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…

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Parental Ping-Pong with a side of memories

So much has been going on lately…  I did the Avon Walk for Breast Cancer in July.  My boys were gone most of the summer and I missed them like crazy.  Then they came home and I didn’t miss them so much after that.  And now school has started… and it just so happens that Danny is a kindergartener now.  Whew!  So very much happening and I haven’t been able to write a thing.  I’ve gotten part way through several posts.  But then I see a bright light or shiny object and, well, I just can’t seem to finish one up. 

I am determined to complete this one, though! 

~~~~~~

So, the boys were at their Va-Va’s house (Daddy-O’s mom) for most of the summer.  Ben doesn’t really enjoy going to her house.  She’s a hoverer.  A micro-manager.  She’ll get up in the middle of the night to check on my soundly sleeping, non-infant children.  Not that these are bad things… they’re just not MY things.  Nor, Ben’s apparently.  Thankfully, he doesn’t mind hanging out over there during the summer as much because he gets to swim more days than not.  But he feels that he “didn’t get a summer” to a great extent.  Danny, on the other hand, doesn’t mind being over there at all.  He could probably use much more hovering and micro-managing than he gets in our household.  Sorry, it’s just not the way I roll. 

We tried very hard to enjoy the kids when they came home on the weekends.  We did lots of fun things like going to the fair more times than we’ve EVER been before and taking in a few concerts, doing the lake thing, etc. It felt a lot like what I imagine a divorced parent feels on their visitation weekends with their kids.  Shove as much fun in as possible and be damned the rules.  While it was fun and certainly liberating, it was also sort of icky-feeling and I don’t ever want to have to feel like that again. 

And now school has begun.  I find it hard to fathom that I have both a Fifth Grader and a Kindergartener this year.  Danny is going to Hawthorne Elementary because they have a Special Needs Kinder class.  I just didn’t feel that he was socially ready to be in the mainstream kindergarten at Baywood.  I love that his class makeup is only 8 kids and a whopping 5 adults!  I also love, love, LOVE that he doesn’t have a dedicated Aide this year.  What I don’t love so much is that he seems WAY more advanced than his classmates and MUCH more social.  I worry that I’ve underestimated him.  I guess only time will tell.

As for Ben, well, I think this year will be very exciting for him.  At least my 5th grade year was.  I remember it very clearly.  At least the social aspects.  Interestingly, it’s the only year I can’t tell you specifically who my teacher was.  Hmmmm.  What I can tell you is that Angie Haywood and I both began wearing bras that year.  We were (if I remember correctly) the only girls in our class that did.  I also remember going behind the maintenance shed with a boy  – I think I was expecting a kiss and may have actually gotten one at some point (that part’s fuzzy)  – but instead got my bra snapped.  And so began my self-consciousness and poor  body image.  It was at least a decade and a half later before I realized that having boobs was like having a Super Power – they could be used for good or evil… but mostly, they could be USED.  Oh, wait… this isn’t about me. 

So, I’m thinking this is going to be a very fun year for Ben.  A year of great changes.  I hear rumors that pubic hair may be making an appearance sometime in the near future.  (Ack!!!!!  La, la, la, la, la! ) Really, though, I have no concept of the male pre-pubescent angst.  I’m beginning to gather there is a lot of anger and frustration that goes along with it, however.  Just the other day I required something of him – something, I’m guessing, that was either completely beneath him or too demanding of his precious time – causing him to fly into a frustrated meltdown and run to his room.  He was crying and mumbling angrily.  Then I heard his muffled yell of unfairness and hatred.  He was yelling into his pillow.  Oh, how I remember those days!  I considered it private time and didn’t interrupt him. 

So maybe there’s not such a difference between boys and girls at this age.  But here’s where my concern lies…  He doesn’t really seem to have many friends – certainly not a close or best friend.  When I dropped him off at school the first day there was a circle of 5 or 6 boys he’s known and played sports with since kindergarten.  I watched him circle the group several times, land once or twice for a minute or two then begin a meandering orbit again.  I don’t think he ever actually spoke to them beyond a hello.  It was the same last year.  Towards the end of the school year I thought he’d finally found a good friend.  He seemed to be hanging with one boy quite a bit.  However, when Ben approached him on the first day of school to ask how his summer was, he was told it was none of his business.  It hurts my heart.  I know how important friends are in these years of change! 

It wasn’t always like this for Ben.  Our weekends used to be filled with playdates and sleepovers.  He used to be met on the playground with a chorus of greetings.  Then we put him on ADHD medication.  Suddenly, everything seemed to change.  He doesn’t go outside to ride his bike on weekends anymore unless we push him to.  Even if we don’t let him watch tv or play video games he really doesn’t want to leave the house.  For the life of me I don’t know if it’s the medication or just Ben.  And I don’t know what to do about it. 

So, this is my year to worry about my oldest boy.  The youngest seems to be doing just fine.  Is this what parenting is all about?  A ping-pong game of worry and concern?  Maybe I’m just watching too much CSI and Criminal Minds and not having a close friendship is nothing to be concerned about… 

 

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.

Running with the Big Dogs

He runs!

Danny runs!  Not with speed or skill.  Not even with any sort of grace.  But he runs.

After Ben’s baseball game tonight, Danny sat in the grass before the snack bar with the boys from Ben’s team and all their siblings.  In the shady cold of the setting sun he was just one of the kids.  He laughed loud and hard with the others when the talk turned to horse farts.  He rolled in the grass from side to side, over a hotdog and back again.  He laughed.  They laughed.  He pinned his brother to the grass.  They all laughed some more.  He was one of them.

Then all the boys ran off.

That’s usually when he turns to Daddy-O and I in frustration and anger.  We entertain him and he entertains us.  Adults are much more stationery than kids…

But tonight was different.  Danny called for them.  They were long gone across the outfield and up the stairs.  He called and called for Ben and his friends.  He asked me to take him to the boys.  “They’re running all around.” I said, “Are you going to run, too?  You’ll have to run if you want to play with them.”

“I want to run!”

“OK.  Let’s go!” and I grabbed his hand.  This is how we run.  We hold hands and lumber along at a slightly quicker and more jarring pace than normal.

Danny yelled and snatched away his hand.  “NO!  I want to run by myself!  BY MYSELF!  Make Ben watch me!”

And he did.  He ran with loose arms and a giant smile.  He ran straight across the outfield then staggered to the left, right, left and left again.  He paused to find the voices of parents and laughing kids then picked up his loping once again.  The girls joined him.  They ran backwards and called to him, this way and that.  They ran behind him urging him on as he chanted over and over, “I’m running!  I’m running!  Watch me run!”

I stood with the other parents and watched in amazement and beamed.

He ran with the big boys across the grass.  He begged to run after everyone else left.

Tonight Danny had enough of standing still, of waiting for the fun to come to him.  Tonight, he was just another one of the boys.

Brilliant!

I was in a very foul mood today.  I am really getting tired of it, too.  I can only imagine how my poor family is feeling.  Personally, I think it’s tied to my lack of walking lately.

I was getting ready to head out on a (hopefully) mood-changing stroll while fending off Danny’s incessant questions.  When I explained that I was in a very grumpy mood he asked why.  I told him that his yelling, arguing and constantly telling me “no” made me unhappy which made me grumpy.

He replied, “Maybe you shouldn’t let me do that.”

Brilliant!  Why didn’t I think of that?

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.