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Follow along as I find the silver lining, explore the glass half full, and make some incredible lemonade! Life is funny… sort of!


My son’s PROM – I never imagined it would be an event I had always imagined

2017-04-10 12:00:32 kristinsmedley

Prom.  Some call it the greatest part of high school.  Some find it to be the biggest stress of high school. As a mom, I resided in both camps for a long time.


When my firstborn son was diagnosed as blind seventeen years ago, prom was actually one of the dream scenes of his future that went dark for me.  It’s hard to admit all these years and accomplishments later, but I thought back then that a blindness diagnosis meant no social life, no teen rituals, no prom.


By the grace of God, a few years into my journey of raising  blind children (I have two!) I connected with some wonderful folks who showed me that a full life is completely possible for those living without sight – but they let me know I was going to have to work my ass off to make sure my sons gained access to every tool they would need to allow blindness to fall into the background of life.


Work.  That’s what I did.  I was a fulltime Mom that took on a second job: teach my blind sons the tools they would need to thrive beyond the classroom – to have a normal social life in all the sighted circles.  Look at people when you talk to them.  Learn the video games the kids are talking about.  Wear the brands they wear.  The list was extensive.



My oldest son, Michael, is a junior in high school and he navigates the social circles like a champ.  He has had ups and down in his teen life, just like everyone else.  He has had joy and drama, just like everyone else.  And Michael went to Jr. Prom this year, just like everyone else.


I had visions of Michael at prom when he was still in the womb.  I also had those initial fears that this was a scene that wouldn’t happen.  So, you can imagine my excitement to see this teen ritual play out.  I literally sat back and watched Michael’s prom preparation like it was the “movie of the year.”  I took in every single detail, every stress, every fun addition, everything. For weeks Michael would jump in the car after school and give me a new detail of who asked who to prom, the new decoration idea they had, the drama over who was going where for pictures.  Not one speck of minute detail was lost on me – and I have to admit that in true Michael fashion, he made it the most fun experience I could have imagined.




I am not sure if everyone is aware, but apparently, you don’t just ask someone to Prom.  Like, you don’t just go up to someone or call them and say, “Will you go to prom with me?” Oh God no.  There is a whole big dramatic scene involved in “the ask” – it’s called the “Promposal.”  (Side note: I have argued that the Promposal is not actually an “ask” but rather a “confirmation” that the person will attend. I have a note to self to attack this in a future mom vs teen blog.)


At any rate, I find it quite interesting that I spent seventeen years making blindness fall into the background of Michael’s life, yet he chose to bring it front and center in his Promposal to his date, Lauren.   This is the Promposal poster or board or whatever the kids are saying these days.  It is a total shout out to, of all things, Braille! It says “I’d be touched if you’d go with me to PROM.”  And, drum roll…. PROM is spelled out in Braille with…. continue drum roll… chocolate chip cookies! Cute, right?


Next, the tux.  I have no idea how Michael knows fashion trends and stuff like that because I rarely talk much about that stuff with him nowadays.  But he was pretty adamite that he wanted a blue tux and he knew exactly where he wanted to go to get it: a shop called Schweon’s  near school where “all the kids were going.”  I felt like we were at a high school party when we went for his tux fitting – he saw friends of his and I saw friends of mine!  We had so much fun waiting for his fitting and alterations that I almost forgot I was spending a half a million dollars on a four hour suit! (Well, ok, it wasn’t a half mil, but it felt like it – he only wore it for four hours for the love of God!  Well maybe six hours… the point is it was a very short time!)


In the days leading up to the main event there was so much drama and excitement over flowers and dress colors and picture locations and pick up times and post parties and…. everything.  So many details.  So much excitement.  I am so grateful we have unlimited texting for Michael because oh my God pretty much all the details were worked out through group texts!


The Main Event

 Michael and about twenty other kids gathered at the home of one of his best friends to pose for thousands of pictures around the gorgeous grounds of the family’s beautiful home.  Kids groaned as parents clicked and clicked and clicked… just like I imagined.

We moved the crowd inside for more pictures, this time on a beautiful staircase.  Kids groaned as parents yelled “now look this way… this way… THIS WAY!!!… just like I imagined.


Michael and Lauren posed for the “fake” pictures of putting on the boutonniere as the moms discussed which lapel side it goes on, how to not stick yourself with the pin, etc… just like I imagined.


Then there was the photo bomb – Michael’s brother Mitchell had everyone laughing as he jumped into one of Michael’s “best friends” picture.  Mitchell smiled his devilish little brother smile and Michael’s face revealed the evil thoughts he was having about the not so cute moment… just like I imagined.


It was a beautiful evening of scenes I had always played through in my head… scenes I initially thought went dark.


For many years I worked to help my blind son be the kind of kid other kids would want to hang out with. The kind of kid other kids would approach and include. The kind of kid they would accept and select as their friend.  But Michael took all the social skills, perfected them, and now HE is the one deciding if he wants to befriend someone. He makes the choice of whether to pursue people or not.


Michael isn’t standing on the side hoping someone will come to him to be his friend.

He is in the game, on the dance floor and in the circles making his own way.  I am proud to watch him select the best of the best to hang out with.

And Prom… Michael had the time of his life… just like I imagined 😊

Posted in: Eye Believe in Miracles BLOGTagged in: blindblindnesshigh schoolprompromposalteen Read more... 1 comment

How the first snowfall reminds me of my epic fail as a Mom...

2017-01-12 12:37:39 kristinsmedley

I put this short video up on Facebook in our Thriving Blind community the other day to address a not always happy topic in the blindness realm: the White Cane.  Watch as I tell my story, with ridiculous honesty and a few random ADD moments, of how I realized I was failing my son in avoiding cane training for him! Yep… epic fail.  My lesson: having an early intervention specialist tell you that although your son has one of the most degenerative and severe rare eye diseases, a cane is not really necessary because he is doing “so well”, is definitely not good advice! Lesson learned.  And I am proud to say that Michael did eventually become quite skilled and independent with the cane!

FREE White Cane program from the National Federation of the Blind

10 fascinating facts about the white cane from Perkins School for the Blind

Maxi-Aids White Canes for purchase

American Foundation for the Blind stories from those that use the White Cane

Follow my journey of massive success and epic fails raising blind and sighted kiddos at 🙂

Have questions? Comment below and I will help or point you in the direction of help!

Posted in: Eye Believe in Miracles BLOGTagged in: blindindependencesnowwhite canewinter Read more... 0 comments

What exactly is this Hope thing and what does it do for me?

2016-12-23 12:15:34 kristinsmedley

Where there is hope, there is faith.

Where there is faith, miracles happen.

I would love to deep dive into this topic and give my perspective on hope and faith and miracles from the experience of my journey so far, being that this is the season of hope and miracles and all.  But this season of hope and miracles is also the season of wrapping and baking and cleaning and… there is too much to list, you get the chaotic picture.


My time is limited but this topic is important to me so I will simply say this:

I have said before that hope can carry you a long way.

I have been in hopeless situations a few too many times thank you very much.  Being without hope drains my energy, it suffocates my smile, it sucks the life out of me as I dwell in the negative… feeling quite abandoned by the positive.

But where there is hope, there is possibility.  And knowing that there exists possibility gives me energy to keep the faith – to keep going.

And with that energy, that faith, I can find all good things, even itty bitty small things, still good things that confirm I am getting there. Finding the good things = miracles.


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I wonder if a wiser one should have had my place?

2016-12-08 12:55:24 kristinsmedley

I originally posted this on the former home of my blog back in May, 2014.  This song I write about pops in my head all throughout December – must be all the church readings and sermons about getting ready for Jesus’s birth.  It’s the Mom in me, and most especially the Mom of special kids,  that contemplates Mary more in December than any other time of the year.  Interestingly enough, I used to listen to this song and wonder about the Higher Plan of me as a mom of special kids – but now I tend to wonder about just being a Mom in general.  (I can only ever seem to get things somewhere near right with 2 out 3 of my kids each day!) I hope you get a chance to listen to the song (link below!).


While I grew up in a home of strong Christian faith, I am not exactly “churchy” 🙂  I go to church on Sundays (well, ok, not every Sunday) to hear some fantastic music, get motivated and inspired by wonderful sermons, and see a bunch of wonderful friends.  I had always been the “cruise control Christian” you know… life is good, let’s sing a song or two, pray for good weather for a big game… nothing major to be upset  about and nothing so magnificently miraculous ever caused me to be a mega holy-roller-praising-Jesus-all-over-the-place kind of gal.

And then I found out my perfect new baby boy would have a challenge in life that I was not equipped for.  And no sooner did I convince myself that it was just one burden I’d have to survive, wham-o! A second son born with the same challenge.  To say I was devastated, defeated and depressed is an understatement… I was a mess.

With the help of a lot of people and a healthy talent for finding humor in things when I really should be crying, I scratched and crawled my way out of the depths of sadness.  And I sang a few songs to move through the madness. In my life, when I need to work out anger or celebrate something wonderful, I turn on the radio and belt out a tune that matches my mood.  It must be a carryover from a musical upbringing.  I grew up in a home with a LOT of music.  Music was always playing at our house… and between  the Temptations, Steve Miller, Billy Joel, Michael Jackson, etc… every now and again my mom would sneak in Amy Grant, a Christian singer.

Ok so listening to Christian music was not exactly top of the teenage list of tunes, but I loved Amy Grant’s voice… and eventually I started listening to her lyrics and thought they were a good message… but I had no idea when I was in my teens that later I would lean on a certain song so heavily… so heavily in fact that the song became a hug I needed… a hug from a stronger, higher place than here.

Amy’s song that has carried me through many a bad day is “Breath of Heaven”.  On the surface, it is her thoughts on what Mary, Mother of Jesus, might have been thinking.  For me, it has become a “conversation” with a God that has entrusted me with a double dose of an incredible job.  There is a part in the song that says “I wonder, as you watch my face, if a wiser one should have had my place.”  That is my favorite part.  I have never said “why me?” as in “why did you do this to me”.  But I many many many times say “why me?” is a sense of “Really?  You think I can handle this?  Are you crazy?  Surely someone else could do this better!”

For all of the Moms (and Dads!) that have a challenge in life that they did not expect… and for those questioning if they have what it takes to meet and conquer the challenge… watch and listen below – and know that it is part of a bigger Plan… YOU are part of a bigger Plan 🙂

It’s like I tell myself every day: YOU GOT THIS!

And many thanks to my Mom for insisting on getting her favorite records in our playlist (yep, I said records).  🙂

Posted in: Eye Believe in Miracles BLOGTagged in: amy grantblindChristmasmommotherspecial needs Read more... 0 comments

The Stress Regarding My Teen Trick-Or-Treating Was Not What You Think

2016-11-02 00:39:42 kristinsmedley

Recently The Huffington Post reflected on the issue of teens trick-or-treating (read it here),  which was prompted by a post on Facebook by Explore Talent (see it here)  In summary, there was quite a buzz over the past couple of weeks as to whether or not teens should be out trick-or-treating.  There were debates over age, dressing up, being required to say “trick or treat”, and a host of other issues.

14670910_10154731234058945_2686649685201036462_nI have to admit I had been discouraging my thirteen year old from getting out there to get candy… but my reason behind it wasn’t on the list of arguments that the 2.9 thousand Facebook commenters debated.

Before anyone jumps to judging and thinks I am just a bah-humbug when it comes to Halloween, let me assure you that I am totally in favor of it.  As a kid, Halloween was always one of my favorite days of the year.  My four brothers and I rarely if ever got “store bought” costumes and instead dug through a giant box of prior year items to combine with our mom’s incredible sewing talent to create the best original costumes. We always planned outfits that would not hinder our running, and I mean running, from house to house – up and down steps and across lawns to get the most candy possible in the short amount of time we had.  Each year we’d cover more of our neighborhood in record time and then run home to begin “the trade”.  I only have exciting memories of the epic holiday!



You can imagine, then, when I had kids and got to do the same with them! When they were little I’d plan the coolest costumes and my “mom friends” and I would help the kids in and out of strollers and wagons as we went house to house.  After a few years of sweating through carrying the ones that refused to walk another step and negotiating just how long they had to wait to sample yet another piece of candy, all of the moms started having starry eyed conversations about the days ahead when the kids would be able to walk up to the houses on their own and eventually go out trick or treating with friends and not need us at all.  All of the moms would talk excitedly about the non-chaperoning Halloween days ahead – all of them, that is, except me.



Now, I am not a mom that is not wanting to see them grow up.  No, I just happen to be a mom that doesn’t have the luxury of sending my kids to race around the neighborhood without me.

I am the mom of two blind kids and one sighted… and Halloween quickly became my worst nightmare as my guys got a little older.

My two boys see next to nothing in the daylight and nothing at all at night.  For us, negotiating sidewalks that turn this way and that, kids running back and forth, steps with decorative pumpkins, all in the dark – well, you can see where I am going with this (pun intended).

In earlier years I’d wear a crazy costume and try to blend in with the rowdy kids, making it fun for my boys to to have me in their trick-or-treating pack.  But each year the kids wanted to go faster and faster.  My sighted daughter was always a trooper trying to get the “pack” of friends to slow down and wait for my guys.  But let’s face it: kids are on a ticking clock on Halloween night and they have a ton of houses to get to!  Slowing down and waiting are the opposite of proper trick-or-treating skill!

My oldest son (16)  gave up trick-or-treating a couple of years ago and now sets up the “spooky” lighting and special effects for the trick-or-treaters that come to our door.  But this year my thirteen year old struggled with whether or not to go out…. and I knew it had a lot to do with keeping up, or not keeping up.

My boys have learned that as a blind person in a sighted world, you can be the best advocate for being included in all things, but some things are just not going to work.  Many times it’s just easier to realize that and be flexible to either find a different solution or take a different path.

And as far as their sighted sister goes, although she is the greatest partner of theirs in helping them navigate a world they cannot see, you can only ask so much of a twelve year old – and I knew my Mitchell was struggling with expecting his sister to lag behind the crowd and walk slower with him.

In an interesting twist, this year my daughter was invited to trick-or treat with friends outside of our neighborhood.  It was perfect! She would be off to run from house to house with her friends and Mitchell and I planned to walk through our neighborhood, at our own pace.

It turned out to be one of my favorite Halloween nights ever.  There was no yelling to wait.  There was no rushing to keep up with anyone.  Mitchell and I took the time we needed and discovered short cuts we hadn’t found before.  And the best part – we talked.  For two hours we chatted about school and life stuff.  We enjoyed catching up with neighbors on their doorsteps.  We said hello to the many kids that knew Mitchell and laughed with them over silly costumes and exchanged “tips” on houses with the best candy.  But let me repeat – for two hours, Mitchell and I got to chat, just us, no siblings or phone calls or emails to interrupt.


Our front door


Karissa the Hulk!


Mitchell – Mr. Monopoly!








And the bonus: Karissa had a fantastic time getting to run from house to house with parent chaperones trailing behind.  Michael enjoyed running the fog machine and lights at our door, catching up with friends and neighbors that came by.  And after Mitchell and Karissa completed the great candy trade, they put a bunch of Michael’s favorite candy together and delivered it to him as he was buried in homework.

In recent years I had considered Halloween one of my least favorite events to experience with my kids.  Now, I count Halloween 2016 as one of my favorites.

In my house, I’m going to let my kiddos big and small, blind and sighted,  experience the fun of Halloween for as long as they want to, in whatever way they want to.  I hope your family does the same.

Posted in: Eye Believe in Miracles BLOGTagged in: blindnesshalloweenhuffington postteen Read more... 1 comment

Video: My two teens are Changing What It Means To Be Blind

2016-10-21 11:58:57 kristinsmedley

“Your son is blind. He will never play baseball.  He will never drive.  Your hopes and dreams for your son are gone. Learn how to raise a blind child.  Good luck.”

That’s what the doctors told me when they delivered the diagnosis that my son has a rare eye disease called Leber’s Congenital Amaurosis (LCA).  One delivery of that news is about all a person can take – I got the news twice. Both of my sons have LCA.

My boys have shattered the bleak box they were put in – and they continue to raise the bar on people’s expectations of what blind kids can do… at 16 and 13 they are just getting started!

WATCH & LISTEN: the song is performed by my oldest blind son 🙂 You can follow more videos and posts regarding their journey at our little Facebook community, Thriving Blind.

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I actually sat down for 30 whole minutes! Find out why...

2016-10-13 12:41:14 kristinsmedley

I had the honor of sitting down (yep, I actually sat for 30 whole minutes!) with the mega talented Jennifer Lynn Robinson, host of Main Line Connect, to discuss my most passionate work of my life – a passion that was completely unintended and not planned for! Jenifer did such a great job of reeling in my  over caffeinated, highly excited self to get to the core of why I work at the level I do to support my blind sons in achieving their dreams, with some of those dreams involving sight.

Here is the interview and below are some key points and the time stamps of when they are discussed.



0:38      Props from Jennifer about my LinkedIn profile!

1:00      Why Networking with people ALL THE TIME is so important to my work.

2:30      What I learned about reaching out to people that are very good at what they do

3:58      The two key communities that helped me grow my mission (visit my Twitter guardian angel Jennifer Gardella for more social media tips!)

5:20      Why I do not waste one second at a meeting or conference: Who I have to “answer to”

6:45      The moment that changed the course of my life

10:28    Why I am the happiest mom driving my kids to their zillions of activities

14:45    Bike the Basin – my family’s most fun project of the year

17:35    Ask not what your community can do for you….

19:50    Shout out to this blog! Eye Believe in Miracles!

20:00    My thoughts on golf – read the post I refer to here

24:25    SMEDtalk

26:00    Why speaking about my journey is so important for the blind community

Thanks for the great discussion Jennifer!


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Facebook Friends: will you vote to channel hateful election energy for this?

2016-10-10 17:35:22 kristinsmedley

I cringe every single time I open my Facebook newsfeed lately.  It seems every day now as we approach the Presidential election, my newsfeed is filled with reactions to the latest in the Trump v Hillary “I am not as bad as he/she is” war.

Perhaps if people only posted why their candidate is fabulous it would be easier to read through.  But with mudslinging and hate spewing soaring to new heights, I am inventing a word to sum up the nonstop hate-fest for candidates: candihates.

What amazes me, though, is not actually the freeverse hating itself that’s happening, it’s who is behind it.  The same Facebook Friends that show pictures of their family’s religious activities at churches and synagogues and those that regularly share inspirational quotes that encourage their followers to be peaceful and kind and spread good karma, are the same folks that are publishing posts with hateful, hateful words about the candidate they don’t support and/or literally calling the supporters of the other candidate stupid, ignorant, and criminal (true story!).  So I ask in all educated, compassionate seriousness: What the hell?


I suppose if my perspective on life didn’t get a massive, unintended shift sixteen years ago I could very well be one of those Facebook Friends that spews hate for those that disagree with me.  I would like to think I’d be more evolved and Christian than that but I am not here to wonder or to judge.  I am simply here to offer a different avenue, a much more productive outlet for haters to channel their hate energy in a positive way.


A fun fact to consider as I move into my suggestion: Although considerable, productive advocacy work has been done in the past few decades, including excellent legislation – the Help Americans Vote Act –  that was passed in 2002, the fact remains that there are voting places that are inaccessible to blind voters, and many that are equipped to include blind Americans’ votes are staffed by people that have no idea how to work the accessible machines.  Full inclusion for all blind voters is not yet a reality in America, and I hate that fact.


To that end, I shall borrow one of the most epic statements in our country’s history:

I have a dream.

I have a dream that citizens of this great nation will shout out hate for inaccessibility and over use their right to free speech via smartphones and laptops to demand change.

I have a dream that Americans will demand accessibility for every neighbor’s voting rights instead of slamming each neighbor for their voting choice.

I have a dream that all voting machines will be accessible for the blind and the sighted.

I have a dream that today’s technological advances will be translated to the voting machines to make full inclusion a reality.

I have a dream that all the passionate Americans that are using precious mental energy to attack the opposing candidate on Facebook, would instead use that passion to rise up and stand up for full voter, full American, inclusion.


My oldest blind son will be of voting age in 2 years. My younger blind son will be eligible to vote in 5 years.  Both have had a passion and great talent for student government since way back in elementary school.  Both are effective leaders that actually weigh opinions of all involved. Both agree on some current issues and fiercely debate others. Both of my boys have shattered people’s perceptions of what blind people can accomplish, yet I live my life trying to stay one step ahead of their dreams to blast through barriers in their way.  When we moved to our current town twelve years ago, we started asking about accessible voting machines for our boys.  It frustrates me to consider that in all the towns they move on to in their very bright futures, will they always have to call and ask if their polling place has an accessible machine as well as people that know how to operate it? In this day and age, where cell phone creators and cable tv providers build accessibly into their products, isn’t it time the election committees do the same with voting equipment?

Considering my boys and the other million + adults living with blindness and visual impairment I will say it again:

I have a dream that all of the passionate Americans that are using precious mental energy to attack the opposing candidate would instead use that passion to rise up and stand up for full voter, full American, inclusion.

I wonder how many of my Facebook Friends will investigate the accessibility of their polling places. For those that do, I am very interested to know the outcome!

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Golf: Why I Hate to Love It...

2016-10-04 13:49:13 kristinsmedley

Golf and love are not two words that I often say together.  Ugh as a matter of fact just saying “golf” stresses me out.  I know, I know the big fans of the game say it’s relaxing and it’s fun and it’s great for networking and blah blah blah.  Not me.  I am more like Ted Knight in Caddyshack when he gets all frustrated and throws the golf club. I can barely make it through a session at the driving range let alone the chip and putt or the actual course!


Ted Knight in Caddyshack

My boys, however, LOVE golf.  Michael (16) and Mitchell (13) can’t see the course and they can’t see the ball (If you are new here, they are blind).  But their lack of  vision hasn’t held them back from trying any sport, and as their sports options have diminished over the years, golf has risen to the top of the list of sports they can still play, and play very well.


Although we have done some crazy stuff in our house with my blind and sighted kiddos, we did not just walk onto the golf course and give it a swing.  My guys actually learned golf with a group called Middle Atlantic Blind Golfers Association. Michael and Mitchell are in the Junior program.  At the outings and skill building events they are each paired up with a sighted coach that not only has to teach them and build upon  the fundamentals of the sport, the blind golfers rely heavily on the coach’s description of the hole, where the ball is, the surrounding area, etc.


Mitchell at the driving range

Since I am not a golfer, I had quite a few reservations when my guys started the program, and you might be wondering the same things I was: How would they hit the ball? How are they going to enjoy spending all day walking all over a course they cannot see? Are they really going to learn the sport or is this just going to be a time filler as other sports fade away? I can’t believe I ever had any reservations.


First of all, I don’t know who coined the phrase “older and wiser” because I feel like the older I get the more things I actually don’t know, so I am often in “research mode”.  Understanding how blind guys golf  was no exception.  So years ago when we first started tossing around the idea of golf for Michael and Mitchell, I scoured the internet for articles about this and chatted with lots of golfers. I heard from a few folks that some pros like to blindfold the golfers they coach to have them focus on their swing. Interesting. At the same time I was “conducting my research” my oldest son, Michael, was in elementary school and had chosen a new book to read called The Million Dollar Putt by Dan Gutman.  Back then I would often read the same books my kids were reading so we could discuss them.  I was so fortunate to read that book because it is about a young blind boy that takes up golf!


Michael at a blind golf outing

Fast forward to now and golf has given my boys an opportunity to learn and improve at a sport that so many people enjoy.  When they are out on the course with the blind golfing program, or at the local golf camp, and even participating in our annual golf outing, they open other people’s eyes to the fact that blind people can accomplish the same things as sighted people, they just tend to approach things a little differently.


And finally, a bonus perk of golf: although Michael is sixteen and cannot go for what most teens dream of, the driver’s license,  he does get to  take a turn at the wheel of the golf cart with his Dad coaching. Watch him:

So yes, I actually do love golf for all that the sport offers my boys.  But don’t expect to see me out on the course anytime soon – well, unless there is a golf cart race, in which case I’ll be all in!

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The Facebook post I have waited over two years to read...

2016-08-18 11:35:36 kristinsmedley

Yesterday I read a post on Facebook from a friend that I have only personally known for a couple of years but have “Facebook-known” longer.  I feel like I have known her forever and felt like it would be forever until I would get to read the long-awaited post.  My friend Beth was finally able to tell the world that her son had received gene therapy to restore a massive amount of his vision. Her son, Christian, has been involved with the pioneering science happening right in my hometown of Philadelphia – and the success has blown doors, windows, and roofs wide open in the curing blindness world.  The first few lines of my friend’s post:

OH MY LORD!!!! My son’s miracle story just in & FINALLY shared by none other than NATIONAL GEOGRAPHIC!!!!
We’ve waited 3 long years to be able to share his miracle publicly & it’s finally happening! Unmeasurable thanks to first & foremost our daddy God who always promised that Christian would be ok and showed us all a modern day miracle that we will now share for Your glory!

Here is a link to the story that National Geographic broke yesterday titled “Why There’s New Hope About Ending Blindness”.

Hope – it’s an interesting thing.  Some might see it as just a filler, just something to say when you don’t now how to handle something “Well, let’s hope for the best.”  Interestingly enough, I don’t know that people know the true power of the word hope until there is none.  When we are told there is no hope for a bad situation it magnifies the feelings of pain, of suffering, of sadness.

I was told sixteen years ago that there was no hope that there would ever be anything anybody could ever do to restore any vision in my blind son.  But just nine years later the team referenced in the article believed that after years of studying their scientific theory they were ready to try it out to see if indeed they could restore vision in blind children.  They gave me hope:  Hope that my blind child might one day see.  That hope that picked me up off the floor of sadness.  That hope allowed me to put my rose colored glasses back on.  That hope has carried me a long, long way.

As I said I met Christian.  I saw the vision restoration first hand in how he navigated.  I saw it in how he could look directly at people he was talking too.  I saw it in the lack of awkward body language, the lack of bumping into things, the lack of needing a white cane.  What he used to lack in vision function he now had, and I was stunned, excited, and full to the brim with hope for my sons.

I originally posted this blog over on the site of the non profit I Co-Founded and lead, the Curing Retinal Blindness Foundation, back in July 2014 after we met Christian for the first time:

michael-and-christian-with-website-225x300This is a picture of two young guys that met at a conference this summer in Boston.  They had never met before, yet they became fast friends.

The guy on the right is my oldest son.  He and the other boy have a few things  in common… each is a gifted musician, each has a smile that lights up a room, and each has a personality that draws everyone to chat with them.  But they have one major difference… the boy on the left has something my son wants to have soon… very soon.

The conference where these two  met  was for a very rare,  degenerative, blinding disease called Leber’s Congenital Amaurosis (LCA).  Both of these guys were born with this devastating disease.   Kids with LCA are either born blind or nearly blind.  Regardless of the acuity and visual field at birth, pretty much all LCA patients are expected to be “legally blind” by their late teens.  And that “legally blind” status ranges from not being able to read regular print to not even being able to see light.  Most LCA kids are”so blind” that they read Braille and use a white cane.  Their field of vision grows smaller every year as  their vision cells are dying, leaving their window to the world cloudy, spotted, and small… very, very small.

Like I said the new friend in the picture has LCA also.  I snapped this picture when I was following the boys around an unfamiliar place where we attending a barbeque.  There were hallways with lots of people, paths that turned this way and that, and ultimately a large field of picnic tables, trees and playgrounds to navigate.  If you look closely, you will see that my son is being guided by his friend… the friend that has LCA just like him.

You see, the difference between the friend and my son, the thing he has that my son wants, the thing I want my son to have… is sight.  This guy received gene therapy earlier this year.  The therapy actually restored a large amount of his vision…  and now he has enough sight to guide my son.  He has enough sight to navigate without a white cane.  And he has enough sight to actually see the people he is talking to, see obstacles in his way, and to see across a room (or in this case a  a courtyard) to where it is he wants to go.

I want that for my boys (I have two sons with LCA).  I want it for all of the kids living with LCA and other retinal diseases.  And my boys want even more: they want to be able to pick up a print book and read it instead of waiting for a brailled copy.  They want to walk through schools and malls and parks unassisted.  And one day, they want to get their driver’s licenses.  These things were impossible for my sons and the other thousands of kids with LCA just a decade ago.  But by the grace of God, the miracle of science, and generous support from lots of donors, we are getting closer.  Dollar by dollar, project by project, trial by trial, we are getting there.

Kristin Smedley co-founded the Curing Retinal Blindness Foundation and she and her family, together with their community in Bucks County, PA, host the largest CRBF fundraiser, Bike the Basin.  If you would like to Join The Mission to help fund cures for retinal diseases please DONATE here.    Together we can do so much.

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