor in wild, uninhibited somersaults.

We’re all ready for this summer break that is looming but I can’t help but marvel at the changes this year brought and wonder about the year that is ahead of us.

Thursday, May 23, 2013

Back Fat

So…I’m becoming more comfortable with my current body size. I’m learning that I don’t have to hate my arms as I have since, oh 1995.

No, I’m not thin yet but being 44 pounds down from my highest weight ever, I can appreciate being in my own skin these days.

On Sunday, I put on a shirt I’d worn a lot last summer and upon looking in the mirror I realized that it was really, seriously too big. And…I’m ashamed to admit, it had two tiny holes near the hem where my belt buckle had rubbed all last summer.

I took it off and threw it away.

Then, inspired by my own ability to acknowledge when something was too big, I tried on a shirt I haven’t been able to wear in two years. It was always much too small.

I checked myself in the mirror. It was…okay. A bit lower cut than I usually wear, a fact that Olivia noticed the moment I walked into the room she occupied, but really, not bad at all.

I went downstairs and asked Tom if he thought my shirt was too tight.

He eyed me appreciatively and said, “No, it shows off all your hard work.”

He’s a good one, that guy.

Later, as I headed upstairs to grab my purse before Alyssa and I went to the movie, she mentioned that she could see my bra through my shirt.

I asked if she could actually see the bra or just the outline of the bra.

She admitted that it was just the outline.

Tom was near us and he agreed it was just the outline.

I asked, “Is there back fat?”

Tom snorted and Alyssa looked confused.

I asked again, “Are there rolls of fat above or below the outline of my bra?”

Tom told me there were no rolls, no evidence of back fat at all.

Alyssa laughed as I sashayed up the stairs, so very excited by the fact that I no longer have back fat to display to the world.

Wednesday, May 22, 2013

Nerd Alert

Alyssa and I went to see a movie this past weekend. We’d been talking about since we saw the preview for this movie a few months ago before watching Oz: The Great and Powerful.

When I saw the release date of the movie we ended up seeing, I mentioned that it was the week after Mother’s Day. Tom assured me that somehow, someway, I’d get to see this movie and someone would go with me.

See, I saw the first movie of this sort on Mother’s Day a few years ago, alone.

Now, don’t feel sorry for me. I don’t actually mind going to the movies by myself. But I will admit that it was way more fun with Alyssa this time.

We saw Star Trek: Into Darkness.

And it was awesome.

Alyssa basically went with me because I asked her to, not necessarily because she actually wanted to see a Star Trek movie.

We saw the movie on Sunday and so Saturday night, I put in my DVD of the first movie in which Chris Pine plays the awesome, amazing Captain James Tiberius Kirk. Alyssa almost stayed awake for the whole thing. Almost.

I was just happy she stayed awake long enough to see Leonard Nimoy’s Spock perform a Vulcan mind-meld on Kirk. So much fun!!

We only had to go to the bathroom twice during the movie on Sunday but get this…Alyssa stayed awake.

Granted, the theater was freezing and she did eat an entire medium popcorn and drink all of a medium Dr. Pepper, so there is that.

But as we left after the movie was over? She admitted to me, “I think I like Star Trek.”

Yes, she made this mother’s nerdy heart so proud with that nerdy little confession.

I’m so excited to have another Star Trek fan in the family.

Don’t tell Tom I told anyone this but he said he’d like to see the movie when it comes out on DVD. Good think, since I had every intention of buying it even before he admitted to that. And I’d have probably popped it in one evening after he’d settled in, knowing he wouldn’t bother to get up and go to the other room.

I just may manage to turn our entire household into fans before all is said and done.

Tuesday, May 21, 2013

Behaviorally Complex

Yesterday my mom and I made the drive to Indianapolis (the far north side, thank goodness) to take Olivia to see her developmental pediatrician.

This is the doctor who diagnosed Olivia with 5p- syndrome when she (Olivia, not the doctor) was just over two years old.

I love this doctor. She’s the one who listened to me, who looked at my little girl and didn’t tell me to give her time, that she’d catch up, that she was fine and I was being paranoid. She looked at Olivia that day and said, “You’re right, there is something wrong with this baby.”

Yesterday was a great appointment. Dr. S was very thorough. She listened to my descriptions of Olivia’s behavior, her interactions with her peers and teacher and she took amazing notes with wonderful suggestions for how we can help Olivia reach even greater goals.

One thing she mentioned that I know my dear friend Lauren will not be one bit surprised about is Selective Mutism. Lauren’s been talking about this for years whenever I mentioned O’s interactions with peers and teachers/therapists.

I should have listened to her more carefully.

Dr. S wants us to find a psychologist with experience diagnosing and treating selective mutism. This will be a good thing. Having this diagnosis for Olivia will take a lot of pressure off her at school. I feel like her teachers can see that she’s capable of more and they want to push her but if they can understand that she’s not just being stubborn and that this isn’t something she can control. With this diagnosis we can start to work on the mutism and get her through it.

So…that’s a start.

She also wants us to keep an eye on her during her first semester of kindergarten and see if attention becomes an issue. She will have many fifteen minute ‘centers’ next year and I need to know from her teachers if fifteen minutes seems too long for her to concentrate. If this is the case, we’ll take her back down to Riley for a full day evaluation and see if she needs anymore therapy beyond what she gets next fall in school.

Dr. S said the psychologist can also help us work with O’s OCD tendancies.

She’d like us to seek out OT and ST for the summer and maybe find a social skills group to attend.

She recommended that I see if I can find out the names of some of the kids in O’s class next year and set up one on one play dates with a few so she can start to get to know them better before the school year. This would be great if any of them were already in her class this year, giving her the chance to actually already know them even a little.

She also recommended I get a list of some of the earliest sight words O will need to learn next year and get started with her on those.

She checked Olivia’s back for early signs of scoliosis and found that while O’s spine looks straight, her shoulder blades are slightly asymmetrical. Dr. S ordered a baseline x-ray done of O’s back of we can keep track of her as she grows and catch this before it becomes a major issue.

The saddest part of the appointment came when Dr. S told us that she’s relocating to Wisconsin this fall. She’s referring us to one of her colleagues who specializes in behavioral issues because Olivia is not really a medically complex kid, but she is a behaviorally complex one.

I’m so grateful that we got to meet with Dr. S one more time. She saved my sanity way back when and she’s always come across like she really, truly cares about Olivia. She was so thorough yesterday and I feel like she gave the absolute best care to my child that I could ask. We’ll miss her even though I’m sure Dr. L, the one she’s referring us to will be just as amazing. But yes, he has some pretty big shoes to fill.

Thursday, May 16, 2013

And Then She Slept

Last night was rough. Olivia has been steadily pushing back the time she falls to sleep and last night was the worst yet.

I hate taking her to bed while she’s still awake because it means more work for me. I just want her to fall asleep easily on my lap so I can carry her to bed and be done with the bedtime routine and go to sleep myself.

But 9:00pm rolled around and there she was, wide awake.


I couldn’t wait any longer. Alyssa needed to be in bed too and so I heaved a giant sigh, got to my feet and informed Olivia quite gruffly, “Tomorrow night, you WILL fall asleep before nine o’clock.”

And…she burst into tears.

Damn. I hate it when I make her cry. I hate myself so much when this happens.

And yet I was in such a spiral of frustration, tiredness, annoyance that I grabbed her blanket, picked her up and carried her to bed. She cried against my chest and I…didn’t do much more than carry her. I wasn’t rough but I wasn’t nearly as comforting as I could have been.

I deposited her on the bed, turned on the fan, and made sure the alarms were set. Olivia sat on the bed, sniffling.

I informed her, “I am going to put on my pajamas.”

To her credit, she didn’t follow me to the bathroom but she did get out of bed and wait in the darkened room.

When I came out of the bathroom, she scampered back to the bed, sniffling just a little.

I went to Alyssa’s side of the bed first, hugged her and apologized for being so grouchy.

She kissed me and told me it was okay.

But it wasn’t. It wasn’t okay to be mean and stompy and grouchy.

I went to O’s side of the bed, tucked her in, kissed her tear-stained cheeks and told her how sorry I was for making her cry.

She just looked at me in the dark, waiting for something I wasn’t sure I could give at that moment.

I brushed her hair back from her face. I kissed her again and promised her that I’d try to do better in the future. I’d try not to be so grouchy and I never wanted to make her cry. I rubbed her arm the way she likes me to do so. I kissed her again and told her how much I love her.

I told both girls that I am so sorry that sometimes my actions don’t reflect my words and that I’d try harder to always be more gentle, more loving, more like the mommy they both deserve.

Olivia finally fell asleep and I crept to my own bed where I laid in a shroud of self-loathing and guilt. It’s a vicious cycle. I get tired, I want them to go to sleep so I can go to sleep, the more I push for them to sleep, the more anxious they get and can’t sleep and the more frustrated I get.

It’s ugly and I hate that it happens. But I also try to learn from it and do better tomorrow and tomorrow and tomorrow.

And you know what? After that rough end to the night? Olivia slept the entire night, not waking once, not coming to my bed. She woke up looking more rested than she has in a few weeks. Go figure.

Wednesday, May 15, 2013

A Rose By Any Other Name...

Alyssa and Olivia love to ask me questions like, “What was my name going to be if I’d been a boy?” or “What would you have named me if you hadn’t named me Alyssa/Olivia.”

The second of the two came up one day last weekend. Alyssa wanted to know what other names I’d liked before she was born, before Alyssa became the name we chose to give her.

I told her that I’d pushed hard for the name Elizabeth. I explained that I really love the name and I thought it was a lovely tribute to one of my best friends in college.

Alyssa said she likes Elizabeth too. I laughed and said, “Yeah, you would have made a great Lizzy.”

Then I told Alyssa that a few months after she was born, I told Tom that we should have given her the middle name Beth then she would have been Alyssa Beth. Tom wasn’t amused. He was never keen on the name Elizabeth for our daughter and didn’t really like it pointed out that Alyssa was actually pretty similar in the end.

Olivia wanted in on the conversation.

I told her that I tried hard to get her dad to agree to the name Camilla. She’d have probably been called Cami. I said that her middle name would have had to change if he’d gone along with Camilla, though, because Camilla Kate wouldn’t have quite worked for me.

In the end, Tom didn’t like the way Camilla went with our last name (starts with an L) and so it was left behind and we obviously settled on Olivia, popularity not a problem for us.

At that point in the conversation Alyssa suggested I call them Elizabeth and Camilla for the day. Olivia was skeptical of this idea but went along because Alyssa can do no wrong in her eyes (unless Alyssa is trying to take something away from Olivia and then all bets are off.)

I like that they ask these questions. I like that I get to think back on those few quick months when they were growing, a dream I was having, a wish come true. When I imagined who they might be and what they might become.

Tuesday, May 14, 2013


Last weekend the girls and I were heading home from our Saturday regular stops of library, lunch, groceries. I decided to avoid town traffic and went a way we don’ t usually go.

Along this route, I pointed to a church and said, “I threw up in that parking lot when Livie was in my tummy.”

Alyssa laughed and asked if I threw up in any parking lots when I was pregnant with her. I told her I did but not as many in Angola as I did in Huntington.

Olivia was thoughtful for a few minutes and then asked, “When I was in your tummy, how did the nurses get me out?”

*Tangent: I sort of love that she gives the nurses credit for getting her out instead of the doctor. Ha! End tangent.*

I heard Alyssa snort from her seat and looked in the rearview mirror at Olivia. She was watching me closely, very obviously expecting an answer.

I took a deep breath and told her, simply, that sometimes a mommy’s body makes room for the baby to come out and the nurses catch the baby as she comes out. And other times, the nurse or doctor has to make a cut in the mommy’s tummy to get the baby out.

This satisfied her for a minute.

Then she asked, “How did I even get in your tummy!?!”

Ohh, there it is.

This time Alyssa didn’t snort, she snickered. She’s read a couple of books I picked up at the library about this sort of thing so I could tell she was just waiting to hear how I explained conception to her six year old sister.

I started, “Well, a part of Daddy met with a part of me and it made you. Then you grew inside me until you were ready to be born.”

This wasn’t enough. Olivia asked again, “But how did those parts get inside you?”

Yikes! She’s a tough one.

I explained, “The part of me was already inside me. The part of Daddy…well, we kissed a lot.”

Now…cop out? Maybe but it satisfied her for the moment. She’s six. I’m not sure she needs me to draw her a diagram and explain the intricacies of sexual reproduction.

Alyssa gave me a nod, as if in approval of my answer. Olivia saw something shiny on the floor and my reprieve was set.

Monday, May 13, 2013

Doing Our Best

We celebrated Mother's Day yesterday.

Tom and the girls was kind enough to let me sleep in before I got up to make breakfast for us all. Which…what a typical Sunday.

Then I folded laundry while Alyssa watched the original Plant of the Apes. She’s a cool kid, that one. During the scene in which Charlton Heston’s nude butt is shown she asked quite seriously, “Who wants to see that? Why?”

Like I said, she’s one awesome kid.

Then we headed to my mom’s, where she’d made brunch for everyone. Yes, the women in our family don’t quite let everyone do for them even on Mother’s Day. Why would we?

I let A and O pick out gifts for my mom and then we also framed their spring pictures. I put the pictures in the gift bags with the gifts they’d picked out so my mom would know which was from whom. Clever, huh?

As the visit rolled to a close, my mom thanked me and my brothers for coming over. She said that the best gift any of us gave her was just being there, visiting, spending time with her.

I hugged my mom and thanked her for being amazing. Because she is. She’s amazing. She was a single working mother most of my life. She worked so hard and yet we all knew how much she loved us.

I told her that anything I do right as I navigate this mommy journey is because I learned from her. Anything I do wrong is all on me. She laughed, hugged me again and told me that she thinks I’m darned good at this mom thing.

Coming from her, I’m absolutely taking it as a compliment. She always let me and my brothers know, through words and through actions, that we were the most important things in her world. She’s expanded that to include my girls and my nephew. Those kids are so at home at her house that they don’t even think twice about asking for food, taking out toys to play with, changing the channel on the television.

We got the luck of the draw when we got her. I only pray that I show and tell my girls how important they are to me. In the end, I would like them to know that I always wanted to do my best, even when I didn’t actually manage.

Friday, May 10, 2013

Too Big

I was informed a couple of weeks ago by a co-worker (female) that no one could tell that I’d lost 40 pounds because I wear my clothes so big and baggy.

I shrugged and figured, who cares? I mean, I know I’ve lost. I can tell. I feel so much better in my (baggy) clothes, that I don’t really care if she could tell I’ve lost.

But then a couple of days later, one of my aunts told me that I looked great, but then she added that I’d look even better in clothes that fit.

I told her I was wearing clothes that were two sizes smaller than the ones I’d worn just four months ago.

She sighed and said, “Honey, yes, but those clothes were too big too and you’ve just moved to smaller clothes that are too big.”

Which…whatever. I am not willing to cram my still largish body into tight clothes that pinch and bind and stretch over my still pudgy stomach.

No thank you.

This morning, though, I was getting dressed and even I was able to see (by looking in the mirror) that the shirt I’d put on was too big.

That’s a big deal. I’ve noticed my pants slowly getting too big and that’s why I’ve steadily moved down two sizes (sometimes three depending the pants/brand/time of day.) But my shirts have been pretty consistent. Yes, they’re a little looser but nothing so baggy that it looks terrible (to me. Ask my aunt or my coworker and they’d probably have a different opinion.)

That shirt this morning was definitely too big. I’m learning, slowly with many setbacks, that I really do look better in clothes that fit. They don’t have to be skin tight, but when they fit, they show how much smaller I really am. I think I might have to actually embrace the idea of wearing slightly tighter clothes these days. Tight? No. Fit? Sure, maybe. It could happen.

Thursday, May 9, 2013

Take Her Home and Love Her

Did you know that most doctors, when they think about Cri du Chat syndrome, think that those affected will never speak, will never walk, will probably never be responsive and most often than not, will die at an early age?

We got lucky. The doctor who finally diagnosed Olivia didn’t tell us any of those things. In fact, she told us not to research the syndrome because the research is often more than 40 years old and is based on patients who had been institutionalized from infancy.

She pointed out that everyone does better at home, surrounded by family members who love them, who want the very best for them. She said that even a typical child, if she is put in a crib and never held, never spoken to, never sung to, never taught will obviously not do as well as a child who is taken home, held in loving arms, sung to, talked to, taught.

That’s what everyone needs. Human interaction, touch, gentleness, nurturing.

Olivia’s developmental pediatrician specializes in children with Down syndrome because there are very few (any?) doctors who specialize in 5p- syndrome in the world. We feel lucky to have this doctor. She understands that every syndrome has ranges. She understands and communicates with us the importance of not setting limits, not putting a cap on all that Olivia might be able to do.

We only have to see this doctor every two years because we’re so incredibly lucky that Olivia enjoys excellent health. But I will admit to being happy when our two year appointment is due because I get to go show Olivia off to this doctor who might not have saved Olivia’s life but did save my sanity.

The best advice this doctor gave me and my husband was to take our daughter home and continue to expect as much out of her as we expect out of her older, typical sister. She said that Olivia will need more time to do the things that Alyssa does but we should never believe that she won’t do those things.

She told us to let Olivia show us what she could do, let her be the one to set the limits if limits need to be set at all.

And she told us that people with Cri du Chat can live long, healthy lives. There isn’t anything in the research to show that Olivia shouldn’t have a normal lifespan. That missing part of her fifth chromosome isn’t something that takes twenty years off her life. She’s healthy, she’s strong, we provide her with activities that build and help maintain her muscles as much as her low tone will allow.

We took our daughter home the day we got her diagnosis and we loved her. We continued to meet with therapists who got her up and walking just two months after received the diagnosis. She talked just six months after she started walking. She ran a year later, chasing her sister and her cousin, Jaxon. Those two people, Alyssa and Jaxon have been instrumental in Olivia’s amazing confidence. They treat her like the little sister, the bigger cousin that she is. They don’t count chromosomes, they don’t care that she’s a little weaker than they are, they don’t care she might trip a little more often than they do. They love her, they laugh with her (and yes, at her sometimes). They wrestle with her without worrying they might hurt her.

They’ve toughened her up even as I sit on the sidelines and bit my tongue to keep from telling them to be careful with her. She’s just Olivia to them. She doesn’t have special needs, she’s not missing a single thing they care about.

For these things, I am eternally grateful.

Wednesday, May 8, 2013

Going Green

We are basking in the spring that has sprung around here. When I get to my mom’s each afternoon to pick up the girls they are sweaty and flushed from running around outside for the hour between when the bus drops them off and I get there to pick them up.

Tom feels like he’s mowed the lawn seventy two times in the past three weeks, that’s how fast our grass (read: dandelions) are growing these days.

He’s already put our garden in, with plans to cover it this coming weekend to protect against potential frost.

We planted my mother’s day weeping cherry tree in the front yard yesterday.

The girls and I made our first trip to the park last weekend, after the girls has spent most of the day in our backyard as Tom worked in the garden and I hung load after load of sheets and blankets on the line to dry.

Yes, we’re loving the green that has sprouted around here. My lilacs are on the verge of blooming, the apple trees will do the same in another week or so, we hope.

I love watching the girls bask in the beauty of a soft spring evening. Olivia runs up the slide (yes, up the slide. I let her do it at home but not at the park when there are other kids there trying to go down the slide) and I am amazed at how much she can do.

I watched Alyssa play with her toy dogs and horses last weekend and I’m so thrilled that in so many ways she still so little. I want her to hold tight to her childhood and keep puberty at pay just a little longer.

I’m hoping all this green and sunshine will wash away the latent grouchiness I find myself wallowing in. What is my problem? Sleepiness (thanks every so much, Liv)? Busyness? I have a bridal shower coming up in a few weeks that I’m hosting so I’m trying to clean my house, plan a menu, gather door prizes, etc. I don’t know. I do know that I’m trying hard to let it go, to see the beauty of the spring and the coming summer. It’s the very least I can do for myself and my family.

Tuesday, May 7, 2013


This week is Cri du Chat awareness week. I don’t use the Cri du Chat title very often when talking about Olivia’s syndrome. I usually call it by the medical name of 5p- syndrome. Why? Because Cri du Chat mean, quite literally, Cry of the Cat. It describes one symptom of Olivia’s syndrome, a symptom that went away.

But most people know 5p- as Cri du Chat.

So yes, Olivia has Cri du Chat syndrome. She is missing part of her fifth chromosome, part on the short arm, the p part.

Most people have never heard of Cri du Chat. It only affect 1 out of 30,000 to 50,000 people. It comes with a variety of symptoms. Low birth weight, small head, low muscle tone, cat cry at birth, universal developmental delays and yes, mental retardation.

It’s hard for me to write that. It’s hard to read it. When Olivia was seen by a geneticist soon after her diagnosis when she was just over two years old, I sat and listened to this doctor list everything about Olivia. It was a very cold, very clinical visit.

When I got the report from the geneticist, it stated, in black and white, that mild to moderate mental retardation was likely.

I threw that report away.

Now, I know that just tossing a piece of paper in the garbage isn’t going to make the words go away. It isn’t going to take away the possibility of mental retardation out of the equation for Olivia, but I couldn’t have something like that laying around, even filed away in our home. Our home was a place where possibilities are endless, where Olivia was already proving doctors wrong and I wanted to keep that hope alive and not dwell on a single piece of paper that was sent from a doctor who was cold and clinical, who looked at Olivia like she was a science experiment rather than a person, a human being with feelings and potential lie everyone else.

Olivia was the first person this geneticist had seen with Cri du Chat. She’s likely going to be the only person any of her teachers or therapists ever come into contact with who has this syndrome. She’s teaching us all every single day, even as she learns herself.

It took over two years to get O’s diagnosis because she doesn’t have the facial features that are common in children with Cri du Chat.

People see her bright blue eyes, her curly blond hair, her wide smile and her contagious giggle. They might hear her soft, higher-than average voice, but they often think she’s just shy.

But Olivia is verbal, she’s mobile, she’s active, she’s smart. She often keeps things to herself until she masters them and then she’s off to show the world how amazing she is.

Early intervention is very important for babies born with Cri du Chat. They need to be shown how to do things that come naturally to typical children. Olivia had no instincts for sitting up, crawling or walking. But she has muscle memory and once she learns something, she doesn’t forget how to do it.

Most of all, children with Cri du Chat love. They love life, they love the people in their lives, they learn, they laugh. They are beautiful, loving children and adults who want nothing more than to share their love of life with those around them.

Monday, May 6, 2013

The Party

Olivia attended the party of one of her classmates this weekend. You know, the one where I had to call the mom and ask if it was okay if I stayed during the party. For the record, whenever I send out invitations to a child’s birthday party, I always put at the bottom of the invitation that parents are welcome to drop their children off or stay for the entire party. That right there saves calls like the one I had to make.

Ahem. Right. So the party.

When we got there, the birthday boy and his cousins were playing on the bounce house. The birthday boy, let’s call him Diego because that’s the name I wanted to use for him all freaking weekend, was thrilled to see Olivia. She…was not quite as thrilled to be there. She was intimidated by the cousins, children she’d never met and she wouldn’t set foot inside the bounce house even though it had a slide.

A slide!! She’d asked me for days if I thought Diego’s bounce house would have a slide. She was so excited about the prospect of a slide and yet, the actuality of a slide didn’t overcome her shyness around strangers.

Instead, she and I stood just outside the bounce house for twenty minutes, with me pushing her onto the outside edge of the bounce house, where she’d laugh and leap right back up to grab my hands again.

But then, twenty minutes after we arrived, the most wonderful thing happened. The only other girl in Olivia and Diego’s class arrived. We’ll call her Lucille. Lucille was late due to T-ball pictures but when she arrived, Olivia felt as if the scales had tipped in her favor. Suddenly, there were three classmates (Olivia included) and only two cousins so, yay! She informed me that maybe she’d just get in the bounce house and go down the slide just one time.

I told her that was a great idea, took her shoes off her and in she went. And…she didn’t come out until the party was over, an hour and a half later.

Yes!! Olivia and Lucille and Diego played and ran and the other kids beat the candy out of a piƱata, everyone grabbed the candy off the ground. Even Olivia exited the bounce house long enough to get some candy and eat a little cake.

I was really proud of her. She played alongside her classmates. I’m not sure she interacted with them a lot but she was right there, playing where they were playing, laughing with them, maybe not talking to them a lot but definitely answering questions and having a blast.

She was so tired when we got home. But it was a good tired, a well-earned tired.

She made me proud. But then, she usually does.

Friday, May 3, 2013

His First Time

Although yesterday’s IEP meeting wasn’t my first, it was Tom’s. In the past he’s opted out of the meetings, trusting me to go and represent our family.

As I was packing lunches yesterday, I casually mentioned that I’d be at the school at 2:00 if he wanted to join me. He told me he trusted me to take care of it.

I thought that was what he’d say.

But as I drove toward the school at 1:40 later that day, he called me and asked where I was. I told him and he said he’d meet me at the school.

I was glad for the support. I was glad for his input when the teachers asked questions or made statements about Olivia.

It was nice to show up as a united team, both of us there for Olivia, both of us with our own experiences with her.

Since Tom is the one who is home with her each morning before school he has a unique point of view. Olivia doesn’t respond to him as well as she does to me. So he gets a bit more of the ‘deliberation’ from her, similar to what her teachers experience.

See, I am Olivia’s very favorite person in the whole world. She would choose me over any other person if given that choice. So…she talks to me. She makes her wants and needs known to me more so than she does to anyone else, including her dad.

I think it was good for her teachers/therapists to meet him, to hear how he responds to her and how he get responses from her. I was so glad that he decided to join me at the school.

I’m not sure he plans to ever do it again but I’m grateful for this year’s participation.

Thursday, May 2, 2013

I for Independence

So I’ve been to, let’s see…about eight IEP meetings. I sit, I listen to them tell me who Olivia is during the hours that I’m not with her. I nod and agree with a lot of their statements, qualifying comments in areas where I feel they might not be quite right.

I’ve gotten good at playing the concerned mother, the advocate, the one who wants the very best for her child. Obviously, I am a concerned mother, an advocate for my child as she struggles to find her own voice and I definitely want what is best for Olivia.

But at times, these meetings feel like a waste of my time. I feel like I’m pulled in because they have to meet with me. They don’t really want my input, they don’t really care what she can do at home because, well, she won’t do those things at school and they can’t grade/rate her on what she won’t show them.

And I understand their frustration with my child. Hell, I felt it myself last night as she wriggled and turned and poked at me as she fought falling asleep. I know how stubborn she can be. I know she often pauses, seems to be deliberately refusing to do something, defying me or whomever else is in authority at that moment.

But understanding frustration doesn’t mean I think they’re right about Olivia’s deliberation. None of us really knows how her mind works. We don’t know how she processes information or requests. We don’t know if she’s being stubborn or if she’s just thinking really, really hard.

These women are good people. They really do want what I want. We all want Olivia to succeed at school. We want to push her just enough to get her to reach her potential but not so much that she’s overwhelmed and shuts down.

But to them Olivia is a job. I know this and I understand it. I just hope they know and understand that to me, she’s a way of life. She’s my baby, my heart. I worry about her at a near constant level. I worry about today, tomorrow, next year, the next decade. I worry every single time I get in the car that I might die and who will love her as much as I do? Who will rub her back and let her take long, hot baths? Who will listen to her as she tries to get her thoughts out of her head and into the world around her? Who?

I also worry about lunch next year as a kindergartener. I know this sounds so silly but Olivia will not be able to carry a lunch tray. And she might not eat what I pack for her and then she’ll be hungry! I know how silly that is in the grand scheme of things but it’s a worry that’s been nagging at me.

There will be an aide in the kindergarten class next year. But I was told in the meeting yesterday that this aide is not there exclusively for Olivia. This was made very clear by the principal. I get it. O will have help but she won’t have someone who is there just for her.

I worry I coddle her too much too. I mean, so she’s hungry for a couple of days during the beginning of school because she got distracted and didn’t eat as well as she does at home when she has a parent sitting next to her, cajoling her to eat or hell, even feeding her bites of her food until it’s gone. I should step back, out of my own worry and think that this might be a good thing. She might learn from the hunger of the first few days and learn to eat her lunch on her own, without help, without someone looking over her shoulder making sure she’s eating.

This is her chance to be independent, to show us how much she can do without help. I want that independence for her so, so much. I want her to prove us all wrong.

My problem is that I don’t want her to suffer was she’s gaining that independence. I know we all have to learn and grow at our own pace and make our own mistakes and I know this is true even for my girl. But it’s so hard to watch her walk away and know that I can’t make everything easy for her, right for her. I can’t make her mistakes for her and suffer her pain.

She has to do it all herself, because that’s what independence is.

The main goal of her IEP is for Olivia to learn to voice her wants and needs in a clear, audible voice. Isn’t that the goal for everyone? Don’t we all just want our kids to be able to stand up for themselves, make their wants and needs heard?