Golf Tourney Help?

I've been a golfer longer than I've been a special needs mom.  Longer than I've been a mom, actually.  Longer than I've even been a wife.  I love golf.  After life handed me a couple of really good reasons to raise money for good causes, I've longed to link two of the things I spend most of my time on:  golfing and raising money to find a cure for my twins.  As it happens, cures for neuromuscular disease aren't prancing themselves to our doorstep--and I want to raise some money so that can happen.

Does anyone have experience holding a charity golf tournament?  I’m considering adding a golf tourney to our fundraising schedule next year, but am trying to get a handle on how much work it will be and who can help me.  

I have questions like what are the best ways to get hole sponsorships?  How does one balance the desire for cool prizes and swag bags while making the charity a priority and keeping overhead as low as possible?  Do morning tournaments that end with lunch tend to make more or less than afternoon tournaments that end with dinner?  What things can I ask a golf course to include in the contract that are not monetary in nature but will make my life easier as the organizer?  Does anyone have experience with activities on the side to raise money on the day-of, aside from selling mulligans and holding a raffle?  I don't have any celebrities lined up to play or to emcee--how big of a problem is this, or what can I do to appeal to someone?

I am lucky enough to already have resources to provide signage, create a logo and help with PR, but there’s so much left that I need help with.  I have so many questions but a massive desire to do this.  Talk to me, people!

These are old prototype logos from years ago when I dreamed up this overwhelming event.  I like them, but we'd have to change the colors to purple and orange!

Side note:   this event will benefit Families of SMA and I know that others in our SMA community have held fundraiser golf tourneys, but I’d love to hear from others, too.

Ryan House Run 2012

Okay so I have, like, a ton of friends who walk--or, more ridiculously, run.  What's up with those weirdos, eh?  We have cars, dudes.  No need to run.  Seriously, runners are weirdos.

So hey yeah, I am a weirdo.  I run.  I technically haven't run in a few weeks, but in general I can run and I'm conditioned to run (for example, if zombies were to chase us I could probably run faster than the slowest person around, which is really all that matters when it comes to zombie chases).  But now I have a better reason to run.  And so do you.  Or hey--you could even just WALK!  I don't judge.

The Ryan House Run at DC Ranch in north Scottsdale is three months away.  You can sign up for the 5K, the 10K, or the half-marathon. Or even the 1 mile family fun run.  Team Double Trouble needs more than two people on the team this time (thanks for last year, Jess!).  This event is so much fun, does so much good, raises so much money, and is so newbie-friendly that you ALL should register!  Five kilometers is just 3.2 miles.  Thirty minutes of your time and effort.  Easy peasy.

If you wish to challenge yourself with the 10k or half-marathon, that's up to you--but you can still use this link to register with Team Double Trouble.  I will run(ish) the 5k.  Team Double Trouble will meet at DC Ranch early, give fist bumps, then off to our starting places.  Following our events, we shall meet up again afterward, give more fist bumps, compliment each other on our Lululemons, agree that we haven't been to The Herb Box in forever and we should go back soon, compliment the weather, and in general have a great time.  Even if you can't commit to the race, you can show up to cheer me on, bribe me with a mochachino, peruse the raffle tables and gamble a few bucks to win a wine basket or sports paraphernalia 

I've already blogged about what a great cause the Ryan House is.  Sign up to do it with me this time.  Right now is the perfect time to start training for it--the Couch to 5K program was even designed for non-runners.  Your heart will thank you.  I'll thank you.  Simply put, I want to see your face on March 3rd, 2012.  C'mon, Phoenix!  I know you want to see me all hot and sweaty and gross before I've even had enough coffee to be pleasant to you.

Fine--for those of you who will won't get off of your derriere's long enough to run, but still wish to support the cause, donate to The Ryan House via Team Double Trouble here.  It's for the kids!  As usual!

"How do you even stand yourself?"

Kyle woke up screaming for me to turn him at 0'dark-thirty today.  It was completely dark outside, yet he greeted me with the silliest wide-eyed massive-grin face.  I was grumpy about having been woken up, but his expression lightened my mood.  As I turned him, I told him, "Dude, you are a crack-up.  How do you even stand yourself?"  He let go of the silly face and informed me, "Momma, I can't stand."

Kids can be so literal that it hurts.

Our 6th Annual Arizona Walk N Roll to Cure SMA is upon us.  This year marks our third appearance at this Walk N Roll.  Last year we couldn't all attend, as Lauren was in the hospital fighting pneumonia.  The rest of us crusaded on at this Walk without her, to help raise money to cure this terrible, terminal disease.  Six months later her twin brother also spent a couple weeks in the hospital with pneumonia, and that's when I realized that we can expect at least one hospitalization per kid per year.  And somehow we've gotten lucky--so many SMA families spend ten times that in the hospital every year.

What did you do with your kids this summer?  Take them to the beach?  Road trip to see grandparents?  Sleep in and enjoy the lack of rigid routine that the school year typically brings?  For us, we had no less than twenty six doctors appointments for the twins this summer.  We kept up with their neurologist, pulmonologist, gastroenterologist, orthopedic surgeon, general surgeons, and pediatrician during the summer.  We also spent many, many hours this summer with the twins' nutritionist, orthotics specialists, and with the therapists and genius engineers at their wheelchair clinic.  Not to mention the hours I spent on the phone trying to coordinate these appointments, arguing with our health insurance company, and then driving us downtown for these appointments.  My twins have dealt with more blood draws, IV insertions, and surgeries this summer than most people will their whole lives.  They are trained how to behave in their wheelchairs in public.  They rarely deviate from my wheelchair rules because they know they could hurt someone, or themselves, if they do.  The public seems tickled with four year olds in wheelchairs.  I think the public assumes that they will always be in wheelchairs.  Terrible assumption.  It doesn't have to be this way.  That's what enrages me--as a mother, and as a person with common sense.

I'm not sure I can adequately express how much we hate SMA.  I hate this disease with every fiber of my body--a body which is strong enough to allow me to stand, walk, sit up, and even turn over in my sleep.  My twins can't do any of these things.  They are completely dependent upon us to do these things for them--including waking up multiple times per night to turn them over or adjust their hips to relieve the pressure points that their small bodies place on them.  The strongest "muscle" they have is their brain, though--it's doubtful you'll ever meet someone as smart as a person with SMA.

There is no cure for SMA.  There is no treatment for SMA.  There is no drug regimen to help manage the symptoms for people with SMA.  But there could be.  Soon.  Research in the areas of gene therapy, stem cell therapy, and other traditional drug therapies are in the pipeline.  This is exciting.  SMA is one of the very few muscular dystrophies which are [thisclose] to a cure.  A cure!  Can you imagine?  I can.  But even if a cure is found, each year that passes takes a toll on their skeletons, muscles, and organs.  Lauren is to the point where no injection of an insta-cure is going to fix her scoliosis, for example.

As I type these words I can hear Kyle's scraggly breaths as he sleeps.  His body is trying so hard.  I need to ease his respiratory system with the bipap machine but I can't sell him on it.  He doesn't want to be constricted with a face mask which blows cool air into his mouth, and it's not easy persuading a preschooler to do something he doesn't want to do.  He told me today that he can't wait until he gets bigger so that he can play baseball.  I keep telling him that it's not his age, it's his muscles.  He can't throw a baseball because he can't really lift a baseball--not because he's a baby, because he's not.  "But Momma, I can play baseball when I get bigger, so I can stand up and throw, and then I will hit it like Justin Upton and make a home run!"  I never tell him he won't, because what do I know?  Stranger things have happened.  Science is extraordinary.  Kyle is so proud of his Dbacks that he wants to be one, but I am the one who has to tell him that he will never stand.  He will never play baseball.  Even if his Make-A-Wish is to eventually throw the first pitch, he can't throw he ball more than a foot.

And Lauren, his twin sister who also suffers from SMA, is an absolute riot.  She has an incredible memory, would put Kate Middleton to shame with her style and manners, has a smile that lights up the room, and makes you want to give her candy.  How I know that is that we hang out at all kinds of places and people she meets feel compelled to give her candy.  Mostly, I wish that people felt compelled to ask her mother if giving her candy was okay.  This girl, I am telling you--if charm were a currency, she'd be a bazillionaire.  I hate even putting her to bed sometimes, lest I lose a great conversationalist.

But I will outlive both of them.  I can't change that.  What I can do is raise money (and disease awareness!) to help find a cure so that no other parent has to endure this diagnosis.  So that no more children are born with such a death sentence.  As a member of the board of the Arizona Families of Spinal Muscular Atrophy, I help coordinate this Walk N Roll and I need your support.  Join our Team Double Trouble and walk and raise money with us (email me to join the team), or simply donate to Team Double Trouble.  If your company could use our 300+ walkers knowing that you support our cause, contact me for sponsorship details (starting at just $500) and so that I can get your .png file.  I am also still looking for local firms to donate nifty stuff for our raffle--gift cards, merchandise, hotel stays, golf rounds, seats to theater or sporting events, services of any type.

This week also marks the three year anniversary of the twins' diagnosis.  October 26, 2008 is a date I won't forget because it's the date I finally allowed myself to Google "spinal muscular atrophy" after weeks of wondering.  The doctor warned me not to until the twins' blood test results came back.  Should you wonder why I don't want anyone else to have to Google it, just Google it.  And then join us at our Walk N Roll next month.  Let's work together to ensure that we don't need to hold these Walk N Rolls another year.

Successful Saturday!

The Phoenix MDA Muscle Walk this year was so great. It started earlier in the day, so our on-site meal was breakfast (thanks, Fresh N Easy!) instead of lunch (lunch didn't go so well last year). The twins did me proud, navigating their chairs in all the crowds. It makes sense that for three year olds, navigating a bright and sunny outdoor crowd of hundreds of people might be taxing on the brain. And it really is.

I am fully convinced that we have conditioned them to be so aware of their surroundings and so conscientious of the safety of pedestrians that when they get strapped into their wheelchairs in large crowds, it overloads their senses after an hour or two. Do you remember how you felt when learning to drive a car? There's the unfamiliarity of a car you've never before driven, those vain feelings of hoping that you "fit in" and that the others on the road don't realize that you only have your learner's permit, and that serious-as-a-heart-attack awareness that you are directly responsible for the safety of others simply by not straying from your lane.

Yeah, you were fifteen years old back then. These kids are three. Years old. And one single hand-talking, backwards-walking woman stepped in between Lauren's wheels and stumbled into her. Lauren melted down because of it. See, ordinarily I read her the riot act when she runs into stationary objects, but this woman was a complete dolt (sorry, lady--I'm so glad you were there to support the cause, but really), and so Lauren reacted appropriately--she ran over a woman's foot, and so melted down and sobbed uncontrollably for ten minutes. From this experience I learned that maybe I've been a little hard on them for their driving mistakes. Honestly, it's just that I know they have such mad driving skills that I want everyone to be a witness to them--but no amount of discipline or self-satisfaction is worth how completely horrible I felt when Lauren took that accident so personally.

I can mostly control my children in their ridiculously expensive wheelchairs. I cannot control the rest of you. I am nearly as inexperienced with dealing with the oblivious public as my preschoolers are. I'm working on how to handle this stuff. All I know at this point is that next year's walk will go even better than this year's. Team Double Trouble raised lots of good money for the MDA, and we had a blast at the Walk. That's really all I care about.

Photographic evidence of the morning's events follow. Phoenix locals, please note the last few photos with local news station celebrities. I'd hate for anyone to think that we're not a big deal and that people know us.

Muscle Walk 2011

The annual Muscular Dystrophy Association Muscle Walk is being held tomorrow in Phoenix. This is the day when I wake up the four other members of my family at 0-dark'thirty to head down to Tempe by 7:15am to join a couple thousand other "walkers" (technically speaking, many of them are "rollers") to raise money for the MDA.

Did you know that the MDA offers free clinics staffed with some of the best neurologists, therapists, and wheelchair/medical device experts ever assembled so that those with muscular dystrophy can consult with experts on their care? No muscular dystrophy case is the same, so there is enormous value in having access to these centers of excellence where one can be confident in the advice given for our varieties of medical needs.

The MDA also funds critical research towards treatments and cures for the 40+ types of muscular dystrophy. They provide opportunities to places like Harvard, Yale, Emory, Johns Hopkins, UCLA, Temple, St. Jude's, UCSD, University of Michigan, Laval University (Canada), and University of Rome (Italy) to CURE. THIS. DISEASE.

The MDA also provides my family with a local, tangible, helpful support system consisting of compassionate MDA staffers and other MDA families where we have found community, advice, and moral support crucial to our financial (and mental!) stability. If my three year old twins had to be diagnosed with a terminal disease, we couldn't be luckier to find ourselves with such an amazing extended family like this.

I don't expect to raise a ton of dough for my MDA. But do me a favor and click this link and read our story. If you're curious as to how muscular dystrophy affects my children and my family, click here and here and here. Donate if you feel compelled, but if you can't right now, that's okay--I have two other fundraisers later this year in which you might choose to participate. :)

Lastly, our family was featured on our local Fox news broadcast earlier this week. The focus of the news story is on the one year anniversary of "Obamacare" and how it has positively affected local families. I tend to keep my political opinions to myself, but suffice it to say that the segment made the kids seem almost as charming as they are in real life. :)

Born to Run. phhhtttt NOT. But kind of.

I hate exercise--just ask my doctor. Since I was 16 years old, he's begged me to do any sort of cardio. I sit there on his paper liner and squint my eyes and jut my chin out in thoughtful, optimistic consternation as he bullet-points all the reasons why people would bother exercising and agreeably nod my head. And I still don't get it. Why run when you can walk? Why walk when you can drive? Am I right?

Usually I hate moving my body at all for mostly any reason, unless there's hooch involved in the before or after. And I'm not competitive--oh God no. But I started running last year. You could say I've channeled my inner Forrest Gump, maybe. But the best part is that I've found an amazing cause to run for--who could say no to respite, palliative, and end-of-life care for little kids and their families? London has it. Vancouver has it. How many cities in the US have this? Two. And one of those places is here in Phoenix. It's called the Ryan House, named after our personal friend Ryan. His family built this amazing facility in downtown Phoenix (adjacent to St. Joe's) from the ground up. Families of critically and terminally ill children from anywhere can come to Phoenix and reserve a stay and enjoy a well appointed room with world class medical and respite care for their child--for free.

If you've been blessed with such an extraordinary child, you know how time consuming and stressful it is to be at the beck and call of pulse oximeters, feeding pumps, body turning schedules, suctioning needs and more. If any of you families with medically fragile children visit Phoenix, you can contact the Ryan House in advance to take care of paperwork, and then enjoy your time here as a family, worry free. The nurses at Ryan House are the best of the best--and most of the doctors are the doctors we've chosen for our own kids, before the Ryan House existed. Everything about the Ryan House is world class, believe me--even the playground. What--you don't think a playground can be world class? Go visit. You'll see.

And this is why I am getting off my lazy, self-centered ass to run on 5 March 2011. That's right--I'm competing. I'm running a 5K to raise money for Ryan House so that more families can take advantage of this amazing home and amazing nursing staff. If you happen to be a runner, there's also a 10K and a half-marathon--it all takes place in Scottsdale in March 2011. If you're not a runner, then give me your money. I challenge anyone who reads this to donate $4 to my cause. Sure--$5 would be nice, but that somehow sounds like a lot more than $4. If the 64 subscribers to my blog each pledged $4, that would equal....like, a whole lot more money than this liberal arts graduate can count.

My family qualifies to stay at the Ryan House because two of my three children have a terminal disease. So, I run for my kids, too. I also run for myself, to prove that I can do something amazing. The last amazing thing I did was to mail merge 264 address labels on an Excel spreadsheet. Before that? Well, I went to Costco with three kids, by myself, on a Sunday--omg stop clapping, it's embarrassing. But to be honest, I haven't done anything else so amazing since carrying twin babies to 36 weeks gestation. After being on bedrest for 11 weeks. Uphill. In the snow. Both ways. (the clapping, though! knock it off!)

Runners--learn more and join Team Double Trouble on March 5.

Readers--send your $4 this way. And mention Team Double Trouble in the notes.

"Meh", you say. I hear you, I hear you. You need something compelling for your $4? I present this. But if you shed a single tear, you owe my team $25. (not that I could put a dollar amount on a baby's life. I just mean that certain stories compel people, and it's all for the Ryan House anyway.) This family--this mother--so encapsulates what it's like to lose a child--and a compassionate environment such as The Ryan House can be a key emotional component to coping with such a tragedy. Donate for her. Her. I've never met Faith. But I run for her. One day I hope to meet her. She's amazing.

And then go kiss your kids. Because nothing else matters. I don't care whether you throw your bills at me or not--just go kiss your kids. If you don't have kids, kiss your dog. And if you don't have kids or a dog, well, kiss a grapefruit (I don't know, what do you kiss in this situation? My grits? My ass?)

Word.

This is Why I Walked.

One upon a time, a beautiful newborn boy was diagnosed with a terminal disease. His parents did everything in their power to advocate and care for him, so despite the horrific rate or mortality, he survived longer than many with his disease. When he was two years old he was granted his Make A Wish trip. For nearly a week, he and his family—including his newborn baby sister—enjoyed Disneyland in that magical way to which any family with young children can relate. Last week, Jonas and his family returned from their amazing Disneyland vacation. A couple days later, Jonas caught a cold. It quickly settled into his lungs and he became critically ill. On Thursday, November 18, 2010, Jonas Coleman passed away. A week after his Make A Wish had been granted and a week before his third birthday.
The day after Jonas died, my own three year old baby girl found herself in the hospital. She’d had a cough for days before that, but after lots of albuterol and Cough Assist she seemed to be on the upswing. In the end her cries of an earache convinced me that something was really wrong, so I casually drove her to Urgent Care where she began vomiting, aspirated, and her O2 sats plummeted while her heart rate and respiratory rate skyrocketed. We were only in the building for three minutes when the staff called an ambulance to take us to the hospital. Lauren improved quickly the next day—despite fighting what we know now was pneumonia—and we don’t know why she got over it so fast. But her timing was uncanny, given Jonas’ passing just the night before.
These kids are so fragile when it comes to their respiratory systems. We do everything we can to keep germs away from them while allowing them to live full lives, but we can’t shield them away from all of the bad stuff all the time. It’s a fine line, and as a parent it’s an exhausting one to manage.

This is why we walked yesterday. Lauren was sick in the hospital for the 5^th Annual Walk N Roll To Cure Spinal Muscular Atrophy. Jonas had SMA. Lauren and her twin brother Kyle have SMA. And Jonas’ newborn sister, Maggie, has SMA. I once heard some expert say that SMA is the most common rare disease they’ve ever seen, and my own experience supports this. The twins were diagnosed with SMA two years ago. I can no longer count or remember the names of the babies who have died of SMA since then. For a while I could, but the volume of souls affected by this terrible disease is so high that even I can’t keep up. All of these kids, individually, are why I walked yesterday. Our Team Double Trouble raised over $2,000 for the cause, and my personal friends contributed raffle prizes which collectively raised another $500+. I used to think that SMA only affected us—our family, our kids, our pocketbook. It felt so isolating back then. Isolation in such a severe situation was overwhelming. But it feels good to know that we’re raising awareness in a big way—and raising money for the cause--and so MUCH money, and in such a rough economy. Thank you from the bottom of my heart, everyone! xo

Walk N Roll 2010, Baby!

This Sunday will be our second year raising money for the Families of SMA Arizona Walk N Roll. FSMA serves as a critical support system for families facing the devastating diagnosis of Spinal Muscular Atrophy--they fund critical research for treatment and cure for this type of muscular dystrophy, which affects newborn babies the hardest. Half of babies born with this incurable muscular disorder die before age 2.

When strangers strike up a conversation with me about the kids and their disease comes up, they usually ask me if they can walk--they are in wheelchairs, so while I think the answer would be obvious I still find the patience to explain that not only can they not walk, but they don't have the muscle strength to sit up, roll over, lift their arms to comb their hair, or cough. What they lack in physical strength they make up for in charm and intelligence, but the fact remains that they will live their lives dependent on wheelchairs and caregivers and that just sucks.

Families of SMA was a key resource for us when the twins were first diagnosed with this terminal disease at age 16 months. FSMA sends "newly diagnosed" care packages to new families, put us in touch with other local families on whom we can rely for support, host a message board forum so that families can organize ourselves network and rely on our worldwide counterparts for support, directly fund cure-based and treatment-focused research, and compile summaries of laboratory and clinical research in layman's terms for the families.

FSMA is the very definition of "a good cause" and if you have a few bucks to throw to it, I'll take them. If you do or don't, the fact that you're just aware of the disease that defines us now is a win, as far as I'm concerned. Thanks for all your support over the last two years--I feel like a broken record saying that all the time, but it's true. Managing this stressful life in a vacuum, with nobody to listen to me or hug me or bring me bottles of wine, would blow chunks.

Two Years.

Two years ago today was when the twins were diagnosed with Spinal Muscular Atrophy. Two years since we stared in disbelief at our happy one year olds while we listened to the neurologist deliver anyone's worst nightmare to us over the phone. It was entirely life changing.

SMA is a type of muscular dystrophy which affects voluntary muscles. SMA patients are weak, because they're missing a specific muscle protein. They are highly intelligent but are frequently described as "floppy" because their limbs have so little muscle tone that they flop around unless we're very careful in handling them. They cannot sit, roll, crawl, or walk. Their respiratory health is of utmost concern because they cannot produce an effective cough. Think about it--a good cough requires the cooperation of your diaphragm and other abdominal muscles. SMA patients can't cough like you or I can--in fact, many SMA babies can't swallow, or even breathe on their own. The severity of muscle weakness is broad, but the thing that all SMA patients have in common is the deletion of that SMN protein--so regardless of how severely one is affected, the same cure will cure them all.

Despite the dozens (hundreds) of families that I've come to meet and chat with who are affected by SMA, the disease is still considered rare. Because of this there are limited research dollars available to hunt down a cure or treatment. There are some extremely intriguing advancements in the fields of gene therapy and stem cell treatment, and I am on the edge of my seat every morning when I turn my computer on in hopes that a breakthrough for treating SMA will pop up on my RSS feed. So far, no luck. SMA is terminal. There is no treatment. 50% of SMA patients pass away before they turn two years old. My twins have so far beaten the odds, and I am very much aware of this every single day.

Families of SMA is our central resource for support when it comes to handling daily life with this diagnosis. FSMA not only keeps the families all networked together and provide moral support, but they fund critical research to find a cure or treatment for SMA. This year, on November 21st, the Arizona chapter of Families of SMA will host a Walk 'N Roll to Cure SMA in Scottsdale. It would mean so much to us if you could be there. We should have our wheelchair van by then, so both kiddos can show off their pink and blue wheelchairs, respectively.

If you can't attend our Walk N Roll, then consider throwing a few bucks our way via this link. If you represent a business, consider donating your product or a gift certificate for our raffle that day. Register to walk with Team Double Trouble--or submit your donation--by clicking here.

I am confident that a cure (or very effective treatment) for SMA will be discovered in my lifetime. I wake up everyday hoping that a cure for SMA will be discovered in my children's lifetimes. And the best part is that researchers think that a cure for SMA could unlock treatments or cures for other diseases, too--ALS, Duchenne's Muscular Dystrophy, and Parkinson's, specifically. The possibilities are exciting, but we need money. If you can donate money, I will take it. If you have some spare prayers, I will take those, too. Your moral support over the last two years has been critical to my sanity, and I thank you for it very much. As I continue fumbling my way through motherhood--and parenting twin toddlers with a physical disability--your continued support and shoulders to cry on and acting as sounding boards deserve their own awards.

There was a time when I cried over this every day. I don't hardly cry about it anymore--at least, not on a daily basis. Grief is exhausting, especially when my gorgeous children are still alive and happy and bring such joy to my life. I'll save the tears for later when I really need them. For now, though, life is good.

Much has changed in two years.

Going Bald to Save Babies!

Meet Barb Zahn. Her baby Lucy has Spinal Muscular Atrophy type 1. If Barb can raise $10,000 for SMA research and awareness programs by Lucy's first birthday on July 9, 2010, she will shave her head! (You should see Barb's hair today--it's beautiful.)

Watch her CNN iReport video plea by clicking this link.

Barb is $1100 towards her goal--check this out and consider contributing, or even just joining the Facebook cause and inviting your friends to do the same.

Stride N Ride 2010

Alert! Only one more day to donate! We're $600+ away from our fundraising goal--would you like to support Team Double Trouble in the MDA Stride N Ride this Saturday?

We love us some MDA. Spinal Muscular Atrophy is one of the 40+ muscular dystrophies, and one of the diseases closest to a cure. The MDA provides our family with moral and financial support and so we do whatever we can to support them when we can.

I'll take your money, but I'd love your presence at Tempe Town Lake on Saturday to walk with us. Click on Team Double Trouble to register to walk (it's free) or to donate (which is not free) (obviously).

Checking In

There are a variety of SMA kiddos sick in the hospital these days, but locally, my primary concern is sweet Alexa. She's just a few months younger than the twins, and dx'd with SMA type 1. She is such a sweetie--and her whole family is Good People--and I want her to get well and get home fast. I don't like the idea of her in the PICU and I adore her parents, Mike & Jaci, to death. It's so hard on the parents when our children are hospitalized. But Alexa has tested positive for HMV, MRSA, and staph, and was intubated Tuesday.

New to my blog? Don't know what Spinal Muscular Atrophy is? Here's my take on it. And Jessica Gustafson's take on it. And ExtraordinaryMommy's take on it. And, from a clinical perspective, here's FSMA's take on it. SMA is one of the 43 recognized muscular dystrophies. If you donate to the Jerry Lewis telethon or buy an MDA shamrock at your grocery store, then you support our cause, too. In short, SMA is a genetic, terminal degenerative muscular disease which affects children. I could go on to explain further, but there's not much else to say. It is the suckiest suck to have ever sucked--so yeah, okay, there's that.

So, Pepsi is hosting a contest called the Pepsi Refresh Project. There are different tiers of awards, but--lookie here!--the highest award tier includes an SMA charitable organization! So, yet again, I beg you to register at refresheverything.com and vote for Stop SMA. Their winnings will be forwarded to SMA research, and you can vote daily for this organization all throughout March. I am voting everyday, so if it will help, I can email you, or tweet or Facebook you to remind you to do the same everyday! Just let me know, and I can add you to my list.

And I can't let this slip past everyone--Victoria Strong has been named one of the Real Strong Women for March by sorority Alphi Chi Omega. Also, Victoria's birthday was Monday--feliz cumpleanos a ti, Victoria! xoxo

p.s. Do you Twitter? If so, find me there, would you? I follow 600+ people on Twitter, and at least half of them are useless. I'd love to get in touch with useful folks. ;)

What a Walk!

Today was our first ever Walk N Roll to Cure SMA. What a blast! The weather couldn't have been better. There were SO many people, including local SMA people we hadn't had the chance to meet yet. Plus, my parents and our good friends David and Daria came to show their support, so we were in great company all day. We also met some new SMA families who we look forward to getting to know over the next year.


Team Double Trouble raised an astounding $5,440 for the Walk this year--$400 more than our so-high-we'll-never-achieve-it goal. Amazing! A huge thank you to all our generous donors out there. We appreciate every dollar, and the money goes to a great cause.



Jenna and our friend Madi, who is 6 years old with SMA type 2.

What a difference a year makes

Today, we're preparing to pack up our (former) dream house and getting ready to move to a need-to-have-a-single-level-in-order-to-accomodate-pediatric-wheelchairs house.

But one year ago today, we found out our sweet twins have Spinal Muscular Atrophy, a genetic and fatal disease.

What a surprising turn of events.

Getting the diagnosis of SMA is a death sentence for about half of the kids who are diagnosed. These are real, live, cooing babies, just like your baby, and your baby, and your baby. My twins are just like any other two year old in most ways--they love to spot airplanes in the sky. They adore The Wiggles and Baby Einstein. They prefer to play with my cell phone and a big box of Kleenex (to rip the tissues out of, of course), but will settle for wooden puzzles and blocks, and they have tea parties (while strapped into chairs on the floor so that they don't fall out). They really love to swing on the swing set outside. They adore their big sister and their Aunt Kimmie and their grandparents. They started out completely normal, and we parents had no clue anything was wrong. But we now that we're incredibly lucky that they are even as strong as they are.

Statistics on SMA are that 50% of SMA babies die before age 2. How both of my twins both fell on this side of that 50% is beyond me. I struggle daily with the question about why my kids are alive and kicking--well, not literally kicking, but they can wiggle their feet--while other kids with the same disease don't make it a year or even a week here on Earth. I'm no different than their parents--just as clueless, just as hopeful, just as surprised to learn that my kid won't grow up to kick a ball or annoy me by leaving the refrigerator door open one day. On a daily basis, I mourn the loss of all the babies I know of who have died since my babies were diagnosed--Logan and Zane and Kayden and about twenty others, at least--and I grieve for their parents. And for the thousands of babies who died of SMA before I knew what SMA was. Each of those children was a gift to the world, and SMA stole them away from all of us. SMA overwhelms me most days, you could say. I never even knew the disease existed until the twins were diagnosed. Now, I wake up several times in the night to turn over my children's bodies because they can't do it on their own, and they could get sores from laying for so long in one position. It's sure not how I pictured raising twins.

We had no history of SMA in our family trees before the twins were diagnosed. But 1 in 30 people are carriers for the gene--regardless of race, ethnicity, or continent. You could be us. And while SMA is a tragic diagnosis, one thing is for sure--when it comes to SMA parents, never have I met such wonderful, down to earth, funny, compassionate, sweet, smart people. I mourn my childrens' diagnosis, but with their diagnosis came the friendships we've made with such wonderful people. I know that sounds cheesy, but it's true. We never would have found these people without the commonality that this dirty, rotten scoundrel SMA has provided.

I've been thinking about it all. Life didn't really play out the way we had planned. But I still say it's important to make plans for your future--Good things don't usually happen to people by accident. We have to be responsible and work hard and save and make good decisions to make that happen. But in this case, despite all our responsibility and working and saving and good decision-making, life threw us something we never expected and sure didn't want. Maybe we'll embrace it as an opportunity, or maybe we'll never accept it. It has challenged our expectations. It has frustrated us, and challenged us to become better people. I'm allowing myself to wallow and indulge in lots of self pity occasionally. I think about presenting my arguments to God and beg Him for an explanation. But sometimes, I just sit back and try to realize that regardless of our thought and planning, or lack thereof, sometimes things happen and it's just not fair and it's not our fault. And then it's time to gather all our energy to make a positive difference and help kick SMA's ass.

I am convinced that SMA is curable. Plenty of experts agree. The NIH recently listed SMA at the top of it's list of priority diseases to receive funding because they feel that the disease is so close to finding a cure. And a cure for SMA could lead to cures for various other neuromuscular diseases, as well.

Families of SMA raises money for research grants to places like UC Irvine, Duke, Johns Hopkins, and Ohio State to find a treatment or a cure for SMA. Help us in our efforts to support FSMA by throwing a few bucks to Team Double Trouble before 11/21/2009.

As an aside...if you haven't met the twins, you really should. Actually, you should meet all three children. They are all completely charming and unique and adorable. I try to represent them here as fully as possible using photos and You Tube, but it's not the same to hear them speak and laugh in person. I hope to meet many of you SMA folk at the next FSMA conference next June in nothern California. But to anyone else, if you haven't met my children then you are missing out. They are angels on Earth, I swear it.

God bless us, everyone! ;)

Estate Planning, Testicle Surgery, and Fundraising--Oh, My!

Chris and I finally finished our business with an estate planner. I never knew that planning for death was so complicated--and yes, that statement sounds ridiculous to me now that we've been through the process. Oh, how naive we once were. Let's just say that if YOU ever plan on leaving me in anything in your will, leave it to the Byrd Family Trust, and if you ever plan on leaving anything to my children, leave it to the Special Needs Trust for Kyle & Lauren (or Jenna, by herself). Because the income and tax ramifications if you don't use that terminology are brutal. We paid thousands of dollars to our beloved estate planning attorney, so please please don't leave any valuable figurines or expensive season tickets to us directly. I implore you. Actually, what we've learned is that the babies aren't allowed to have any income, in order to continue getting their medical services paid for by the government. So their Special Needs Trust was created so that we have someplace to put random gifts--like $20 checks for their birthday, etc--in an account where they can still benefit from gifts but won't be penalized for them. It's all very tricky, but totally legal, don't worry. Our estate planner is located around central Phoenix I'd refer him to any friend.


If you recall from a previous post, Kyle has some undescended testicles which need tending to. As luck would have it, the surgeon does not have any spot open on his calendar until the end of November, so to avoid flu and RSV season, we've planned the procedure for April 2010. It's going to be scary, but I promise to be a brave little soldier through it all.


Lastly, we've registered our family for the Arizona Walk-N-Roll to Cure SMA. All proceeds benefit the Families of SMA (FSMA), who has given millions of dollars in research grants. If you can spare a few bucks, drop them here: http://www.fsma.org/LWC/doubletrouble It's all tax deductible, and you can count on me pimping this cause until the Walk on 11/22. LET'S CURE SMA ALREADY, PEOPLE! Word.


What we've been doing these days:

Money and Telethons

Quick! I'm in the running for raising the most money for the Phoenix chapter of the MDA! Help me regain the lead I had in week 1 (five weeks ago) by giving me your money!
https://www.joinmda.org/phoenixbeastar09/cass1218

Whew. What in the heck was that? It was like some stranger came though my blog post in a drive-by, begging for money. That is some crazy talk. Pardon? Huh. You mean that because my babies get money from the MDA that it makes sense for me to whore out my fundraising site on my blog? I'm not saying I disagree, I'm just saying maybe someone could run it by me first. I mean, 3 whole people read this blog each week, and I really need to increase the perception of my babies' cuteness a little more before I start pimping them out for the MDA. Wait, who am I kidding? They're cute enough. You know it. Now give me your money. Via that link above.

Speaking of money and the MDA, guess who will be on Phoenix Channel 3 tomorrow (Monday) morning, during the MDA telethon? Jerry Lewis? Good guess. Charro? Yeah, probably. Firefighters? You betcha. Also? Me. For real. I am so not joshing you here. Chris and me and the kids will totally be the best 60 seconds that the MDA Telethon has ever seen! Set your Tivo--channel 3, sometime between 9:40-10am. I'm figuring that when the Channel 3 people get past the cuteness of my adorable children, and how handsome and well-spoken and intelligent--not to mention spikey-haired--my husband is, they're totally going to realize my heretofore unrecognized talent for being sly and clever and dryly sarcastic on the air, all while sounding totally professional, and also for being very interested in critical lifestyle choices such as golfing, wining, and parenting. And also, for how great I can make a $16 dress from Target look. I could be their on-air (and highly paid) bargain shopper correspondent. Right? Or anytime they need someone funny and interesting who didn't actually graduate from U of A (because everyone who is funny and interesting usually has graduated from UA, but not me, I only went there for two amazing years. Two years from which I doubt Tucson has recovered.).

Just please, nobody tell Channel 3 that I really just watch Channel 12. I'm sorry, but way back in the 90's, there was a huge local television switcheroo where all the channels switched affiliates, except for Channel 12/NBC. As it turned out, I could never keep track which channel was which network, and so I just gave up. I watch Channel 12, just to keep things simple.

Also, big news at the Byrd house--we made an offer on a new house. It's a major short sale, so I don't want to tell you too much about it because I don't want you to become too attached to it. But really, it's perfect for us. It was literally made for people in wheelchairs. It has a roll-in shower in one bathroom. No steps. Wide hallways. Hardwood floors (wheelchairs tear up carpet, eventually). Ah, I've said too much. I bet you're getting attached. Stop it! The bank will probably never approve this sale, because they're going to lose way too much money in the end. But we tried. And we keep looking for more single-level houses in the meantime, until the bank informs us that we're crazy for thinking they'd even consider handing this house to us practically for free. I'll keep you posted.

Alrighty roo, I need my beauty sleep. This undereye area doesn't stay wrinkle free from staying up all night blogging, you know. So! Set your Tivos! Watch your Twitter tomorrow morning! 'Cause you know I'll be all a-twitter with the goings on before we go on camera. TTFN.