Preserving the View, Preventing the Sunset...

ORIGINALLY POSTED SEPTEMBER, 2014

This picture was taken this past summer when we took the kids to the Outer Banks of North Carolina for the first time.  We tried kayaking on the calm waters of the sound… calm it was… and quite beautiful. This is my younger son, Mitchell, kayaking for the first time.

Ever since we found out our boys have a rare disease causing them to lose the minimal vision they were born with, we have taken them to as many places as we can so that they can get up close to actually see some things as well as experience all that can be “felt” in a different place.  We can describe kayaks and bodies of water, etc, but getting up close and actually experiencing these types of things is what they need, and it’s what they love.  They compare the different beaches of different coasts based on the feel of the sand, the calm or fierce ocean, the smell of the air.  They feel the different climate changes on the top of a mountain versus the base, and they were in awe of the difference in snow covered ski trails of Colorado vs the usual man made snow ones of the Poconos near our Pennsylvania home.  They love to get to know a new city by meeting the people, walking the streets and taking in all it has to offer.  They especially enjoy cathing their beloved Phillies on the road in different cities and getting a sense of the crowd and the feel of the stadium.  Each city and vacation destination seems to have a “personality” and they love exploring it all.

Since they each still have a little bit of vision, I absolutely never take for granted when my guys tell me they can actually see something that I thought they couldn’t.  When Michael tells me he can see that a city skyscraper towers over us on the street, I  pause and take it in and let him tell me about it.   When Mitchell tells me he can see the white cap of the wave crashing against the dark wet sand, we stand there and take it in together.   We all laughed right out loud when we drove into the mountains of Colorado late the first night of our visit and the moon was so big and so bright they both shouted out “Oh my God we can totally see that!”

I used to stop and take these things in because it made me feel a little bit of happy to know they could actually see something that the rest of us can… like it was one more thing they were not missing out on.  Nowadays though, we take it all in just a bit longer so they  are sure to get every detail, and create a mental picture… a picture they’ll need to reference later because the day is coming that they won’t see these things anymore.

It is an interesting thing when your child has a disease that takes their precious vision little by little.  In one regard, we are blessed that it is subtle… they don’t sit each day and reflect on what they can’t see at the end of the day that they could at the beginning.  It is a more gradual thing that they don’t necessarily notice right away.   But that kind of blessing has a bit of a sucker punch to it: it hit my gut like a ton of bricks the day we realized Michael couldn’t see the trees on the lawn anymore.  And it was heart torture the day a baseball was at Mitchell’s feet and he spun around and around searching for it.

I choose to be grateful that  they remember what things look like… not because it makes their lives fuller or better per se, but it does help tremendously in their relating to what people are talking about.  And to be perfectly honest, some things are so beautiful it is hard to put into words… like a sunset.

I am so grateful my Mitchell was able to point out the setting sun in this picture.  I am happy that both of my boys can see it, for now. And I pray every day that the work we are doing to preserve their vision and ultimately restore what is lost yields results soon.   My faith in our mission grows stronger every day, with every scientific breakthrough,  that we are going to get there… and we will indeed prevent the sun from going down on their view.  

I Am the Baseball Mom I Never Thought I'd Be...

NOTE: reposting from April 2014)

I am a baseball mom.  I was at a bunch of stores this week getting the right cleats and a new glove for the start of the new season.  I went through the drawers and bins to be sure all the baseball pants are ready and all the “cold gear” and “heat gear” are set.  I have my blankets and bleacher cushion and super-mega pixel/zoom/zillions-of-frames-per-second camera ready to go

My baseball son is 10, and this is his first year in the “big league”: they can finally steal home and there are playoffs, which means…. cue the Rocky music… there is a Championship trophy at stake!

Yep, I am a baseball mom…but there was a time when I never thought I’d be one… and for my older son, my baseball mom days are over.  So I am gonna ride this baseball wave like the proud, excited, happier than ever cheering mom that I am… just as soon as I get over my start of the new season nerves.

You see, my baseball son is blind, not completely “in the dark” blind, but so blind that he can’t see how many fingers you are holding up when you stand just a couple feet away from him.  And like his older blind brother years ago, he is on a “regular” baseball team in the league where all his buddies from his “regular”” school play.  Yes, there are blind sports programs and my sons participate in them.  But my guys also want to be able to take the same field as their buddies, and trash talk at school about teams that “cheat” and umps that “stink” and dugouts that are “cool”.  It’s a kid thing… not a sighted kid thing, just a kid thing.. and my guys want in.

Although he is in a league where the kids outgrew a batting tee a long time ago, my son has to hit off the tee because he can’t see a pitch coming to him.  He runs the bases utilizing a coach’s voice calling him.  And he plays the outfield with another teammate: the teammate fields the ball, hands it to my son, and the player awaiting the throw gives him a sound cue for a throwing target.

After weeks of snow and rain cancelling all baseball warm up activities, we finally had the first scrimmage game  and I was likely the most nervous person in town.  I was nervous about the kids accepting a blind teammate.  I was nervous about the parents accepting a blind player.  I was nervous the coaches would give my son a “sympathy” try here and there but not fully include him.

I sat shyly on the bleachers chatting a bit with parents and awaited the question I dread, “Which player is yours?” I tried saying “Mine’s the short one”, but this year there is actually a player shorter than my son.  I tried to say “Mine’s the one with the big mouth”, but there are lots of big mouths on a team of 10 to 12 year old boys.  So I figured I may as well get it over with: “Mine’s the blind guy.”  Maybe it’s because my family has been in this community so long, or maybe the coaches talked to the other parents about my son, I am not sure the reason, but parents on this team didn’t give a raised eyebrow, they didn’t have a look of “OMG”… they simply smiled with a “that’s cool” kind of look and then let me know which son was theirs.  Wow, my nerves were calming a bit.

No sooner did I calm down, the game started and first to walk out of the dugout and up to bat… my son.  The tee was set.  The fielders took their “ready position.”  My son gently ran his hand over the ball on the tee and lined himself up to swing at it.  My heart was pounding and I could barely breathe.  You see, I know everyone wants their kid to get a hit.  I know everyone wants the team to win.  I couldn’t have cared less about most of it at that moment: for me, if my son misses, there is the fear that folks are thinking “Oh bless his heart the poor blind kid can’t see the ball”  And if he misses there is the fear that the teammates are thinking “Oh great, we have a blind kid messing up our lineup.”  I feel like the “changing what it means to be blind” mantra of our family is at stake.

Up at the plate, my son pulled the bat back and with his mighty swing he hit the ball… and he hit it hard. It was a hard grounder to the shortstop.  My son learned years ago that a ball can only go so far when hit off a tee… so he learned to run really fast to beat the throw to first.  And this time, he ran faster than ever… and he beat the throw to first!

The teammates in the dugout went crazy, as they always do for a guy that gets a hit… and hearing them cheering “Way to go Mitchell!” made my heart skip a beat.  Mitchell’s proud, excited smile is all I can think about.  He did it.  He helped his team and they are proud of him… and he is proud of himself.

Mitchell went on to hit a pop fly his second at bat and a single into center field on his final at bat.  He played all positions in the outfield and sat the bench in the rotation, just like every other player.  The other players guided him when he needed it  and laughed at his dumb jokes, just like every other player.

At the end of the game, the other parents did not say “Oh good job for the blind guy.”  They did not say “Good hits off the tee.”  They all said “Wow….  He can run really fast!” Imagine that… I was so fixated on making sure my son could keep up with hitting and fielding like everyone else, I forgot that he has an incredible talent that makes him stand out as a player, not a blind or sighted player, just a player.

PS – My older son, Michael, used to play but due to his blindness it isn’t safe for him to be on the “regular” field anymore.  Although our family is working to find a cure for this blindness, it likely won’t be ready in the three years my 10 year old, Mitchell, has to play in this competitive yet inclusive league.  So if you see me cheering a bit loudly or notice tears of joy spilling down my face, know that I am savoring every single second of being a baseball mom   And I hope every baseball mom cherishes the fact that their child can play, whether they are a superstar or not   

Meet my son Mitchell and our family at our fundraising site for the Curing Retinal Blindness Foundation  www.bikethebasin.org

My journey out of darkness… summed up in 11 hashtags.

My teenager tells me I use too many hashtags in my social media posts. He’s right.  I totally #OverHashtag.  I love ‘em… because everyone that knows me knows I have issues being brief… and hashtags help me sum up my thoughts, sort of.  Feel free to read only the hashtags to figure out the milestone moments in my journey thus far… or go for the gusto and read the whole thing for a bit more detail.  Regardless, I hope this snippet of my personal journey helps if you are trying to move out of your darkness… and into greatness. 

#EyeBelieveInMiracles  I believe in them… miracles, that is.  How else can I explain that I have thrived despite the challenges in my path, that I have surrendered my control and my need for my plan… and my ultimate shift from pessimistic victim to optimistic thriver?  I used to think miracles came in “Hollywood” style… bright lights… beautiful music… attention grabbing scenarios.  Interestingly enough, my miracles are quiet, small: a shift in perspective, a friend calling just when I am about to sulk, a connection to someone that can help me on my journey. Coincidences? Maybe… but I doubt it.  There is an ultimate Plan at work here… and the fact that I am still laughing every day is proof enough that sometimes it takes a miracle (or two or more) to move out of darkness, and into greatness…

#BSElementaryEd  I have four brothers.  I like to say I was “second in birth order, first in command”. (cue the eye rolling from all of my brothers) As far back as I can remember I loved playing teacher to my younger brothers.  I would sit them in little chairs in the back room of our basement where my Dad had mounted a green chalkboard to the wall.  I would hold “class” and give them “homework”.  I loved to write on the board.  I loved when they actually sat and raised their hands and gave answers I was looking for.  I loved teaching them school skills, piano skills, even sports skills.  It was no surprise to anyone that I chose teaching as my profession.  I loved it.  I was good at it.  I had no idea just how necessary the teaching foundation would be in my journey, how much those skills are all part of the Plan…

#Mom  After starting my career and getting married, my husband and I had the “luxury” of planning exactly when we wanted to have a baby.  At 28, I got pregnant with no issues and was every bit the happiest pregnant woman around.  I wore cute maternity clothes, chatted with my co-workers and friends about baby names, and my husband and I discussed all the sports and academic success our baby would have.  I followed every chapter of What to Expect When You’re Expecting.  I played all the classical music, just as the books said.  I talked to and sang to our unborn child, just as the books said.   All was perfect… and I woke perfectly calm one night when my water broke in perfectly calm fashion… and my perfect little first born arrived perfectly safe. My life was perfect…

#Darkness  Everyone told my husband and I how lucky we were.  Our baby was the perfectly healthy, beautiful, easy going, cuddle loving boy of our dreams.  He was the perfect size and the perfect temperament.  He loved being held when we wanted to hold him and he loved lying in his crib/pack-n-play/bassinet/swing/bouncy chair when we needed our hands free.  Until… one day I noticed when I laid him down on his back, his eyes would swirl around and eventually disappear far down in his eye sockets… like he was trying to see way past his nose. After rounds of tests during a weekend “stay” in the hospital, we got the diagnosis we had never ever planned for and no book was on the new mom shelf to prepare us for: The doctors told us our baby was blind.  “Will he ever drive a car?” we asked.  “No” the doctor said.  “Will he ever play baseball?” “I’m sorry, no” he said.  The doctor gave us only this: “He will be a Braille reader and he will walk with a white cane.  Good luck.” When I caught my breath, I immediately started to pray for a miracle…

#Anger  I had it all planned.  I think from the moment I met my baby boy I started running in my head colorful, detailed visions of him riding his bike with all the neighbors on bright sunny days, running down the football field beating the defense and scoring the touchdown, swinging for the fences and getting the game winning home run.

It’s an interesting thing when you are hit with one of life’s curve balls. I wish I could say I was ever so graceful and trusting there was a great new Plan for my life with my son… but I wasn’t any of that.  I was mad.  I was really mad.  What about my plans?  What about my son’s destiny to be “one of the great ones” at all the things he would do?  And so began the biggest, longest tantrum of my life… longer than I will ever care to admit…

#Surrender  My son grew into a happy toddler that happened to be blind.  While I prayed for a miracle that his vision would improve, his vision worsened.  After three years of being fully consumed with raising a blind child, my husband and I made the decision to go for baby #2.  We knew our son’s genetic condition has a one in four chance, with every pregnancy, of having another affected child. The genetics counselor warned us. The doctors warned us. After considering all the information, we decided to move forward with having a sibling for our son and growing our family.  I will never forget a moment, right around Easter, when I was having one of my “conversations” with The Man Upstairs.  Okay it was more like a one way dissertation that involved me telling Him how this was going to play out: “I am not going through another diagnosis, period” was my statement.  And then on and on I went with my ultimatums list… me telling Him how the Plan was gonna work…. that is… right up until my 3 year old, my most happiest kid on the planet 3 year old, my sing a song at every second and smile all day long 3 year old, came bouncing/skipping into my room and with a big smile said “Mommy are you in here?”  “Yes.” I said as I wiped my eyes.  “Isn’t this just the best day ever?” he asked.  “Is it?” I asked him.  “Oh yes” he said, “it is just amazing and I am just so happy”.  And with that he skipped on out of the room, literally happy as can be.  And there it was, the moment of proof, a moment I now see as one of many miracles: my son did not see his blindness as sadness, so why did I?  He saw nothing but joy and love in front of him, so why wouldn’t I?

I am not sure if you have ever had a moment of surrender… but this was mine.  I changed my “speech” from that of whining to one of “Ok fine.  If indeed I was meant to raise two blind kids, than You better send me all the tools I need to do it, and to do it well.”  Geez… even in surrendering I was being demanding….

#Transformation  My second child arrived into the world early, and so incredibly active that he astounded the doctors and nurses… and has never stopped making himself known to absolutely everyone in a room ever since.  And yes, he is blind too: same condition as my first son. Although it is never easy to hear that one, let alone two, of your children are anything less than perfectly healthy, I will say that thanks to the whole surrendering night, this second diagnosis was much more bearable than the first… and honestly, this time I had my first little guy and his big beautiful smile to help me realize that although challenging, this was going to be a journey I could handle.  Once my thoughts and my attitude transformed to the positive, I became so much more productive…

#PathToGreatness  I held The Man Upstairs to my “suggestion” that He better send me all the tools I needed to raise these boys, and raise them well.  I was not looking to just “survive” raising two kids with challenges… I wanted to raise them as I would any other child: to be the very best at whatever it is they wanted to do!  That meant I had to learn Braille so they could learn Braille.  I had to find out about canes and safe travel so they could learn the techniques.  I had to find out what blind people do for a living, what they do in their free time, how they access tv and computers and games and phones and…. the list was endless.  But little by little, resource by resource, I filled my “toolbox” with tools that my guys would need.  At the same time, our family built our team that we needed to advise us medically, educationally, etc.  We flew around the country to see the best doctors to get a true understanding of the rare disease our boys have and what to expect.  We consulted early intervention and education experts to make a plan for the boys’ education path.  I read books about successful blind adults and we sought opportunities to get our boys up close, literally, to blind role models so they would know the sky is the limit for them.  We were learning everyday how to help our boys’ begin their own paths to greatness…

#Appreciation  As luck would have it, my third child came into our lives earlier than most expected, but just in time to make our family complete.  My daughter was born just thirteen months after my second son (I will pause for all the gasps and OMG’s) and while it has been complete mayhem with kids so close together, we are so very lucky to have her incredibly positive and funny personality with us.  My daughter is fully sighted – so much so that to this day (she is 10) I sometimes still stare in amazement at just how much she can see!  Ever since I gave birth to two children with no sight, I so greatly appreciate the gift of sight, especially in a child…

#cureCRB1  While my husband and I are raising our children, blind and sighted,  to know they are perfect in every way and that nothing about them needs to be “fixed” per se, a door to cure our boys’ blindness opened for us in 2011, and we have been working to cure CRB1 disease ever since.  The biggest, most successful fundraising effort we have created so far, actually our children created,  is our Bike the Basin event, a youth cycling movement that involves thousands of people, mostly kids.  It is interesting:  while I am not actually in a school classroom in front of 25 kids as I was trained to be and hoped my whole young life to be, I am instead working with hundreds of kids all year long to pull off one of the biggest youth events in town.  Also, in running a worldwide foundation that addresses blindness, with most of the patients being children, I talk with people every day about the milestones their blind children are hitting, about reading levels they are at, about education plans, teaching strategies, etc. Funny how the training life brings your way ends up being for a purpose way different than expected…

#MyPurposeDrivenLife  When I first read The Purpose Driven Life (Rick Warren) I loved it, but honestly I expected my purpose to either be written in the final pages or to come to me in the middle of the night.  I swear I got to the end of the book and was like “okey dokey… I will sit here and wait for a phone call or a trumpet guy to hand me my purpose!”  Um, that so did not happen!  But what did happen was a shift in my way of looking at my path and at my challenges that came into my path.  I wasn’t quite sure for years what my purpose was – I thought for a while that it was to raise three children and help them overcome their challenges.  But that just wasn’t sitting right for me.  I mean, I knew I was meant to be the Mom of these three kids… but my purpose had to be more about me as a person, in addition to me as a mom.  It took a while to realize.  It took a few years of moving forward, with my eyes wide open, ears wide open… and it came… .  What I know my purpose to be now is to share my journey of shift in perspective, of optimism over pessimism, of tool box building instead of excuse gathering, and team building instead of lonely sulking. My purpose is to take others by the hand, albeit physically or metaphorically, one at a time or groups at a time, out of their own personal or collective darkness…. and inspire them to create their own path to their greatness.  We all have greatness waiting… we just need to face our darkness, create our plan, gather our tools, and recruit a team to help us…  Contact me if you need me on your team.

A team sport I never saw coming…

I am admitting it here: I am a total freak for all things sports.  I like to play ’em.  I like to watch ‘em.  And oh my do I love screaming and cheering from the sidelines when my kids are playing! I grew up spending more time on ball fields than anywhere else.  Now, I am a soccer/basketball/baseball/wrestling/swimming/golf mom, and I love every second of it.

I have more spirit wear for my kids’ school and club teams in my closet than a normal adult should, and I wear it all proudly.  I love the competitions.  I love watching my kids respond to great coaches.  I love seeing the incredible friendships that are made on fields, courts and in the pool lanes.  But most of all, I absolutely love the team aspect: winning or losing, working together as a team to accomplish goals.

Two of my kids are blind – not totally in the dark blind, but “so blind” they read braille, use a white cane, and have no idea what they look like -  so you can imagine my fear for them that they would never be able to participate in team sports.  Ugh… how would they ever know the feeling of winning and losing as a team…. the high fives for the great saves and the pat on the back when it didn’t go right? I feared they would miss out on what had been such a huge part of my life and so many other kids’ lives.  Luckily, we were blessed to find a blind sports program near our home where my boys learned the basics of a few sports and eventually transitioned to the regular sports in our town with only a few accommodations.

As my guys got older, though, kids got bigger, stronger, faster.  My guys were once able to maneuver an indoor soccer court and football field with minimal assistance… but as the years went on it became too unsafe to be involved in many of their favorite pastimes: football and soccer days are over, and my older son can’t play baseball anymore.  They still play some regular sports and they are involved in sports programs for the blind.  However, not wanting to limit their social opportunities at school and in the community, we looked for alternatives for them to participate.

Enter Stage Right:

Luckily, our elementary school has an opportunity each year for the oldest class, the 6thgrade, to be involved in a play.  Lots of the kids join the fun of either performing or being a part of the stage crew.  Some of the kids participate because theater is their passion… but most, like my guys, participate because it is fun and most of their friends are involved.  I was thrilled when my oldest son signed up for the play when he was in 6th grade… it so happened that was the time that his blindness was leaving him on the sidelines of sports and social encounters.  This was a chance for him to socialize with the kids and have something “productive” to do.

My son enjoyed his very, very small role in that little version of “Aladdin” so much that he signed on to be in the 7th grade play at middle school… and it was, oh my, a musical.  The problem was not all of the songs to learn… my guy is a musician, he was fine with that.  The problem, the challenge here, was the dancing, the moving all over the stage with 20+ other kids.  They had to move in unison, while singing, all over the stage and out into the theater! Arms up, arms down, move right, move left, spin, jump, turn, right, left.  Yikes!

My son is a team player in every sense of the word: he had a role in the play and he was going to be as perfect as he could.  He would meet the choreographer early before school to review all the steps of every single number.  After school, he split time between his wrestling team and the show rehearsals and while he was in the rehearsals, he worked hard on meshing his moves with all the other kids.

When opening night came I was sick with worry: I had not seen any rehearsals because my son wanted to surprise me.  He assured me he had perfected his role.  When the curtain opened and I watched him sing and move all around the stage it took my breath away.  I watched and worried that he’d crash into one of the other actors, or fall off the stage (I am sure he is cringing reading this and thinking “thanks for the confidence, Mom”) He didn’t crash or fall.  In fact, he was magnificently right on cue, for an hour and a half.   I went to every single performance and relaxed more and more knowing that he would nail it every single time.

It took me a few more shows (he went on to be in Les Miserables in 8th grade and Chitty Chitty Bang Bang in 9th) to realize that while my son perfects his role in the play, everyone else, while perfecting their own roles, is also working to be sure my son hits his mark every time.  If you watch closely, you notice that different actors have different cues for him to be sure he gets to where he needs to be on stage.  During song and dance numbers, you can see someone gently tap my son’s shoulder to cue a move in that direction.  When there is a lot of movement on the stage, you will notice someone guide my son’s arm – the arm not facing the audience.  You have to look closely to see it, and I guess because I am the panicked mom I notice it.  But that is only part of the time… the bigger aspect in the process is that while my son is counting every step from one mark to another, the other actors have to be reliable in their own movements on the stage.  If another actor isn’t where they are supposed to be, it throws my son’s count off and thereby his performance off.

While it sounds like a lot of work and a lot of extra effort, I am not really sure if it is or not.  The way it looks to me, as I watch the performances and listen to all the kids interact after the shows, it seems it is all just part of the teamwork they put in to live their passion for the stage.

I guess you could argue that my son has a knack for making these kinds of things happen and it isn’t really that others are team players on the stage, it is my son that makes all that happen.  I can tell you from discussions with him that it is indeed a team effort, between him and the rest of the cast… but I can also tell you that this isn’t isolated to just this group of actors.  My younger son tried theater in our 6th grade program this year and the exact same thing happened.  He perfected his role, and the actors around him perfected the slight guiding, the ever so subtle cue, and their own roles.

Like I said, I never would have thought of a theater production as a team sport.  Perhaps I would have thought of it metaphorically as in they all work together to pull off the show.  But from firsthand experience I can now say that from open to close of that curtain, and all the work leading up to it, the cast and crew of a show work as a team… perfecting their own roles and supporting each other to make everyone successful.  The best teams pull off the greatest performances.  I am quite blessed to have witnessed several of the best and my guys are blessed to be involved with such great teams.

Taking the wheel to steer through our one big obstacle…

15 years ago I became a mom.

15 years ago I held a perfectly healthy baby boy.  I noticed how strong he was: “He’ll be a great athlete”, I thought.  I noticed how engaging he was: “He’ll have lots of friends” I thought.  The plans and dreams were pouring through my mind as I wondered what amazing things lie ahead for this miracle, this perfect little present to the world… and then I was told he was blind.

I was told, in one very quick conversation with the specialist, that he wouldn’t do the things I dreamed about.  I was told he wouldn’t play baseball.  I was told he’d never drive.

Fast forward 15 years and that horrific moment in the very cramped exam room is so incredibly distant from my reality with my son today.  My son has done more in 15 years than I ever thought a child, blind or sighted, could do.  He is an honor student at a “regular” public school.  He gets voted to Student Council annually.  He is in a rock band.  He has won awards and is even featured in a book for his musical passion.  He did play baseball… and football, and wrestling, and competitive swimming and diving, and now he is on the track team.  He has blown every false notion and every supposed limit of blind people out of the water… he literally has changed what it means to be blind.

But there is this one thing nagging at him that is, no pun intended, driving him a bit nuts: he can’t drive.  He is 15, and for those that have or had a 15 year old, the learner’s permit and driving lessons seem to consume their every thought.  “When can we go out and practice driving” a 15 year old nags.  “You’ll pay my insurance, right?” a 15 year old pleads.  “When can I get my own car?” a 15 year old negotiates.

Although none of this takes place in my house, I know it happens everywhere else as I see it all play out on Facebook.  Because I have a 15 year old I happen to know lots of moms with 15 year olds… so my news feed is constantly streaming with pictures of proud teens sitting behind the wheel for the first lesson, and then, a few months later, smiling ear to ear with the coveted little laminated card: the driver’s license.

We aren’t ones to dwell on the negative ‘round my house, we are a family of positive thinking (usually!) and action.  Watch this:

In my house, instead of asking if he can practice driving, my son asks about gene mutations.  Instead of comparing features of cars, we compare progress and hurdles with gene therapy and stem cell transplants.  While others discuss costs of insurance and car payments, we discuss fundraising totals and clinical trial expenses.  Although it seems a dreary story that my son can’t get behind the wheel, it actually is a story of hope, of action, and of opportunity just around the corner.

Will you share our story and help us #DriveTheResearch to get my son, his brother, and the other estimated 80,000 affected people to the finish line?  I’d so appreciate it.  And next time you have an argument with your teen about driving issues, be grateful.

Sorority Sisterhood: Is it all it's cracked up to be?

ZTA is forever

Back in the 90s when I was a collegiate ZTA, there was a line in one of our rush skits that said “When we say ZTA is forever, we mean ZTA is forever.”  It was a fun skit and that was a great line… but I had no idea just how much those words would be repeated and, quite frankly, needed in my life…

 “Seek the Noblest”

When I was in college (West Chester University, PA) in 1990, I actually had no intention to “go Greek” as we said.  I was an athlete and figured I would spend my free time at college like I did in all my years prior: on the soccer field… and then I met Zeta Tau Alphas.  My sophomore year roommate, Staci (Foerst) Callahan and I seemed to meet ZTAs everywhere: across the hall in our dorm, in classes, and interestingly enough, I even met a ZTA on the soccer field! Staci and I joined ZTA (Eta Gamma) and quickly formed friendships that would literally last a lifetime. Susan Eckert, the ZTA I met on the soccer field, was not just my teammate on the field, she would become my “Big Sister”… and later she and I would become part of a team we would never see coming. It was fun to pledge ZTA with my roommate buddy Staci.  It was wonderful go through “Big and Little” activities with my soccer buddy Susan.  But later my life would take a turn that would have me thanking God for my ZTA sisterhood daily.

“To realize that within our grasp, in Zeta Tau Alpha, lies the opportunity to learn those things which will ever enrich and ennoble our lives;”

Time in college with ZTA was definitely wonderful, fun, and busy.  Oh so busy.  I am one of those to dive right in, so no one had to twist my arm to get involved in every activity and eventually take on leadership roles.  “You get more out of the sorority than you put in” rolled off so many sisters’ tongues, but I didn’t need motivation to be active.  “You learn time management skills in ZTA life” was never more true as I learned pretty quickly that keeping ZTA activities, studies, and a busy soccer schedule balanced was a challenge (and not one I conquered right away!)

Leadership skills that last a lifetime

As tuition prices climbed, I would end up having to get a job during my junior year.  I was studying to be a teacher, and junior year adds many more classes that had big time commitments.  There were only so many hours in the day so I had to make a choice: invest my time in soccer, a sport I had played and lived for since I was 8 years old; or grow with ZTA.  It was a grueling choice, but I hung up my cleats and chose ZTA.  I got involved in leadership roles and by my senior year, circumstances that I can only see as Divine Intervention, would give me the opportunity to become Chapter President.  I remember our Traveling Leadership Consultant talking with me about the Presidency and her words “you will learn leadership skills that will last a lifetime” now ring in my head daily: she was exactly right.

Fast forward and there was graduation, moving away from my hometown, the list goes on.  Life gets busy when you have to grow up and be an adult, so I didn’t get to talk to my sisters as often as college days.  Through lots of life’s journeys, my ZTA sisters were always a phone call or email away.  They stood by me at my wedding (I met my husband through a ZTA sister!). They flew to Chicago to see my first born child.  All great times, all good stuff.  But the true testament of sisterhood, the truest display of love, friendship, and commitment to our crown and each other, came when life dealt me a blow that would take years to regain my balance: my first baby was diagnosed as blind.

Darkness

I will never forget the day the doctor told me my 4 month old perfect son was blind.  He was “so blind” that he would need to learn Braille and he would walk with a white cane.  No driving.  No baseball.  No soccer in his future. He had something I had never heard of, Lebers Congenital Amaurosis, which is actually the most severe form of Retinitis Pigmentosa.  He had hardly any vision if any at all, and whatever he did have would be gone by his teenage years. I had never heard of LCA because it is a rare disease, so rare that it only affects about 3000 children in this country.  No treatment.  No cure.  No hope.

After returning home to Chicago from visits to all of the experts we saw to confirm our nightmare, I reached out to Susan and Staci through email to let them know the news.  I couldn’t talk yet, I told them –  I couldn’t stop crying enough to have a phone conversation.   I assured them I would call soon, but needed some time to process.  Staci emailed right back with her unwavering love and support, and Susan called me almost immediately after I hit “send”.  I answered and actually laughed for the first time in a while when I said “Sheesh, did you read the whole email? I said I can’t talk yet.” We always have silly things we say when we first see each other, you know, the goofy “inside jokes” that only she and I get.  But this time, Susan’s voice was so serious I was nervous.  “Listen to me,’ she said sternly, “My niece was just diagnosed with the exact same thing.”

LCA-CRB1

I was stunned.  There are only 3000 children in the US with LCA, and Susan is directly connected to two of them? Speechless.  It gets better: There are approximately 19 known genes causing LCA.  Each gene is its own rare disease as each gene causes certain, specific forms of LCA.  In 2009, after my family’s second attempt at genetic testing, we found out Susan’s niece and my son had the exact same genetic defect causing their LCA.  They are both LCA-CRB1.  There are approximately 300 children in this country with LCA-CRB1 and my ZTA sister, my “Big”,  is directly connected to two of them.  Wow.

“to be true to ourselves, and to those within and without our circle; to think in terms of all mankind and our service in the world;”

Out of darkness… and into greatness

Jump ahead a few years to now:  I have three children and two of them, both of my sons, are blind from LCA-CRB1.  My ZTA sisterhood couldn’t be more beneficial to my life, and all the promises during collegiate days couldn’t be more true, and strong, and… noble. The leadership skills I gained in ZTA sure did last a lifetime: in 2011 I found other families with LCA-CRB1 children and started a worldwide organization to fund research for a cure for LCA-CRB1 and support the affected families living with the challenges of blindness. Our organization, the Curing Retinal Blindness Foundation, is currently funding research teams all over the world – and we now have treatments and cures within reach.  The biggest fundraiser for our organization is one that my children started.  Bike the Basin, a youth cycling event, is closing in on raising a half million dollars for CRBF.  This event draws 200 youth volunteers annually and Staci is the volunteer coordinator, managing all 200 of them! Another one of the biggest events for CRBF is our Fore Sight Classic Golf outing, and Susan works with my husband to coordinate sponsors, golfers, etc.  At both events, these ZTA sisters stand with me, helping me achieve goals no one thought possible… and the best part is that they keep me laughing, like ZTA sisters can do.  I am so proud of the work they do for CRB1 kiddos, and I know they are so proud of me too.

ZTA connections to my journey are constant.  Through a good friend, I was recently connected to a magnificent production company, ShadowBox Pictures, who volunteered to create our latest CRBF awareness video.  As it turns out, the family that owns the company has three children too… and one of their daughters just became a ZTA (Eta Lamda).   Watch the short but powerful video, “Driving the Research”, below or click here. (Mia, the ZTA, is actually in the video, she hands my son, Michael, his cane. I’m the goofy Mom in the backseat!)) 

In my journey with ZTA I can say many, many great things, but the greatest is that my ZTA sisters always uphold my favorite part of our creed: Remembering always that the foundation precept of Zeta Tau Alpha was Love, “the greatest of all things.”

WANT TO HELP? If your chapter would like to get involved in the mission of the Curing Retinal Blindness Foundation, send an email to me  at curingretinalblindness@gmail.com

NOTE: Staci (Foerst) Callahan is currently Ritual Advisor Lamda Zeta (Lehigh Univ) and Membership for Philadelphia Alum Chapter (former Chapter President).  She is a Former National Officer – District President for IIA and a Certificate of Merit and Honor Ring Recipient Kristin (Schneider) Smedley is a member of the Philadelphia Alum Chapter.

Follow Kristin on Twitter @KristinSmedley