Thursday, May 28, 2015


And so the week ends and with it the school year. (I’m taking tomorrow as a vacation day so I can spend the girls’ first day off summer with them. Such a fun mom; though I’m not sure how much fun we’ll actually have, we don’t actually have anything planned for the day.)

We’ve had a good year but we’re glad to see summer arrive.

This week was the final letters of the alphabet were also counted off. We’ve had great fun with this little project. Olivia especially liked the fact that I was able to braid her hair into an X on Tuesday, a Y on Wednesday and a Z today. That was an adventure.

Want proof?

And finally, we recreated the first day of school picture that can be seen at the top of this very blog; my how they’ve grown.

Wednesday, May 27, 2015


In the car last Friday, Olivia called from the backseat, “Mom, what does midget mean?”

I replied, “It’s a derogatory term for people with any of the many forms of dwarfism. They don’t want to be called dwarves, though either. People with dwarfism want to be called little people.”

I glanced in the rearview mirror in time to see Alyssa roll her eyes at her friend, T, who was spending the night with us.

After catching my gaze, Alyssa smiled and said, “Do you have a dictionary up there or something?”

“You think I’m driving and reading from a dictionary?” I asked, because, hello, who does that? Crazy people who want to kill themselves, their passengers and everyone else on the road maybe.

“No,” Alyssa confessed. “But you sure sounded like a dictionary just now.”

I smiled. “Because I defined midget?”

“Because you used words like ‘derogatory’ and ‘dwarfism’ to define midget,” she replied.

“Huh,” I gave it some thought. “Olivia, midget is a word some people use to describe very short people. It’s not a nice word.” I looked at Alyssa in the mirror again. “Better?” I asked.

She smirked and said, “Much.”

Lord save me from smart-alecky twelve year olds.

Tuesday, May 26, 2015

Field Day(s)

Each year, the girls’ school holds two field days. One field day is for the fifth and sixth grades. The other is for Kinderkids through fourth graders. In years past, these field days were held on the same day but in different areas outside the school.

Let me backup. Field day is a day when the kids are taken outside in the afternoon for a couple of hours of playtime. Parent volunteers (not me, my kids would prefer that I be free to follow them from station to station, thanks anyway) run each station with different games. There are several stations that involve…water. Yes, it gets very wet and very muddy. But so much fun is had that no one minds.

This year, though, the field days were held on separate days. I had originally taken the day off work for Alyssa’s field day so I could attend. A few days before the day field day was supposed to happen, I asked Alyssa (again!) if she wanted me to go. Parents are invited to come watch (or you know, help, hahahaha.)

She hemmed and hawed and said she’d ask her friends if their parents were going to be there.

I told her that I wouldn’t be hurt if she didn’t want me to go; she just needed to let me know. Finally, the night before field day, she said, “You don’t have to go.”

And it was fine. I went to work an hour late (dentist appointment) and left an hour and a half early (meeting at the school to discuss Olivia and her unlabeling.)

When I got home from the meeting I asked Alyssa if any parents had come to watch their fifth and sixth graders. She shook her head. I think she was relieved that she hadn’t been the only one with a ‘fan’ in the stands. Haha. Though it would have been neat to watch her make that winning jump in the high jump. See, the fifth and sixth graders get to do to the track and field area where the do actual track and field events during their field day.

I had about a w eek and a half notice about Alyssa’s field day. I found out about Olivia’s field day at 5:30pm on Thursday, May 21. It was being held on Friday, May 22 at 12:30pm. Yeah, this time, the sixth grader brought home the papers and the first grader didn’t.

I was able to take the afternoon off work and go spend it with Olivia. I was one of two parents of first graders who showed up, but let me tell you that even if I’d been the only, there would have been no embarrassment for Olivia. She was thrilled that I was there.

Let me stop here and say that I don’t think Alyssa would have been embarrassed so much by me being at her field day. It’s just that when you’re twelve and your mommy shows up, well, come on, we all get it, right?

Eight year olds, on the other hand, still want to hold their mom’s hand and hug them close and show them off. How lucky am I that I get to do at least three more field days?

Thursday, May 21, 2015


A few years ago, Olivia’s team at school decided that because 5p- syndrome is so rare and most people have never even heard of it, she would be better served if we went with an Autism label on her IEP.

I have never said that Olivia has autism. She has a few of the symptoms, but those can be attributed to her diagnosis of 5p-. A lot of the symptoms of 5p- mirror those of autism. Even after the school put the autism label in her file, I never used it.

I kind of loved this school psychologist. He said that Olivia never really talked to him directly but she would be silly, would answer direct questions with a nod or a point or a whisper if necessary.

He wants to take the autism label out of her file because he’s afraid that if we ever change school systems, other teachers/administrators/psychologists will see Autism and not look beyond that.

He also explained that her diagnosis of 5p- syndrome almost guarantees her services as long as we feel she needs them. There is no need to tack autism on top of that.

His assessment of Olivia is that she’s very smart (duh), she’s creative, she can be quite charming and she’s extremely stubborn.

Ha! Like we didn’t know that one.

But seriously, he got all that from about three twenty minute sessions with her, during which she didn’t talk much to him. He said that sometimes she would start to answer a question, realize what she was doing and shut down again. That’s not an autism thing, that’s a stubbornness thing.

So we will continue to expose her to her peers, put her in the mainstream classroom next year with all the other second graders with as much or as little intervention as necessary to keep her up to speed academically and we’ll push her socially. It’s what she needs.

What she doesn’t need is a label that doesn’t fit her.

Honestly, I’m glad we’re losing the autism label. I went with it when they suggested it before kinderkids because they said it would help her receive and keep services. From what I learned yesterday, she doesn’t need it and in the long run, since it’s not an accurate label for her, it could hurt her.

So we’re going forward without the label. It doesn’t change anything about Olivia. She’s still her smart, creative, stubborn little self. Those characteristics will serve her well throughout her life.

And today's hair, just because:

Wednesday, May 20, 2015

Five More Lunches

That’s how we’re counting down the school year. We only have to pack five more lunches. Go us!!

The school is having a ‘Right to Read’ week and yesterday Olivia went to school dressed at her favorite princess. Guess which princess she chose…Elsa, right?

Nope, not this time. She informed me that there would be a lot of girls dressed as Elsa and so she wanted to wear her Rapunzel dress. Go Liv, dare to be different!!

Today the students were encouraged to dress as their favorite fairy tale character, animal or villain. Olivia chose Tinkerbell.

Yes, we’re really lucky to have a very extensive dress-up closet/bin. She has a Tinkerbell outfit that only needed a pair of pants and a long-sleeved shirt under it to make it weather/school appropriate. If the temps weren’t in the mid-50s today but instead at a normal 70-something, she could have worn a tank top or a short-sleeved shirt under the Tink costume but alas, our weather is bi-polar and so we keep going up and down and then up again. I hope Mother Nature gets her meds figured out and settles into typical temps for this time of year soon.

Ahh but Tinkerbell. She’s so darned cute. How awesome is it that O’s hair has grown to the point that I can do this to it?

So much fun to be had with only five days left of first and sixth grade.

Tuesday, May 19, 2015

Dropping Physical Therapy

Tom and I met with the physical therapist from Olivia’s school last Friday.

Miss Mary Rose called us because she won’t be at a meeting we have scheduled with the school psychologist/teachers/principal for Wednesday. Miss M.R. has to make a recommendation to be presented at that meeting and she wanted our input before finalizing her report.

Her feelings are that she’s brought Olivia as far as she can in gross motor function.

Here are the things Olivia can do:

She can navigate the halls with no trouble. She doesn’t walk with a limp or any visual sign that walking is at all difficult for her.

She can run. She can play any game asked of her in gym class. She may not CHOOSE to play those games but she CAN play them.

She can climb. She doesn’t like to do this but she can do it. She enjoyed climbing when we’re at the park but doesn’t really trust other kids around her not to get pushy.

She can take the stairs with alternating feet without holding on.

She can hold the plank position.

She can hold the Superman position.

She can hope on one foot.

She can catch a ball with just her hands, not using her body against which to catch it.

She can do so, so much.

Miss M.R. said that Olivia’s balance is one thing that they still work on a little bit. O’s got great core strength but standing on a balance beam (about three inches from the floor) and holding out her hands and then lifting one foot is hard for Olivia.

Olivia very much worries about falling so I think it might not be for lack of being able to do this thing so much as her own fear of falling while trying that keeps her from actually doing it.

This summer Tom is going to put a low balance beam in our backyard for Olivia to play on.

See, that’s part of what we discussed with Miss M.R. Playing. She feels like most of the skills Olivia has gained and will continue to develop can be learned through play.

And Olivia’s biggest weakness in school is not gross motor skills. It’s her social abilities.

I got to the school early last week for our meeting with the PT. I was able to watch Olivia as she played at recess. Olivia sat on the ground and played in the dirt. She sat by herself, keeping very much to herself while all the other kids ran and jumped and climbed and swung and slid around her.

Several times during the ten or so minutes that I watched, someone would stop and sit with Olivia. The kids who sat with her talked to her and Olivia looked at them but never talked to them. They’d sit with her for a minute or so then go back to their games.

I want so much for her to have friends, to interact with the kids at school. She needs to be in the classroom for that. So we’re dropping PT and giving her more classroom time.

Obviously we’re leaving it open to bring PT back if O shows any sign of regression, if she loses any of the skills she’s already acquired. But for now, PT isn’t as important as just being with her peers.

Monday, May 18, 2015

A Talent Show

Alyssa’s school puts on a Sixth Talent Show each year. This is entirely voluntary, the students even have to audition to get the chance to perform.

Alyssa and three friends, A, S and T performed a Skillet song.

Can I just be a mom here and say that they were freaking adorable? So much fun and cuteness and they’re twelve and SO BRAVE.

My mom and Tom joined me at the school to watch the show.

As we sat waiting for the show to begin I told my mom that if my school had done something like this, I would have been one of the kids sitting at the back of the room, not performing. I would have WANTED to perform but I wouldn’t have had the nerve, the confidence.

I am so, so glad that Alyssa has awesome friends who encourage her and whom she encourages and that together, they were brave enough to climb onto the stage and sing. They SANG. And it was awesome.

Okay, pulling myself together again. Ahem.

Alyssa is everything I wish I’d been when I was twelve. She’s confident, she’s strong, she’s so smart and can be so sweet and yet she stands up for herself and others when she feels that she or others are being picked on. She has amazing friends who are also smart and confident and kind.

She doesn’t doubt her own talent, her own beauty, inner or outer. She exudes a strength that I hope grows and blossoms as she does.

This talent show was so much fun, for the kids as well as the parents. The kids made their own costumes, came up with their own acts, picked their own music. They performed their way and it was amazing.

Twelve is so great for Alyssa. I hope it just keeps getting better.

Thursday, May 14, 2015

To Remember and Appreciate

I want to appreciate how far she’s come. I want to be grateful for every word she says. I want to be happy that she can follow me up the stairs and back down and then back up again, talking the entire way, issuing orders requests for a different fancy dress, a different doll, new batteries for her keyboard and potato wedges for dinner if you please.

I want to be able to step out of my tired self and see how lucky we are that she’s here, that she talks to us, that she understands us, that she can walk and run and be silly and read stories and tell us all the thoughts tumbling around in her beautiful head.

But instead I get impatient and annoyed when she doesn’t like the third dress she tried on. The first one was too big, the second was too short and the third was too itchy. I snapped, “Liv! I’m tired of putting dresses on you only to have to take them off you and hang them up. Pick ONE and then we’re done!”

I hate that I make her cry with my harsh words, that she’s becoming so sensitive to my moods and that I yell and get grouchy with her.

I hate that she will ask me if I’m mad at her because it seems to her like I’m always mad at her.

We expect so much from her because she’s already proven that she’s up to the challenge, that she can meet our expectations. Honestly, I don’t think we treat her all that different from how we treat her neuro-typical older sister.

But there are moments when I need to step back, step out of my own irritation and bask in how NORMAL she really is in so many way, how lucky we are that the missing part of that pesky fifth chromosome isn’t really slowing her down at all.

I take Olivia’s health for granted on a daily basis. I take her sense of humor for granted too, the way she’ll get my sarcasm and laugh her awesome belly laugh at something I said, something obnoxious that I should have kept to myself but I’m glad I didn’t because I got to hear her laugh.

I take for granted that she understands everything I say, that she doesn’t have to be ‘talked down’ to. I don’t stop to think about the fact that she might have a hard time making a decision if I give her more than two choices anymore. I just give her the options and expect her to choose.

I need to slow down a little and remember how far we’ve come and how amazing she is.

Just like I need to remember how amazing Alyssa is these days with her twelve year old self.

I am so lucky and I need to remember that.

In my moments of frustration when she’s being ‘picky’ I need to remind myself that this is one moment in time, one amazing moment that I can spend either annoyed with my sweet girl or marveling at the fact that she can tell me that something is too itchy instead of signing the words or even just looking at my imploringly, trying to get me to read her mind. Being verbal is a gift. Having verbal children is a marvel. I need to remember that a little more often.

Wednesday, May 13, 2015

On My Kid and Dogs

My mom and stepdad are thinking about taking custody of my youngest brother’s new puppy.

Why does brother M not want to retain custody of said puppy? Because, according to my mom, puppy is too mellow.


M wants a dog that will play, will be a bit growly and maybe even aggressive. Sure, M wants a dog who recognized that M is the head of the pack but he likes his dogs to show spunk, if you will. He wants them smart enough to learn manners but also tough enough to push the boundaries of those manners.

I guess the new puppy just wants to love and be loved.

Have I mentioned at any point in my many years of oversharing that Olivia doesn’t like dogs? I have? Oh, good. Let me say it again. She doesn’t like dogs. She doesn’t like cats either and any other creature with fur or feather or fins can go suck it as far as she’s concerned. She doesn’t like animals because they’re unpredictable. They sniff and they jump and they lick and they bark (or tweet or meow) and she’s afraid of that unpredictability.

One thing (of many, of course) that I love about my oldest stepson is that even though he had three big dogs living in his house he always puts them out in the barn when we come visit. He doesn’t assure Olivia, “They’re nice dogs, they won’t hurt you, don’t be scared.”

No, he just puts them away because he gets that his little sister is scared of them and he doesn’t expect to be able to logic her out of that fear. He respects her fear and just puts his dogs where she doesn’t have to see or hear them while she’s there. I can’t tell you how much that endears me to my stepson. My husband has great kids (all five of them.) I’ve always known this but the way J respects O’s fears and doesn’t try to ‘fix’ them by forcing her to face his dogs is just so sweet and show an amazing amount of kindness.

Back to my mom and my brother’s dog…my stepdad is the one who really wants M’s dog. He swears that if they do take the dog, he’ll (the dog, not my stepdad) will be put into another room whenever O visits.

Okay. Well, I appreciate that they’re going to be as considerate as J is but then I’m reminded that we go to J’s house maybe twice a year. Not a big deal to put your dogs in the barn twice a year for your little sister.

We go to my mom’s house at least once a week. Is it fair to the dog to be locked up each time we visit?

I suppose it’s not that big a deal. Olivia loves my mom’s sunroom, if we’re out there, their dog could have free run of the rest of the house, so…yeah, it’ll be okay.

And I’m not suggesting that my mom and stepdad base their decision to get a pet on my or my daughter’s wishes. If the dog is as mellow as they say, he will probably just lay around and ignore Olivia anyway, which is what their cat does and O’s perfectly happy with that.

And for the record, there will be no dogs entering our house anytime in the near or far future. Even if Olivia weren’t terrified of them, I find dogs to be way too much work to ever invite one into my family. Again, that’s just me. I’m glad there are people out there with the patience and energy to care for them. I just know my limits and our cat and his litter box (which lives in the barn) is at the top of my limit for commitment of time and energy to someone who is not human.

Some days the fish even feels like too much of a time suck, what with the three seconds it takes to feed him every single day and the fifteen minutes every two weeks it takes to clean his bowl.

Tuesday, May 12, 2015

No-Win Situations

Last night Alyssa and I were headed toward the school for her Spring Band Concert. (Aside: Can I just say that band concerts in which the musicians are between the grades of four and eight are no enjoyable. Not even for the parents of the musicians. We, the parents can APPRECIATE the concert, but no one actually enjoys it. Just saying.)

One the way there, we talked a little about no-win situations.

Alyssa had been in a ‘conversation’ with someone earlier in the day in which this person was angry at something Alyssa had done.

As an example of the issue let’s say that Alyssa had thrown away a partially eaten drumstick. Let’s also say that her dad found that drumstick and was astounded that she’d throw it away when it had at least three bites of chicken left on the bone.

So he’d confront her about this, right? He’d ask why she threw it away and she’d reply with a timid, “I was full…?”

Then he’d go into a tirade about how she was wasting food and she’d just stand there listening.

After his anger over the wasted chicken, let say he asks her, “Do you throw away your food at school?”

This is where the situation becomes no-win. If she says yes, she throws away her lunch at school, he’s going to be even madder at her for wasting more food.

If she says she doesn’t throw away her food, he’s going to respond that of course she doesn’t throw that food away because it’s junk and she always eats junk.

During our car ride, I told Alyssa that at times like the above, when she knows there is no right answer to a questions someone is asking her, she’s allowed to respectfully ask that person what they want to hear.

She is allowed to say, “I know you’re angry and so I know that no matter what I say is going to be wrong and probably make you even madder at me. I’m sorry for the chicken I threw away. What would you like to me to do in the future if I’m full and don’t want to finish my chicken? What can I do that won’t make you mad?”

She listened and nodded.

I hope the heard the real message there, that sometimes, people are mad and want to stay mad. That sometimes you aren’t going to be able to soothe their mad and the only way to ‘win’ is to ask them point blank what they’re hoping to get out of the conversation. Sometimes asking that question will help defuse their anger enough to settle the situation.

I want her to stand up for herself but I also want her to have tools in her grasp that can help her even when she had to be respectful to those who are angry with her.

I also wish I were better at confrontation myself. I hate confrontation and I never know the right thing to say until after the confrontation is over, which makes me mad at myself because I’m always so smart after the fact.

I’ve got to get better at standing up for myself, if only because I need to be a better example to my girls.

Monday, May 11, 2015

Playing Favorites

I used to worry so much about Alyssa. When Olivia was born and had to be rushed to a bigger hospital, I worried about Alyssa feeling lost in the shuffle.

When Olivia came home and cried for months and months, I worried about Alyssa feeling betrayed that we’d brought this squalling creature into our home and disrupted her entire life.

I’d talked such a big talk when I was pregnant with Olivia. I told Alyssa that I had two arms to old two babies and that she’d always be my first baby, always be my love. I talked about how much fun Alyssa would have with a baby sister. Sure, I tried to prepare her for the infant months, when most babies are just lumps of need but Olivia’s need surpassed even the neediest baby we’d ever known. I told Alyssa that having a baby sister was going to be so awesome.

And then her sister came home and everything changed. Suddenly Alyssa’s needs weren’t the first ones being met each day. Her needs were met, but usually after we’d taken care of Olivia’s needs.

Yes, Alyssa never went hungry but there were times when I worried so much that she was being neglected, maybe just benignly but still neglected.

I tried so hard in those early months to hold her, to read to her, to comfort her when her sister was screaming. But it was so hard for all of us.

And I worried. I worried that Alyssa would feel like she’d been replaced by her sister. I worried that Alyssa would feel like we favored Olivia because Olivia was so, so needy for so long.

These days things have mellowed, Olivia’s needs aren’t any greater than anyone else’s in our house. We’re so incredibly lucky for that, I know. As her needs eased, I’ve made a point over the years to spend time with Alyssa, to talk to her, to remind her that she’s still a priority in my life.

I know it’s never going to be perfect but I’d like to think that most of us do our best most of the time.

I take comfort these days in the fact that Alyssa often asks me who my favorite child is. I always just smile and say, “You know I adore you both.”

Then she’ll grin, wink and say, “Yeah, I know you can’t admit that I’m your favorite, at least not in front of Livie. But we all know the truth.”

At that point, Olivia, if she's awake, will crawl into my lap and whisper that she knows she's my favorite.

I must be doing something right if they both think they’re my favorite.

Friday, May 8, 2015

Conscious Care

As we wind down 5p- Awareness Week...a little about how 5- syndrome affects (or doesn't affect) our daily lives:

May 2013 was the last time Olivia was seen by her developmental pediatrician who practiced with Riley Hospital for Children. Dr. S told us at that appointment that she was moving to Wisconsin the very next month and said she’d refer us to a behavioral pediatrician before she left.

Uh…I’m not sure that happened.

But whatever. At the time we were in Indy for O’s appointment with Dr. S, we went ahead and had her x-rayed to establish a baseline against which to judge whether or not she’s developing scoliosis at any point.

I decided that I needed to be the mom I’ve always been and set up an appointment with our family doctor. He is the doctor who sees us all for regular illness, etc. He’s the one who sent O to the bigger hospital with the NICU when she was born. He acknowledged right then that he didn’t know how to care for her when she was a newborn and couldn’t breathe. I can appreciate a doctor who is willing to admit he’s/she’s over their head and willing to call in the specialists.

At this appointment, I mentioned that I don’t think we actually need to go back to Riley at this time. Without Dr. S there, I don’t really think Olivia needs to see another doctor. Our family doctor can take care of O’s general health needs and she’s not really a medical anomaly anymore.

I told him that a lot of her behavioral issues are resolving themselves with therapies through the school and excellent teachers.

He observed Olivia interacting with her sister. He looked at her spine and her ribs and her hips.

He said that she shows no signs of scoliosis at this time. He recommended having her checked visually every six months and said that if she were his child, he wouldn’t have her x-rayed again anytime soon.

He also said that he agrees with me that as long as Olivia’s behavior doesn’t indicate the need for medication (as in ADHD, etc.) he doesn’t think she needs a behavioral pediatrician.

We agreed that we’d continue as we’re going and change things as needed.

When we were finished with the visit, the doctor actually thanked me for coming in. He said he was happy to have had the conversation we’d had and that it was actually kind of nice to have an appointment when a patient isn’t sick.

I felt a little vindicated by his comments. See, Tom had asked the day before why we even had the appointment. I tried to explain to him what I hoped to get out of the appointment, but I don’t think he got it.

He was the one who had to bring the girls to me and I think he felt like this appointment was a waste of time.

But you know, back in the day when I was searching for answers for Olivia, looking for doctors who would believe me when I said she cried more than most babies, someone who would look at her and see that she was more than just delayed, that there was something more to her than a ‘lazy’ baby, Tom was kind of on the doctors’ side then. And I get it. He wanted to believe them, to believe that she was fine, that she would catch up.

But she wasn’t going to catch up, not without therapies.

One of the best things that ever happened was when Tom had to be the one who was home with Olivia during two of her four weekly therapies. He got to see what the therapists were doing with Olivia. He spoke with these professionals, listened to them, learned from them. From these amazing women, he saw that I’d been seeing for months. Olivia needed help, she needed to be taught everything.

But she’d learned. We all have. And one of the most important lessons I’ve learned in my eight years of mothering Olivia is that I can’t relax, I can’t just let things slide. I have to stay on top of things like scoliosis, behaviors, etc. I need to work closely with her team, her teachers, her therapists, her doctor. As her mother, I am her biggest advocate, her biggest cheerleader, her biggest fan.

She’s got so much potential and it is up to me to continue to work to tap it, to find the right people to help me help her find all that amazing stuff inside her beautiful little brain and her strong little body.

Speaking of…for the record, at O’s appointment on May 5, 2015, she was four feet and four inches tall and weighed fifty-nine and a half pounds. She’s come a long way from that five pound, two ounce baby who was born gray and pale, struggling for her every breath.

Thursday, May 7, 2015

Star Gazing

So…Alyssa and I tried to watch Star Wars last weekend. We tried it on Friday night and we were both tired when we started the movie.

About twenty minute into it, we stopped the movie and went to bed.

She was bored by the whole thing and I was annoyed by C-3PO. I mean seriously, is there a more pompous robot out there? I don’t remember him being so obnoxious the first few times I watched this movie.

I said at one point in the twenty minutes we watched, “I don’t think I’ve ever seen a depressed robot before but here we are, watching a depressed robot shuffle his way across the desert.”

Alyssa was more entertained by my commentary than she was by the action on the screen.

She found Leia’s hair to be ridiculous. She asked, “How can she hear with those things covering her ears?”


We’ll likely try it again in the next few weeks. We have to. She has to be able to say she’s watched Star Wars (and The Empire Strikes Back and The Return of the Jedi) but I can’t promise either of us will actually enjoy watching any of them other than the fact that we enjoy being together and making fun of things like this.

So after twenty minutes of Star Wars, I can give a preliminary vote of preference in favor of Star Trek. But I’ll reserve the final vote for after viewing all three of the afore mentioned Star Wars movies. You know, just out of fairness and all.

Wednesday, May 6, 2015

A Reader of Minds

When I was a kid, I swore my mom could read my mind. Maybe I was just a really good hinter. I don’t know, it just seemed like she always knew what I was thinking, what I wanted, what I needed.

There were times, though, when she’d perform her mind-reading magic and then warn me that someday, I’d expect the same from others in my life and be sadly disappointed when they couldn’t read my mind.

Last night my older daughter and I had such a moment.

She was in a predicament. One that doesn’t need to be aired for all the internet to read but yes, a predicament.

She made a subtle hint and I asked her outright if she was suggesting we go to Walmart that evening and fix her predicament.

She nodded gratefully.

I then had the conversation my mom often had with me when I was my daughter’s age about reading minds.

We moms are pretty awesome, aren’t we? Our kids come to us with no manual, no instructions. They’re really nothing but pee and poo machines who eat, sleep (if you’re lucky) and make messes. We’re expected to figure out that they have different cries for different needs and to know those needs based on the very small difference in the cries.

And yet we figure it out. But once we do, those darned kids change it up again. Suddenly they’re talking and we have to decode their toddler-speak. Then they’re preschoolers with brand new stresses.

And now we’re on the cusp of the teenage years and she’s got emergencies (not what people are probably thinking…aka, it was not a, shall we say, monthly type of emergency) and I’m decoding her hints and we’re working it all out.

The biggest thing for me when it comes to mothering that older girl? Talking to her, listening to her, spending actual time with her. We’re keeping the lines of communication open and she knows I’m here to help her with anything, even if it takes a little mind reading.

Monday, May 4, 2015

1 in 50,000

When Olivia was diagnosed with 5p- syndrome, the doctor who diagnosed her told us that only one in fifty thousand babies are born with this syndrome.

She asked us to consider how many people fifty thousand people were. Do we even know fifty thousand people?

This week is 5p- Syndrome Awareness week. The 5p- Society is trying to raise awareness for this rare syndrome.

Babies born with 5p- typically have a cat-like cry, which is where the name Cri du Chat comes from, which is another name for 5p- syndrome.

Olivia had that cat-like cry as a newborn. Her cry was so distinct that other parents with babies in the NICU would see me at another part of the hospital and tell me that while they’d been in the NICU with their own babies they’d heard my baby crying.

We were at Walmart one afternoon after Olivia had been released from the NICU and were in the baby department. Olivia was crying (she was pretty much always crying in those early months) and as we turned a corner, we saw another mom from the support group we attended on Tuesday mornings. She was with her own mother and she looked at her mom and smiled, “I told you I knew the baby that was making that sound.”

Yeah, she was very well known for her cry.

Olivia also had the reflux that is often found in babies with 5p- syndrome. It wasn’t until she was four months old that her doctors finally believed that she was crying more than the average baby. By then she’d started coughing a dry cough. We were given a prescription for Zantac and it changed our lives. Within two weeks of being on the medication, Olivia gained some weight and stopped crying. She would let us put her down, she didn’t spit up after every feeding, she slept better and she finally started growing.

But while the Zantac soothed her reflux, it didn’t help her reach other milestones, like holding up her head or sitting up unassisted.

Olivia was globally delayed. But still, even at nine months old, her doctor refused to even consider the possibility of 5p- syndrome. She was ‘too pretty’ he said. Which is insulting to all the beautiful children with 5p- out there.

I confess to a sense of relief when her doctor at Riley Hospital for Children finally gave us the diagnosis of 5p- syndrome. Olivia was two years and three months old. She started walking two months later. She started talking six months after that.

Her doctor gave us amazing advice. She said to take our baby home and love her. To let her show us what she could do. She said that Olivia was capable of so much more than most researchers would ever believe because all the research was based on children who’d been institutionalized since birth. Olivia had the benefit of a loving home, an older, typical sister who would show her amazing things and make her want to do them too.

To be honest, 5p- syndrome doesn’t really enter our minds all that much these days. Olivia is eight years old, in first grade, she runs, she reads, she talked in paragraphs. She’s got an amazing sense of humor and an imagination that doesn’t quit. She is not on any medications at all. She’s being watched for scoliosis but so far shows no signs of that.

The only time I really think about 5p- syndrome is when she’s chasing her sister, or helping her dad in the garden and I realize how much she amazed me, how far she’s come, how lucky we are that she’s here, with us, every single day.

Picture evidence of how far she's come:

Olivia modeling matching outfits with her favorite doll, Meredith and handwarmers I made because she found some in the American Girl catalog and HAD to have some.