Tuesday, April 3, 2012

I love her, I love her, I love her.

Lexi is my beast friend. There was no typo there. She turns 30 here in just under two months. Her husband forced her to move away from her friends in Seattle to Washington D.C. (if for no other reason that to confuse people when they asked where she moved from she says "Washington")  so she's not around any of her good friends for this momentous occasion. It saddens me. It saddens her. So, I think we should do something fabulous.  I think EVERYONE I KNOW should send their condolences in the form of COLD HARD CASH to 2405 North Underwood Street, Arlington, VA 22205. You can start today. Or send her something awesome. Or just tell her how cool you think she is.

Because between you and me and this blog, she's got some serious self-esteem issues. And if you sent her cash, she could get all of that hair removed from her face! That would help!

If you don't like sending cash in the mail, no worries, she takes gift cards. Also, someone buy me a plane ticket to D.C. so I can hang out with her and talk her down from whatever ledge she's perched on.

Not a plain ticket, that would be tacky.

Wednesday, March 21, 2012

Happy World Down Syndrome Day!

Today is March 21st--3/21. Some awesome person or group of people decided 6 years ago to proclaim it World Down Syndrome Day, in honor of the 3rd copy of the 21st chromosome, which 95% of individuals with Ds have (the other 5% have translocation or mosaic Ds, which you can read about here). This year is the 1st year that the United Nations has officially recognized it. Here's a statement they published about it. My dream is that this means there are big changes on the horizon in the way individuals with Ds are perceived and treated throughout the world....

What this day means to me is, in part, that my Facebook news feed (I think 300 of my FB friends are Ds parents. And I belong to no fewer than 7 Facebook groups for families of kids with Ds. The Ds community is what I love 2nd best about having Colin in my life) is jam-packed with happy wishes and photos of beautiful people of all ages who rock that extra chromosome. Online and in real life, families of these amazing people are proclaiming to the world: "Look! Look at my family member! We love him! He's amazing and bright and sunny, and we're SO PROUD! Our family wouldn't be the same without him. We are forever changed because of the influence his life has had on our own. Please take a closer look so you can REALLY SEE all of the GOOD he has to offer." I'm a crying mess today--the joy I feel is too great to contain.

What I feel today stands in stark contrast to the feelings I had immediately post-diagnosis, when Colin was still incubating, an unseen little bundle of flutters and tiny kicks. The doctor's words, "The amnio results came back positive for Down syndrome" felt as devastating to me as a death sentence. My reaction to this news was extreme, and dark, and desperate. Most of the 3 or 4 following days were spent in a sobbing heap on my bed with all of the most intense feelings that come with grief--anger, denial, self-pity, fear, desperate bargaining with God--swirling and knotting themselves together so tightly in my heart that I felt for sure it would burst. In fact, my kids even whispered to my husband, "Is Mom gonna die?" (I've never been one to stoically hold my feelings inside....) The pain I felt was raw and suffocating. It's difficult for me to understand now how my reaction could have been that overwhelmingly intense. How could I have been so ridiculously afraid of something as amazing as life is with my sweet little Colin? I don't understand that grief, now that I'm "on the other side" of it. It feels weird and foreign. I'm embarrassed for having reacted so violently. And yet, every day, a good percentage of women who receive a Ds diagnosis will react in much the same way I did. What are we so afraid of? I believe the fear and intense emotions come from lack of knowledge--from old stereotypes and prejudices against those who are different, or less than perfect, according to society's standards of beauty, intelligence, or ability.

I've been wondering a lot about something this past week: what if a friend of mine--someone who's seen me go through this transformation from grief to unsteady acceptance to joy--were to receive a prenatal diagnosis of Down syndrome for a baby she was carrying? How would she react? Have I been clear enough in expressing my love for Colin that she could actually look forward to joining me in the ranks of Ds mommies? Could she be excited like I think she should be, instead of scared or angry? Could her observation of my journey with Colin possibly... I don't know.... maybe even help her reconsider the desperate thought that life would be better for everyone involved if such a baby were aborted? What if I haven't said or done enough for her to feel peace instead of fear or apprehension? Here's what I'd want to make sure my friend knew in this hypothetical scenario:

1) You don't have to be anything special to parent a child with Down syndrome. I know it looks from the outside like these moms are saintly--they have extra patience, extra love, extra energy, right? But now I want you to focus on me. Who's the one who totally lost it this morning when the kids were running 10 minutes late for school for the 415th time and the kid who was supposed to be finding her dang boots was standing in the entryway, drawing in the dust on the mirror? Whose neck veins were bulging? That's right--it was me. You can ask anyone in my family how organized and put-together and patient and long-suffering and soft-spoken I am. They will laugh you to scorn, and that will help you see that if I can do it and love it, you sure as heck can, too.

There are for sure people who have kids with special needs who fight it and resent it and are angry about it every step of the way, and who spend the rest of their lives feeling bitter and victimized. But please bear in mind that special parents are most often MADE, not born. You can become just as amazing as you allow yourself to be. Of course, there are those people who are incredible from the beginning, and who choose a child with special needs through adoption. They are awesome, and I am not one of them. You don't need to be, either. I'm one of the parents who's hopefully becoming the kind of person I want to be. This journey with Colin is teaching me to stretch and grow beyond shallow judgments. I'm learning to look beyond the "different" appearance, the slower or more awkward gait or speech, to really see a person for who they are instead of feeling discomfort or pity.

2) Your life won't be all that different when you have a kid with Down syndrome. It's a bigger adjustment to add another kid to your family than it is to add Down syndrome to your family. Of course, just as with any other kid, there will be lots of great times, and then a whole bunch of other times where you want to run away to Tahiti or something, and never go home to those hoodlums. Parenting is HARD. Period. If you want easy, look somewhere else. Maybe get a plant in one of those self-watering pots.

3) You can still dream big dreams for your kid. Down syndrome won't stand in the way of dreams. Colin most likely won't ever be a hotshot investment banker or brain surgeon or physics professor. That was a hard shift to for me to make in the dreams I had for his future. But I've come to understand that his worth as a human isn't measured by the size of his future paycheck or the prestige of his job. What does matter is that he has people who love and support him, that he's involved in things that help him feel valued and important, and that he has a positive impact on the lives of the people he interacts with.

I fully intend for Colin to grow up and not want to live with me anymore at some point. I want him to learn how to take care of himself, maybe get a driver's license or go to college. Definitely he needs to develop some cool talents. He can work at the grocery store bagging groceries if he wants to, or he could do any number of other things. I still worry sometimes that he'll have too many obstacles in his way--maybe he won't excel at anything. Maybe his IQ or his verbal ability or his interpersonal skills will never be more than marginal. Does that make you sad to think about? Let me assure you, that's something that made me cry bitter tears when I thought about it not too long ago. I'm not as much of a mess anymore when I think about it these days. I still wonder on occasion. Mostly I'm learning to take each day as it comes instead of worrying about a future I can't really control. But let me tell you this--I also worry that my other kids with their 46 chromosomes will grow up to be massive jerks, or mass murderers (one kid in particular...), or any type of good-for-nothing delinquent. The odds of Colin becoming any of those things are really, really slim--possibly even non-existent. It's like my wise brother once said, "The great part about Colin's Down syndrome is that you're pretty much guaranteed he won't grow up to be an a-hole." Most kids don't come with that kind of guarantee.
The most encouraging thing to me when I'm nervously contemplating Colin's future is what parents of adults with Ds share about their kids. They'll tell me that life with their kids hasn't been easy or perfect, but that they wouldn't trade the experience for anything in the world. Doctors and other professionals might tell you your baby's future is bleak and ugly, but what do they know? Don't believe them for a second--they don't have a clue what they're talking about. They're basing those opinions on antiquated information they read from an outdated book. Believe the parents who are living it and loving it.

4) You will think your kid with Down syndrome is the most beautiful, most amazing human ever to have graced the earth with his presence. You might spend a lot of time contemplating how much Down syndrome you can see in your kid, unless you're not nuts like I am. Mostly, you'll realize it doesn't matter too much. You'll kiss his fingers and nuzzle his sweet little neck and marvel at his soft skin. And you'll laugh so hard at his giggles and goofy faces your sides will ache. You will feel more intense love for this little person that you created than you ever thought was possible. You'll miss him terribly when he naps, and thrill when he wakes up, because it means you can hold him again. You'll have to fight your other kids for a turn to snuggle him. You will spend a good portion of each day wondering how you ever got so lucky as to deserve a kid as wonderful and miraculous as him. I promise you--your life isn't ending with a Down syndrome diagnosis. You're being introduced to a life that is more beautiful and full than you ever would have believed existed on this earth. You probably won't ever be able to stop posting pictures like this:
And gushing about him to anyone who will listen for more than 2 minutes.

Saturday, February 18, 2012

The Down syndrome family

When I was about 8 months pregnant with Colin, we were at one of Kenneth's basketball games at a high school about 40 miles away. Out in the foyer area, a little boy was toddling around, just a little awkward on his feet. I couldn't tell how old he was. My "Down syndrome radar" wasn't very finely honed yet, but I guessed from his facial features that he might have that extra 21st chromosome. I watched him for a while, and tried to figure out who his mom was in the crowd of people. When I found her, I hesitantly approached her. "Hi! Your little boy is so cute! How old is he?" She told me he was 5. "Awww. He's really just adorable. Does he.... does he have.... Down syndrome?" I could tell she was a little taken aback, and she answered, rather suspicious and guarded, "Yes...." I breathed a sigh of relief and said, patting my belly, "Oh! Because this little boy I'm expecting has it, too!" Her expression and posture immediately changed and relaxed, and she said, "Oh! Congratulations!" And we chit-chatted, and she assured me that this journey I was about to embark on would be challenging, but it would change me for the better, if I allowed it to. We exchanged phone numbers, and as we went our separate ways, I marveled at the love I felt from her as she welcomed me into the Down syndrome family--this amazing club I'd never known I wanted to join.

I'd already experienced this warm acceptance in a couple online communities I found in those early, frightened days post-diagnosis. I'd gone searching for information, for support, for whatever I could get my hands on after we'd received a positive result from the amniocentesis. What I found were people sharing information, supporting and encouraging each other (supporting me! Was I ever needy!). My favorite resources at the time were the Down syndrome pregnancy support group on babycenter.com, as well as its partner, the babycenter.com Down syndrome group, where so many amazing moms of kids with Ds hang out. Here I found ladies who were either in the same boat I was--pregnant with a baby who was already diagnosed with Down syndrome, or who were "waiting it out" with higher odds due to bloodwork results or anatomical "markers" on ultrasounds--or women whose children with Down syndrome were already here. I still marvel at those amazing women, who check in almost daily to welcome frightened, worried women and offer support, encouragement, and all of the awesome information women in that situation often crave--especially reassurance that life doesn't end when a child with "a little something extra" joins a family. On the contrary--the insights that these wonderful ladies provided about life with their kids helped me to eventually look forward to Colin's birth with excitement and anticipation instead of dread and fear. From those 2 support groups, I was pointed to downsyndromepregnancy.org, which is an amazingly well-thought-out website, created by amazing moms of kids with Down syndrome, and reviewed by doctors--specialists in the field. I devoured their free e-book, which covered all of the topics I was anxious to learn more about, in a soothing, yet informative, way.

One of the other resources I've loved since being pregnant with Colin has been "mommy blogs"--blogs written by moms of kids with Ds of all ages, who chronicle their family's lives. These blogs, with their humor and poignant reflection, helped me get a glimpse into what life might be like with my little boy, and they helped me realize something huge: that my life would be so incredibly normal, in spite of what seemed like such a scary diagnosis at the time. Links to many of my favorite Ds mommy blogs can be found on the right-hand side of this page.

As amazing as life with Colin has been in this first year, as much as I adore him and want to eat him up daily, as much as he is my favorite part of this experience (obviously), the love I have for the Down syndrome FAMILY comes in at a close second. Because I have Colin, I was linked up with incredible people like my beloved Lexi, whose Abby is betrothed to Colin (I met her on babycenter, so it's sort of a matchmaking site, too, in a way), and so many other awesome moms who have now become my good friends. Seems like everyone I know in real life has a friend or a family member who has a child with Ds, and we've been connected with each other because of this bond. I've been linked to people on Facebook through people I know in real life--those people say, "Oh! You have a kid with Down syndrome? I'm sending you friend requests for 100 people you need to be friends with!" And those people have embraced me. We may have nothing at all in common other than each having a child with Down syndrome--we may differ in religion, political views, geography--but the bond created by that extra 21st chromosome is strong. During those times of uncertainty, of wondering what lies ahead for us with Colin, I look to those who started down this path before I did, and I see that in spite of the challenges that come with the territory (when has parenting ever NOT involved challenges?), these parents LOVE their kids, and are proud of them, and are tremendously grateful for the opportunity to parent them. And I realize that in parenting Colin, I find myself in very good company in this Ds family. So it's without hesitation that I'd say to others who are just embarking on this journey, "Congratulations! And welcome to the best club you never knew you wanted to join!"

Friday, February 17, 2012

Friday, February 10, 2012


When I was tucking Christian in the other night, I noticed he had a bonk under his eye, like the kind of bonk he might have gotten from playing in a really tall, skinny box with Carinne, and maybe I'd told them it wasn't a good idea to stand it up on one end and climb into it by standing on the back of the couch, but maybe they did it anyway, and maybe it had fallen over and he'd smacked his face on her shoulder. Or something. So I said, as I tucked him in, "Ooh, looks like you're getting a black eye, buddy." And he said, "I wanna see!" But I didn't want him to get out of bed, so I told him I'd just take a picture with my phone:

"Well, that one didn't really work. You were all squinty. Let's try again. This time, don't squish up your cheeks....."

"Oh. You still can't see the bonk, huh? OK, we'll try again. This time, maybe try and keep your eyes open wide and look up...."

This time he swore he could see it. Awesome. (I swear to you that he had a big red spot under his right eye. I wish I knew how my phone accentuates blemishes on MY face and doesn't pick up on Christian's eye bonk....)

And, just so I could capture what he looks like normally, I took another picture today. "Hey, Christian, smile!"

Ummm.... OK. Good enough, dude.

Thursday, February 9, 2012

Meet the SS2000

I don't blog often, but when I do, it's about the most important stuff in our family's lives. Those things that I'm most passionate about, that make me all giddy inside. This is why today, I present to you a blog post about (dun dun da duhhhhh): The DeVilbiss Snot Sucker 2000. (It's actually the DeVilbiss Homecare Suction Unit. Not quite the same ring to it, right?) Here's a photo of it:

This blurry photo shows Colin making out with it. He loves it almost as much as I do.

(I took a video of it in action, but it was crap because I can't record a video on my phone AND pin down little flailing arms and hands that like to help AND keep a little head still, all at the same time. You'll just have to imagine the hum of the motor and the delicious slurping, sucking sounds.)

This device--slightly smaller than a car battery--has brought our family immense joy and satisfaction in our daily lives. And by "our family," I mean me, because I'm the mom, and you know what they say about when Mama's happy. The reason I have this wondrous apparatus is that a couple months ago, I told my pediatrician (I have a MAJOR doctor crush on the guy--he's just been so great to our family over the years) that it seemed like Colin's nose was ALWAYS congested, and that any congestion made it really hard for him to eat and sleep, because of his teeny-tiny little airways. I joked to him, "I want one of those wall-mounted suction things like they have in the NICU. Those things are so awesome!" He said, "OK, then. Let's get you one." I think he could tell that I really wanted to kiss him (and I definitely can't do that because I still need him to be our doctor. A restraining order might get in the way of our relationship), so he quickly added, "Well... not a wall-mounted one, but I can prescribe an electric one that will work almost as well." He (more likely, his lovely office staff ladies) called a local home health company and ordered one, and their delivery guy brought it that day. If I'd known how dramatically that guy's delivery would alter the course of my life, I'd have had balloons, flowers, and champagne waiting for him.... Or maybe tickets to a Monster Truck Rally.

Right after I got the SS2000, I did a science experiment with it, which basically just involved sucking out as much snot as I could from Colin's nose with the stupid bulb syringe (those things might work a whole lot better if the bulb part was about as big as a watermelon, so they could get some good suction behind them. But then they'd be a lot harder to pack in the diaper bag....), and then, when I'd gotten out as much as I possibly could with it, firing up the Snot Sucker 2000 and having at it. The results were stupendous! After that little experiment I left the bulb syringe out on the dresser just so I could sneer at it when I passed and make it feel bad for its pathetic inferiority. I sometimes even leave the SS2000 next to it so it will feel the full weight of its inadequacy and shame.

Don't feel bad for it. It has earned the shame and humiliation.

Here's a link to the newer model (the SS2001?), on amazon.com. They're about $170. I pay about $7 a month to rent one (not sure how much our insurance's portion is, but I don't care because they're evil jerks who deny payment on EVERYTHING)). I get to keep the Machine of Wonderment after 10 months, so I guess it's a rent-to-own set-up. The new model on Amazon says it's stationary, but I'm pretty sure it's portable like mine. I even got a handy carrying bag with my rental, plus an AC adapter to charge it in the car, for when you run errands or bring it with you on all your family vacations (unless your husband is unreasonable like Devin and tells you it's too big and not essential enough (blashphemer) to squeeze into the Suburban for family road trips. Next time I'm sneaking it in somewhere before he loads the car). Just to give you an idea of size, here's a photo of Colin and a Slinky in the bag. Bear in mind that Colin weighs just less than 16 pounds. The SS2000 weighs only about 6.

It's padded, too, for a softer landing when it tips over while you're taking pictures of your baby in it.

I've been trying to convince my friend Lexi to keep bugging her doctor for one of these suckers for her little Abby--Abby's pediatrician is a big jerk who apparently likes little girls to suffer needlessly, so she won't prescribe one. She tells Lexi every time she asks for a prescription that she just needs to toughen up and suck the snot out WITH HER OWN MOUTH. Well... she wants her to buy a Nosefrida, but I bet that's exactly what it feels like to use one of those things. I know, I know--there's a bypass/guard thing that doesn't allow actual contact of nasal secretions with the user's mouth, but how much suction can you really provide if you can't control your gag reflex while using it? Some people just can't handle stuff like that--like others can't handle hearing others chew, or, you know, whatever. Today, I found this article from a British website by Down's Syndrome Medical Interest Group (read it because it's cool, but just be forewarned that it mentions "nasal douches." I'm telling you now so you won't be drinking something while you read it. It HURTS to laugh drinks through your nose). It gives solid medical reasoning for the necessity of  keeping kids with Ds clear of nasal secretions to prevent sinus infections and even ear infections. I want to email this part to Lexi's mean doctor:

Basically the whole skeletal structure of the mid-face and of the throat area behind the mouth tends to be rather cramped so that drainage of normal mucous secretions is compromised. This leads to mucous pooling and stagnating in the nasal passageway and this provides a focus for infection. Once infection sets in yet more mucous is produced and a vicious circle results [....] People have in the past probably been too accepting of the problem, regarding it as an inevitable part of the syndrome. We think that health professionals and parents should now try to be a little more proactive in trying to relieve children of the more severe effects of persistent catarrh which often has a detrimental effect on their general health and well-being. Also, for those who are very congested, reduction of the level of congestion can improve night breathing problems and glue ear.

See, Lexi's doctor? There are other, much nicer doctors out there telling you that you need to quit being such a jerk and prescribe one, already!

I know I've heard lots of my Ds mom friends talk about their kids' persistent ear and sinus infections. Does reading this article change your life, because you realize that maybe "mechanical extraction" might reduce the occurrence of those 2 buggers? I know I personally got super-excited about it, because I've been feeling like having a heavy-duty snot sucker might be frivolous when there are kids around the world suffering from things a lot more major than not having a heavy-duty snot sucker. The info in this article helped me realize that our Snot Sucker 2000 is medically necessary equipment. I believe it's part of the reason we were able to keep Colin from being hospitalized when he had RSV last week (is this an exaggeration? I don't know--I don't have any medically trained staff reviewing my blog posts for accuracy. HOWEVER, the past 2 doctors I've seen have asked me if I have medical training because they were so impressed with my medical savvy. That, or they were hinting that I needed to shut up because they're the doctor, not me....).

So, my point is, ask your doctor about getting one of these sweet, sweet babies (just don't ask Lexi's doctor) if your kid's too young to blow their own nose (or even if they're not. I'd love to use it on my older kids, but they wake up every time they hear it turn on next to their beds. It's kind of noisy. And they're strong enough to fight me off. Oh--that brings me to another point: Colin cries and protests for about the first 10 seconds, and then he lies pretty still in defeat. I think he knows it'll make him feel better. Or possibly he just knows resistance is futile). Your life will be the better for it, I promise. There's nothing quite so satisfying as cleaning out the depths of your little one's nasal/sinus cavities so efficiently that they cough a little from the force of the suction (note--for those of you who might point out that maybe such strong suction could harm little noses--I have a tendency to exaggerate. This is one of those times. Colin's never had a nosebleed from the SS2000, and we use it about 4-5 times a day. We just always use a little saline solution first). (Also, just as a caveat, so you can't say I didn't warn you--the snot sucker's parts need to be cleaned periodically. Like, probably more than every 5 days, unless you don't mind the smell of poo every time you turn it on. Not sure what that's all about. Maybe all bodily secretions end up smelling like poo if they're left in a tube for 5 days.... Is that really too gross? Sorry. Anyway, all you do is take the removable parts off and soak them in bleachy water for about 15 minutes--or, fill a container with bleachy water and suction it into the collection canister--and then rinse them off.)

Tuesday, December 6, 2011

Pet Carrot

Remember the sad tale of our frogs who croaked? I held onto their tank and stashed it in the laundry room (I have a bit of a hoarding problem, which stems from an unnatural emotional attachment to objects. But it's mostly under control, because I do get rid of things when I, A: grow tired of them being in my way, or B: watch an epsiode of Hoarders and freak out that I'm heading that direction). Last week, one of the kids filled the tank with water and stuck a carrot inside (did your preschooler ever bring home a Ziploc bag of water with a baby carrot inside as a pet, and they were supposed to sprinkle pepper in the water to feed the carrot-fish?). It's been sitting on the kitchen counter for about 5 days, and I noticed that the water was getting murkier every day.

Finally today I decided to dump the water and the carrot. I figured the murkiness was caused by the carrot decomposing or something, you know? There was also a definite, putrid smell today, emanating from the tank. I noticed as I dumped the water into the kitchen sink that it was littered with lots and LOTS of decaying fragments of frog food. What the...? I had a quick flashback to Stephen King's Pet Sematary before realizing that Dash and Violet probably hadn't come back as undead, evil frogs. That's just crazy. No, one of the kids had been feeding the carrot frog food. So bizarre, right? Do you know how many times my kids willingly and without parental pressure fed the frogs in the 7+ years we had them? MAYBE 10 times. But apparently they fed a carrot daily.

So, my point in sharing this fascinating tale with you is that if you're looking for a low-maintenance, low-guilt-inducing pet, maybe look into the carrot option. You probably wouldn't even need a tank--a cup or bowl or Ziploc bag would be perfectly adequate. But keep the frog food hidden away, or you'll have a stinky mess.