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.

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Wanted: Your Parental Two Cents

Help! 

This is a touchy subject.  I wouldn’t be broaching the subject if I wasn’t at my wit’s end.  The whole thing embarrasses me… and Daddy-O.  Apparently, though, it doesn’t embarrass the one person it should!  Frankly, I just do not know what to do about my oldest son.

He steals.  He takes little things from stores – things he can fit in his pockets unnoticed like lip balm or those stupid silly bands.  He pockets small objects, toys mostly, from his cousins – though he is always quick to proclaim innocence and ulterior action.  I believe he pilfers erasers and pencils, etc. from the school book fair but can’t actually confirm it.  And, most recently, he has taken candy from a friend.

This has been going on in various manifestations since he was 3 years old.  The week before his 3rd birthday we went to the party store to buy stuff for his birthday party.  He asked for a mylar balloon.  I said no.  When I put him into his car seat I noticed something sticking out from the pocket of his sweatpants.  He had stuffed them full of latex balloons.  I immediately marched him in to the store and made him return them to the cashier and confess (in front of a long line of customers).  The cashier was embarrassed and dismissive.  “It’s not a big deal”, she said to me in front of Ben.  I stridently disagreed, took my son home and spanked his bottom (with my hand, thank you very much overly-concerned-about-corpal-punishment people). 

A couple of years later he took some lip balm from the local surf shop.  Then went out of his way to show me the item as soon as Daddy-O brought him home.  Busted by his own bragging.  He’s cute but not the brightest bulb in the pack.  Off he went with Daddy-O; back to the surf shop.  We asked that the owner call the police.  (There had been other incidents here and there that I just can’t remember now.)  The owner refused but did give a very appropriate lecture on the distrust for a petty thief and how they will be followed every time they enter a store.  We also made him pay for the item as well as return it.  Hit him in his pocketbook, so to speak. 

Fast forward to the last few months.  I suspect, though cannot prove, that he pilfered copious amounts of pencils and erasers from the book fair at school.  I can’t prove it because he says he bought them.  And he does have money from time to time.  And I don’t keep an inventory of what he has in the art supply category.  So I looked at him suspiciously and asked the question and raised my eyebrow at his response then let it go.  I dropped the ball, I guess.  Perhaps I should have followed up with the school… but I work and I’m busy and gah… that just seems like so. much. trouble….  and maybe a little bit I didn’t really want to know anyway.  sigh.   Same thing with those ridiculous silly bands all the kids are wearing these days.  Daddy-O bought him one pack.  One pack.  Next thing I know he has about 300,000 of them on his arms.  Where are they coming from?  Traded them at school.  Bought them at the market.  Blah, blah.  Again, no proof.  No pudding.  No trust. 

At Christmas time, he lifted a few flies from the Fly Shop in Redding.  I caught him pretty quickly when my Mom-Radar was activated by his suspicious behavior when I walked in the room.  He received a nice and appropriate bare-bottomed spanking and, again, he was taken to the store and forced to confess and return the items. 

Then last night he took a roll of Lifesavers from his buddy.  Stupid Lifesavers! And from a friend!  He’s losing his electronics through the weekend.  He’ll go over tonight and have to look his friend in the eye and tell him he took something from him.  The thing is, I don’t think it’s the first time he’s taken something from friends.  There is a suspicious PS2 game at our house when we never had a PS2.  He says his friend at Nana’s house gave it to him.  I don’t believe him any more.  On the other hand, why would he steal a game for a system we didn’t even have? 

So here is where you come in.  I don’t know what to do.  I can’t seem to get anyone to call the police on him.  Obviously, talking to him and shaming him in front of the merchants isn’t working.  He’s getting to that transitional age where things cease to be “stages” and become traits set in stone.  It’s a dangerous, messed up path he’s on.  I have a few ideas gathered from friends over the years of dealing with this.  Most are pretty harsh, which I like.  I feel like it’s going to take a rather large shock to break this cycle.  Here are some of my ideas.  I welcome beg for your feedback and suggestions.

Solution #1:  AN EYE FOR AN EYE.  Take away something of his each and every time he takes something from someone else.  Perhaps give said item to the victim as a form of restitution. 

My thoughts:  All for it, except I am usually the one buying his stuff so I’m really hurting myself.  Him, too, of course.  It’s hard for me to agree to giving away items I’ve worked hard to buy. 

Solution #2:  CAN’T TOUCH THIS.  Make him walk with his hands behind his back whenever he’s in a store/at friend’s house.  Stop him before leaving and publicly search his pockets.

My thoughts:  This one is going to happen regardless but I just don’t think it’s enough. 

Solution #3:  HUMILIATION.  My old sitter suggested this one.  When she had the same problem with her daughter she made a sign that said, “My name is _____ and I am a thief!”  She then had her march in front of the victimized store (I think it was a grocery store) for 30 minutes during rush hour.

My thoughts:  I really, really like this one.  I just don’t know what to do about location.  March up and down in front of his friend’s house?  Or maybe location isn’t the important thing…  Maybe in front of the grocery store for maximum exposure… 

Solution #4:  FORE WARNED IS FORE ARMED.  Make him (or us, perhaps) announce to store managers or parents upon his arrival that he is a thief and bears watching. 

My thoughts:  Nice.  But equally as humiliating for Daddy-O and I.  Don’t know if I’m that strong for the long haul.

Solution #5:  HUMILIATION TAKE TWO.  Make him a t-shirt to be worn either to school for a day or out and about on errands that says roughly the same thing as Solution #3. 

My thoughts:  Schools may deem this abusive.  And I do have concerns about alienating all his friends. 

Now it’s time for YOUR thoughts.  Please, please help. 

Note:  Drive-by’s wishing to only snark at my parenting skills without helpful advice are not welcome and can kiss my, well, you know. 

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…

A Timely Reminder

It has been a trying day around here.  Emotions have  been running high since last night and the unfortunate Flaming Marshmallow Incident which resulted in the burned cornea of one of Ben’s good friends.  We’ve all been feeling on edge.  And Ben decided not to take his ADHD medication this morning. 

I suspected as much when I first woke up to him pesterizing his little brother.  Wrestling.  Playing.  Wrestling.  Teasing.  Wrestling and teasing some more accompanied by an endless stream of noise, words, taunts, vocalizations, words, words, words ad infinitum.  I asked him if he’d taken his meds.  He said he had.  I checked his pill box and saw Friday’s and Sunday’s squares were empty.  Hmmm.  Obviously something was amiss but my coffeeless brain wasn’t up to solving the puzzle.  After re-asking over and over only to get a more adamant version of the same answer each time, I let it go.  It usually takes close to an hour for his pills to kick in after all. 

The moment I stepped through the front door after being at work for the afternoon, I knew I’d been had this morning!  It’s hard to explain the subtle differences in Ben’s behavior when he’s unmedicated.  You can almost tell just by looking at him!  He talks more, for one.  On and on.  And there is a defiant air about him.  And he confronts.  If I ask him to come to the table for dinner on meds he’s more likely than not going to completely ignore me/not hear me until I force him to look me in the eye.  Off medication, he pipes off instantly asking what’s for dinner and proclaiming he doesn’t want that before I can even finish my sentence. 

Tonight was no different.  He pushed and pushed to the point that he practically had to be drug to the table.  Then things got worse.  At one point, Daddy-O was standing behind him forcefully using a hand-over-hand to get him to cut up his own waffles.  The entire family was done eating before Ben had even taken a bite.  He went to bed without dinner at 7:30. 

Ironically, when I finally settled down to check my email I had a comment notification  on a blog post I’d written two years ago:

Aisha, on September 5, 2010 at 7:04 pm Said

Why don’t you get your poor kid off meds and go from there!

Why don’t I get my poor kid off meds?   Because I want him to have a childhood that doesn’t include detentions, perpetual groundings or juvenile hall.  Because I want him to be able to read when he grows up.  Because I want him to be respectful of others and a productive member of society.  Because I don’t want him to struggle for approval and acceptance only to ultimately find it in a group of kids existing on the fringe of what is right.  Because I want him to have more options for friends than those Fringe Kids.  Because if he doesn’t have to expend all his energy fighting the rules he can focus on ways to lift himself up.  Because I love him

I’m sure that tomorrow Ben will take his medication and it will be a better day.  Thank you, Aisha, for giving me reason to pause during a troublesome day and remember how much I love my son and just exactly why it is that I don’t get the poor kid off meds.

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.