Monday, October 24, 2016


Olivia and I loaded up the car on Saturday and drove 162 miles from home to Purdue University for a dance marathon to raise money for Riley Hospital for Children.

Fun was had by all and it was great.

But…the time leading up to the trip was fraught with anxiety on my part.

See, this was the first time O and I had done this kind of thing alone. Usually Alyssa goes with us. But this year, she wanted to stay home and attend the birthday/Halloween party of one of her friends.

I figured that at thirteen years old, she’s old enough to make that kind of call and since Tom was home to take her to the party and pick her up the next morning, it really didn’t make sense to make her go with me and Olivia when she just didn’t want to do so.

But without Alyssa, it was just me and Olivia.

Which is fine, right?

Except…what if we were in an accident and I was unconscious? What if strangers tried to talk to Olivia, who looks like your typical nine year old girl and she just sat there? What if she was needed to tell them who she was because I couldn’t do so?

So I made a sign for her. It sat on the seat beside her and said, “My name is Olivia Ordinary. I have 5p- Syndrome. I am non-verbal. I my mom can’t respond, please call my dad, Tom Ordinary at XXX-XXX-XXXX…”

It also listed my mom’s name and her landline and her cell.

And the more I thought about that sign, the more freaked I got. I mean…obviously, we didn’t even need this little piece of paper with names and phone numbers on it. But I worried. I worried so hard.

But my worry transferred itself to the route we were taking.

The last time we went to Purdue University was two years ago and I missed a turn and got all turned around and flustered.

And damn it, West Lafayette is so freaking confusing. Of course it is. It’s a college town, so there are a bazillion one-way streets. It’s a nightmare when you only go there one time a year. So yeah, I was stressed about the drive.

But I probably wouldn’t have been nearly as anxious about the whole thing if it hadn’t just been me and Olivia going. Just the two of us…

We did it, though, because she really wanted to go. She doesn’t talk much (at all?) to the college student who is assigned to be her ‘buddy’ but she did go draw on a big dry erase board while I ate the dinner provided for us. And she and Sarah danced as we waited to go in and be introduced with all the other Riley families.

And in the end it was fine. I made the right turn at the right place and didn’t have to backtrack during the drive. I made all the right turns onto all the one-way streets and made it to our hotel with no problem.

Sure, we had to go back into the hotel twice to finally get out of the parking garage but that was low stress too.

I’ll probably keep that sheet of paper with Olivia’s name and the phone numbers in my car just because, well, it’s a good idea. I mean, even if Lyss and/or Tom were with us, well, we could all be incapacitated and she’d still need to be able to communicate and handing a piece of paper to a stranger is way more likely to happen then her suddenly speaking to them.

It’s just one of the things we have to worry about because we have a mostly non-verbal child. Sure, she’s not non-verbal at home but get her around anyone who is not immediate family and she’s clams right up.

If she could help it, I’d get frustrated but I don’t think she can. I honestly think she WANTS to speak to others but she can’t force the words out. And so for now, we’ll pass notes as necessary. The written word is still a form of communication and I’m going to run with it for as long as she needs me to.

Friday, October 21, 2016

And Then I Took a Nap

Last night when I got home from work, Tom informed me that Olivia had one page of homework to do.

I opened her folder and found THREE pages of homework. One was something she’d obviously started at school but hadn’t finished so it counted as homework because, yeah, we needed to finish it.

We sat down to work.

First we did the math. It was subtracting three digit numbers. No biggie, really. Except she also had to write an estimate of what she thought the answer would be AND come up with an number model of how she came up with the estimate. Ugh! So much busy work. I mean, seriously?

THEN! Then she was supposed to write a sentence on the back of the math worksheet explaining how she’d come up with one of her answers. I was all…what? For real? What were they even looking for? I truly didn’t understand what the point of that was. She subtracted…duh.

In the end, that’s what she wrote. “I used subtraction to find the answer.”

I’m sure whoever wrote the worksheet wanted a more in depth answer, such as, “I took four from seven and got three. I realized I couldn’t take seven from six, so I borrowed from the five, which made the six sixteen and the five four…”

Yeah, that wasn’t going to happen. Honestly, I don’t even think it would have happened with a typical third grader but it definitely wasn’t going to happen with MY third grader.

So the second worksheet was questions about a story we’d read the night before. They wanted to know pretty specific detail and I finally, by the end, just wrote by the last two questions, “We do not have this book at home. We cannot answer these questions.”

We had to study spelling for the test today. “Studying” entails me telling Olivia the word, her writing it down. I snapped at her after the first word, “You don’t have to write in GIGANTIC letters.”

In my defense, I was tired.

So she went the other direction and tried to write as small as she could. Sigh. I told her, “If you’re concentrating more on the size of the letters than the actual words you’re writing, you’re not actually getting anything out of this exercise.”

Then I had to fill out her reading and math log. I know she’s probably supposed to do it herself but , come on, it needs to be legible, okay? Each week, we have to do a second page of the reading log. It’s always a little different but it’s basically trying to get her to actually read for content rather than reading just to prove she can read the words.

When that was done, I had been home for forty minutes and hadn’t even taken off my shoes. I did just that and joined Tom in the living room where he was watching television. I told him I was going to lay on the couch in protest of homework.

I fell asleep about three seconds after laying down and work up over an hour later.

And that’s how I ended up taking a nap on a Thursday evening.

Tuesday, October 18, 2016

Everything and Nothing

I fought for over two years to find Olivia’s diagnosis. I have two years’ worth of posts (almost daily for a while) in the archives of ShareYourStory where I lamented not knowing what was wrong with my baby.

I also spent a lot of time talking about sleep because back then I was getting very little of it.

But that search for a diagnosis was very much the focus of a lot of my posts. I thought having a diagnosis would change everything.

In the end, it actually changed nothing.

We continued with therapies. We continued loving Olivia. We went on with treating her like Alyssa’s little sister, expecting that she would walk even if the research her doctor told us not to do (duh, of course we researched 5p- syndrome) said she wouldn’t walk.

We continued to talk to her even though the research said she would never talk back to us.

And I continued to post at Share. I continued to lean on the women I’d met there, women who were further in their journey and who understood my desperate need to help my baby be the best she could possibly be.

Nothing changed.

And yet, everything changed. Suddenly, having a diagnosis of 5p- syndrome (aka Cri du Chat) meant we had an answer to why Olivia only weighed five pounds and two ounces even though she was born nine days past her due date. That’s 41 weeks, two days gestation for anyone counting.

We now knew why she didn’t sit up until she was a year old, didn’t crawl until she was seventeen months old, why she didn’t walk until she was twenty-nine months old.

That answer meant the world to me; even if it didn’t really change anything.

It changed my heart. It gave me something to focus on. It let me see that even at two years old, Olivia was already defying the odds that the research gave her. It showed me that she was amazing and I was allowed to be so proud of her just for being her. Every single milestone started to mean even more than it already had meant, which was a huge morale booster.

But nothing changed when I thought about Olivia and who she was. She was still my feisty, stubborn girl who rolled her eyes at her occupational therapist. She was my second born, my baby, who fought so hard to learn everything that came naturally to her sister and her cousin, who was a year younger than she was.

She was still my competitive sweetheart who watched that one-year-younger cousin walk and decided that damn it, she could do that too. And so she did.

Getting that diagnosis opened a whole new world for us. It brought new Facebook friends into our world to show us that we were alone in this world of 5p- syndrome. Even though the statistics say that only 1 in 50,000 babies are born with 5p- syndrome each year, there are lot of these amazing kids out there. And their parents love them as much as we love Olivia.

But still, the diagnosis changed nothing when it came to my main source of support, which continued to be ShareYourStory. This is the place where I vented before the diagnosis and it’s where I’ve continued to post both celebrations and frustrations for the past almost eight years since receiving Olivia’s diagnosis.

This place is everything to me. It’s provided lasting, deep friendships for which I am so grateful. It’s a place where I can vent, where I can laugh and cry and not feel judged for anything that’s happened.

It’s a place where I can give back to others who are facing diagnoses of their own, who are facing NICU stays, who have been dealt the most difficult journey of all, a world without their child. In this place, we can support each other, lean on each other, be each other’s everything while expecting nothing in return.

Monday, October 17, 2016

The Best of Friends

I got home last night at about 8:40. I was supposed to be home around 7:00 but my flight from DC was delayed by an hour and then, it was raining in Detroit. I hate it when it’s raining and I have to drive roads in the dark that I’m not very familiar with.

But I made it.

And it was worth it.

My weekend was so lovely in so many ways. My flight out of Detroit left right on time and actually arrived in DC early. EARLY!?! I know, right?

I was the first one to arrive at the our destination city and so I was able to buy the girls souvenirs before meeting with the first of many friends who were coming in from all over the country. Around 11:30 the last of our core group arrived and we made our way to our hotel where we were lucky enough to be able to check in early and drop off our bags.

We managed to get a little sight-seeing in that afternoon and spend the evening laughing and, for some, (not me) drinking. Much bawdy laughter ensued during a crazy game of Cards Against Humanity.

I was lucky enough to room with Julie and Laura. And these two generous, gracious women let me have my own bed. See, they’ve known me for what seems like forever at this point and they know that Olivia STILL tends to join me in my own bed more often than I appreciate (once is more often than I can appreciate these day…just saying.)

But because they’re loving and generous women, they made sure I wasn’t missing home too much.

At one point, Julie pulled up Pentatonix’s cover of the song Cheerleader so I wouldn’t miss Alyssa too much.

And on Saturday morning, after Julie and Laura worked out at the hotel gym (I did not join them because, well, because I didn’t want to) Laura climbed into bed with me and asked me to scratch her back.

I responded to her the same way I respond to Olivia these days. I rolled away from her and muttered, “Sleeping.”

Everyone should have friends like this.

Wednesday, October 12, 2016


This time for the past, oh, eight years, I’ve gone away for a weekend. Away is in, alone, leaving the kids home with Tom. I’ve been to places like Houston, DC, Orlando, Atlanta, Phoenix and this year, I’m heading back to DC for three days and two nights.

I leave on Friday morning and will get home Sunday evening.

So yes, one weekend out of each year, I leave my family.

Yesterday morning as I walked into the kitchen, I heard Olivia ask Tom, “Why does Mom always have to go away?”


Obviously, this amuses me. I mean, 1/52 is not always. But when you’re nine years old and your mom is kind of your whole world, it feels like she’s always gone because that one weekend feels like it lasts forever and it blocks out all those other 51 weekends when Mom is home.

But it’ll be okay. They’ll be fine and next weekend they’ll probably have forgotten that I was ever even away…until next year, when Olivia laments again, “Why does Mom always have to go away?”

Never fear, I am leaving them well stocked. There is plenty of soup (never again will I leave them with the possibility of running out of soup!), I made oatmeal raisin cookies (Tom’s favorite) last weekend. This evening I’m making triple chocolate chip cookie (Olivia’s favorite) and sugar cookies (Alyssa’s favorite). The girls and I are going to the grocery store tomorrow after Lyss’s orthodontist appointment to get any other staples needed for the 64 hours I will be gone.

And, get this, there is a grocery store a mere ten miles away from our house. And even better, this grocery store allows men to shop there. I know!! So even if they do find that I’ve somehow failed them, Tom and the girls can get in his car, drive to the store and BUY anything their little hearts desire.

And because she’s a freaking hero, my mom is picking the girls up on Sunday around noon and taking them with her to a baby shower for my cousin. So they won’t actually be stuck in the house all weekend as they both feared.

Seriously, it’s going to be fine.

And best of all? I get to hang with some of the most awesome women I’ve had the honor of meeting and we’re all going to try and come up with more ways of supporting families who have lost babies, have babies in the NICU or bring home babies with birth defects.

This whole always leaving my family thing? It’s for a good cause.

Monday, October 10, 2016

Fall Fun

For the past four years, the girls and I have made a point of visiting a local farm and navigating their corn maze.

They have a wagon ride through the woods, a ‘train’ ride for the kids, which is really these weird plastic barrels with a side cut out of them on top of sets of wheels and then pulled by a tractor.

This year we invited my mom and my nephew Jaxon to go with us.

It felt like the perfect day to spend several hours outside. The sun was shining, there was a breeze blowing and it was a chilly 60ish degrees, which made jackets perfect and cozy.

As always, when we first arrive, Alyssa and Jax had to climb the stairs and go down several slides made from weird yellow piping/tile.

Olivia tried but got scared on the first landing of the stairs and I had to ‘rescue’ her. If Alyssa hadn’t already gone down the first slide, she’d have brought her sister down, she’s awesome like that. But since she was already on the ground on the other side of the apparatus, I went up the stairs to help Liv down.

Then Jaxon had to climb into the corn bin and scoop corn for a few minutes.

There were games to be played, tricycles to be ridden and let’s not forget about the maze we needed to navigate.

We finally headed for the maze with Lyss leading the way. She’s pretty good with the map.

Jax insisted on being right by her side and Liv wasn’t going to be left out so my mom trailed behind them, only giving directional advice when asked.

Alyssa rocked that maze. She OWNED it. It was really fun watching her confidently take turns and twists and backtrack when necessary. She’s just a perfectly awesome kid.

The littles (because in our world, even at eight and nine, O and J will always be The Littles) stayed right on her heels, following her blindly through the maze, trusting their hero to bring them out without any trouble at all.

After the maze, Lyss and Jax rode on the ‘train’. It was adorable.

Then we took the hayride through the woods. It was the perfect length, long enough to be worth the wait but not so long that two year old Connor (Jaxon’s little brother) got bored with it.

After the hayride, we wandered around a little longer, bought some gourds, my mom bought a beautiful bluish purple mum and then we headed home.

I’m thinking all three kids slept well that night. But I wouldn’t know because they spent the night at Gram’s. Which, of course, means I slept incredibly well because there were no calls of “Mom!” through the night.

Friday, October 7, 2016


Wednesday evening was rough in our house. Olivia couldn’t seem to fall asleep, tossing and turning and just basically driving me crazy on the couch.

Alyssa had found a new video (to her) of Avi Kaplan singing and playing the guitar. She wanted to watch it over and over.

At 9:10, Olivia asked tiredly when we were going to go to bed. I told her to just try to sleep right there and she sighed and rolled over again, digging her shoulder into my thigh.

I looked over at Alyssa, who was starting obsessively at her tablet. She saw me looking at her and sighed, “How have I missed this video all this time?”

I may have rolled my eyes at her. I mean, sure, I get it. She’s thirteen and she’s crushing hard on all of Pentatonix but Avi’s absolutely her favorite and so…I do get it and yet, at that point, I was over it

So I told her we were going to bed soon.

She sighed a different sort of sigh this time and said, “Can I just watch this one more time?”

I sighed (there was a lot of sighing going on in our house that night) and muttered, “Fine.”

It hit me. I was NOT being a nine mom that night. I was dipping into the low sixes if you must know. I was tired, I was irritated that my children would just NOT go to sleep. I wanted ten minutes of not having a one child rolling on me and another child talking to me about a group that I, while I can appreciate their talents, I’m kind of tired of hearing about.

I was just kind of done.

Olivia rolled over AGAIN and I stood up, pushing her off me. I declared, “Okay, let’s go. Sorry, Lyss, but I can’t do it tonight. That video will be on the internet forever. You can watch it more tomorrow. Come on, Liv, let’s get you into your bed where you can toss and turn all night long and NOT dig your elbows, head, and shoulders into my leg.”

Yeah, I was a real treat by this point.

We trudged up the stairs and as I was tucking Olivia in, she stopped me to ask me, “What about my Monster High blanket?”

I rolled my eyes and snapped, “Am I done tucking you in? Have I stopped and walked away? Of course I’m going to put your Monster High blanket on you…if you’d give me a chance!”

Again, not my proudest moment. But this child…she can make me crazy when she asks me to do the very thing I was just about to do if she’d have waited ten seconds before making her demand request.

I finally got her tucked in, Monster High blanket and all, kissed her goodnight (gently) and wished her sweet dreams when Lyss came into the room for her hug.

I apologized to her for being so grumpy and promised that tomorrow I would try hard to be better.

She assured me that she thinks I’m a perfectly fine mom and we went to bed.

So many sighs.

On my way home from work last night, I decided that I needed to go into our evening as if I were a robot who’d been programmed to be kind and loving. I told the girls this because I knew it would amuse them and they both told me that I’m weird. But they said it with a smile as we sat down to dinner so I felt like that was a win.

By the time we made our way upstairs to be that evening, I could happily say that I’d done it. I’d managed to be kind and loving and attentive to my children for most of the evening. I hadn’t yelled or grumbled or become overly frustrated at any point.

I think I need to do the programmable robot thing a little more often, if only because a loving, attentive mother is nothing less than my children deserve. Does ‘programming’ myself make it less real?

Nope, at the end of the day, getting attention is attention and love is love and that’s what they need from me. Of course, they also need rules and limits and to sometimes be reminded, kindly, that even Mom has her limits and that’s okay too.