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Tuesday, September 2, 2014

Raising Spiritually-Full Children Without a Specific Faith.

Brian and I have made no secret about our Agnosticism. We are both former Catholics who spent some time considering our own religious paths independently, only to come to similar conclusions around the time we met in college. Our beliefs are pretty simple in that we refuse to define them. We are not godless, so to speak; I believe that there is likely some greater force in this world. But I struggle in giving this force an identity. And despite what some may doubt to be true, I am spiritually full.

Interestingly enough, I teach in a very conservative and religious community. My students are church-goers and take pride in their faith. And I respect this. While it’s not what I believe, I admire the power of their convictions and the people they are as a result of their religious upbringing. These kids are honest, thoughtful, selfless, and hard-working. They are true Christians. They are, for all intents and purposes, everything I want my children to become. 

So when Atticus mentioned Jesus the other day, I realized it’s time to start thinking about faith and its role in my boys’ upbringing. I will not force them to ascribe to a certain way of religious thinking, but I will encourage them to be spiritually full. In other words, I don’t really care what they choose to believe so long as they’re thinking about it, questioning it, and ascribing to a system of beliefs that honors kindness, empathy, and compassion for those around them. We don’t know exactly what that’s going to look like yet; we’re still ironing out the kinks. But we do know that a few tenets that will guide us along the way:

1. Religious Education

The first step towards respect is understanding. In college, I was in the middle of a civil, yet somewhat heated debate with my devoutly-Baptist friend. When I asked him why he was so sure his faith was the right one and not, say, Islam, he plainly told me “I don’t need to know about that because it isn’t the true path to God.” I can’t abide cyclical reasoning and at that moment I ended the conversation. But I continued to be amazed by how many religiously righteous people new next-to-nothing about faiths other than their own. It astounded me. So my children’s spiritual education will involve visits to temples, mosques, churches, and other houses of worship. They will learn how people all over the world choose to honor their god(s), not just those who live in our community. I wish more young people took the time to explore other religions; those who acknowledge and respect differing outlooks are the peace-makers, the problem-solvers, and the pioneers.



2. A Commitment to service

One of the noblest aspects of organized religion is their commitment to service to those in need. Homeless shelters, food and clothing drives, and soup kitchens are often the work of religious groups because most religions preach the need for selflessness and service. My children will learn the value of self-sacrifice in an effort to help those less fortunate, and we will volunteer both our time and material possessions to see these lessons through. Because developing empathy and helping those in need is good for the soul and society. 


3. Open dialogue

I was always told to avoid conversations about money, politics, and religion at the dinner table because I could never change a person’s mind on any of those topics. And for the most part, I agree. I’m not going to debate the Book of Revelations with my colleagues over lunch, but I do want my children to feel free to ask questions. I want to erase the notion that religion is a taboo discussion, especially if its done with a level of mutual respect. I want them to open their minds to the many possibilities. And if they choose to have faith in a certain dogma after exhausting every query, then so be it. I respect that. But to believe in something without questioning and searching for truth is not really believing in much at all. It’s apathy. The questions might never be answered in absolutes. Heck, they might not be answered at all, but at least they’re being considered.



4. Connecting with nature

With our over-connected world and the constant onslaught of flashing, buzzing solicitation, it’s easy to lose one’s sense of inner peace. I am a firm believer in the power of nature. In fact, I might even argue that nature IS my religion. So taking the time to literally smell the roses and find my inner dialogue is an important part of my spiritual health. I’m not anti-technology. My kids watch TV. We live in the smoggy inner-city and drive our SUV to work and school every day. But I also instill in my children the idea that nature has power. It is a reminder of where we came from and where we are headed. So we need to take time to be outside, walk to the park, hike in the mountains, camp at the lake, swim in the ocean. It’s when we realize just how small we are in this vastness of nature that we can truly begin to consider why we’re here in the first place.

Thursday, August 7, 2014

Quinn's Hand Surgery

I am writing this post at the ungodly hour of 5am from the lumpy armchair next to Quinn's hospital bed. Our little trooper just underwent hand surgery to release the syndactyly (fused fingers) on his right hand. While it was a relatively routine procedure, his breathing and oxygen levels are often a cause for concern, so the doctors made a last-minute decision to keep him overnight and observe his progress. True to form, he's surprised us all and spent most of the night either smiling or sleeping. Since I've been here since 7am yesterday morning, I haven't done much of either.

newborn Quinn's adorable little fingers.
The story of Quinn's syndactyly is one of my favorites. Those of you who have been following this blog for a while likely remember the chaos surrounding Quinn's birth. The Mighty was very early and arrived quickly; so quickly, in fact, that Brian almost missed it. Due to his prenatal Down syndrome diagnosis and a number of other concerning findings during my closely-monitored pregnancy, an entire NICU team was on hand in the delivery room. When Quinn came screaming into this world, he was quickly passed to the head nurse for a look over. He was, after all, early, and babies with Down syndrome often have problems with their lungs, heart, or bowels that go unnoticed until birth. Brian and I were waiting patiently but nervously for the nurse to let us know how our little guy was doing. It seemed like ages before she turned to us with a very serious look on her face: "I want to tell you what I'm seeing," she said gravely. I swear the patients three floors below us could hear our sharp intake of breath. My mind was spinning in those seconds regarding all the things she could tell us: that he was in heart failure or barely breathing or that his lungs formed outside of his chest.

"His middle fingers are fused on his right hand."


"That's IT?!" we said together. We can do this. Hell, as die-hard Texas Longhorn fans, we were pleased to see he was born with his horns up! Those fingers became a symbol for me of all the things that could have been wrong, but weren't. Of all the things that doctors and professionals would warn me might happen. All the worst-case scenarios we'll face over the years. Because Quinn has Down syndrome, many people in this world will expect him to be a burden medically, physically, and intellectually. It was like Quinn was born with not one, but two middle fingers in the air, challenging anyone to stereotype him or his abilities.

recovering
Of course, despite my love for those fingers, the right course of action was to give him full mobility in his right hand. Five fingers are better for fine motor skills than four and, even though the surgery and 6-week recovery will be tough on all of us, it was the right thing to do. And with the help of Quinn's incredible Grandma Cathy, who is a physical therapist at Shriner's Hospital in Houston, we had one of the foremost hand specialists in the country perform the procedure. Our guy was in good hands (pun intended) and is recovering well.

Now if only they'd let us go home so Mama can get some sleep...

Tuesday, July 15, 2014

Summer 2014, so far

As a teacher, I begin every summer with a list of goals to accomplish. Some are complex, while others, like a quick blog post, are simple. And before I know it, I'm watching the end of summer approach at a break-necking pace without having done much besides building Legos with Atticus in my pajamas. Even at naptime, I struggle to simply reheat my last cup of coffee for the fourth time and check my email. That said, there are a few developments that deserve mention here, so here's my half-assed attempt at productivity.


I. Vacation:

Every other Christmas, my family decides to forgo gift-giving and spend our money on a vacation instead, because experience and togetherness beat stuff any day of the year, but this is especially true at Christmas. This year, we decided to head to Jackson Hole, WY over the summer to visit Grand Teton and Yellowstone National Parks. And let me bluntly say that it. was. awesome. Surreal, even. I'll let the pictures speak for themselves instead of driveling on:








II. Quinn:

Quinn's progress the past few months has left me speechless. Gone is the baby I knew. He is scooting faster than I can catch him, pulling himself to stand, and even saying a few words. I'm seeing his little personality blossom and it's incredibly fun to watch. He's social, happy, and dangerously curious. And, just like his mother brother, he has a tendency to get comically frustrated over seemingly insignificant things. But that's pretty normal for his age as he learns to manipulate the world around him.

He's scheduled for surgery in a few weeks at Shriner's Hospital here in Houston to separate his fused middle fingers on his right hand. While we've always loved that he was born with his "horns up" (hook 'em), full dexterity is imperative these next few years as he further develops his fine motor skills. The surgery is pretty straight-forward, but he'll be in a full cast for two months as he heals from the procedure. We'll keep you posted on that front.




III. Atticus

Atticus turned four in June and, like many four-year-olds, he wants to either a). do everything by
himself when we're in a mad rush to walk out the door (have you ever watched a small child put his shoes on? It's an interminable process), or b). insist that I get him something the moment I sit down. But I can never meet all his needs in one trip. First it's juice. When I finallly fill his cup and get back to what I was doing, then he wants a snack, so I get it for him and sit back down. And then he needs help with his puzzle. And then he spilled the juice. On the couch. The carpet. His clothes. You get the point. I'm never sitting down for long.

But annoying habits aside, Atticus is increasingly inquisitive and imaginative.We're pushing letters and phonics right now to hopefully have him reading by the spring. We've instituted a "letter of the day" this summer in which we focus on a letter and activities that begin with that letter. For example, on "C Day" we baked cookies for our friends and neighbors because "C" is for "cookie" and "caring." It's been a fun way to pass the dog days of summer.



IV. Brian and Me

We're gradually eating our way through our new neighborhood and loving every minute of it. Granted, our wallets and waistlines need a break before they both bust, so we're spending the rest of the summer trying to finish house projects and visit with friends. We recognize these are our last relaxing moments before school starts in the fall, and this year promises to be the busiest yet with the boys' new school schedule and insanely high tuition. But these are the sacrifices we signed up for when we became parents, so we'll take it in stride.






Tuesday, June 10, 2014

Has Quinn Changed your Perspective on Down Syndrome?

I'll be the first to admit, I was devastated upon receiving Quinn's diagnosis because I was harboring old stereotypes and misinformation about what Down syndrome meant. If you read the post I wrote immediately after our doctor made the call about Quinn's designer genes, you can see this clearly in my writing. I assumed my life would never be "normal" again. I assumed my child would be unable to perform even simple tasks like walking, speaking, or reading. And even though I pride myself in being an educated person with progressive thoughts, I was truly ignorant about the realities of Ds until Quinn came along. And I've learned that I was not alone in this attitude. I've had students ask me if Quinn will ever be able to learn, and strangers question whether or not I intend to "put him in a home" when he's older. Their innocent questions, while cringe-worthy, are steeped in the same ignorance I had before Down syndrome became a part of my reality, hence my desire to raise awareness about what Down syndrome really is. There's nothing like experience and education to put things into perspective. Down syndrome is no longer the scary thing I thought it would be two years ago and I see Quinn's similarities to other kids his age far more than I see his differences, and I hope that I've conveyed that message to you.

So I'm curious, in the time that I've been blogging and sharing my experiences in raising Quinn, has it changed your perspective on Down syndrome? Have I raised awareness about what my son is capable of becoming in the future? And is there anything that I should add to my posts to help you better understand what Ds is all about? I'd love to read your comments below!

Full disclosure: I totally stole this idea from a friend's Facebook profile, but I figure the more of us who ask, the more we'll know (cue shooting star graphic and inspirational jingle).



Wednesday, May 14, 2014

New Horizons

There have been some big changes here at the homestead, the most notable being our new home. When we moved to Houston in the summer of 2012, we were daunted by the task of buying a house in the city's crazy real estate market, a task made even more difficult by the fact that we were still living in Austin at the time. We were outbid on several offers, and lacked the resources or time to look in our most desired neighborhoods. Brian and I have always claimed that we could live in two places and two places only: the heart of the city or the middle of nowhere. Anything in between just wasn't for us. So we surprised ourselves when we bought a house in the West Houston suburbs where I grew up. It's a great little neighborhood and our house was a great little house, but despite its proximity to both our jobs, we weren't terribly happy there.


The Rise School of Houston
About six months later, we received Quinn's diagnosis and learned about The Rise School of Houston, a developmental preschool for children with Down syndrome. We took a tour when Quinn was very young and immediately put his name on the wait list; we had fallen in love with the school after our visit. With their integrated music, speech, and physical therapy, as well as a 3:1 student to teacher ratio and a gorgeous facility, we knew immediately that this was the best thing for Quinn's formative early years. The only problem (other than the insanely high tuition rate; that's a discussion for another post) is that it was on the opposite end of town from us, but ironically close to where we wanted to live when we first moved to Houston. Nevertheless, we went back and forth on ways to make it work from our home in the 'burbs without ever coming up with a solution. And after some reflection on where we were at the time, Brian and I made the decision to move to central Houston. We craved museums, coffee shops, and the charm of bungalow-lined streets. We missed seeing bicycles and independently-owned businesses. We missed the pulse and general weirdness that comes with an inner-city neighborhood and all its different perspectives. And, of course, it was the best decision for Quinn because it meant he could attend The Rise School.

We made an offer on the second house we saw, a darling 1928 Victorian bungalow on a corner lot in the an historic section of the Houston Heights, complete with a garage apartment (for extra income; our summer tenant moves in today) and a wrought-iron fence. We weren't exactly ready to move; we had just started looking to get an idea of the market, but just like when we toured the Rise School, we immediately fell in love with this house. When our offer was accepted, we rushed to get our other house listed. We were really lucky that the Houston real estate market was even hotter than when we bought the house less than two years prior, and we had two offers over asking price within three hours! Our agent said she had never seen anything like it.

Home

We officially moved in to our new home last weekend and are finally starting to feel settled. We absolutely adore living in the heart of the city and being so close to all the things we love. And we love the charm and quirkiness of an historic home. Our upstairs AC is on the fritz, our behemoth dog broke the flimsy single-paned glass in our dining room window, and the water pressure makes Atticus's squirt gun look like a fire hose. But, hey, we have a clawfoot tub, an old front porch, and four capable hands that aren't afraid to get a little dirty.




Wednesday, April 23, 2014

Group Hug, Everybody!

Wow. Just, wow!

My recent post in response to the troll has now gone viral and I am so unbelievably grateful to the many people who have sent messages and left comments of support and love from all over the world. I can't even begin to express my gratitude; I wish I had time to respond to all your messages personally, but due to the overwhelming influx of support, this is simply impossible. So instead, please accept this post as one giant group hug. You all make this world better with your positive outlooks and selfless willingness to reach out to our family. THANK YOU!

And Quinn? He's just tickled:







Monday, April 14, 2014

An Open Letter to A Troll

Dear Troll,


Since I started blogging about my son Quinn and his disability, I knew this day would come. There’s no shortage of trolls on the internet who hide behind the anonymity of a screen name with the intent to be cruel, and I’ve seen their hostility many times before. In fact, just last week, in the wake of a robbery at the Down Syndrome Association of Houston’s headquarters, in which $10,000 worth of technology was stolen, there was no shortage of ignorant comments on the news story reporting the incident. One user asked, “how will they learn to count to potato?” Another claimed that wasting computers on “retards” was stupid anyway and that the organization deserved to be robbed. These comments, while offensive, simply serve to showcase people’s hate-fueled ignorance and aren’t worth my time. I grimace when I read them, but realize there’s little to be done about such stupidity. 

I don't want to make assumptions about you, but I can guess from your immaturity and ignorance that you know little about the helplessness that parents feel when caring for a sick infant with respiratory issues. Quinn was sick last week, but was feeling much better by Friday. We decided to sit in the backyard and soak up the sun after school. There aren't many things in this world more beautiful than seeing your recently-ill child light up in a smile, and I snapped a few photos to celebrate his recovery, then posted them on Instagram with the hashtag “#downsyndrome.” I love to look through those photos myself in my spare time because damn if those kiddos aren’t adorable. Of course, you feel differently because you found this photo and left a comment with one simple word: 

Ugly.

Thursday, March 13, 2014

On the fragility of life and the importance of our choices


Shattered Dreams drunk driving simulation: Stratford High School, 2014

Today Stratford High School presented Shattered Dreams, in which students, faculty, and community volunteers come together to simulate a drunk driving accident in order to raise awareness and prevent these types of tragedies amongst teens. At 9:00am, all upper-classmen walked to the street along campus where two cars were positioned to look as if they had run into one another, both full of actual students. The “driver” of one car had been drinking, while the “driver” of the other car had been texting. Over the course of an hour, students and faculty witnessed fire, police, and EMS pull students from the vehicles and strap them to gurneys, zip them into body bags, or throw them in the back of police cars. One student was life-flighted to Ben Taub Hospital. As the scene unfolded, friends and parents of the participants were present to witness and grieve for the victims. A hearse came at the end to take bodies to the morgue. Tonight, the student actors will fulfill their roles further, as if they were truly involved in the accident. Parents will write obituaries for their children. Those who died in the accident will actually visit the morgue. And those students who were injured will spend the night in the hospital, their families by their sides. The rest of the student body will remain in class today, listening to the sound of a heartbeat flat-line over the PA every 15 minutes to represent the rate at which someone dies in a drunk driving accident in this country.

Wednesday, March 5, 2014

The R-Word



Today is the annual “Spread the Word to End the Word” campaign, in which advocates of the special
needs community encourage people to stop using the word “retard” and all its forms. It’s a day that means a great deal to me now, but wasn’t even on my radar two years ago. It’s probably not on yours either unless you know and love someone with intellectual delays. Even if you do, you might glance at this issue and shrug your shoulders, thinking to yourself that being overly-PC is more damaging to our society than the words we use to insult others. I probably would have agreed with you a few years back, to be honest. But there’s something about crossing to the other side that makes it possible for me to see where you’re coming from, but also insist that you consider a new place to go. Because using words that hurt others simply to be funny, or even because you “forgot” to check your tongue, aren’t good enough reasons to keep using them.

You see, when you use the word “retard” you insult an entire group of people who are often unable to defend themselves. It’s probably why the word has been slow to fall out of social acceptance, unlike words like “ni**er” or “fa**ot.” The goal of the “Spread the Word to End the Word” campaign is to make “retard” so offensive that even open-minded, censorship-hating bloggers like myself have to type it with asterisks instead of letters. But moreover, when you call someone a “retard,” you’re basically telling them that they’ve chosen to do something stupid and therefore deserve to be insulted. This word isn’t used with any positive connotation. It’s an insult, a joke, and a way to point out others’ bad choices. But what you’re really doing is taking away my son’s worth. You’re making him out to be your scapegoat for comedy. And you’re making yourself less of my friend. That’s harsh, I know. But if you can’t respect me and my son enough to stop using that word, then you don’t deserve my friendship (said with Mama Bear claws fully and unapologetically exposed).  

Friday, February 21, 2014

On Depression...

This is for my friend.

Sometimes, life is hard. I think I’m luckier than most in this world, and yet I still struggle with my own demons. I suppose that’s true of all of us, but not everyone faces the crushing weight of depression when things go wrong. For my friend (and anyone else) who is struggling to stay afloat, I want you to know, I’ve been there.

Depression isn’t something we like to talk about in our society. Mental health in general is a rather taboo topic, perhaps because for those with no history of mental illness, it seems as simple as a change in mindset. But depression is very real, and often very difficult to control.

Tuesday, January 14, 2014

A Hodge-podge of Updates



I’ve been suffering a bit of writer’s block lately, but not for reasons you might expect. It’s not that I have nothing to say, but too much. My mind is racing of late with ideas, snippets, small iotas of information that I feel are worth sharing, but I don’t know how to organize these jumbled ideas into any sense of cohesive writing. So instead of waiting for it to all make sense, I’ll just share with you these tidbits and hope you can string some meaning from them.


Part I: Quinn

Quinn celebrated his first birthday just before Christmas and has radically changed before my eyes. There’s a moment that parents experience when they suddenly look at their babies and wonder when they grew up so quickly. I had that first moment with Quinn the other day. He’s just…bigger, you know? He’s alert and responsive. He’s starting to become more mobile and has found a way to wiggle himself across the living room floor. I won’t call it crawling just yet, but it’s close. He’s responding to signs and interacting more with us. He’s eating like a horse. Seriously, this kid can put food away. He loves to read books and actually cries when they’re over. The first time I witnessed this happen, I thought it was a fluke or that I had smacked his face with the stiff cardboard cover, but by the third time he screamed bloody murder when the story ended, I realized it’s not from pain, but anger. Clearly, he also has a penchant for the dramatic. But I can’t fault him for it; he is my son, after all. And I’m immeasurably proud of his love for the written word/pictures of cows.


Part II: Atticus

This kid is really blossoming into one of the kindest, most selfless children I have ever known. I knew some of Brian’s personality would show up sooner or later, but I wasn’t expecting it until well after puberty (boys will be boys and all that). And that’s not to say that he isn’t wild at times. He definitely has his moments where the world is falling apart because we ran out of Goldfish, but for the most part we hear a lot of “may I please?” and “thank you, Mommy” and “excuse me.”  He also loves his little brother. He absolutely adores him. Those two share a bond that I never knew could exist in children so young, and when I pick them up from school and they see each other after a long day apart, they both light up and fall into fits of giggles. It’s a pretty special thing to witness. Atticus is also a born entertainer. His dance skills are unparalleled, and he can chatter away for what seems like hours. If you try to simply nod and say, “oh, really?” and “mmm-hmmm” he’ll actually call you on it. “Don’t say, ‘okay’ Mommy. I telling a story!” He demands legitimate analysis of his tales. While exhausting, I know this will translate into something very special as he gets older.

Forgive the abysmal quality of this video. I think you'll find it's still worth watching.

Thursday, December 19, 2013

Friday, December 6, 2013

My Son with Special Needs Taught me More about Education than Seven Years in the Classroom



I am the product of a classical education. My mother, an English teacher, and my father, an attorney, instilled in me a respect for education that I embraced in my youth, fought like hell against in my adolescence and rediscovered in adulthood. I realized my calling as a teacher while on a backpacking trip through Europe shortly after graduating college. At the time, I had $20,000 in student loan debt, a degree in English, and virtually zero career prospects upon my return from abroad (see reference to English degree). As we wandered the streets of Prague, Florence, and Paris, I found myself unable to avoid the pull of Kakfa, Dante, and Hemingway; these men had defined my understanding of these cities, and I talked Brian’s ear off about their influence on modern culture. In those moments, my desire to teach was born.

Of course, upon my return I had begun to sing a different tune and thought that I could “do better” than teach. But despite a top-notch education from The University of Texas and a set of useful skills, I couldn’t find a job. Like others from the everyone-gets-a-trophy generation, I expected the offers to come streaming in. Moreover, I was told that my college degree would be worth more than the debt I acquired to earn it. With limited options and a waning confidence, I decided to revisit the notion of teaching and applied to Texas State's graduate program in education. I earned my teaching certificate and Master’s degree in Secondary Education two years later and entered the classroom still wet behind the ears, but passionate as all get-out. I fell into my role rather seamlessly. I found I actually enjoyed puzzling through discipline problems and, even though I had practically no idea what I was doing that first year, I loved my job.

Now, in my 7th year in the classroom, the only thing that’s changed is the expertise that comes with experience. I don’t feel like a braggart admitting that I’m good at my job. I’m not perfect, but I enjoy it and I forge relationships with my students that are real and based on a mutual respect for each other and the subject matter. Most importantly, we have a good time and we learn, read, and discuss. And I’m fortunate to teach on a campus that focuses on real education, not just test scores and school data. 

But yesterday in class, my eyes were opened to something I’ve known all along: despite the aforementioned positives, I’m beginning to see the perils of traditional education. It began innocently enough. We’re in the process of reading Antigone, the classical Greek drama about a young woman who risks her life for a morally just cause. To tie in poetry and help them relate to the greater themes within the work, I decided to spend some time listening to and annotating protest music. While discussing Pink Floyd’s message of anti-establishment in “Another Brick in the Wall Part II” I described the band’s beef with traditional education and the notion that school is purely a stepping stone for one’s career. I explained this in the context of mid-century British prep schools, not realizing that everything I said was true of our own system of education until a student told me as much.  

Monday, November 18, 2013

Buddy Walk 2013

I’ve heard it said that it takes a village to raise a child. In our case, it takes a village to raise a family. And this family has one hell of a village behind us. Last weekend was Quinn’s first Buddy Walk, an awareness and fundraising event held in Houston each November. I spent much of this fall organizing Quinn’s team and sending out slightly obnoxious Facebook posts in an attempt to raise money on his behalf. The result was successful. We raised over $7600 in Quinn’s name and were the 6th highest fundraising team in the city, which is no small feat! We couldn’t have done this without the help of our generous friends and family, with a special thanks to our incredible parents, Larry and Patti Mennes, who personally matched every donation from Larry’s employees. We wouldn’t have raised nearly as much as we did without their help.

When it came time for the walk itself, we had over 60 people on our team in support of Quinn. His teachers at the daycare made posters and came out in droves for our little man, and many of my own coworkers walked with us to show their support. Even my dear friend Laura, who was terribly sick at the time, braved her own illness to meander through the crowds out of love for Quinn. The Stratford National Honor Society students walked with us for their service hours and, even though I don’t know any of these seniors, they all introduced themselves to me and made a point of meeting Quinn (and fawning over his cuteness). Nearing the end of the one-mile walk through downtown Houston, I came upon Stratford’s Junior Girls, many of whom were my students last year. They watched last fall as I coped with the news of Quinn’s diagnosis and celebrated with me when he was born during finals week. They were all there with signs and banners, cheering Quinn’s name just before the finish line. At this point I didn’t even try to hide my tears.

To say that this event was moving would be a gross understatement. I am beyond grateful for these people, this village that supports my family. Their love and encouragement sustain me and create an environment for Quinn that is inclusive and celebrates his unique qualities. Because the more I learn about Down syndrome, the more I see it as a gift. For the people in my life to recognize this too means that our family is erasing stereotypes and breaking down the barriers that he would have faced even a decade ago. But most importantly, it means that we are loved, and love is all we need.

Stratford Junior Girls


Quinn and Atticus' teachers


Gamma and PopPop cheer for Quinn

Brian and his Mom (aka, Grandma)
BFF's for life



Ace and Archie decorating the tent

Paula and the man of the hour
Aunt Kelly showing Quinn his posters

SHS students represent

Atticus with his superman facepaint
Brian, Quinn, and me with Archie and Lisa


Monday, November 4, 2013

Spread Thin


October has always been my favorite month of the year. Temperatures are finally bearable in Texas, football season is in full swing, and pumpkin-flavored everything is in high supply. But this October, much like last year’s, kicked my ass. My kids were sick virtually the entire month, which meant that Brian and I took turns waking up in the middle of the night caring for unhappy children and, in turn, passing illnesses back and forth between each other. I’ve managed to deplete my already small stock of sick days and didn’t sleep more than 4 hours at a time for weeks.

I’ve approached this time as a slump; I assumed that we’re just going through a rough patch in terms of illnesses and doctor’s visits, but the more I think about the past month, the more I realize just how routine these circumstances have become. This is not a slump. This is our new reality.


Gamma and PopPop are life-savers.

An average week in our house consists of at least one illness, a few meltdowns, physical therapy, and a visit to one specialist or another. Add this to an already-busy schedule of two full-time jobs (plus tutoring and responding to student and parent emails, which is a full-time job in and of itself) and carting the kids to and from daycare and everywhere in between. It goes without saying that I’m feeling a little spread thin. And because of our full plates, we’ve been terrible friends to the very people that can keep us sane. We’ve flaked and double-booked and avoided social outings because, at the end of the long week, we desperately need to rest and recharge. I’ve become the very mom I always loathed; the mom who uses her kids and their germs as an excuse. It’s not that I’m trying to avoid the birthday parties or the barbecues. Deep down I know they’d be good for all of us. But I sincerely don’t want your child to come down with the funk that’s prevented us from operating on even a marginal level of sanity all week. And, full disclosure, I’m tired. I’m so bone-tired that I can barely move on Saturday, but I still have to do the grocery shopping and laundry and house-cleaning that I couldn’t do during the week because of all the aforementioned duties. 

Where can I pick up my Mom of the Year award?
Of all the families I know who are raising a child with Down syndrome, ours is the only one with two full-time working parents (to be fair, one of these families is currently looking for work. If you know of anything in the Houston area, please let me know). It never really hit me until now, but I’m suddenly realizing that these parents aren’t staying home out of choice, but rather out of necessity. There just aren’t enough hours in the day to get it all done. Between therapy, specialist visits, surgeries (we’ve got another this spring), and frequent illnesses, caring for Quinn alone is a full-time job, never mind that we have another child that is demanding of our attention. And so we’ve bounced around the idea of me staying home with the boys a few times. It would mean saving the $1300/month we spend on daycare costs (which is incredibly affordable for the quality of care they receive). Quinn could attend The Rise School, a preschool for children with Down syndrome whose hours and location are logistically impossible for us at the moment. We’ve heard nothing but amazing things about this program, but it’s an hour commute each day during the hours I’m at work. Leaving my job would make this a possibility (even though the aforementioned $1300 would go towards Quinn’s tuition alone, we would find a way to make it work). And it would mean that I could provide Quinn with the attention and developmental strategies that are so important for him right now and schedule doctor’s appointments before 4pm.

But in the end, there’s too much at stake to make it possible. Money would be insanely tight. If I leave my job, there goes our insurance and the boys’ transfer opportunity to some of the best public schools in the state of Texas. But what it really comes down to is that I love my job. I can’t, even for a moment, imagine myself out of the classroom. 

We’re at an impasse. Our choices are limited, so we’re forced to make the most of a difficult situation. And the end result of our full plates is a loss of all the things that could keep us sane. This post isn’t looking for your pity. It’s the last thing I need. But I guess I am looking for your understanding. It’s why I missed that very important thing you planned. It’s why I haven’t called. It’s why I’ve put on 10 pounds since June. Forgive me my trespasses. It’s going to be touch-and-go for a while, but we’ll make it back to the land of the living. And when we do, make sure that you have a drink in hand for me. I’m going to need it.

Tuesday, October 22, 2013

Down Syndrome Awareness Month: Meet Eli

Here's another guest post, this time from my friend, Ashley. When I received Quinn's diagnosis, I immediately turned to the internet to read stories from parents who were going through similar situations. In the process, I came across Ashley's blog and quickly realized that she lived just a few miles north of Houston. I sent her an email and she responded immediately, both of us excited to have found one another. I continued to talk with Ashley throughout my pregnancy while also keeping myself updated on her adorable son, Eli, who was born in April of 2012. Since we met last fall, Ashley and her husband Barry adopted beautiful baby Ruby and are (surprise!) expecting another son this spring! Here is their story:


I remember the day we confirmed our pregnancy with Eli. I was standing in the middle of my kindergarten classroom when the phone rang. I had been waiting all day to hear that sweet sound. Our reproductive endocrinologist was on the other end and I could hear the smile in his voice. "Mrs. Newman, you are pregnant!" He went on to give me some lab instructions and tell me my odds of a full term delivery (we had already beat the odds, using IVF to get pregnant). I just stood there in the middle of my kindergarten class with tears rolling down my face. This was what we had waited two years for. Finally a baby.

Our pregnancy was complicated: bed rest, bleeding, doubt and fear. But our little miracle stayed strong with us and soon we began to believe we would bring home a baby in May 2012. During my first trimester, all testing and ultrasounds looked good. I was released to my regular OB at 12 weeks. During my second trimester, some routine thyroid bloodwork was accidentally run as AFP testing instead. The day before our winter break, my doctor called to let me know that our son had screened positive for Down syndrome. To say that I laid on the floor and cried would be giving myself too much credit. I did not react well and looked for reassurance from my doctors immediately.


Monday, October 7, 2013

Down Syndrome Awareness Month: Meet Mara B

In honor of Down Syndrome Awareness Month, I've decided to share with you a series of guest entries by some of the amazing people we've met along our journey with Quinn. These posts are intended to help share the positivity that our kids bring us each and every day, while also eliminating some of the stereotypes attached to the chromosomally-enhanced. Each of our stories is as different as our individual children, yet the incredible joy they bring to our families is the same.

The first post is by my friend, Catie. Soon after receiving Quinn's diagnosis, we were given Catie's contact information. She was teaching music at Atticus's preschool and her daughter, Mara, was born with Down syndrome the previous year. It wasn't long before I learned that her job was a new one; just the year before she was an English teacher at Stratford High School, which is coincidentally MY job. When her husband passed the bar exam, she was able to take on part-time work and devote more of her schedule to her amazing kids, thus opening up a position in my current department. Whether I was hired to replace her position or not, we'll never know, as I was one of four new teachers in the English department last year. But I am certain that she and her family will be our lasting friends, as we have far more in common than the extra chromosome that Mara and Quinn possess, though that last commonality will connect us forever. She has been a priceless source of support and information, and meeting Mara for the first time instilled in me a new, positive outlook on what Down syndrome would be like for our family.

Here's Catie's story:

This is my Mara, affectionately known as Mara B (for Broussard, her middle name) or simply, the diva.  She's my second child and my only daughter.  She came screaming into the world on the afternoon of May 27, 2011, with a thick mop of black hair and surprise!  An extra chromosome--the 21st one.  Not exactly the Showcase Showdown, but I was assured it was the "Cadillac of chromosomal disorders," which I can assure you meant next to nothing to this gal, almost immediately post-partum.  There had been no indication during my pregnancy that she might have Down syndrome, so we were pretty shell-shocked.  My husband and I both had outdated ideas of what it meant to have Down syndrome, so a series of worst-case scenarios ran through our heads--everything from worrying about day care to kissing our carefree days of empty nesting retirement goodbye.  Instead of simply rejoicing over the birth of our much-awaited-for baby girl, we were thrown into a panic after being given a diagnosis and leaving the hospital with a list of imperative appointments with various specialists ranging from cardiologists to hematologists, geneticists, and ophthalmologists.  Those first heart-wrenching moments and

Friday, September 20, 2013

For the Parent who Just Received a Down Syndrome Diagnosis, on the Anniversary of our Own

Dear Fellow Warrior,

I don't know you, yet I feel that we are connected. I remember walking in your shoes and fearing for the future. I remember feeling so alone, then finding others who were experiencing the same emotions, and it helped me cope with the news that you are dealing with today. And so I write this letter in the hope that you find it. I write in the hope that you know you are not alone.
 
One year ago today, we received Quinn's Down syndrome diagnosis. I sat down in front of the computer and told the world our story in a post that makes me cringe when I read it now. In the year that's passed, I've had a chance to look back on those raw emotions and remind myself that I didn't know then what I know now. And most importantly, I hadn't met Quinn yet, whose very existence is my greatest accomplishment. He represents my courage in a time of doubt, patience in a time of chaos, and the unyielding strength of a tiny human that I took for granted.

Quinn's sweet face on the day we learned of his pleural effusion



But I didn't know this then. I was terrified, isolated, and grief-stricken. I found myself unable to celebrate this impending life, both out of fear and anger. I closed the nursery door and hid the baby clothes for months, embarrassed at myself in the process, but knowing that their very presence would send me into a tailspin of grief. I knew that I would love Quinn when he arrived, but this seemed so very far away from reality in the weeks following his diagnosis, and as time marched on, we faced new problems that made me fear becoming attached to someone who might not survive. I was an actor in those days, playing a role I remembered well from the time I was pregnant with Atticus. I knew how to answer the questions everyone loves to ask a pregnant woman: "It's a boy. He's due in January. He's my second." But those answers always felt like they deserved an asterisk at the end: "He has Down syndrome. The doctors found a pleural effusion. He might not make it." Of course, I never shared these footnotes. I gave the people what they wanted because no one knows how to reply to unexpected news like that. I joked and traded stories with other pregnant women while holding back a searing jealously because their baby would be "normal" and mine wouldn't; these women never had worst-case scenario conversations with their OBGYNs. While I was researching Early Childhood Intervention, Medicaid Waivers, and special needs preschools, these happy pregnant women were buying baby clothes and painting the nursery with stars in their eyes. I woke up at 3am almost every night, unable to fall back asleep because I was convinced I didn't have the skills to raise a child with special needs. In those months before Quinn was born, I was lost.

Saturday, August 17, 2013

Conversations with Atticus



Who knew that a seemingly-mundane trip to Target could yield such entertaining results? Atticus has been making really great choices lately, from becoming fully potty-trained to displaying stellar behavior when returning to school this week, so I decided to reward him with a new toy. The trip to the store provided so much insight into my little man's personality, that I just had to share this series of events with you.


It all began on the short drive over. I tuned into one Pandora station or another without really thinking and pulled out of the driveway. Now, I should note that Atticus loves music. If I forget to turn the radio on, even for a short trip, he will demand to hear "songs." His latest favorite is "Lakehouse" by Of Monsters and Men, because it's simple enough for him to recognize and the refrain, "where we are, where we are" is easy for him to sing along to. Well, an Of Monsters and Men song came on Pandora and Atticus said, "Mommy, I want the other song like this." Not knowning what he meant,  he started singing "where we are, where we are" until it clicked. I know that this may not seem like a magic moment, but those of you that know us well know that there are few things in our lives as important and influential as music. And for a just-turned-three-year-old to recognize the similarities between two songs by the same artist...let's just say it's impressive. And as soon as I started the song, he recognized the guitar riff at the intro and immediately thanked me. That would have been enough to blog about, really. I was immensely proud of this guy, especially when he started singing along in key, but this was just the beginning. I linked a live performance (on Seattle's KEXP) of the song below so you can check it out. It's pretty catchy.