Archives for August 2011

August is SMA Awareness Month. What is SMA?

This. This is SMA.

Kyle just turned four. He adores baseball, golf, soccer, tennis, football, boxing, and hockey. He thinks he can play these sports when he “gets bigger”. He will get bigger as he grows older, but he will never stand. He won’t play these sports, at least not how he imagines he will. And we are the ones who have to tell him that. He is in a wheelchair. Cognitively, he is advanced but he has never rolled, held his head up while laying on his tummy, or is able to bear weight on his legs.

Last week, he told the O.R. staff at the hospital that he can’t wait until he gets older and he can stand.  His surgeons and nurses amicably nodded their heads.  Who’s to tell a little kid that he’ll never stand?  Not our doctors.  He happened to be in the O.R. to have his Achilles tendon completely sliced through so that his feet won’t turn out. So even though this procedure will relieve pain he feels in his ankles and feet on a daily basis, it means that even if a cure for SMA was announced two hours later, he can never stand on his own.

And we have Lauren. She is Kyle’s fraternal twin sister. She also has SMA–and a sense of humor. She is hilarious. She sings nursery rhymes and Disney show tunes. She can speak “Dora Spanish”. She loves to eat melon, any kind of melon. And chocolate chip waffles. She wants to be a veterinarian when she grows up, just like Barbie. She also wants to ride a bike and ice skate “when my legs get longer”. We get to be the ones to explain to her that no matter how long her legs get, she won’t be able to do those things. But she is special–besides driving her own power wheelchair, she can do things that other four-year olds can’t, like competitively play Connect 4. She wants to go to Disney World and be a princess, and her favorite Disney character is Daisy Duck (awesome!). She can’t crawl, turn over, lift up her head while on her tummy, or walk. She is in the 3rd percentile for her age, and her g-tube surgery is scheduled for next week. She struggles to hold herself upright in her highchair, so her scoliosis surgical consult is scheduled for next month.

SMA stands for Spinal Muscular Atrophy. From the moment of conception, my twins’ motor neurons weren’t right. They were born crying and altogether pretty pissed off (fluorescent lighting made them look sort of bad, I don’t blame them), but many newborns with SMA are born silent–these are the SMA Type 1’s. They struggle to breathe, struggle to move at all. Mother Nature, and evolution, are screaming at them to scream! when they’re born, but they are thrust into our world still struggling to take any sort of breath. Breathing requires muscles and motor neurons that do what they’re supposed to do. Those babies don’t tend to last long. Sometimes they die before Mom & Dad even get the bloodwork back with their SMA diagnosis.  Other times, their parents are faced with life-and-death care decisions before their child can even have her first mall portrait taken.

Still other times, SMA babies seem completely typical until 6 months old, or 12 months, or two years. It’s the “atrophy” in Spinal Muscular Atrophy that makes the parent suspicious that maybe there’s a problem–these are the SMA type 2’s and 3’s (Kyle and Lauren are type 2). Even then, the prognosis is grim. Children born with SMA (non-type 1’s) can live until their teens, and in some cases even beyond their teens.

What lames the one causes the death of another. They’re all missing the same motor neuron. There is no prejudice with SMA. And there is no cure. But if there was (but if there was!), the thing that cures the one can cure them all.  The National Institutes of Health categorizes SMA as a disease closest to a cure.

If only.  I’m running out of time here.  I can only manage the symptoms and side effects of neuromuscular disease for so long.  They just turned 4 years old.  I’ve explained to them dozens of times that they will never walk.  Their legs are too weak.  These are not conversations I enjoy, or conversations that I can’t wait to blog about.  I hate it.  I hate this disease.  But if it weren’t my kids, it could be yours.  It will happen to somebody.  To many somebodies.

SMA is one of 40+ muscular dystrophies. 1 in 40 of us are carriers for SMA. There is a screening test to determine whether or not you are a carrier. You can ask for the test, before or after you become pregnant.

I haven’t worked since just after my twins were born. I left my cubicle career to schedule and keep up with regular appointments with the neurologist, pulmonologists, orthopedic surgeons, gastroenterologist, dietitians, orthotics clinic, wheelchair clinic, home health, and surgeons. I never managed to find the time to become PMI certified when my office was a cubicle, but given my experiences sitting in waiting room after waiting room, I bet I’d ace it.  I could teach volumes about “scope creep”. I would give all my Six Sigma certifications, and more, to not know what I know about children and terminal disease.

If I ever come across as funny to you, please know that I do so over the beeps and whirrs of feeding tubes and pulse oximeters.  That I could get away for four days to visit BlogHer was entirely due to the village here which supports us and keeps us sane on the rare occasion when I can leave these kids.

SMA is life changing–not just for its direct victims, but for their parents and families. We are exactly like you. In fact, many of us had typical healthy children before we ever needed to know about SMA.

I can’t speak for every family with a wheelchair, but this family welcomes conversation and questions.  And please–converse, and ask.  In our small community up here in North Phoenix, many of you already have, and we appreciate your interest and attention.

That’s all. I just wanted to tell you that. August is SMA Awareness Month. If you didn’t know what SMA was ten minutes ago, you know now. It’s all about the kids. See The Gwendolyn Strong Foundation and Families of SMA for more information.

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Cassandra can be found on Twitter @aclevergirl.  Learn more about her family’s unique challenges and why they have hope for a cure for muscular dystrophy at Byrds for a Cure.

No Longer a BlogHer Virgin.

With my first ever BlogHer experience under my belt, I am realizing how addictive conferences like this can become.  I fail to see how a long weekend filled with inspiring women and a whole lot of drink tickets could ever be not fun.  If I call it “an amazing weekend, filled with meeting great people and attending fantastic workshops”, will you hate me simply for being so uncreative and echoing the impressions pretty much everyone else has shared?  Because it was all those things, and I can’t think of other ways to express it!  This trip rates approximately fourth on the list I call Great Trips of My Lifetime.  Preceding BlogHer ’11 on that list, we have my first trip to Disneyland when I was five years old, our English Premier League Soccer and Marbella Beach Extravaganza of 2003, and my solo vacation to one of my favorite cities in the world– Vancouver B.C.–where I met a great many of my favorite hockey Twitter friends last year.  But BlogHer ’11 is unique in one specific way for me—on none of those other trips was I given sex toy in a swag bag.  Holla, BlogHer ’11!

I’ll agree to spare you the minutiae of such a long, kick-ass girl’s weekend, but let it be known that there is no better road trip partner than one Kelly Loubet.  There is never a shortage of thoughtful and compelling conversation, giggle-inducing silliness, or 80’s arena rock ballad sing-offs when one is sharing vehicular space with Kelly.  Sure, at 5am when we left my driveway we were both a little quiet—but as soon as the coffee kicked in, one of the most enjoyable road trips I’ve ever experienced was underway.  I had forgotten what it was like to drive for more than fifteen minutes without bickering over DVD selection or 132 “are we there yet’s” before making it to Gila Bend.

We spent Thursday night at The Big Toy Book party.  I had my first opportunity to experience the Kinect on the Xbox 360 and was impressed (though this technology is fantastic, it does not involve a game controller and does require full use of the entire body).  I also got to test out some of the new Leap Frog products, including the not-yet-on-store-shelves $99 Leap Pad, which looks like it could be a great tech toy for my four year olds who are advanced cognitively but have limited hand/wrist dexterity and strength.  I would love for the twins to be able to test out this toy to see if it’s a worthwhile investment while we wait for the price of iPads to come down.  But the best part is that the Big Toy Book party gave us large swag bags full of toys for the kids!  The items that Kelly and I agreed our kids wouldn’t be interested in are resting in a “treasure chest” at our local children’s hospital.

Friday was the most fulfilling of the days I spent at BlogHer ’11. This day featured the extended workshop session for bloggers with special needs children.  The two hour time slot was both spent discussing topics around blogging about our unique special needs circumstances and bonding over our general feelings and frustrations that so many parents of special kids share.  If any of you blog about your special needs kids—even just in a private manner—I urge you to consider attending BlogHer ’12 next year in New York.  The connections made in the room during the Special Needs mini-con, and the camaraderie and resources it will expose you to, will make it worth your time.  I promise.  My favorite speaker was Robert Rummel-Hudson, whose book Schuyler’s Monster so far ranks as the most heartily funny yet tragic memoirs I’ve ever read.  My twins’ condition is nothing like what his daughter suffers from, but I identified so much with his perspective and his sense of humor and it will surely resonate with many of you.  I strongly recommend anyone to pick it up and read his story.  I have more thoughts to share regarding the special needs mini-session, which I’ll post in the next week or so.  If you’re interested in reading what people have to say about that special needs session and you’re on Twitter—or hell, if you just want to Google it—follow #bh11specialneeds.  Good people.  Good stuff.

Saturday was a bit of a lazy day for me.  It eventually ended with a perfect evening spent at the Aiming Low party and the CheeseburgHer event.  If anyone knows how to party, it’s 3,000 women bloggers hundreds of miles away from home in a ballroom filled beds and all-you-can-eat McDonald’s cheeseburgers and fries.  And—well, yeah–the booze is another story which I would share if I could remember it.

And next year?  You bloggers who don’t probably even know that I hang on your every word?   Please arrange yourselves as if you were in a receiving line at a wedding when I arrive, so that I may introduce myself and compliment you.  I’m often sarcastic in my writing, but I am sincere in person.  And I get all twitchy and bunny-boiling when I’m overwhelmed and I’m left to figure out who’s who on my own devices.

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Cassandra can be found on Twitter @aclevergirl.  Learn more about her family’s unique challenges and why they have hope for a cure for muscular dystrophy at Byrds for a Cure.

ABC’s, 123’s, and Four Years Later

Note from the Editor: It’s Friday… and we’re doing some Dad Stalking! This week, we’re hearing from John @TheDaddyYoDude. In this post he talks about what it’s like for a dad to send his child off to school for the first time. As a mom, this really touched my heart. You can read more from John on his own blog The Daddy Yo Blog. Happy Weekend! xo Kel

It has been four years and three months since my son was born. Not that long in the grand scheme of
things. I have watched this little guy grow from an attached infant, to explorer one year old, jabbering
two year old, stubborn three year old, and now, growing four year old. I have listened as he learned to
sing his ABC’s completely and count from one to 20. Now? Monday he will head into a whole new world.
A new environment with new faces, new noises and smells. Is he nervous? Why of course not. Guess
who is?

Yeah, you guessed right. It’s daddy who is more nervous. This year, Little Man heads to 4 year old
preschool at the primary elementary school in town. Suddenly, I have realized how fast this precious
time really goes by and how fast it can be that you lose a moment that you could have had. I have also
discovered a new set of fears, concerns, and worries.

I think back to my elementary school days. I was small, dorky, had a mullet, and some of the worst
glasses to come out of the late 80’s and early 90’s. I talked too much and paid attention too little. They
were some awfully fun days. But I also remember the fear of being laughed at. Those fears that make
you fake sick, head to the nurse’s office, and pray as hard as ever that you will soon be coming home.

My son is such a sweetheart. He has a huge heart, a compassion for others, and the ability to be an
instant companion. He also has the ability to spot shadiness and bad motives at the drop of a hat.
The two combined though turn him instantly shy in situations where he feels intimidated or scared by
others. And I worry that as he enters this new world of elementary school he will find himself in more of
those scary situations.

This year, it may be harder on me than it is him. Stepping into new places and situations is a part of life
he has to go through. I know this deep down. He will have to learn to face objectiveness, meanness, and
humiliation. It happens to everyone in life. But I’m not ready to see him have to do that. To me, he is still
my Little Man. He is still the little dude that danced to Weezer with me when he was 8 months old. He is
still the same little dude with the Mohawk, who was thrilled about figuring out how to put a straw in a
cup. In reality though, he is no longer those things.

This year I find myself at a new challenging point in my fatherhood. I find myself at the point that I have
to force myself to realize that these little things will eventually grow. They will get smarter, taller, more
coordinated. And soon, they will not need this guy to direct every step. I am scared, I am a bit confused,
and even a little sad. This is harder than I thought it would be. I know in my heart that I am watching a
beautiful thing happen. If he only knew the fear behind the smiles. But I choose not to show it.

Instead, I will show the pride that is taking a little longer to swell up this year. I will show the excitement
that is overshadowed in my mind by fear. And I will show him that daddy will still be here whenever he
is needed. To comfort him, to guide him, and to look back on as he gets a little farther down his life’s
path.

Gushing and Giggling

While spending four days sharing, networking, and in general trying to avoid debauchery last weekend at BlogHer ’11, it occurred to me that I may not have the bandwidth to have a meaningful post ready for Twin Tuesday this week.  It was a wise idea to beg someone to guest post for me, as I still haven’t decompressed, unpacked, and have just barely sobered up.  Dave, another parent of twins who spent the weekend not in San Diego using up all of his drink tickets and that of his roommate’s, was ready to jump in for me this week.  Thanks, Dave!

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I’m rather self indulgent when it comes to my kids. I find myself gushing, often just to myself as I watch them quietly from a distance, about how funny they are, how cute they are or maybe how clever they are. They are definitely those things and more, but doesn’t everyone feel that way about their kids?  When writing these short pieces about them, or about anything related to being their parent, really, I feel like I should preface it with an apology, in advance, because I’m about to, for a little bit at least, become that guy who opens his wallet and out pops a long series of pictures: “Here’s one of Emma making a goofy face, and here’s one of her twin sister Maddie making the ‘I’m making a poopy’ face…aren’t they adorable?” Just because I feel that need to apologize doesn’t mean they can’t compete with anyone’s kids in a contest of cute and charm…. Where their real powers lie, however, is not in the charm or the cuteness areas, rather, it’s in their powers of being “wildly energetic” and “surprisingly sarcastic”.  I was reminded of these things a couple of times earlier this evening. This just brought to the front of my mind just how lucky I am, as the father of 3 little girls (Sydney, 5, and twins Emma and Maddie, 18 days shy of 2 years)..and just how much trouble I may be in when they’re teenagers.

Earlier this evening, we took the girl to the gym with us. We’re members at a local YMCA, which has this amazing KidCare center that the girls love to go spend some time playing in. I had one of those moments tonight, where I was involved in pursuit of one of the girls, Emma, who is by far the craziest of our 3 girls. As we walked in to claim the girls and head home after our work out, Emma saw me coming. The attendants who run the KidCare center said at that moment, “your girls are very…um…energetic.”

We hear that a lot, as well as how they smile almost constantly, and how they’re little flirty charmers. They are that, each in varying degrees. But energy is in no shortage. So, as I walked in, Emma spots me, and runs to the furthest part of the center…pivots, and give me the “You’re gonna have to catch me!” look. The chase was on…I chased her around the pool table…she giggled. I chased her around the art table, she giggled at me again….I chased her around the bookshelf that holds all the board games….she giggled and ran again. Maddie, who by this time was holding her big sisters hand and was making her way toward the door out, when I glanced at her and said “Hi Mads”, she quickly shot back a “Hi Daddy” and then sweetly giggled, knowing I was hunting down her sister. That in itself caused me to stop for a moment in realization of how lucky I am to have such bright, strong-willed and fiery little girls that are filled with all this light…and giggles. I think, maybe, a little bit of that came from me, but mostly it comes from their mother.  I, however, am confident that these little sarcastic looks Emma gives me are from me and nobody else…she shoots me these giggly-eyed, eye-brow cocked looks as she runs around the table, making certain to stay just out of arms reach form me until I finally, surprisingly, corner her by the climbing wall. When she realized that the chase was over, and I’d caught her, as I picked her up, she threw her arms around my neck and, you guessed it, giggled.

I just think back to a moment during the chase, just after Maddie laughed at my pursuit of her twin, I looked over at Emma, about 12 feet away from me, on the other side of a table surrounded by kids and crayons, Emma gave me a look that just said without the words “Your move, Daddy”.

That wry sense of humor that my kids have is one of my favorite things about them.

Love that so much!

Opps! There ya go. You caught me gushing. See, I told you…. Sorry about that. I’m pretty sure the twins would be rolling their eyes at this fact, if they knew what it was.

So, what makes you gush about your kids?

Baseball. SPF 45. Lemonade. Bee stings. Corn on the cob. Sweat. Vacation.

Note from the Editor: It’s Dad Stalking Friday and Jeff @OWTK is talking about family vacation memories. I have many fond memories of the ice cream man and running out to meet the truck… burning my feet on the hot Phoenix street. Memories of my family heading out on our yearly road trip to Disneyland… And now I see my own children creating these same vivid summer memories. Except I’m yelling “Don’t forget your flip flops!” as they run out the door *squealing*. Keep reading to take a peek into the summer memories of an icky boy… now called, Dad. And read more of his stuff at Out With The Kids.

If you’re thinking summertime right about now, you’ve nailed it. Congratulations!

My gang of four finished up a 15-day jaunt in southern California early last month. On this epic 75-degree adventure, my wife and I conspired to create indelible memories for our daughters in San Diego (the famed Zoo, USS Midway aircraft carrier, gigantic county fair, strawberry & cream cheese stuffed French toast!) and in the L.A. area (Channel Islands hike, pool party with kindie musician friends, Mulholland Drive, Santa Barbara beach & carrousel, and Legoland!)

Our wonderful west coast journey got me thinking a lot about my own childhood vacation memories. I had enough downtime and, much to my surprise, quiet time in route to fun sights and new cities to remember multiple trips to the pink sands of Bermuda, that 3-game series at old Tiger Stadium in 1987 to watch my beloved Tigers in person for the first time, and the countless civil war battlefields my parents schlepped me around to feed my inner history buff. There are images, sounds, smiles, and smells burned into my brain – all wonderful memories of a time when I was the one being cared for, transported, and entertained.

Taking a coastal holiday as a family should fill young children’s hearts with joy and heads with sunny thoughts of crashing waves, toes buried in sand, ice cold milkshakes, and carrousel music. But woven into such sun-splashed pleasantry for us this summer were, as always, handfuls of tears, four letter words, and slamming doors.

Whether they have faded, been suppressed or were never there to begin with, there’s positively no negativity in my own decades-old internal slideshows. This gives me hope that what my wife and I are giving our daughters are entirely joyous experiences worthy of a romantically tight mental grip, that the senseless bickering and idiotic arguments that pop up when spending 360 consecutive hours together won’t prevent these glorious family moments from becoming cherished summer vacation memories.

It’s all fun and games until my kid asks me about the birds and the bees.

My oldest is a baby girl who is seven and a half years old.  Ahh, I can remember way back in the good ole’ days when I expelled her from my loins, and now she’s asking about them–oh, not technically asking about them.  But I have reason to believe that she’s trying to reconcile the stork theory of child birth with the “doctors cut you open and take out your babies, right?” theory.

First of all, there were no doctors “taking out my babies”.  There was just one board-certified maternal-fetal medicine specialist in that room–the rest were student observers, floor moppers (most important individuals in an O.R., if you ask me), 4 R.N.’s for me, an anesthesiologist for me, a couple E.M.T.’s to observe, two three-person neonatal teams for them (sidebar:  “Neonatologist” is too fancy for spell check to acknowledge as being correctly spelled.  Discuss.), and probably my insurance agent with a clipboard trying to calculate how this $100,000 pregnancy might eventually become financially advantageous.

Anyway, that entire paragraph was me trying to be humorous in order to forget the point of this post.  You would, too, if you knew the point was that the time has come for me to talk to my child about sex.

I haven’t yet looked for a clever, informative book to introduce the seven year old to sex.  I need to, though.  I know this.  It is time.  For her.  It is time for her.  It is.  Everyone needs to learn at some point.  I’m psyching myself up for it.  Yep.  Tooootally #1 on my “cool stuff I’m totally going to do” list very, very soon.

Her siblings–newly four years old–are now figuring out that they have body parts that they can’t always see.  Lauren recently spied herself naked in a mirror and declared that she has “a bum on her front”.  Say what?  Oh.  Uh, I think I get that.  Err.  Um.  Well?  Mm-hmm hey, let’s go get Meow Meow and Baxter and have a pretend tea party, yes?

Then Kyle, also four years old, realizes he has a “thingie”.  I glance away to grab a new diaper and BAM, my kid becomes anatomically self-aware.  I inform him that his thingie is called a “penis”.  He asks me what his penis is for.  “For going pee-pee, of course!” I cheek-pinchingly replied to my sugary sweet baby boy.  “What else?”  “What else?”  “What else is it for?”  he asked.  Huh.  Frankly, it was this conversation which made me the most uncomfortable of all my conversations with my children–and I am definitely not a wimpy mom.  Still I exclaimed, “Hey, that *beep* we just heard means that your iPod is finally charged, woo hoo!”  “Yeah, Mommy!  I want to play Monkey Preschool Lunchbox!”  Word.

And the world is back to where it should be.

So.  Taking suggestions on a birds/bees book for the seven year old.  I cannot emphasize enough how much I am not looking forward to this conversation.  What’s silly is that I bet it goes just fine–she probably knows more than I think.  She’ll probably have fewer “technical questions” than I fear.  In fact, ten bucks says she rolls her eyes and informs me she learned all this from watching Disney XD (I’m not sure what that channel is about, but any channel with an “X” in the name, well….).  If anything notable occurs, I will keep you posted.

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Cassandra can be found on Twitter @aclevergirl.  Learn more about her family’s unique challenges and why they have hope for a cure for muscular dystrophy at Byrds for a Cure.