Double Double Trouble Trouble

2014 is shaping up to be a great year: the kids are having stellar academic success, we’ve avoided the flu and RSV (a constant concern at our house due to the twins’ weakened respiratory systems), pitchers and catchers report in just nine days and the pieces around our charity golf event are all falling into place.

But for my parents, January 2014 has something in common with January 2007:  they are unexpectedly expecting twin grandbabies.  Again.  Out of scores of aunts, uncles and cousins on both sides of the family, the only people to become pregnant with multiples are my sister and me.  I don’t know if my parents wonder what they did wrong with us or what they did right.  Two daughters, two sets of twins?  Like my sister and I didn’t overachieve the hell out of the 1990′s enough??  I’m still waiting for the delayed reaction of the cardiac variety on the part of either of my parents, but suffice to say they’re keeping that Gerber Baby life insurance company in high heels these days.

Until 2007 the last set of twins born on any side of any of our families occurred in 1932.   I’ll never forget surprising my folks with my ultrasound picture showing Kyle & Lauren cozily gestating together.   Imagine everyone’s surprise not too long ago when my sister announced she was pregnant with twins!  Actually, all I can recall from that moment was my husband and I literally pointing and laughing at her.  I know–we express our love and support to each other in unique but profound ways.

Twins!  Sure, it’s a blessing and all that, right?  Everyone wants to have twins, right??  Double the trouble and double the fun, right??  Yes, and no.  Truthfully I don’t personally know of anyone who felt this way when they found out they were pregnant with twins.  Not that those perky, positive pregnant women don’t exist, but if I may be frank–don’t call me Frank–the only women I know who say that are women who don’t have twins.  Because the truth is that the reality that comes with an ultrasound with more than one handsome little devil in the frame can be overwhelming.  Not just one nursery needed now, but two–I hope your house is big enough.  Sometimes the backseat of your car isn’t even long enough to accommodate twin car seats if you also have an older child in a booster, so have fun measuring your car’s dimensions and then maybe trying to afford a new car.  One baby is a lot of work, and twice the number of babies are sometimes more than twice the amount of work–and let’s hope you can afford double the daycare expenses.  And for some of us, a pregnancy with multiples becomes a high risk pregnancy, and suddenly getting your pink and blue nursery or buying those Thing 1 and Thing 2 onsies seem like really shallow reasons to have ever wanted twins.  And double the fun?  How about double the co-pays, every doctors’ visit, every time–beginning the instant when Baby B is born.

Okay, so maybe I’ve scared your collective ovaries into never ovulating twice in the same cycle.  It’s not that twins aren’t great–but they’re great because they’re YOURS, not because their formative weeks were spent with a womb mate.  If your twin pregnancy, birth, and first few months at home don’t give you a heart attack, watching your two wee ones becoming aware of their world, learning to smile, growing up with each other as best friends and co-conspirators are really the best things about having twins.  You just have to get through the hard part at the beginning.  It really does get better.  I promise.

And whatever you do, pack a hospital bag every time you have an ultrasound–I learned that lesson the hard way.  Figure out when the least convenient time would be for you to be hospitalized for a few days and that’s exactly when your cervix will prematurely dilate.  It’s science.

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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 byrdsforacure.org.

I Wanna Hit a Golf Ball Like You, Mom.

That’s what my son told me last night.  He was earnest and troubled because he genuinely wants to hit a golf ball.  And a baseball.  Tennis ball.  Shuttlecock.  He REALLY likes the idea of that cathartic WHACK of hitting a thing farther than anyone else can hit it.

I reminded him that I am a pretty terrible golfer.  If I’m on your golf team, I may bring the personality (and…the profanity) but not the shots.  Nobody should want to hit like me.  But my son wants to play golf.  To watch his drive soar into the air.  I explained to him, again, that not only is he very young but his muscles are too weak.  He asked me my age.  I told him thirty seven.  “So when I’m thirty seven, I can hit a golf ball up into the air like you do?”  I reminded him that his disease makes his muscles too weak.  His arms are not strong enough today and even when (if?) he reaches thirty seven he likely will not be able to hit a golf ball into the air.  Or maybe not–he practices drills at home.

“I don’t like SMA, Mom.  I want to do things.  I want to hit a golf ball up into the air like you do.”  He looked down and drove his $65,000 electric wheelchair off to pout in a corner.  What do I do now?  I have no idea.  I am as age-appropriately honest with him, and his twin sister, as I can be–but how to explain to your six year old that thanks to a stupid Punnet square he can’t participate in the things which are important to him?  How to explain to him that he should feel lucky to even be still alive now at age six?   I don’t know.  I don’t have the answers.  I just want no other kid and no other parent to hear a diagnosis of SMA and feel the grief and despair that my family has felt.  And there are thousands of families who have dealt with the same situation–or worse.

August is SMA Awareness Month.  Every August, overwhelmed parents of terminally ill children with zero free time on their hands hire a respite caregiver so that they can blog, Facebook, or otherwise share their stories and do their part to increase awareness of Spinal Muscular Atrophy.

As it happens, I am lucky enough to be an early bird who gets the chance to blog before the kids wake up.  Before the feeding pumps beep and stop for the morning, in between the twins’ needs for repositioning, to aid them in comforting their bodies as they sleep because they can’t just turn their bodies on their own–raising awareness of SMA is important enough for me to take the time right now to tell you about it.

I’ve written about Spinal Muscular Atrophy every August for the last four years, hoping to increase awareness and public interest in the disease and generate compassion for the children affected by it.

The bottom line is this:  Newborns, toddlers, grade-schoolers die because of SMA almost every day.  Of these kids, most die because their diaphragms and other breathing muscles are too weak to allow them to breathe.  I highly encourage you to read this parent’s experience: Loving Wyatt to the End.

This disease is genetic.  It is not a random happenstance, like identical twins or landing at your destination’s airport bar just as happy hour has begun.

SMA may not be your kids, but SMA is my kids.  It could be your future kids, your sibling’s kids, your neighbor’s kids.  SMA is the most common genetic killer of children and one in forty of us carry the gene which causes it.  You can be tested to learn whether or not you are a carrier.  Your unborn child can be tested via amniocentesis.  If your doctor suspects your child could have SMA, there is a blood test to determine it.  These tests are not new.  Still, not enough of you are aware of SMA.  I know that not enough of you are aware of SMA because if even half of you were really aware of SMA then society would be screaming it’s head off about it and SMA would be cured by now.

In the article linked to above, Paula buried her baby because of SMA.  Because of SMA she lives today with the memories of her sweet infant’s last moments and of burying him.  Because of SMA my six year-old twins will live in electric wheelchairs and be dependent upon a caregiver (me, most likely and happily) to tend to their every need for as long as their weak respiratory systems can carry them.  These kids are incredibly intelligent, highly social, gloriously happy individuals with great senses of humor–our world needs more of them, not less of them.

Still, my twins’ worlds involve daily back and hip pain (thanks to scoliosis and subluxation issues resulting from muscle weakness) , chewing and feeding struggles (weak tongues and jaw muscles), and futures of spinal rod/scoliosis surgeries, acute respiratory distress and hospitalizations for pneumonia.  Add to that the frustrations on their part in not having the hand strength to shoot a Nerf gun, swing a bat, press the “B” button on a Wii remote, remove the cap of a Crayola marker, lift a full sippy cup up to their mouths or even grasp a pencil hard enough to adequately write their names on a piece of paper.

I spent the first year after their diagnoses grieving.  And then I got off my ass and became determined to help find a cure for this horrific, debilitating disease.  SMA will take my children from me one day, but I will do my damnedest to prevent other children from suffering so much and to prevent future parents from enduring such pain.  I cannot personally cure this thing, but I can raise money and make a difference–and so the Walk And Rolls and golf tournaments keep me busy so that I can detach a little bit and get distracted and feel productive.  I no longer feel so helpless in keeping my kids alive (with my own two hands, sometimes–literally) because I am doing something to help people smarter than I am to cure this thing.

But I need everyone else’s support, too.  SMA may be overwhelming, but it’s curable.  I hate SMA.  I’d much rather worry about the cost of sending my twins to college than pondering the probability that they will even live to see college.  But reality is reality.  All we can do is work as hard as we can so that my reality and my twins’ reality isn’t someone else’s reality in years to come.  Nobody wants a cure for SMA more than we do.  SMA does not define my children but it dictates how we live our days for as long as we keep living them.

So.  This is SMA.  It’s our daily reality.  If this stream of consciousness makes you aware of it, then good.

Carrier-Testing-Website

Kyle Golf

 

 

 

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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 byrdsforacure.org.

Potato, Potahto: A Story of Me, a Fictional High School Football Player, and My Kids.

Last night I was in such a hurry to gobble down some delicious deli-purchased “loaded baked potato salad” that I grabbed a fork and began inhaling the goodness before my kid could come around the corner and accuse me of doing anything wrong.  Admittedly, my intention was to consume as much of it as possible because let’s face it–kids don’t appreciate pricey pre-made deli salads.  Plus there was still one last baggie of microwaveable Kirkland edemame in the freezer–my kids got their servings of vegetables after all, so pipe down you guys.

But with my head still inside the fridge I noticed that my frantic desperation to shove the creamy, bacon-laden, green onion-topped side dish into my face-hole caused me to grab a fork with the wrong hand and literally begin shoveling the food into my mouth.  I was eating with the wrong hand–have you tried this recently?  I was lucky to even get the fork near my mouth, much less finish half a pint in three minutes (ahem).  I did slow down though, just to behold the sight.  I gripped the fork in a most caveman-like way, then stabbed at the food, and then sort of stabbed the food into my mouth.  All I know is that there was lots of stabbing.  I was embarrassed.  I darted my eyes in either direction, making sure nobody witnessed all of my awkward stab-eating and then slowly capped the container.  I couldn’t get over how weird it felt–not the secret binging of potato salad deliciousness, but doing it with the wrong hand.

I am left handed.  But this time, I “ate” with my right hand.  There are American pig farmers who shovel slop into troughs more delicately than my right hand was able to place potato chunks into my mouth.   For a few moments there I was a neanderthal:  “FOOD.  GOOD.  PUT HERE. (unintelligible) MMMM.”  Honestly, I should check my hair to make sure some errant mayo residue isn’t still visible.  Imagine a husky, hungry, overworked young high school wannabe football player.  The kind of kid who drinks a gallon of milk a day.  After his two-a-day he sits down to dinner and doesn’t even care what’s on his plate or what it tastes like–he needs protein and carbs inside his belly and preferably before he passes out on his bed in a Gatorade-induced electrolyte coma and the dim glow of Angry Birds Star Wars Edition.  He’s a machine.  His thick, fork-grasping fingers are the vehicle which delivers food to his face.  He finds a way to get the job done and now here we are back in the glow of my fridge, me gripping this fork and stabbing potatoes into my mouth.

So anyway, this is a post about the twins and their handedness.  It’s something that’s been on my mind, but then last night I grabbed that fork in a weird way which made me write all that and I’m not even sure what that has to do with my kids.  It’s been fun to write so far, though.

True to their theme of “yin and yang”, Lauren is mostly left handed (unless she’s being evaluated by an occupational therapist, in which case she “just can’t decide!”) while Kyle is steadfastly a typer.  That’s right.  He types.  He’s right handed if you force him to hold a writing instrument, but his kindergarten team introduced him to a keyboard last year and he found he can express himself so much more with a typewriter.  And I love it!  A pencil requires hand strength, requires grip.   He can’t apply the pressure to write words with a pencil.  But with a keyboard he can express volumes. Still, he exhibits typical attributes of a left brainer–excels at math and problem solving but struggles to express his creative side, keyboard or not.

Lauren though, she’s my girl.  A fellow lefty.  I totally relate to her.  She starts the day left-handed (writing, eating), and as the day wears on and she fatigues, she tends to favor her right hand.  I like to think she’s training herself to be ambidextrous but I can see the telltale signs of a right brainer–she’s artistic, imaginative, expressive, and creative.  I don’t mean to suggest that her twin brother is none of these things, but…well, kind of.

The twins have just finished kindergarten, and I understand that handedness might still be waiting to establish itself with them.  As for me?  Well, I just hope that eating my next meal/late-night fridge snack is something so normal and not awkward that I don’t feel the need to blog about it.

And with that, send forth upon me some epic potato salad recipes–something I can’t buy from Safeway.  Pretty please?

potato salad

 

 

 

 

 

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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 byrdsforacure.org.

Disneyland! Differently-Abled.

m4s0n501

Our family recently enjoyed nearly a week at Disneyland in Anaheim, CA and boy was it an experience.

My oldest is a nine year old daughter and the twins are six.  Their ages are perfectly ripe for the magic of Disney–young enough to approach every minute in the theme parks with carefree jubilance, but still old enough to stay up late enough for fireworks.

Day One:  Boy twin and big sister head with Dad to the Happiest Place on Earth.  Girl twin spends all day in the Most Vomitous Place on Earth (my hotel bed).  Girl twin’s tummy trouble is a remnant from some intensive breathing treatments after a recent pneumonia episode.  Boy twin and big sister enjoyed some shows at the theme parks and some eleven dollar chicken fingers, but didn’t have enough hands on deck to experience any rides.

Day Two:   Girl twin tummy is feeling iffy, but good enough to roll both her and her brother downstairs to the swimming pools.  Their pools are spacious enough to find a corner where the twins can relax face-up in their neck floats, slowly acclimating to the zero gravity of water and remembering the joy of moving their limbs freely.  Their muscle disease (SMA) means that gravity is their enemy on a daily basis, so being in water is a liberating experience for them.  That is, until Lauren falls ill again and spends more time in the Most Vomitous Place on Earth (my hotel bed).

Day Three:  An off day–hung around the hotel.  Chilled.  Ventured to Downtown Disney.  Lauren begged for a Minnie Mouse teddy bear at Build A Bear and I said ‘yes’ because I was worried that if I didn’t agree she would throw up on me.  Again.

Day Four:   Finally, a day for the whole family to experience Disneyland.  And I must say the Disneyland website isn’t entirely accurate in terms of how wheelchair accessible some of their rides are.  Thanks to some initial medical issues, this was our only day as a whole family at Disneyland–but boy did we make the most of it.  Our oldest and her dad rode the Matterhorn twice.  She and I rode Space Mountain–where I faced my childhood demons (omg, that ride seriously messed with me when I was a kid).  The twins enjoyed Alice in Wonderland, It’s a Small World.  Sometimes we parked their electric wheelchairs and picked up their bodies to sit them gingerly next to us in order to experience the ride.  If my kid wants to ride Pirates of the Caribbean, then my kid rides Pirates of the  Caribbean.  Twice  And the remainder of the rides, well?  We had to tell them they couldn’t ride them.  Honestly, that was a super sucky part of our trip.  But such is life.  Kids in wheelchairs can’t do everything that other kids can do, no matter how much I advocate, complain, or stomp my feet.     Those were the only rides they could get on.

Living with neuromuscular disease means that one must forgo many opportunities when it comes to theme parks.   The theme parks are huge, geographically speaking.  There are so many miles for a six year old to drive in his/her electric wheelchair-in and out of Fantasy Land, towards the popcorn stand, focus on Small World, kid! and hey don’t run over all the toes of the people who are looking up, not down.  There are infinitely more obstacles for them to navigate through, crowds to focus on, lines to wait in.  When it comes to experiencing a Disney theme park in a wheelchair, there is nothing fast or fun about it. But try telling a six year old girl that she can’t meet Rapunzel because the line is too long, for in this heat her heart rate will increase and if we stay here much longer the oxygen saturation of her blood will decrease to the low 90′s.  And I don’t know where the nearest hospital is, but it’s not worth distressing her systems just to wait in a line–even if it IS for an amazing Disney experience.

However!  Thanks to some great planners and compassionate crowd-handlers at Disneyland, my children were regularly escorted to the front of the line to every amusement park ride.  We got to skip the lines.  We pre-planned our time in the park and we were already behind our schedule—everyone beats us to the best rides, to the Bibbidy  Bobbidy Boutique waiting list.  Everyone.  We are slower.  Our medical needs slow us down.  I do my best to plan and consider and accommodate, but occasionally there are unexpected delays–and this is how the Disney Guest Assistance Pass helps us.  It smooths the rough edges over what is already an arduous experience.  Disabled children pay the same admission price as any other kid, so I think it’s fair that they and their families are able to more freely access the rides, as long as they can get to them.

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This is the same Guest Assistance Pass which recently made the news with those rumors that financially advantaged families are known to “rent” a local disabled person to join them at Disney theme parks so that the non-disabled family can nab a Guest Assistance Pass and therefore skip the lines.  Personally, I am not disabled and so I choose not to speak to this controversial subject or try to represent a demographic of which I am not part.  Indeed, there are two sides to this argument but I won’t engage with words on this faceless internet typing machine.  Suffice to say that if it weren’t for our Guest Assistance Pass, the children would have experienced just a fraction of the theme park experience and we are grateful for the Disney folks to afford them opportunities they would not have otherwise had.  And as a reminder to pretty much everybody: not all handicaps are visible to the naked eye.

In any case, a fantastic trip to Disney–after the vomiting stopped–and we can’t wait to go back!  Again!  Another trip to Disneyland!  Featuring: Less Vomiting!

 

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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 byrdsforacure.org.

 

 

Six Years Ago Today Nothing Happened. Really.

Today is June 25th, 2013–or as I like to think of it, the 6 year anniversary of the day that nothing happened.  *Nothing.*  It also happened to be the last day I endured a 49″ waist, the meal restrictions of a type 2 diabetic, and ten weeks of non-stop Kegels.

That’s right you guys.  On this day six years ago, I was enjoying my last day of a high-risk twin pregnancy.  Right before I enjoyed my last sleepless night of constant back ache, twenty pounds of front-loaded discomfort and a sprinkling of hypertension.

Also just before I enjoyed another weekly cervical exam the next morning.  Turns out that six years ago tomorrow marks the moment when a doc declared me a glorious eight centimeters dilated and we were cleared for Go.  I don’t even know what doctor told me that.  Couldn’t even tell you if the doctor was male or female.  All I know is that after twelve weeks of wondering if these kiddos were going to make it at all I would have done anything to expel them from my loins at this point.  Twelve weeks of bed rest can make you crazy, in case you didn’t know.  I was so careful and so rule-abiding for so long in terms of enduring bed rest restrictions, keeping to a maximum number of steps per day, adhering to hydration requirements, making good on twice daily Ensure consumption, being unable to drive myself anywhere, and abstaining from Twinkies after I was declared a gestational diabetic–and none of this even earned me a Girl Scout badge.  Are you kidding me?  And then when we made it to 34 weeks and I knew they would be fine either way, I instituted a methodical biweekly bribing strategyin an attempt to coerce my OB’s to deliver me earlier rather than later (they never gave in, those “do no harm” jerks!) and all I got was a few sad looking, pitiful expressions of “thank your lucky stars that you’re still baking these buns after everything you’ve put us through since April”?  These doctors have some empathy made of steel, turning away Mont Blanc writing instruments and contraband Cuban cigars.  Believe me, I tried everything to evacuate my fetuses (feti?) as soon as I knew (a mother knows) they were ready for this outside world.  But no, I begrudgingly gestated for two more weeks.

If you’re thinking what a peach of a patient I must be, you would be right.  Probably.  But this day isn’t about me.  This day is about my beloved Popocatepetl and Iztaccíhuatl (pet names for the twins)  (everyone gives their kids nicknames, right?).  (I am kidding–they are lucky if I even remember their initials–”hey you!”)

These twins of mine are heroes.  Not only did they survive an unlikely extra ten weeks like the champion embryos they were–fighting against these expelling loins of mine can only be accomplished by champions, turns out–but they were born without complications and have flourished into the delicately charming, hilarious, inspiring children who turn six years old tomorrow.  Congratulations, team.  We did this together.  And you’re welcome for me not barfing up all that Ensure because back then I almost did a whole bunch of times that I haven’t even talked about.  Hey, those extra few ounces of birth weight are pretty grateful for that fact even if you aren’t, you two.

I did throw up on Baby B while in post-op, though.  Have you ever been in post-op?  There is precious little you can control in post-op.  It’s not called Perfect Land.  It’s called Post Op.  Things happen.  He doesn’t remember it, so maybe we should stop talking about it.

Then:

2007 birth day

 

 

 

 

 

 

 

 

 

 

 

Now:

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Happy 6th, you crazy kids.

 

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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 byrdsforacure.org.

 

That’s How She Rolls

There’s something incredibly satisfying about popping bubble wrap, isn’t there?  As a kid it was hard to resist popping the sheet of bubble wrap until there was not a single bubble left to pop.

Love you, bubble wrap! xxoo

 

Lauren doesn’t doesn’t have the hand strength to pop bubble wrap with their fingers–but she has a better way.

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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 byrdsforacure.org.