Tuesday, September 17, 2019

Big transitions (and the fears that come with them)


We've been making big moves over here: new house, new school, new life, new beginnings. I decided that Quinn needed a school district with a track record of supporting students with special needs, so I bought a house in a neighborhood close to my own childhood home. I teach in the same district, at the high school down the street, so we're all close to home and close to each other. Despite these new comforts and conveniences, I was still apprehensive about how my kids would weather these changes. Atticus had established a close circle of friends at his previous school and Lucy was used to the small classes and personalized attention she received at The Rise School. And Quinn...well, I had dreaded this day since I learned about that pesky extra chromosome. This move was made in large part due to his needs, but had I done enough in other ways to prepare him for the academic, social, and emotional aspects of public school? Was he ready? Was I? As the time got closer, I realized that it was sink or swim. He was going to walk into that first day of school whether we were ready or not. So on our last day of summer vacation, I picked out their school clothes, packed their lunches, and then sat down to write the following:

For Quinn, on the night before your first day of Kindergarten,

I’m won’t lie, kid. I’ve fretted over this day from the moment I learned about your extra chromosome. I wondered if you’d understand the rules, if you’d be included by your peers, if you could find your way to the bathroom, if you could open your yogurt tube at lunch. And I still worry about those things. But today your family met with your new team of teachers, therapists, and administrators and felt excited about this journey for the first time, well, maybe ever. We saw clearly that they will support you and guide you and love you and teach you. They will see you for the light you bring and the gifts you possess. And a lot of that has to do with the teachers and therapists and administrators who laid that groundwork for your success at The Rise School of Houston. And a lot of it has to do with the fact that your awesome parents and grandparents moved mountains to get you zoned to a school that is known to support ALL its students. But most of it has to do with the fact that YOU, Quinn, are mighty. You are brave. You are capable. You are a reminder to all of us that anything worth having is worth working for, and that everyone deserves a shot at greatness. You will do great things. I know it. Own it.
 
Xoxo,
Mom

There was something cathartic about writing a letter that he wasn't going to read (at least for a while). I suppose I don't really want him to know the extent of my fears at this point. But I want him to know that I believe in him, so putting my tumultuous emotions on paper allowed me to project the kind of support I thought he needed most.

He walked in on that first day, waved goodbye to me at the classroom door, and made a bee-line for the alphabet puzzle in the corner of the room. He never looked back. And I was ok with it. It was the best I could hope for, honestly.

As the weeks progressed, I noticed that his long-standing love for school was beginning to wane. Our mornings featured more complaints and, eventually, tears. He had to be picked up out of the backseat at morning drop off and led to his classroom, looking over his teacher's shoulder to call my name as I pulled away to begin my own school day. It was heart-wrenching to leave him so sad, but it was nearly impossible for me to ask why. Because I knew the answer already...

One afternoon I did what I had to do and asked Quinn if he liked his new school. He didn't hesitate when he said "no", his little face crumpling, his eyes cast down to feign interest in his untied shoelaces. Then I asked the question I was dreading an answer to: "Have you made new friends?"

"No mama. No school. The friends are mean to me."

I held it together long enough to give him a giant hug and the best words of empty comfort I could muster. But I crumbled as soon as I left the room. I could hear Atticus howling his own sad tears from the kitchen, realizing he had heard everything. My sensitive little boy may have been more devastated about Quinn's loneliness than I was.

But my job isn't to cry. My job is to act. Kindergarteners are 5-year-olds; they're not intentionally being mean, they just don't understand. And Quinn can come on a little strong at times. I knew I needed to find a way to communicate his differences with the other families in his class, so I wrote yet another letter, this time to the Kindergarten students at his new school, asking the parents to read and discuss it at home.


You guys. The response was amazing. I received so many texts and emails and messages letting me know that they discussed it with their kids. And then a few days later, many reached out to tell me that their kids went out of their way to play with Quinn at school and that they were excited to make a new friend. Turns out, a lot of these kids were having a tough social transition to kindergarten, too. Turns out, change is scary for everyone. But it’s a lot less scary with friends at your side.

Upon reflection of this series of new transitions, I recognized that a lot of the fears I had were my own. Fears about solo home ownership, fears about how Quinn would be perceived by his peers, fears about the school system. But my kids went into these transitions without much fear. They jumped in, implicitly trusting that I had made the right decisions for them. And my own hang ups only served to project my stress onto them, fears that were erased once I employed open communication and advocacy. 

Once I looked past the fear, I realized that I made the right choice to move into this neighborhood and to send my kids to a new school. I'm thrilled to be a part of a community of families who look out for and support each other.

I'm happy to report that Quinn no longer cries when I drop him off in the morning, Atticus is loving 4th grade, and Lucy is making lots of new friends in PK. But what warms my heart the most is that they're all loving being in school together. Atticus and Lucy have recess at the same time, but on different, adjoining playgrounds. Once Atticus figured this out, he started to write her little notes with pictures of things she loves---unicorns, puppies, stick figure kids holding hands---passing them to her through the chain link fence that separates the big kid playground from hers each day. I've started to collect them so they don't get tossed. Someday I'll pull these notes out so they can see how much love they had between them from the beginning. Someday I'll share all these letters, pictures, and notes with my babies to show them that, while I worried about their happiness, I was more amazed by their resiliency. But today I'll take these victories and stop worrying. Today I'll just love them in this moment and show them I believe in them. I'll show them that I know they've got this. 

Because they do.



Wednesday, March 20, 2019

Is this Thing Still On?


I'll be honest: I've avoided this blog for years now. And that's because for years now, I've been facing some pretty significant challenges and I haven't really been ready to discuss them or lay them bare for the world to inspect. And therein lies the problem of creating a life that's on display (even if it's only to advocate for your child with special needs): when things like divorce and crippling depression come calling, you never really know what you're supposed to say to this audience you've built. So you hide. You pull the covers over your head and hope everyone just walks away and forgets you exist, at least for a little while. And that's exactly what happened in the two-and-a-half years since my last post. 

I wish I could say that I'm back because life got better after it got worse, but that would be a lie. Perhaps I'm back in the hopes that it will get better if I expose myself once more. I'm not really sure. But I have to give it a shot. I have to try something. Because I've tried everything else.

I'll give you the updates you deserve to read first: the kids are amazing. They're growing and changing and talking back and learning and eating me out of house and home. They love fiercely and hug tightly and fight loudly. They are smart and strong and beautiful.

Atticus is 8 now and will be 9 in June. He's finishing 3rd grade at our neighborhood school, where he has made some very close friends and has truly blossomed academically. He plays piano and baseball, loves minecraft, and is still the pickiest eater I've ever known in my life. He is also the kindest, most empathetic child on the planet. This is not an exaggeration. He is a GOOD KID who is doing a damn fine job of living up to his name. He does his homework without having to be asked, makes his siblings breakfast every Saturday so that I can sleep in, and moderates more squabbles between Lucy and Quinn than anyone his age should have to endure. And he does it all without complaint. I would not have survived the past two years without him.


Quinn turned 6 just before Christmas and we kept him in preschool one more year to give him a chance to catch up before he starts kindergarten this fall. I'm freaking out a little a lot about this transition. Is he ready? Will the other kids make fun of him? Will he have friends? Will he be able to keep up? Over and over and over, these thoughts consume me. But I have to remind myself that Quinn is actually doing pretty well. He understands nearly everything you tell him. He is potty trained, can follow instructions, and knows his letters. He is very difficult to understand in terms of speech, but he is speaking. Lucy knows Quinn's language better than anyone and translates often. But he's also determined to be understood, and will therefore use any combination of gestures, words, and/or sign language to get his point across. And if you STILL don't get it, he'll just grab your hand and drag you to whatever it is he wants and stand there with his arms crossed until you get it.



Lucy is almost 4 but she acts like she's 14. She's so smart, you guys. So so so smart. And she knows it. She knows how to work a room and still hasn't come to terms with the old adage, "you can't always get what you want." She is precocious and stubborn and completely fearless, flashing her dimples and absurdly long lashes at anyone within eye shot. She does basic math and knows her letters and makes up silly little songs constantly. She loves to dance, cuddle her massive collection of stuffed animals, and change her clothing 3-4 times/day. She is her mother's daughter.


There's the fun stuff. Now for the tough stuff. Brian and I just didn't make it. We still care very much about each other and are working together to raise these babies, but we no longer work as a couple, and we know we aren't doing the kids any favors by staying together for their sake. We still own our house and the kids call it home every day. We take turns living there each week with the kids and will continue this arrangement for at least one more year.  It was a sad decision, but the right one for our family. I wish I could speak about it more openly. But I can't yet. And I'm sorry it's taken this long to share this new reality with you. I will be taking a more active role on this blog from here on out. I hope you'll continue to stop in and catch up with our family.

Friday, November 4, 2016

Updates


I've really been an absentee blogger lately, and I know I've admitted this faulty behavior before. I won't even bother trying with half-hearted apologies this time; my loyal readers know it won't change the frequency of my posts. But since it's been so long, I promise to fill this one with great details about the babies and their recent adventures.


We're all just trying to keep our heads above water right now. With another school year came quite a few changes in our house. Given that Lucy and Quinn attend one school with relatively short hours (as far as preschools go) and Atticus is now in 1st grade at our neighborhood public school, the logistics of getting everyone where they need to be in the vast sprawl of Houston became impossible and I decided to teach part-time. I honestly though the transition would be a smooth one. I'll finally get to see my kids' teachers every day! I'll have so much extra time to run errands and make lunches and do laundry! I'll have less grading and an easier schedule! To be fair, all of these things are true, but it doesn't truly make my new schedule any easier than my previous, full-time schedule (which, I should add, was only feasible thanks to help from our nanny extraordinaire, who I'm missing terribly these days). Turns out, I'm a better teacher than chauffeur. The 60 miles a day I clock driving everyone where they need to be is taking a toll on my sanity and, in the end, the hours available to do all my other chores are just as meager as they were last year. I won't even touch the topic of part-time teacher pay...I'm pretty sure I could make more money flipping burgers. That said, I am a more present fixture in my kids' lives, which is the most important part of this change. And the joy I see when I pick them up from a school, a rare privilege in years past, makes it all worthwhile.

So enough about me...you guys are here for the kids and I like to give the people what they want...


Lucy:

Little Miss Sassy Pants
Ah, Lucy. She is simultaneously my greatest joy and my biggest challenge. This girl's got OPINIONS. And she insists on keeping up with her brothers, so there's no slowing her down. Her personality and intelligence, coupled with her doe eyes, dimples, and curls means that this is a girl who will know how to get what she wants. And that's utterly terrifying if she's anything like I was between the ages of 16 and 22 33. Despite these fears, I also don't worry too much about her. She's a smart and fierce little thing, and will stiff-arm her brothers if they get too close. Her language is emerging ahead of schedule and one of her favorite activities is to walk into a room and point to and list all the items in it. But her absolute favorite thing to do is to bring me a stack of books, cuddle up in my lap, and insist that I read each of them at least 20 times. I have a sneaking suspicion that she'll be reading them to us before too long.

Quinn: 

Paging Dr. Quinn
Mr. Indepedent. This boy doesn't want help from anyone and that includes when he's running full speed across a busy parking lot, strapping into a carseat, or pouring his own juice. His speech is slowly but surely improving, but he still has a long way to go, so he gets frustrated when he can't communicate his needs or wants. This has taken quite a toll on the entire family, to be honest, as his defiance is both very loud and very time-consuming. But I can't be frustrated with him when I witness him becoming so frustrated with himself. We had a speech therapist for years who moved away last December and we never replaced her. Therapy is expensive and we didn't feel it was a good use of our time or money for what we were getting, but now that his speech is so severely delayed, we're back into looking at our [very limited with my terrible insurance] options. This time, though, we want to find a therapist who can focus on his oral motor development. Quinn's vocabulary is rather extensive, but his low muscle tone makes it difficult to understand him. For example, "juice" is "oos" and his favorite tv show, "The Lion Guard" is "gine gad". No one outside of our family would understand him, and that's a concern, especially as more language emerges. We need to find a therapist who can work on helping him develop the muscle tone and proper tongue and lip placement to make intelligible sounds. Hopefully we find someone soon and, when we do, I'll report his improvements here.

Atticus: 

It's been fun to watch Atticus's talents emerge this year and we've learned that he's a math whiz, a reluctant reader, and has blossomed into quite the musician. He  started piano lessons this summer and is learning to read music and can play a song independently with only the sheet music in front of him. It's pretty impressive, to say the least, and something I'm so glad we're encouraging. Music is always playing in our house, whether it's vinyl on a Sunday morning, a mid-week dance party fueled by Spotify playlists, or Mom, Dad, and a guitar. It's so exciting to add Atticus behind a piano to that domestic soundtrack, and I'm looking forward to the day when we can all play together. Here's a glimpse of him practicing his "Halloween Song." I love the way he sings the keys names aloud as he plays.



All in all, we're hanging in there and ready for the chaos of a new school year to slow down (you know, just in time for the chaos of the holidays to ramp up). Thanks for stopping in and I'll be sure to update more often. So tune in next time, same bat time, same bat channel.

Saturday, September 17, 2016

New music

I've always loved writing music, but lately it seems like time is hard to find. After spending all week forcing myself to sit down and write a little bit each day, it all clicked during Lucy's naptime today and I was able to get something on video. It's still a work in progress, but posting it here forces me to acknowledge that I actually enjoyed the process and should devote more of my time to it in the future. Hope y'all enjoy!

 

 

Monday, August 1, 2016

Taking a Historic Heights Bungalow from Filth to Fab

Well, I'll admit that this summer has been anything but relaxing. We were fortunate enough to take a much-needed trip to see my Dad in Colorado in June and attend a friend's wedding in Mexico last week, but in between those two incredible vacations, we've been knee-deep in renovations.

We live on a corner lot in an historic neighborhood in Houston and always joked that if the house behind us ever went on the market (and we won the lottery), we should buy it and double the size of our modest 5,000 sq-ft lot. The house itself was occupied by a family who was eventually evicted and, as luck would have it, Brian ran into the owner about a week after these tenants moved out. The owner had plans to sell the property and already had an offer on the table, but Brian gave him our number just in case that fell through. He was asking more than we wanted to pay--nay, more than we could pay--but there's always room for negotiations in real estate. We hadn't heard back from the owner and assumed we'd lost our chance, until a month later, when we got a call to tell us that the original offer fell through.

As I mentioned earlier, we had no business buying a house. We're barely scraping by as it is, but Brian thought our parents might be interested in an investment opportunity, so we showed them the property. We saw a diamond in the rough, but weren't sure that they would. In a questionable Houston market, this dump could be risky, but the neighborhood is desirable due its charm and proximity to downtown. That said, the place smelled like rotting death and looked even worse.













Charming, huh?

Clearly, we had a lot of work on our hands, and we were shocked but thrilled that after walking our parents through this hell-hole, they agreed to move forward. Our plan was to renovate the house and rent it out. The Heights is a desirable area and, with a little elbow grease and a LOT of paint, we could have it ready by the end of the summer. So that's what we've done. Everything inside was gutted. We installed new floors, cabinets, countertops, tile, appliances, blinds, light fixtures, and more. Every wall was cleaned (for the first time in what had to be a decade) and painted. And the outside got as much of an update as we could afford. The results have been nothing short of transformative, despite devoting our entire summer to the project.

















As you can see, we're not completely finished yet. We still have towel bars to hang and faucets to install and all manner of other tiny items to address, but we're in the home stretch. Hopefully we'll have the place rented by the end of the month and I can enjoy at least a week of summer before I go back to work. Unless, of course, HGTV is looking for a new flip and rent concept for the upcoming season ;)

Friday, July 29, 2016

Born This Way, Season 2


Last year, A&E made every family raising a child with Down syndrome squeal with delight when it aired its reality tv series, Born This Way, which chronicles the day-to-day experiences of seven adults with Down syndrome. What had me the most excited about this series was that, while I have become a part of close-knit community of parents raising young children with Down syndrome, it's not often that I get to see what life is like for adults with T21. The show was a success and was picked up for a second season, which aired this past week.

Sean and his family
I was thrilled when Grace Hill Media, the publicity company doing outreach for the show, contacted me for a chance to interview one of the moms from the series! Sandra's son Sean is 22 and a self-proclaimed "ladies man". Seriously, his scenes are some of my favorites from season one and I can't wait to see what he's up to this time around. Sandra is a strong advocate for the Down syndrome community and a wealth of information for us moms new to the scene, so to speak. Below is the result of our interview, which is full of great information for you mamas raising kids with T21:


1. So often, the world paints us as martyrs for our children, constantly advocating for their education, health, well-being, and inclusion, but even in the 3 1/2 years I've had my son with Down syndrome, there are moments that I love that are exclusive to those of us raising children with special needs. What has been your most rewarding experience as a special needs mom?

--I completely agree. The ‘only special parents get special children’ stereotype sets the stage that only a saint can love and raise a child with a disability—and that’s so not true. I have so many moments, but I have to say the way Sean can light up a room when he enters with all of his confidence and so bravely starts talking to everyone present. Seeing Sean grow into a confident, independent adult is truly rewarding, and makes all the hard work in the past worth it.

2. What goals/dreams/hopes for Sean's future did you have when he was a baby? How have those aspirations changed as he's become an adult?

--as an only child with no close relatives I knew Sean would need to be independent…since none of us are immortal. As he has grown and as I have learned about the supports available his independence is still the goal, I just know he needs support and thankfully the services to provide that support are available. 

3. What advice do you have for those of us who are just starting our journey of raising a child with Down syndrome? 

--SAVE FOR COLLEGE! I had no idea the number of college programs that now exist would be available when Sean was a baby! So while you may need an ABLE Account (don’t save in your child’s name without it) or save in an account under your name, but save!

4. What do you think are Sean's greatest gifts and talents? What do you feel have been his greatest challenges?

--Sean has the most courage of anyone I know. While his articulation isn’t perfectly clear, he still will stand up in front of hundreds, and in one case thousands, of people and bravely speaks. His outgoing personality and appropriate social skills are his greatest assets. His greatest challenge—listening to his mother…he still is in that stage where he thinks I don’t know anything. 

5. If there was one thing you could change about special education, based on your experiences with Sean, what would it be?
---I would love that there would be no ‘special’ education at all. Just EDUCATION and every student would receive the supports, services, accommodations and modifications necessary for them to succeed. Every student would be welcomed into any classroom any extracurricular activity and acceptance for every student regardless of their individual gifts and needs would prevail.


I can't thank Sandra enough for her willingness to speak with me and share her insights! Born this Way airs on A&E on Tuesdays at 10/9c. And check out the trailer for season two here!

Tuesday, May 31, 2016

So you just had a baby with Down syndrome. Now what?


Itty bitty baby Quinn
If you’ve stumbled across this post, it’s likely because you are about to embark upon a journey you never planned for. I understand and remember that experience well. Learning halfway through my pregnancy that my son would be born with Down syndrome was like stepping into another world. I felt lost, isolated, and angry. I felt as if my life would never be “normal” again. I remember worrying that I would never be able to keep track of the different milestones, the doctor’s appointments, the therapy sessions. And to be honest, these things were difficult in the beginning because I didn’t know where to start. I also wanted someone to tell me the truth about my future; the internet is full of sunshine-and-rainbow accounts of raising children with Down syndrome, but I knew that couldn’t always be the case. Surely these parents were devastated by their child’s diagnosis and exhausted from the extra time a child with special needs requires, but I wasn’t seeing that on the blogs I read. 
When Quinn was born, I realized that Down syndrome was not a worst-case scenario, and despite my early misgivings, I wouldn’t change a thing about him now. My son is a light in this world and, had I known what to expect from the beginning, accepting his diagnosis would have been easier.

So first and foremost, congratulations! We often get so wrapped up in the fear and grief that accompanies this diagnosis that a lot of people forget that a TINY HUMAN LIFE just entered the world (or is on its way, if your diagnosis came prenatally). Seriously, congratulations. This isn't easy, but I promise you, it gets better. Once that's taken care of, consider the following steps:
  1. Love your baby.
  2. Love your baby.
  3. Repeat steps 1-2.

Feeling better yet? No? That's ok. It's probably because you have no idea what you're doing. If this baby is your first, those feelings are likely multiplied by 100. Don't worry, none of us knew what we were doing either. Sometimes I still don't. But the most important thing you can do are steps 1-3 above. The rest will fall into place. When you ready to move forward, here's what you need to know:


Let’s start with the tough stuff…

  • Medical Issues: Kids with Down syndrome are more likely to suffer from a myriad of health issues than typically-developing kids. They are prone to heart defects, leukemia, vision and hearing problems, respiratory issues, autism, and ADD. But before you wring your hands with worry, keep in mind that they also respond very well to treatment for all of these issues. The best advice I can offer is to find a pediatrician who respects your opinion as a professional parent. You will likely become an expert at Down syndrome care in the first year and you’ll be aware of the tests and screenings that need to take place, often even more than your pediatrician. A good doctor will take your research seriously and offer to help you find the right specialists and make the right referrals. Also be prepared to spend the first year of your child’s life visiting doctors who will rule out the aforementioned issues. My husband and I always joked that Quinn was such a good sleeper (he slept through the night almost from the beginning) because he knew how much we would need it. And we did. 
  • Developmental Delays: If you’re a first-time parent, you might not immediately recognize your child’s hypotonia (or low muscle tone), but those with experience holding newborns will likely notice that a baby with Down syndrome has less control over his body than a typically-developing child. This hypotonia is responsible for delayed motor skills like crawling and walking, and has a tendency to interfere with proper feeding and speech. As a result, you want to sign up for Early Intervention Services as soon as your child is born. These therapies will assist in the development of fine and gross motor skills and eventually speech. Both insurance and Medicaid often help families cover the cost of these services. To see who to contact in your state, visit: http://ectacenter.org/contact/ptccoord.asp

    credit: http://www.ndss.org/Resources/Therapies-Development/Early-Intervention


  • Other people’s perceptions: This was the hardest for me. Upon Quinn’s diagnosis, everyone suddenly became an expert on Down syndrome because their brother’s friend’s cousin once knew a kid with Down syndrome. These people’s well-meaning opinions and advice drove me crazy in the beginning. I didn’t want people to “pray for me” as if I were suffering from an illness, and I didn’t want to be told that “special people are chosen to raise special kids.” I didn’t feel special, nor did I want to separate my child from others as if he were already being labeled and isolated. There’s no easy answer for coping with these comments except to remember they’re coming from a good place. Remember that your child is an individual and is not like everyone else with Down syndrome.

But here’s the silver lining…

  • My life is “normal”: this was a pretty significant fear for me in the beginning. Would I suddenly become a social pariah because of my child’s disability? Would the time needed to care for him take over my life? Would my other children’s’ needs be met? Could I still work? When Quinn was born, I still worried about those things, but I can honestly tell you that my life is not any less “normal” than a parent with a full-time job and three young kids. Quinn is very much like any other child, though he is a little slow to meet major milestones (for example, when he was 12 months old, he was just starting to crawl, while my other kids were/are walking at that same age). Truth be told, some days these delays affect me and other days they don’t. The most important thing for me is that he’s treated the same way as everyone else. He receives just as much love and discipline as every other child his age. No one turns him away because of his disability.
  • Your child will light up a room: Atticus and Lucy are beautiful children. They have giant brown eyes with impossibly-long eyelashes and winning smiles. They know how to receive attention and deliver laughs. But none of that compares to the reaction I get from strangers when Quinn is around. I’ve seen women run from across a crowded store to fawn over him. And Quinn smiles brighter than any child I’ve ever known. He’s content, easy-to-please, and generally even-tempered. Except when he’s not.
  • You will make new connections with other parents: When we received Quinn’s prenatal diagnosis, I was introduced to many people in my community who are raising children with Down syndrome. These people have become my support system, my resource, my family. Their children inspire me as much as my own, and together we are a force that advocates for acceptance, inclusion, and awareness for the Down syndrome community. We’re also friends who get together often for picnics, parties, and play dates. I’ve found that most of these people would be dear friends even if we didn’t share this special commonality; it’s as if our children brought us together.

The journey you’re taking is slightly different than the one you planned for; this news is initially devastating to face. But it gets better. I can honestly say that I love my son fiercely just the way he is. I once read somewhere that we are sent here to learn, while those with Down syndrome are sent here to teach. I’m not usually one for the hokey message of fate and spiritual intentions; that type of euphemism tends to rub me the wrong way. But I can’t deny the person I’ve become since having Quinn. His existence is my greatest accomplishment. I’ve learned more from him in less than two years than I’ve learned from anyone in my entire life. He has taught me patience and perspective and helped me realize that the life I wasn’t planning for (a life that many actually take steps to avoid) is one I would choose to live all over again.
How can you not love this face?

Thursday, May 26, 2016

Happy Birthday, Lucy Louise!

One year ago today, my daughter came screaming into this world, ready to make her mark. As we navigated the flood waters of Houston, breathing through contractions and dodging cars going the wrong direction on I-10 in the pitch black 5am darkness because the other side of the freeway was underwater, I should have known Lucy was the kind of girl who would blaze her own path. She was ready to make her debut that morning, and no rising waters were going to get in her way. And as the year has progressed, her personality has blossomed before our eyes, dazzling us with her dimpled smile, demanding attitude, and ceaseless curiosity, all of which I saw coming that morning I went into labor. I knew her before she arrived, and yet now that she's here, she keeps surprising me.

One year ago today, I gave birth to my last baby. As a result, I've done my very best to cherish every snuggle, every milky warm breath on my chest, and every milestone, knowing it would be the last time I'd experience this list of firsts from one of my own. But a part of me is anxious and impatient to watch her grow. I adore clumsy toddling on chunky legs, and Lucy is getting closer to walking each day. I love when those first few words arrive, and we've had a slew of them over the past month or so. Lucy is a clever little thing, learning things at a rate I didn't realize was possible for a child her age. She is thoughtful and observant. She soaks it all in and turns it over in her tiny mind, figuring out what it all means. She loves to play with shoes and doors and blocks. She loves to put things in her mouth. She loves to babble and imitate and bang toys together. Most importantly, she loves to laugh these huge belly laughs that fill the whole house with such happiness that I fear the windows might break from trying to hold it all in. And while there will come a day when I will mourn the loss of baby toes and fluttering eyelashes, I acknowledge that time stops for no one, not even a mother desperate to cling to the final stages of babyhood.

We celebrated this little lady last Saturday at Gamma and PopPop's house. My mom outdid herself making the event a special one and all my favorite people here in Houston were able to join us. Even as a storm rolled during the "Birthday Song" (which is fitting, given the day she came into this world), I was still snapping pictures while her brothers swiped frosting from her pink smash cake. It was a special moment that I'll cherish forever, made even more special by the ones who helped us celebrate.

Happy birthday to my sweet lil' Lu. We are so happy you joined our family and made it complete. Your brothers adore you and your parents are in awe of you. I can't wait to see the strong, intelligent, and selfless woman you'll become someday, but only after we get a few more years of those chunky baby thighs.









Monday, March 21, 2016

World Down Syndrome Day





Today is 3/21, which means that it's World Down Syndrome Day, in honor of the 3rd copy of the 21st chromosome. Our community chooses to celebrate in many different ways, from wearing crazy socks to posting pictures on social media of our loved ones with Ds. I usually make some basic statement about what Down syndrome means to our family under an Instagram picture and consider it done. But since I a) haven't posted to the blog in ages (sorry; I also realize my last post was, ironically, about my New Year's resolution to write more) and b) have a bit more to say today than usual, I decided to make it a full-fledged entry. I haven't written about Down syndrome in a while, so there's quite a bit of commentary I want to get off my chest and it's not all pretty. But keep reading; I like to end on a high note.

The purpose of WDSD, which began in 2006 and was recognized by the UN in 2012, is to promote awareness for individuals with Down syndrome. There's something very special about a community coming together with one voice to advocate for our children, brothers, sisters, and friends. We want desperately for society to recognize the worth of individuals with Down syndrome and that they can play vital roles in their communities. But sometimes I worry that days like today paint an unrealistically rosy picture of families raising kids with Trisomy 21. We need a day of awareness because Down syndrome means we have hurdles to jump and struggles to overcome, but I've learned that it's frowned upon to admit that raising a child with Down syndrome is challenging. And there are members of this community who will roast me for this comment, especially on a day of awareness and celebration, but sometimes Down syndrome is hard.

Until now, it was a part of my son that necessitated extra doctor's appointments and early intervention. But as I watch Quinn move from toddlerhood to legit preschooler, his delays in speech and cognition are making life more difficult for him and it breaks my heart a little. Quinn is typically a happy little guy, but I can't help but blame Down syndrome for the things that upset him. Down syndrome is the reason that he can't express what he needs. Down syndrome is the reason that he isn't potty-trained, that he doesn't know his colors or shapes yet, that he has to have yet another surgery on Friday (it's just a routine tonsillectomy, but this is his 3rd surgery in as many years, and Down syndrome is the reason we'll likely have to stay overnight when other kids receiving the same procedure will sleep in their own beds that night. Down syndrome makes it difficult for Quinn's oxygen saturation to normalize after anesthesia, requiring additional observation).  And in the grand scheme of things, these are minor issues. Quinn will catch up, he will learn to speak, he is relatively healthy, and he has a support system that will ensure his well-being both now and in the future. But as any special needs parent will tell you, our lives as parents are different because of Down syndrome. Our decisions are always made with Down syndrome in mind, from something as simple as where to eat dinner to as complex as where to live and send our kids to school. And just because we put on a brave face and act like it's no big deal, sometimes Down syndrome is overwhelming.

On this day especially, I want people to believe that my kid is capable of living a fulfilling and purposeful life, that he has so many things to contribute to society. I need people to believe this. But it also makes me feel like I'm not allowed to discuss the challenges we face. Sometimes these moments of awareness gloss over our needs and make us feel like we we're not allowed to doubt their future success, which isn't really fair because I have the same concerns and worries for Atticus and Lucy, too. Why can't I worry about Quinn out loud? If we spend all our time advocating for how much our kids are like everyone else, people might forget that there are a unique set of obstacles before us, and that we need support as much as we need acceptance. The future of special education, quality healthcare, and community advocacy groups all require adequate funding and support, none of which will happen if we keep convincing everyone within earshot that Down syndrome is the best thing to ever happen to us (yes, I have read those words many times).

I'll be honest; I wondered if I should even post this. I know there are readers out there who are considering termination after a prenatal diagnosis. I'm terrified that this post will sway your decision and I implore you to keep reading. There are readers out there who just had a baby with Down syndrome and you feel lost and scared. These words may have offered you little comfort, so I beg you to make it to the end.

While there are times that I hate Down syndrome, there are times when I love it. I love the community of support that comes with this diagnosis. If you are new to this world, you are now a part of our family. And we're pretty freakin' awesome. I love the pure, unadulterated joy that radiates from Quinn. He enjoys his life and we enjoy him. He loves those around him with such willful abandon that I know his soul is pure and I have grown as a person because of him. Quinn has made me more patient, more understanding, and more kind. Quinn is a magnet for attention, too. We can't go anywhere without strangers fawning over him because he's cute. I mean really, really cute. I suppose we can thank Down syndrome for that as well. And for all the things that make our lives more challenging, I wouldn't trade it for a Quinn without Down syndrome. Because that extra chromosome exists in every cell in his body, which means that it is a part of his sparkling personality, his beautiful blue eyes, and his stubborn, yet resilient charm. Those things will serve him well in the future and, while they might not erase the challenges caused by that extra chromosome, they do make it all worthwhile.