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AandO

May 2013

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Feb 18, 2011 06:54pm (EST)

Olivia likes to ask me each morning, as I step out of the shower, "Are done chaking a chower?"

And I always answer in the affirmative. Because, duh, yeah, the water's off and I'm stepping out.

But I love that she talks so much. This is a child who isn't supposed to have much of a voice at all, a child, if born forty years ago, doctors would have strongly urged institutionalization.

So yeah, Sweetie, I'm done chaking a chower.

Alyssa's been sick enough to be out of school for the last four days. Yikes. She'd managed to get two certificates for not missing a day of school up to this week. And now? She's been pretty darned sick, obviously.

I called our doctor on Wednesday to see if he'd be able to see her. Because she'd never seen this doctor before the nurse told me that he wouldn't be able to see her until the next day, so if I really wanted her seen that day, I should take her to Urgent Care.

Our doctor was standing behind the nurse who was on the phone. He overruled her and instructed me to bring my feverish, achy child in to see him within the hour. LOVE that doctor.

This is the same doctor who told me that he was not capable of caring for my tiny, sick Olivia when she was three hours old and asked me which hospital I wanted her sent too. LOVE him for that too. He saved her life by being willing to say, "I can't help her. Let's find a doctor who can."

Wonder of wonders, Alyssa has ridden the bus for over a month and she still loves it. This has made my life so much easier. My mom's too. She catches the bus at my mom's in the morning and gets off there in the afternoon. Ohh, the freedom of getting to work on time. Holy cow, why didn't someone tell me about this wonderful thing called the bus years ago?

On the other hand, mornings are still hectic. With Alyssa sick this week, I've actually had time to actually dry and DO my hair two of the four days she's been at home. I know!! My dad saw me one evening and asked if I'd done something different with my hair. I was all, "Yeah, it's not in a ponytail like it ALWAYS is."

So there's that.

Posted by AandO | Comments: (2) | Permalink

IN OTHER NEWS

Jan 27, 2011 07:22pm (EST)

Olivia declared to my mother yesterday, "I don't want to pee in the toilet."

My mom had been lecturing Olivia on the proper place in which to deposit one's urine and O was quite tired of the lesson. She didn't want to hear any more about how 'big girls' pee on the potty. She wanted to play with her dolls and lay around in wet pants, thank you very much.

My mom asked her, "Where do you want to pee then?"

Olivia thought about it for a few seconds and decided, "The floor."

Not acceptable.

I suggested that I stop buying Pull-Ups for her and go back to diapers since they're cheaper. Olivia didn't like that idea any more than the one about peeing on the toilet.

We've regresses where potty training is concerned.

Last summer she was doing so well. She told us almost every time she had to go. She could stay dry for hours at a time.

These days? She can be put on the toilet every twenty minutes and still pee on the floor five minutes after getting off the pot.

It's gross. And frustrating. And really, really gross.

I don't know if this is just another aspect of the syndrome or what. Perhaps she just still has a very week bladder and doesn't feel the intensity of having to go like a typical child.

Then again, she's four. Four year olds are notoriously obnoxious (at least the two with which I have intimate knowledge are/have been), so there's always that.

On the other hand, putting aside all the grossness, I've got to admire her sass. She's thinking things through. She's developing arguments (sound or not, you decide) and retorts. I kind of love that.

Gymnastics is amazing for her. Not only has it boosted her overall physical strength, it's really helped her self-esteem.

We changed her class from a Mommy & Me class that took place during hours I was supposed to be at work to a time a little more convenient for me. I still have to leave work RIGHT at 4:30 to race to my mom's, pick up O and race back to town to get her to the class by 5:30.

And...it's not a Mommy & Me class. Or rather, it's not officially Mommy & Me class. Olivia and I have turned this Kindergym class into our very own Mommy & Me class.

I don't know what the other moms think as they sit in the waiting room and watch through the window at their adorable little four and five year old daughters prancing around, tumbling, jumping, flipping, dangling and flopping and there we are, me helping Olivia through the routines, directing her from one obstacle to the next and showing her body how to complete the desired action.

And quite honestly? I don't care what they think. Maybe they think, "What the hell? Why is she out there? What's so special about her kid that she gets to be out there?"

Or perhaps they think, "Wow, her kid needs a little extra help. I'm glad that mom goes out there to help her so that she doesn't take the instructors time away from my kid and all the other kids who just need a little help/guidance."

It could be none of the above or a combination of the above. Who knows?

Olivia's syndrome isn't written across her face. Most people aren't even aware that there is anything different about her. And I like it that way, even when I'm making her a little different by joining her on the gym floor as the only mommy in a kindergym class.

My point? I want moms who know their kids need something like gymnastics, ballet, dance, or even soccer but who also know that those same kids need a little extra help? Don't be afraid to give them the help. don't be afraid to ask the instructor if you can join the class if it will make his/her job easier. Don't be afraid of drawing attention to yourself or your child. In the long run, those few minutes each week won't matter except that they're helping your child get stronger, be more confident, more sure of their own place in the world. And that is priceless.

Posted by AandO | Comments: (5) | Permalink

LEARNING

Jan 20, 2011 01:20pm (EST)

I am in constant awe of the women here. Those of you who went through day after day, week after week, month after month of having a baby in the NICU. Those who suffered the unimaginable pain of losing a child, you all amaze me.

People come to this website every single day, looking for comfort, for peace, or even just for company as they face another day in the NICU or another day without a piece of their heart.

I've learned so much from all of you. I've learned the courage and strength are sometimes invisible unless you know where to look.

I've learned that sometimes the smallest gesture can make the biggest difference.

Last week, we got a new employee where I work. As the HR coordinator, it was my job to do a quick orientation for her on her first day.

Ten minutes into our conversation, she let it be known that eleven years ago, she lost a daughter to leukemia. Her daughter was 20 months old when she was diagnosed and she died almost a year later.

Because I've learned from all of you, because I have had the honor of reading your words, hearing your pain, and knowing that this isn't something that ever goes away, I asked her what her daughter's name is.

Abby.

Abby died when she was two and a half years old and her mother, eleven years later, is still grieving.

I let her talk. I told her how sorry I am that her daughter is gone. And five minutes later, she gave me a watery smile and followed our safety director to another orientation.

I'm so grateful to all of you for teaching me how to say...not the 'right' thing, but perhaps how to not say the wrong thing. This mother didn't need me to say something trite like, "Well, at least she didn't suffer beyond that year."

I know that if my child were sick, I'd do anything, ANYTHING to give her one more day, one more hour in my arms.

I'm learning. Every single day, I learn from the parents here who have suffered in ways I will never understand, never comprehend.

But I'm grateful that Share exists so that everyone has a safe place to air grievences, to share proud moments from kids some doctors said would never have moments like that.

And I'm grateful that I'm able to give even a moment of comfort to any parent whose path I might cross and who might decide to share such a private pain with me.

Thank you. All of you. Thank you.

Posted by AandO | Comments: (6) | Permalink

THIS SIDE OF THE MICROPHONE

Nov 12, 2010 07:41pm (EST)

Stolen from my other blog because I feel like those who are still in the midst of the pain and stress of the NICU might like to read a story of one who is farther out, who has come out the otherside, so to speak:

The girls and I are heading south and slightly west this weekend to Bloomington, Indiana to attend the IU Dance Marathon.

This will be my second dance marathon as a Riley mom.

The first was Purdue University's dance marathon last year. I actually managed to speak to the crowd without sounding like an auctioneer.

Though this will be my second dance marathon as the parent of a child who has been helped by Riley Hospital for Children, it will be my third dance marathon to have attended.

Back in 1993, I was a participant in the Indiana University Dance Marathon.

What an experience.

It was one of those things you're glad you did but that you swear that you will never, ever do again. It was exhilirating, exhausting, thrilling, terrifying.

I remember one of my very best friends, Elizabeth, asking me early that academic year if I'd do the dance marathon with her. I'd never heard of it and had no clue what it was all about, but I'm always willing to go on adventures with good friends. I've been blessed to have friends who feel the same. (St. Louis, right Julie?)

So when I agreed to E's request, I had no idea what I was getting myself into.

I attended the meetings, the gatherings, the training sessions where we were given tips on fund raising. But I didn't really get why we were raising funds. Sure, sure we were benefitting Riley but, at 22 years old, that didn't mean so much to me.

What I remember about those 36 hours on my feet is the noise. I remember the crowds, the chaos, the orange plastic fencing they put up to keep the spectators on one side and the 'dancers' on the other. I remember being allowed to sit for five minutes at a time while we ate and for another few minutes every few hours while volunteers rubbed our backs and feet. But it was never enough.

The exhaustion set in about 24 hours in and we still had twelve hours to go.

I remember people getting on stage and talking but I don't remember what they said. And quite honestly, I don't remember seeing a single child there.

The dance marathon I attended last year was so much different. For me, at least. I was a Riley mom. I was on the other side of the microphone. I was the one talking about my Riley kid. I was the one telling how much Riley Hospital for Children helped our family.

I was the one watching these amazing college students make both of my kids feel special. I watched them dance with Olivia and color with Alyssa. I watched them hold Olivia on their shoulders so she could watch another child dance on stage.

I stood back and took it all in, this time, the exhaustion wasn't there because, as a mom, I got to go sleep in a comfy hotel room (about which Olivia declared, "I don't like this creepy house.") and go back, refreshed to watch these tired, amazing people celebrate as the total donation was announced.

It's an amazing experience, one I'm going to do again this weekend and again in about three weeks at Purdue again.

How lucky am I that I have been on both sides of the microphone? Why was I so blessed to be surrounded by such amazing people who care so deeply about my kid and all sick kids who need a hospital like Riley?

This will be my first time back in Bloomington in about 15 years. I spent five years of my life there and then didn't look back. I've missed that place and feel so very lucky to be going back for this very reason. I can't wait to show my girls a place that made such a big impact on my life.

And quite honestly, I have to say that I prefer this side of the microphone. I might miss the body I had in my early twenties (one I didn't appreciate AT ALL, I totally thought I was fat, so stupid!) but I don't miss that life. I've lived that life and I'm so very blessed to get to live this one now. This life that has put me on this side of

Posted by AandO | Comments: (2) | Permalink

FITTING IN

Oct 05, 2010 05:37pm (EST)

There's something about finding that place where you fit. That place where you know you can go and the people there will understand you. They'll get why you're sobbing with joy that your child can walk up the stairs using alternate feet at almost four years old (oh, yes she can!) or why you're sobbing in agony at the senseless loss of yet another child.

That's what I found over three years ago when I found Share.

I was lucky, though.

I already knew someone here, someone who'd taken the lonely step before me to open herself up and share her story.

I was lucky that I knew that one person would read and accept me, even if no one else did.

I hope we can all continue to be that place where newbies feel safe, comfortable. That we can continue to welcome people with all different kinds of stories, be they just beginning at the NICU that very day or years past the NICU. The scars remain even after the wounds heal.

And sometimes, the wounds never heal, they never get better and that's one more reason for us to be here, our arms and hearts open, ready for the next story, the next broken heart, the next superstar of the NICU, so that parents can know that there is somewhere they can go where people understand. Where people care.

That's us. And I'm so proud to be one of this amazing group.

Posted by AandO | Comments: (7) | Permalink

KATIE HOLLEY'S JUST SAYIN'

Oct 04, 2010 05:51pm (EST)

Ahh, Share Union...what can be said about a weekend spend with people who get you just with a glance. People who accept the good, the bad, the sobbing.

This was my third Share Union. And yet again, it was amazing. I became reacquainted with friends I hadn't seen in a year (or two, right Donna and Kari?) I met new friends (hi, Shannon and Lindsey.)

I got to see Micah in all his lopsided grinning glory. The toes on that boy? Oh, they almost make me want another. almost, but not quite. He's awesome, though. Just that perfect mixture of boy and baby all rolled into the sweetest little guy you could ever meet.

And best of all? I got to room with Julie again. Ahh, the fun to be had there (right Katie?)

While at Share Union, though, I was reminded that we're here to serve a purpose. We're here to support, each other and anyone else who comes along.

I haven't blogged in a bit. I check in quite often, comment here and there and make sure everyone is hanging in there. But...I started blogging somewhere else because I'm a bit out from our NICU stay. I'm even farther away from the day we finally got O's diagnosis.

We're good. There were days when I wondered if maybe we were doing too well to be here.

And yet...Share Union reminded me. People need to read our story too. They need to know that there is light at the end of the tunnel, that we do smile and laugh and dress up for Halloween again. The ups and downs end. Sometimes, they end on the down side but at other times, they end on a high note and things just even out.

And that's where we are. We're even. And I like that. And I want to keep sharing that with you all because I think newbies need to know that at some point, it just might even out for them too.

Yeah, I'll still be blogging at This Side of Ordinary but I'll be here more often, just because I need you guys and I'd like to think you need me too, if only just a little.

So bless your heart, you're stuck with me.

Posted by AandO | Comments: (6) | Permalink

DEFECT

Sep 08, 2010 02:18pm (EST)

As September wears on (a whole eight days gone already) and we edge into October, I am anticipating my trip to Atlanta where I'll meet with some of the most amazing women I've ever met.

We'll gather to talk about the March of Dimes and how this wonderful organization has helped each of us with our premature children, or our children who suffer from a birth defect or, worse yet, those who have lost children either in infancy or later in life from complications that arise from prematurity or birth defects.

My beautiful friend Julie has been charged with the responsibility of creating a tribute to our children, a video that will be shown at a ceremony of remembrance.

She's putting the pictures of the kids into categories and we were talking about those categories the other day.

The category that Olivia fits into is that of Birth Defects.

Julie and I agree that we don't like that title. I said something like, "When I look at Olivia, I don't see a defective child."

I don't see her syndrome as a defect. Yes, it's given her challenges, but...defect?

Not so much. Not this little girl who is STANDING ON HER HEAD these days. Not this child who races after her sister and cousin, keeping up as they all sprint from room to room. Not the kid who gave her Papa Tom the thumbs up after a hearcut last week because she knew it would make him happy.

No.

Olivia is not defective.

But...

She does have a chromosomal disorder.

That's what I said to my mom this morning. If I were asked how I'd describe Olivia's syndrome, I'd call it a disorder. She's missing part of one of her chromosomes. And while even disorder seems to have a negative connotation, it's better than defect. I think. See, while her chromosomes are in disorder, she is not. She's pretty awesomely ordered.

And I know we got REALLY lucky with her.

The parts that she's missing have affected her muscle tone but not her sense of humor. Not her sense of style. Not her humanity or her ability to think her way out of a problem.

She's amazing, missing genetic material and all. And while I'll still send Julie those pictures of Olivia and I'll attend our conference and cry at the Remembrance Ceremony and laugh a little afterward as we sooth our emotions with a Sabrina Slammer or three (or is that only served in D.C.?) I'll always have a small problem with the word 'defect.'

In time, we'll all work to change the wording used to describe our children. We'll continue to meet up once a year face to face and daily online and keep working to change the way society as a whole sees and treats our children. One word at a time.

Posted by AandO | Comments: (7) | Permalink

COPY AND PASTE

Aug 24, 2010 06:20pm (EST)

I realized yesterday that I've left up a post about poop for an awful long time. Too long, in fact. So I'm copying and pasting something from my other blog because this is as good a place as that place for this post. And....it's about sleep!!! I know, ONE MORE POST ABOUT SLEEP. Whatever, just read

:

I've mentioned before (countless times, really) that my girls sleep with me. At my mom's, Olivia and I share a full-size bed and Alyssa sleeps on a twin bed in the same room. At our old house, Alyssa had actually moved into her own bed when she was six, but over the following year, she'd managed to put her self right back into the queen bed that Olivia and I share.

Poor Tom has been firmly nudged onto the couch.

As we've gotten settled into the new house, the girls and I have spent the last few nights at my mom's, as we would have had we not bought the new house. And, since this is the week Alyssa started her new school, she's moved from her mats on the floor in our room (the twin bed she was on was moved to another room as my mom anticipated getting her house back) and into the full-bed.

That puts a 57 pound seven year old, a 30 pound three year old and a more than 57 pound 39 year old in the a bed that is maybe big enough for two teenagers who are just discovering the joys of sleeping together.

It's not pleasant.

And when we go in there to go to sleep, Olivia insists upon laying side ways, with her head on my stomach and her feet in her sister's ribs.

It makes for a less-than-pleasant bedtime routine because of course, Alyssa is less than appreciative of her sister's feet jamming into her side. I don't blame her. I don't especially appreciate the head that is pressing on my bladder.

But in the end, we all finally fall asleep. Or, at least, they do.

Olivia gets turned so she's laying properly on the bed, curled up against her sister.

And I slip out of bed and crawl onto the mats on the floor, where I attempt to go to sleep, waking through the night to switch sides as my hip begins to ache from the hardness of the floor.

Most nights, I'm woken by Olivia crying at the door, attempting to open it in her frantic search for me.

I get back into bed with her and Alyssa, who has managed to turn diagonal in the bed so that her feet are now competing with mine for the same space. Olivia crams her thumb into her mouth and settled her head on my shoulder with my arm beneath her and I try to go back to sleep, hoping against hope that my lower back won't cramp in the night.

by morning, I'm ready to get up just so I can stop being touched.

Last night, though...

Last night, after the girls were asleep, before I took my place on the floor, I put a pillow against the side of Olivia that wasn't snuggled up to Alyssa.

And when I woke up this morning, I realized that I'd had a full night of sleep, with no interruptions, no one kicking me, no one wanting to lay on my arm, no one whispering, "Squishy boobies," as she plumped up on such squishy booby to use a pillow.

It was wonderful. It was the best night of sleep I've had in a year.

It goes to show how bad my sleep is the rest of the year if a night spent on the floor on a couple of mats ranks one of the best.

It also explains why one of the greatest parts about attending the March of Dimes ShareUnion each year, for me at least, is the fact that I get my own bed for two whole nights.

Posted by AandO | Comments: (5) | Permalink

THE POOPY SIDE OF POTTY TRAINING

Aug 02, 2010 04:47pm (EST)

As we entered this summer I hadn't given much thought to potty training Olivia. I'd done my research (against medical advice) and found that most kids with 5p- don't potty train until at least seven years old. I figured we'd try with Olivia when she was five.

My mom wasn't having any of that. She informed me that she was NOT changing diapers for another two years.

And so began Operation: Potty Train Olivia 2010.

And it worked. My mom knows my child better than I do.

But since O was so open to the experience, I went with it. I have learned her signals (holding herself when she has to pee, laying on her side on the floor when she has to poop

, etc)

And so far we've done well. Olivia has her stubborn three-year-old moments when she is holding her crotch and still insisting she doesn't have to pee or telling me she isn't pooing when I can SEE the turd poking a 'tail' into her panties.

Yesterday, though, was tough. She peed on the floor three times because she was just too busy to tell me she had to pee and I was too busy in other rooms (either cooking or packing to move things from room to room as Tom does home-improvement projects) to catch her signs.

The peeing on the floor is bad enough but the child pooped in her panties TWICE in the span of two hours. Obviously, she wasn't finished the first time even though I took her and her loaded underwear to the bathroom where we flushed the evidence and she sat on the toilet for another ten minutes with a magazine.

She's never punished for these 'accidents.' I get that she's three and she's still learning. But she's been assured over and over again that she can go back to whatever she was doing as soon she's done in the bathroom. I know, again, she's three but...it can get really old to have to clean pee off the carpet or pick up a man-sized turd off the bathroom floor after it's plopped out of her underwear as I attempt to get her on the toilet.

It's just gross.

But I know it's also just growing pains. My baby is growing up and that's awesome, even while it's gross.

Posted by AandO | Comments: (2) | Permalink

CONFIDENCE

Jul 14, 2010 01:06pm (EST)

I have never thought of Olivia as lacking in confidence. She's a pretty smug little girl.

But...physically, she's timid. Nothing has ever come easily or naturally to her in the physical arena, especially the gross motor skills that most kids just know how to do, like sitting, crawling, walking. She's had to be taught each of those things. She's had to watch other kids do them and try to emulate them.

Because I found her physical therapist through the school system to be lacking we put her in gymnastics this summer.

She's had five classes.

She's blossomed! The confidence this child exudes is amazing. It's as if she's suddenly realized that her little body is capable of so much more than she'd ever imagined.

She's doing the three-year-old version of a cartwheel (put hands down, hop from one side to the other.) She can do somersaults like the best of them, not even hesitating as she rolls over and over and over.

She's climbing on everything these days and JUMPING down. Her balance has improved immeasurably. She seems sturdier.

I knew gymnastics would improve her core strength, but I didn't know it would happen so fast. I had no idea how much it would improve not just her physical abilities but also her sense of self, her knowledge that her body can do whatever she wants it to do.

This has been invaluable to her. It's something that I didn't even know she needed until we found it for her.

Every single day, this child amazes me and I'm so honored to be the one to watch and help her navigate her way through this world, one somersault at a time.

Posted by AandO | Comments: (3) | Permalink

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