What Blindness Cannot Do.

We’ve all seen this touching poem written by an unknown cancer patient.

WHAT CANCER CAN’T DO

It cannot cripple love, it cannot shatter hope

It cannot corrode faith, it cannot eat away peace

It cannot destroy confidence, it cannot kill friendship

It cannot shut out the memories, it cannot silence courage

It cannot invade the soul, it cannot reduce eternal life.

It cannot quench the Spirit.

All this is true, and more.  I am living proof.  But it’s not just true about cancer.  It is true about any situation in our lives.  I know I have passed my positive attitude on to Danny.  I hope he keeps it throughout his life.  I offer this regarding blindness:

WHAT BLINDNESS CANNOT DO (by me)

It cannot silence sound.  It cannot stop creativity.

It cannot dim vision.  It cannot eliminate motion.

It cannot reduce self-respect.  It cannot erase intelligence.

It cannot still hands.  It cannot destroy heart.

It cannot limit dreams.

 Here is my internal inspiration!

Danny playing at Big Sur Creek

And here is the inspiration found in my inbox this morning.  A blind photographer.  Can you imagine?  No?  Well thankfully Pete Eckert could…

Amazing, right?  I wish no less for Danny in his lifetime.

What I worry about…

Hoo boy!  Today’s suggested topic from The Daily Post is “Are you stressed out?” Well, really… who isn’t stressed out these days?  If you’re not unemployed or under-employed or upside down in your house or already lost it you’re in the minority.  It seems like everyone is broke.  There are furloughs and lay-offs and foreclosures everywhere I look.

Daddy-O and I are working.  Thank you, God.  We are, however, trying to navigate the quagmire that is the Mortgage Loan Modification process.  They sure don’t make it easy but they do make it extra stressful so that’s something.  Heh.  Business has really picked up for Daddy-O in the last month or two so we’re starting to see a wee, tiny light at the end of the tunnel.  (Hopefully, it’s not a train.)  But that is not where my stress lies.

Danny needs scleral shells.  I’ve known about it for a while now but life always seems to get away from me.  When I got his school pictures back in November I realized how imperative it is that we start the process of getting his prosthetic eyes.  His eye socket seems to be dropping.  His face is becoming asymmetrical.  Not. Good.  What’s really not good, though, is the cost associated with the shells.

 

Danny's Kindergarten Picture

 

D. Danz & Sons is the company that services our area.  Luckily, I hear they are one of the best available in the prosthetic eye business.  That’s the good news.

The bad news is that the cost for each eye is $4,610.  Yep.  You read it right…  for the pair of shells it will cost a whopping nine thousand two hundred twenty dollars!  $9,220! The worse news is that my insurance will only pay $1,000 total.

I really don’t know how we’re ever going to pay for it.  NOT getting them is not an option, though.  sigh.  I never thought I’d need to worry about things like this since I have very good insurance through work.  It’s funny how you don’t realize just how difficult medical (and insurance) issues are until there is a problem…

I did get a point in the right direction from our Pediatrician.  They told me about a local organization called Jack’s Helping Hand.  I had heard about them before because they have a toy lending library for special needs kids.  What I didn’t know is that they have a program to help with medical/lodging/travel costs not covered by insurance.  I just need to hurry up and do the paperwork since Danny’s appointment is February 19th.

Please put in some prayer time asking that Jack’s Helping Hand accepts our request.  I honestly don’t know how we’ll cover the costs if they don’t.  Perhaps  we’ll do some sort of fund-raiser.

Anyway… that’s my big worry these days.  Not as big or bad as it could be.  Not so different from anyone else.  Just money.  Just with a little twist…

The Bombs Bursting in Air…

Five years ago this week we found out that Danny would never see.  He was 9 weeks old.  I can remember the heartbreak and trauma like it was yesterday.  Here is an excerpt from the email we sent to our friends and family that day.

We discovered Daniel’s eye was very clouded over on Memorial Day.  We suspected a cataract.  It took us two weeks to get into the Pediatric Ophthalmologist – not that getting in sooner would have made a difference anyway.  She (the Dr.) took one look at his eyes & made an appointment for the next day at Children’s Hospital Los Angeles.  Things happened very fast after that. 

Wednesday found us at CHLA seeing Dr. Song who specializes in cataracts & glaucoma.  After about 5 minutes and a quickie ultrasound on his eyes he said he had tumors behind both eyes & casually threw out the words Retinal Blastoma.  Know that I about checked out right then & there.  Glaucoma & cataracts are one thing… cancer is another entirely.    Dr. Song ran down the hall & grabbed Dr. Murphree who specializes in  optical tumors.  Dr. Murphree and another doc plus a resident all spent a bit of time doing an u/s on his eyes & decided that they needed to have a CT Scan & do an Evaluation Under Anesthesia (EUA) the next day.  He had bilateral detached retinas & maybe tumors but he wasn’t sure. 

So, fast forward to the EUA.  Thankfully, in the middle of the procedure the social worker came out to ask more questions to see if this was caused by his prematurity and let us know it WAS NOT cancer.  Insert a universe-sized sigh of relief here.  Unfortunately he did have glaucoma, she says.  Back to the OR.  

So, here is the official diagnosis/prognosis.  Daniel is blind.  Can you hear our hearts breaking?  He has Norrie Disease, narrow-angle glaucoma & bilateral detached retinas.  He will never be able to see.  Norries also carries with it about a 50% chance that he will lose his hearing at some point & be developmentally disabled.  That is yet to be seen.  There is really nothing they can do to restore his vision.  They can, however, relieve some of the pressure from the glaucoma.  So, on Friday, June 24th we will go back to CHLA so they can remove the lens & scar tissue from his rt eye.    They will do the left eye later on.    Obviously our lives have changed drastically overnight.  We’re still reeling from the news.  We appreciate your prayers for strength & good care while we go thru the surgeries.  We know God has a special plan in mind for our little man. 

In rereading this email I’m struck by two things: my immersion in the facts of his situation to forestall the pain heading my way (a coping technique I still lean on heavily) and our faith in God’s master plan. We have come a long, long way since that day.  We’ve discovered that the developmental delays are overstated but the hearing loss associated with Norrie affects closer to 100% of the boys.  The Lord giveth and the Lord taketh away. 

Life with Danny is always full of surprises!  I took the boys to watch our local SLO Blues play baseball on Saturday night.  It was fireworks night.  I had Danny sitting on my lap for the show.  It was awesome!  Easily as brilliant as any 4th of July fireworks display I’ve ever seen only better because it was so very close.  I could feel the booming reverberate in Danny’s chest as I held him!  After the show he talked about the fireworks non-stop as he usually does when something excites him.  One of his comments, however, stopped me cold.  “What was the big lights and the big booms?  Was it the fireworks?”

“Big lights?”  What?! 

“Danny,” I asked him, “could you see the lights?”

I never got a straight answer from him.  He was way to absorbed in his own questions to answer any of mine.  But he does have some light perception so it’s not a big stretch to think he actually saw the bright explosions of light in the fireworks show.  Can you imagine how beyond thrilled I am?  Can you imagine what a pure joy it is to think that there is something in the world that my sightless son can see and that particular something just happens to be so spectacular?  To think he may actually be able to understand on some level the “rocket’s red glare” line from the National Anthem (his favorite song).  Oh, be still my heart!!!

I’m just saying that life is good!  I am so lucky to have a wonderfully happy, healthy 5 year old with more gifts than disabilities.  I wouldn’t trade him for the world… but feel free to make an offer anyway.  Ha!  I’m always open to negotiation!

Shell Game

Good news.  Turns out Danny had double ear infections.  His hearing became much better as the infections cleared up.  I am still troubled by his occasional comments about ear ringing.  I’ll withhold excessive worry about impending deafness, however, until A)I’ve managed to get him a hearing test and B)I free up some space on my Worries card.

In the meantime, I’d like to introduce you to my next medical dilemma.

Adorable face, is it not?  Despite his never-ending malaise this winter and his general hatred of having his picture taken he still manages to look cheerful.  Certainly more cheerful than Mommy is looking these days.  There might actually be some sort of reverse correlation going on.  I just can’t prove it.

Notice anything different about his right eye?  It seems to be sinking back into his head.  Probably because that eye seems to be shrinking.  Dr. Tawansy warned me this might happen.  The eyeball is a spacer for the eye socket.  If a child loses one or both eyes before his skull fully develops there is bound to be some deformation.  The solution is prosthetic eyes.

Of course, Danny still has both of his eyes.  They are just abnormally small due to the Norrie Disease.  In his case he will need scleral shells.  Scleral shells are sort of like an enlarged, thickened contact made of plastic that can be placed over the original eyeball.  They make a mold of the eye socket using a material similar to the stuff a dentist uses for impressions. Danny is sure to f-r-e-a-k!!! I have no idea if this is covered by my insurance but the fitting fees are in the $2500 to $3000 range.

So, that’s all the bad news.  The good news is that his eyes will look completely normal once he has shells.  Oh, Heaven.

Here’s a question for you:  what color should we make his eyes?  He was born with brown eyes like the rest of us.  However, his eyes have been blue since infancy and that’s what he’ll tell you if you ask him what color his eyes are.  His blue eyes are striking with his dark coloring.  I must admit I’m partial to that.  But he’d fit in with the rest of the family better with brown eyes. Just out of curiosity Daddy-o asked Danny what color eyes he’d like to have.  His answer:  red.  Or green.  But really red because he likes red.

Heh.

The Sound of Disappointment

“On a drizzly gray day, a young blind girl sets off on a journey down into the tunnels of the subway.  The trains transport her to impossibly wonderful places she can see only in her mind.  She swims with dolphins, sunbathes on a whale’s back, flies through the air between skyscrapers, and travels to the end of the world.  Spectacularly illustrated by internationally bestselling author Jimmy Liao, this beautiful, evocative book celebrates the power of imagination.  This is a moving, magical n readers won’t soon forget.” 

The Sound of Colors, back cover

Sounds great, right?  Sounds like it would be a wonderful book for a young blind boy like Danny, right?  Not so much. 

I bought The Sound of Colors ~ A Journey of the Imagination for Danny’s birthday.  I anticipated a book about a newly blind youngster describing the colors of her sighted world with the sounds from her unsighted one.  I expected it to be similar to The Black Book of Colors by Menena Cottin which is the best mainstream book for vision impaired kids I’ve ever seen. 

The Sound of Colors arrived in the mail today.  I cracked it open and began to read with excitement, already anticipating sharing it with Danny this evening.  At first I was confused… wondering when the meat of the story would start.  It’s moving very slowly.  Plods, even.  Where are the color descriptions?  The vivid imagery that even a blind boy would be able to relate to? 

Only one page was as I expected.  It was the highlight of the book for me. 

“When at last I walk out of the tunnel I can’t see the light, but I can feel the leaves falling like sunshine all around me.”

Mostly, I found this book to be depressing instead of empowering.  Certainly not suitable for my blind 5-year-old who doesn’t realize he is different from anyone else. 

“Home is the place where everything I’ve lost is waiting patiently for me to find my way back.” 

That’s not so bad, actually.  Sort of poetic.

“The last thing I lost was the light, as if somebody played a joke on me, turned off the switch.  I tried and tried, but I couldn’t find it again.”

Hmm.  A little dark for a children’s book (if you’ll pardon the pun).

“So I went forward, step by step, into the dark.  Now I listen for the sound of the colors I can’t see.  I try to smell the shapes, taste the light and dark.  And I hope to find a friend who will read me a poem while the window fills up with sunset.”

And yet…

“There must be someone who’ll sit beside me, sip tea, tell me her hopes for the future, and listen to mine.  …one thought keeps me going — someone could be waiting for me at the other end.”

OK.  Now it’s getting a bit sad.  And needy.  But wait.  It gets worse.

(Speaking of a butterfly) “She’ll take me to the friend I need to find.  She’ll lead me to the place where all the colors are.  She’ll bring me back to the light that I lost, still glowing here, in my heart.”

So, is it just me?  Gloomy, right?  There is one good thing I can say about The Sound of Colors, the illustrations are absolutely riveting.  They are far more interesting than the story itself.   

All in all, this is not an uplifting book.  Not even an empowering one for people with disabilities.  It’s a sad, depressing book that implies that blindness equals loneliness.  Maybe something important was lost in the Chinese to English translation.  Regardless, I’m sending this book back to Amazon.com. 

 

Whatever

Yesterday was a big day.  I went to observe a kindergarten class on Danny’s behalf.  A Special Education Kindergarten.

I’m always amazed when something offends or bothers me because I’m usually so whatever about stuff.  The first time his Orientation & Mobility therapist brought a cane for Danny to use he paused before showing it to him.  He looked to me and asked if I was ok with it — the cane.  I didn’t understand what he was asking at first.  I was too busy being excited for Danny to examine my own emotions.  I hear a lot of parents get a little freaked out when they see their little ones using a cane for the first time.  Meh. I wouldn’t know. 

There’s a possibility Danny is somewhere on the Autism Spectrum.  It’s never bothered me.  Whatever.   He is who he is and a label on his quirkiness isn’t going to change anything.  What it may do, though, is identify other tools we need to provide for him to be successful.

We have always planned on mainstreaming Danny.  In theory, he’s just like every other kid only he can’t see.  Why make any more concessions to his disability than we have to?  Life moves fast so try to keep up.  Blah, blah. blah.   Daddy-o and I don’t cut either of the boys much slack in the expectation department.  Sink or swim.  Right.  Right?

This school year it has been particularly difficult to find an aide (para-educator) for Danny.  They spent a good amount of time interviewing before school started.  When I finally got the gal’s name I Googled her for some reason.  What came up was less than comforting.  There were at least a dozen sites where she professed to be a Wiccan into Paganism and the Occult.  I totally lost my cool.  Turns out our school district doesn’t Google their potential applicants.  We’re on our third aide since September.  The Wiccan didn’t make it out of the gate so we had the Para-Educator’s educator working with Danny until they found someone else.  That someone else was a guy who had been aiding in the preschool class for a while.  He was enthusiastic but had no formal para-education training.  Danny loved him.  Turns out it was because he was an enabler that didn’t challenge Danny at all.  Which brings us to our current aide.  I’m not a fan.  Danny seems fairly ambivalent.  She strikes me as a clock-puncher.  She has no investment in Danny’s successes or failures.

Danny has done a good amount of backsliding as a result of all this instability.  Our case workers have been urging us toward placing him at their main school – the one for special needs kids.  That translates two ways to me.  Sending him to their school would relieve them of hiring someone specifically for Danny.  Also, the more kids in their school program the easier to justify it’s existence.  It would also mean a long bus ride each way because it’s in the neighboring town.  Seems like a little much for a 4 year old.  Plus it wouldn’t be very convenient for us.  I guess the whole Special Ed thing was a big component in my resistance as well.  Hey, no one is more surprised than me. 

When push came to shove and The Kindergarten Decision had to be made, I had to acknowledge that Danny is just not ready.  Not for mainstream kindergarten, anyway.  But I didn’t want to stick him back at the State Preschool again next year  The class makeup could be anything from mostly 4 year olds to all 3 year olds or somewhere in between with Danny 5 going on 6. 

So I went to check out the Special Ed Kindergarten yesterday.  There class consisted of 6 kids of varying  abilities… heavily weighted towards the Spectrum side of things.  Initially, I cringed to hear the lack of verbal skills from 5 year olds in the second half of kindergarten.  Surely, Danny doesn’t belong here, I thought.  But then I saw 1 teacher and 3 para-educators to 6 kids.  And saw the required peer interaction to earn free play time.  I talked to the teacher about how they spend inordinate amounts of time with each new activity or event; practicing and perfecting each routine until all are confident in their ability to perform.  I wondered how often Danny feels drug through life… a traveler on a journey he has no control over.  And I realized that was the place for him. 

In August my son will start Kindergarten in a Special Education class.  He’ll be surrounded by children with Autism and mental and physical disabilities.  They will be his friends.  He will thrive.  And I will be a proud Mom.  I’ll be all whatever again for the next big thing.

Danny’s Song

Danny had a substitute aide at preschool last week.  Her name was Carrie, I think.  She certainly made an impression on him in that single day!  He talks about her all the time. 

When I dropped him off at preschool today his teacher gave me a piece of paper with notes that Carrie had taken while talking to my little man.  She titled it Danny’s Song.  I should really take a cue from her and compile his ramblings on paper, too, lest they be lost forever. 
Here for your enjoyment and insight, I give you Danny’s Song.
(While sitting on the couch in class)
I’m sitting on a sofa Sunday afternoon.
When the music is playing
That is why we are clapping
Because we love the music.
I just want to be where it sounds good.
Pickles are good for me.
They are good brain food.

I just caught one fish!

I want to get under the table
so I won’t see you.

DREAMS
They are just good stuff.
They talk about happy things.
I like to think about dreams
It makes them come true.