Today was brought to you by the letters D and S.

D is for Danny
Who uses a cane
But complains all the while
Which is really a pain.


D is for Damp
A typical day
With low hanging fog
Making everything gray.

D is for Downhill
On the way to the gate

To get to the swings
Before it's too late.

S is for Spiders
Making beautiful traps
To catch their next meal
And take afternoon naps.

S is for Symmetry
Covered in fog
Looking like age rings
Inside a log.

S is for Sunlight
Glistening on dew
Turning the mundane
To something fresh and new.

Changes

First day of Preschool 2009. Danny was so excited to start school again this year. That's a far cry from the reluctant daily school boy of 08-09. The only reluctance he showed today was for Mom's incessant photo-snapping. "I don't like pictures!" And who can blame him? It's not like they have any meaning to him.

Ready to make a break at the slightest sign of
weakness from the photographer.

I have never been prouder of my little man than I have been in the last few weeks. He has been through major changes that would have any normal 4 year old reeling. Our Wonder Sitter quit suddenly the first week of August. She has watched Danny since he was 4 months old. She has aided for him at preschool for the past two years. I think her dog, Izzy, is his best friend.

Making his way to school
from the parking lot.

Yet, Danny has risen to the occasion. I was prepared for regression. For more potty training "accidents" and refusal to comply with tasks he associates with Wonder Sitter. Boy, was I mistaken!

A recurring issue for our family has been Danny's refusal to do things at home that he does readily for the Wonder Sitter and others when away from us. Things like use his cane or a fork and spoon (not interchangeably). A biggie for me has been the potty training issue. For well over a year now he has been fully trained away from home but the moment he's home it's as if he's never heard of a toilet. I have been at wit's end trying everything I could think of to rectify the situation. Low and behold, Daddy-O and I just realized that Danny hasn't had an accident since Wonder Sitter quit.

I don't know what to think of that. I don't want to read too much into it or I'll make myself crazy.

Using his cane like a pro.

It's a good thing he doesn't need to see where he's going...
because he really needs a haircut.

He also doesn't shut himself away in his room listening to music for hours as soon as he gets home for the day anymore. His scripting (repetitive phrases and conversations) has actually morphed into real conversation and age-appropriate pretend play. Most of the symptoms of autism that he was driving us crazy with are gone. In fact, two nights ago I switched up or bedtime routine without notice. Instead of asking him what music he wanted to listen to I sang the question in a baritone operatic sort of voice. Without skipping a beat, Danny answered me in the same sing-song style; engaging in a varied back & forth for a good 10 minutes. No repetition. No mimicking. No autism in sight.

Danny with his awesome VI Instructor, Marlene & Eileen,
checking out the play kitchen.

And he has taken to his new daycare like a duck to water. He is the oldest one there. He's never been the oldest before... I think he loves it.

Circle Time where we meet all our new friends
for the first time.

All of this just goes to reinforce that change isn't always bad and that God gives us what we need not necessarily what we think we want.

That's A New One.

We went to the fair Saturday Night. Danny was all fired up to ride the Ferris Wheel so he and I went on ahead of Ben and Daddy-O who were looking through the buildings.

I am so very proud of Danny. He doesn't always want to use his cane. Maybe he realizes it marks him as handicapped. Maybe he's just naturally lazy. Or maybe he's just four. Whatever. It doesn't really matter because on Saturday night he was doing an excellent job of it. He points his index finger down the cane and sweeps just like Kevin taught him. And he hardly ever lifts his cane off the ground. How many four year olds do you know that wouldn't swing a big stick every which way if given a chance?

So, there we were, weaving our way through the thickening crowd of Saturday Night fair-goers, when a small group of girls walked by in the opposite direction. They were about 7 or 8, giggling and falling into each other as they walked by. Danny's cane caught one girl's eye as she passed. She held up her friends. Their heads came together, then glanced our way; they backtracked the three steps we'd managed to progress.

"Did he win that?"

"Huh? Win what?" I thought.

She nodded her head towards Danny's cane.

"Oh..." Teehee. What kind of carny booth gives away canes????

Just because I can

There are a few perks to having a blind son. One of them is that I can actually make socially awkward jokes about blindness and get away with it. And don't think I don't make use of that one at EVERY OPPORTUNITY.

My favorite, however, is Danny's handicapped parking placard. Oh, the joy of preferred parking! Even through the shock of new diagnosis, that magical blue placard shone in our future like a bright silver lining.

I remember bringing it up on the car ride home from Children's Hospital Los Angeles that horrible, awful June in 2005 when we first found out Danny would never see. At some point it dawned on me that he (we) would qualify for the coveted handicapped parking. I swear I held on to that thought like a life preserver for the longest time. The single bright spot in a very dark future.

Huh. In hindsight I can see how desperate I was for anything positive about our news. In reality, however, our lives with Danny are far from bleak or dismal. He quite literally lights up a room with his presence. Of course, my fear and desperation in no way diminishes the awesomeness of my recently acquired placard. 'Tis truly spectacular!


We watched Blindsight as a family last night. If you are into documentaries or are just looking for something to make you feel like you should never complain again, this is the movie for you. What an amazing group of kids!

Blindsight follows a group of Tibetan teenagers on their journey to climb a mountain in the shadow of Everest. As a parent of a blind child, wow! I only hope for my son half that much freedom and adventurousness in his lifetime. Also, I was mortified by the treatment that blind people receive in Tibet. Save a worm. Squash a blind child's spirit! Bah! Essentially, they believe the blind person must have done something horrible in their past life to be saddled with blindness in this. One old woman was quoted as saying to a blind teenager who got in her way that he "deserved to eat his father's corpse!" And people say American's lack compassion.

Otherwise a stellar movie. A must see. And, it is completely adapted for the VI.

"You FOUND me!"

My 3 year search is over! I'm done pounding the pavement, er, telephone lines, every year in hopes of finding some benevolent entity locally to help make Beeper Eggs.

This time of year my Mother Feathers always begin ruffling over the normal kid things that Danny misses out on because of his blindness. Seeing the riot of color that are spring flowers calling to be tromped on or picking a haphazard array of beautiful weeds for Mommy to place in the window sill. Running across an open field. Searching the grass, under bushes and in low tree branches for the ever-elusive Easter eggs.

Mostly the Easter egg hunting, though. It's a purely childhood delight the likes of which Danny has never truly known. Every year we have a big hunt at VaVa's house. Danny dutifully participates without ever "getting" what's going on. I imagine in his child's mind he is being led on a fast stroll through the yard to the music of his cousins' running feet and squeals of delight while being urged to "look over here" or "oh, see what we've found" and a plastic egg is dropped in his basket.

Usually he is excited. Sometimes overwhelmed. Very typical of his age even if the entire experience is not. But there is never the understanding of our true charter: the discovering and devouring of chocolate and sugary goodies hidden in stealth by the Easter Bunny.

Well, this year, my friends, will be different for my son. This year a company (Quaps, I think) has mass marketed the solution to the blind child's Easter Egg Hunt dilemna! They are called the Hide 'em & Find 'em Eggs.

Aren't they cute??? They are quite hi-tech. You hide them and push the little button. For the next 30 minutes they will call out 5 different phrases and 3 different sound effects including: "I'm hiding," and "I'm over here!" Best of all, when you open the little egg, a bunny or a chick pipes up and says, "You FOUND me!"

I am all atwitter with anticipation of this Easter. Family, ham, potatoe salad, an Easter egg hunt and a small slice of normalcy.

Please tell me I'm not alone...

I like to think my boys are intelligent. Certainly above average, anyway. Danny particularly. Therefore, I can only assume all the issues we've been having with potty training must be sight related. Please, let there be a logical excuse for the ridiculousness that has taken place inside our bathroom in the last year...

Danny has been steadfast in his resistance toward potty training... at home. At school and the WonderSitter's house he has been, of course, accident free. We were not so lucky at home. In fact, just two weeks ago, he had gone through every pair of underpants he owned between Friday afternoon and Sunday morning.

There have been lots of problems throughout the process that we've dealt with one at a time: his inability to run to the bathroom at will; his tendency to stand wherever he is and yell for us to come take him to the bathroom; his inability to comprehend the need to "tuck" when seated so as not to pee all over the bathroom and his pants and his severe dislike of having his rear end wiped.

Well, we finally got through most of them or at least found a work around... But the tucking issue has had me stymied. I had tried having him stand to pee but he likes to refer to all bathroom actions as "peeing" which can cause a problem if one is standing. So we had sort of given it up from all the confusion. However, last weekend, my mother-in-law somehow breached the communication gap and in a few short hours had him peeing vertically like a man is supposed to a woman wishes she could. He's been very, very proud of himself and hasn't had an accident since.

Until tonight.

About 30 minutes after he'd gone to bed tonight he called out, as usual. Sigh. He had to go pee. So off we trot to the bathroom across the hall. He lifts the toilet seat. I stand behind him and help him pull down his PJ bottoms and overnight diaper. Then he leans forward to rest his thighs on the toilet bowl. "And what comes next?", I prompt, watching for the beginning trickle.

Nothing.

Grunt.

Uh-oh.

I leaned back and looked down. "Danny! You don't poop standing up!" Too late. "Yes. I want to!"

What a mess that turned out to be. Gah!

Sticks and stones...

I witnessed Danny being made fun of for the first time yesterday. I don't even know if "made fun of" is really the right term for it. He was called a name.

Blindy.

Sounds harsh, right? It really wasn't such a big deal at the time. The name caller was my sister's 7 year old stepson. He's got older brothers that aren't the best influences and doesn't get to spend much time with our families. But still.

I don't really even think he was meaning to call Danny a name. Maybe more like a nickname or something... It really didn't seem mean-spirited. He just walked in and said, "Hey, Blindy." In fact, he was so nonchalant about it that it took me a few beats for his words to sink in. His father had already reprimanded him by that time. But still.

Danny, being true to form, took it all in stride and asked to be taken to the kitchen. On the way he ran on in his own third-person commentary saying, "...He can't see. You know, his eyes are broken." But still.

Even though it wasn't a big issue then, it feels like a big issue now. Another child took a poke at Danny's most vulnerable spot with no thought and absolutely no consideration for his feelings.

He's only three. What will it be like when he's 7... or 10, or 15? Will those unthinking words from his unenlightened peers continue to roll off Danny's back like so many water droplets? Or will he bear the scabs and scars inside where the world cannot see?

Of course, he will be carrying a big stick (cane)... perhaps others should learn to speak softly...

"A Capella"

is Danny's newest word. I'm not sure where he heard it but he was very frustrated for a full day because the sitter didn't realize what he was saying. Of course he was pronouncing it "a cambella". And at first he thought it was the name of a song so he kept saying, "I want to sing A Cambella."

The sitter thought he was just making up words but the tempo of the word was to familiar. When I asked if he meant "a capella" he just about spun himself into the ground in excitement. Finally, someone understood him!

Now all we do is sing a capella, which he'll tell you is songs without music. His current a capella favorite is Skidamarink, only he gives it a little Danny twist.

I love you in the morning
and in the afternoon.
I love you in the evening
And under the balloon.

Oh, skidamarinky dinky dink
skidamarinky doo
I love you.
'Deed I do. Yes, I do.

Is he not just the cutest little guy? Sometimes I just want to squish him because I can't stand the cuteness another minute!



In other news...

I attempted to get Danny's baseline hearing test done today. I don't know if I've mentioned this before, but there is almost 100% certainty that he will suffer mild to profound hearing loss at some point due to his Norrie's Disease. At any rate, I took him in to get his hearing tested but he was far too enamoured with listening to the new sounds through the little ear buds in his ears to bother with putting the lego blocks into the fireman hat. No results there. We were able to get results from one test that esentially measures the amount of sound which escapes from his ear after he hears it. That test he passed with flying colors. Which means he could only have the mildest of hearing loss if any at all.

So... Yeah!

Of Childhood Rituals...

I got Danny's pony pictures back from the preschool today. They are adorable. Is there ever a bad Pony Picture, though? Of course, I had to pull out Ben's pony pictures from when he was 3 years old. They look nothing alike.

Ben was a smiling and blond - the quintessential Good Guy. Danny is solemn and dark. Not so much the Bad Guy as the Bad Boy. The cloudiness in his eyes gives them a smoldering, smokey look... if you can overlook the one that's looking the wrong way, that is.

Ben on Nugget 2003 / Danny on Cupcake 2008

Hopalong Cassidy / Black Bart

I'm also struck by how sad Danny looks. And also, how good looking both my boys are (not that I'm biased or anything) even though they look completely different.

Am I the only Mom who sees a good picture of her kid and loves them that much more for it? Maybe I love them more in pictures than in person? I kid, of course. But they sure are quieter in photos...

Two hospitals, 295 miles apart, in less than 4 hours. Beat that!

4 am. That's when my alarm went off this morning. 45 minutes later Danny and I were on the road to Bakersfield to see Dr. Tawansy, his retinal specialist. We don't go often (once or twice a year) to the high risk / ROP clinic Dr. Tawansy holds at Kern Medical Center. We don't really need to. But lately I've noticed that Danny's left eye seems to be shrinking back into his head. So, off we trudged to the valley.

It's weird to sit in a tiny room surrounded by non-English speaking mothers and their micro-preemies with my ginormous 3 year old who weighed in at a respectable 7lb 3oz when born 5 weeks early. I feel like a poser.

It was mostly good news today. They eye drops I stopped over a year ago without asking permission are no longer necessary. In fact, The good doctor said I probably did the right thing since he obviously doesn't need them. Ha! Take that Daddy-O!

The Incredible Shrinking Eye, however, is every bit the harbinger of possible bad things to come that it would seem to be. It seems his eyes aren't producing/generating - whatever eyes do - enough pressure to maintain proper eye size. This is fairly typical and to be expected. Unfortunately, if his eye shrinks below 50% of it's normal size it can start affecting the growth of his eye socket. Which would require the use of schleral shells to help act as a "place holder" for the eye socket. They are sort of half-prosthetic eyes that fit over the real eye. Sound really uncomfortable, doesn't it? Well, we'll follow up on that later.

But here is the shocking news. Danny has light perception.

Did you see how calmly I said that? Like it's no big deal? Yeah. No big deal. Except Danny can see something! Even if it is only light. It's more than we ever thought he could see. More than we thought he ever would see. Can you see my smile from there?

When Dr. Tawansy shined his light in Danny's eye, D squinched his eye shut, shied his head away and brought his hand up to block the source of the light. And the doctor had never touched him. But he did nonchalantly confirm the light perception when I mentioned it. Holy cow!

We got home at 1:30. Just in time for Ben to call from school crying because he'd fallen on his injured wrist again while playing soccer at school. sigh

I left Danny at the sitters, picked Ben up from school and headed to my second hospital in four hours. So much for working a few hours today.

Turns out Ben has a Buckle Fracture in his wrist. It's when the outside of the bone buckles but doesn't break. Like a green tree branch when you bend it.


They put a soft cast on it and we go to see an orthopedic doctor tomorrow or the next day for a cast. He may not be able to play soccer which starts this week (and which Daddy-O is coaching).


I finally got home for the day at 4 pm.

For anyone keeping track, that was 11 hours of driving/waiting room time, 295 miles, 2 hospitals, 1 splint and 1 medical breakthrough all in one day.

I'm pooped!

Adaptation

Do you know who Ben Underwood is? We found out about him in 2006 when he did this interview with CBS News. As parents of a blind child you can imagine how astounded and encouraged we were.

At any rate, Ben Underwood had retinoblastoma when he was 2 and lost his eyes. Since, he has miraculously taught himself to echolocate by making a series of clicking noises like a dolphin. The videos of him rollerblading & playing basketball are nothing short of amazing.

I was very sad to catch the last bit of a news story on him Friday night that mentioned he is suffering a recurrence of his cancer. He is only 16 years old.

~~~~~~~~~~~

D is just beginning to show signs of echolocating. As I watch him manuver throughout the house he occasionally stomps his foot on the floor to "see" where he is. Even without the stomping he will come close to a wall or table, hesitate, and turn exactly parallel to it and continue walking. I used to have to prompt him to step down when there was a step coming up. Now he takes his cue from his environment. He has already anticipated the stair because I've taken the step already.

I find it amazing that at not quite 3 years old he has begun adapting to his environment in ways that we could never imagine.

Pimp My Preschool

D's first IEP (Individual Education Program) is next Thursday. When he turns 3 next month he transitions from the County's Early Intervention Program to the School District's for disability services. Our last few weeks have been quite busy with joint meetings between the County & District, exiting reviews & reports from County, initial observations from District personnel, etc. Plus, the School District is displaying their free preschool programs artfully before us like cat house wares.

District Pimp: "Would our PEEP program please you? She is nice to look at, no? Her language, it is not very good but she has excellent self-help skills.", wink, wink.

Skeptical Parents: "But D really loves a good conversation.", we complain. "He's pretty much all audio being blind and all. Isn't PEEP focused mostly on children with a language deficit?"

District Pimp: "Ah, yes, it is true. But, D, he could be a role model! A skilled man! Who does not want that for their son? And our girls could teach D a thing or two about taking care of himself.", more winking. "Plus, he can have an hour gratis each and every Monday and Wednesday from 12:30 to 1:30 while all the other 3 year olds are eating lunch."

District Pimp: "Or perhaps you would prefer CJ? She has most recently expanded her repertoire to include our more, er, inexperienced clientele."

Skeptical Parents: "Isn't that the school with mostly autistic and cerebral palsy kids? I've heard from some of our therapists that generally the kids there have other issues also and the social and verbal abilities are not the greatest. That's the main reason we want D in school is to socialize him."

District Pimp: "Well, um, yes. However, CJ does provide regular, er, group activities with the class next door for those clients who need added, um, stimulation."

~~~~~~~~~~~~~

The District is required to provide all vision impaired kids with a free and appropriate education beginning at age 3. "Appropriate", of course, is the sticking point. I don't feel that a preschool that requires a 40 MINUTE COMMUTE by bus each way, only to be surrounded by mentally handicapped, non to low verbal and low social children to be an appropriate place for a blind child who is ALL AUDIO and HIGHLY VERBAL and NOT MENTALLY HANDICAPPED but does need help in the social peer arena - even if it is free. Nor do I think a one hour class with a focus on speech therapy is appropriate for a 3 year old who has language skills in the 4-5 year old range. Again, even if it is free. Not even as a supplement to the preschool he is attending now.
I just don't feel like we need to let them off the hook by allowing them to place him in their programs just because they are there. They. Are. Not. Appropriate.

That being said, our Governor is cutting our school budgets 10% statewide. I also don't feel we need to ask them to pay for D's private preschool. We would be sending him there anyway if he was sighted and they have much greater needs for what limited money they have. What we will ask them for, however, is a paid aide for his class, some training for his preschool teachers to help them bring D into the class better, and perhaps things like special appliances (beeping eggs, some of those little keychain memo recorders, etc) so he can participate in special school activities like Easter Egg Hunts, and the circle time activities of "guess who's picture this is?".

Any of you who have experience with IEPs... do you have any other suggestions?
Here is the uptake of his reviews:

As I said before, language skills mostly in the 4-5 yr range. My boys a talker. Too much so sometimes! Just the other day he said, "Dad, I can't find my f*ckin' alphabet ball." I guess it's time for Mommy to check her potty mouth.

He'll also say "God!" when he's really frustrated. I think this bothers me more than the other. Seems like I'm constantly telling him not to say that. Then he'll say, "But I want to say 'God'."

He's right at age level for his fine motor skills with the exception of those that require vision.

He's beyond age level for gross motor but they don't have a questionnaire that goes beyond in his areas of expertise (stamina, agility, dexterity). He can climb trees, walk with his cane for nearly half a mile without tiring, etc.

The only area he really lacks in is peer socialization. That's my next priority!!!
We did make what I consider to be significant progress this week, however. He has actually mentioned a girl from his class at home - all week. Just her name, over and over, but it's a start - and a first. "Did you say 'Tiana'?", he asks.

No I didn't. But I am so, so glad you did.

The sun.

As I carried D out of his bedroom the other morning we paused in front of the wall heater to warm ourselves.

"Oooh. Can you feel da sun?", he asked.

I always do. I always do.

Bargain debasement pricing

Hello. My name is Stella and I am a Bargain Hunter. Sometimes I buy things just because the deal is too good to pass up. But then, I'm also not afraid to spend money, if that makes any sense what so ever. Of course, sometimes I don't get the things I want because I just won't pay that kind of money for them - if they are for me, that is. I guess I don't mind spending lots on others... just not myself. But my ultimate quest is for the supreme bargain. This weekend I found it.

I've been searching for a bunk bed for B. With this in mind I have been watching Craigslist.com and our local freecycle because I can't afford to pay the ridiculous amounts of money that the industry wants for bunk beds. On Saturday I found an ad for a loft bed that looked really nice for $100. Not only is it a full size loft bed but also has 6 drawers, a computer desk, twin trundle and hidden storage. Hidden storage! Say it ain't so! And it was in my own town. Gotta love it, right? So, a little email here. A little email there. And on Monday at 10:00 I, and presumably others, met at the loft bed's home for a viewing and "best offering".

If there's one thing I can't stand, it's competition. So, I arrived a tad early. I thought about blatantly eliciting sympathy with D and his blindness. I am a bad, bad, mom. But, before you think too poorly of me let me explain. By "blatantly" I mean mentioning that D is blind - possibly before we arrive. Maybe working it into the conversation somehow to give us an edge over the competition. And, I said I thought about it. I didn't actually do it. I did have to bring the boys with me to look at the bed but that couldn't be helped. I did, however, leave D's cane in the car. At least until he demanded it at the driveway, at which point he began a temper tantrum and I gave in to the cane since he is supposed to use it anyway, and felt exonerated if a tad guilty for my previous thoughts.

Long story short. We got the bed. It's awesome. It only cost me $100. Not a word was said about D except that he was mad because he wanted to go for a walk and NOT look at a bed (which was completely truthful). I looked the bed up on Amazon when I got home just to see what it might retail for... Get this... $1165 Holy Crap! How's that for bargain shopping???

And all that hidden storage in the back... That's actually a closet. It has a closet rod and everything. Squee! B thinks he's going to be able to hide there and put his stuff in it. Ha! Mama has plans for that area! The bed is up and the boy is happy! Easily my best score! But I am still a bit plagued by the exploiting thoughts I had. I mean, really! I suck!

What's the best bargain you've ever gotten?

Differently Abled Resources

Happy Friday, everyone. Is it just me or has this week been dragging on and on? Alright. Just me then. Fine.

Well, I won't take up too much of your time. I just wanted to draw some attention to the new links over to the right. Yes. Right over there. The ones titled Differently Abled Resources. I've been collecting these sites for 2 and a half years now and have found them to be very useful. There are some others but I think they probably have a far less universal appeal. There are some toy sites like Beyond Play and some others like Seedlings which is a great, inexpensive place to get Brailled Children's books. Not all of these sites are just for the vision impaired, either. Many service other disabilities as well.

And if anyone is interested in gift ideas for blind toddlers just let me know. I have a ton of ideas!!!

In and out and up and down and uh oh

I've been solo parenting all week while Daddy-O enjoys the solitude of fly fishing on the Trinity River. I must say it's been going remarkably well considering half the state is on fire (thankfully not the half Daddy-O is in) and the smoke induced in yours truly an asthma attack / allergic reaction the likes of which I've never experienced before. Otherwise, the kids have been great and things are going well.

Well, there was this one thing. After I put D to bed the other night he began his nightly Party In My Crib routine. This usually involves a lot of jumping and screaming in glee and the throwing of bottles across the room. After a few minutes I heard his door knob turn and his sweet little voice say "Open da door." as he stepped out into the hall. I had forgotten to put the side of his crib up and he had climbed out of his crib. !!! WTF? So part of me was all proud of my little blind boy for making it out of his crib, clear across his room to his door, opening it & walking to the living room without a hitch. The other part of me was screaming all sorts of denials that I'm not ready for a big boy bed or dealing with a toddler that can't be contained when & where I wish!!! Ahhhhhhh! My life is over!

Then tonight it got worse. Tonight the boys took a shower together as usual. B was being helpful and dried D off when they got out then put him in his room. I heard D jumping on his trampoline while I was finishing up an email. Pretty soon D was calling out to me those magic words every parent loves to hear, "Mama, I got poopies." When I walked in his room my heart sank. I freaked out. I didn't quite know what had happened. There D was, standing buck naked in his crib, with the side down. And he had poopies. Lots of poopies. And he'd been jumping alright but not on his trampoline.

Of course, my first reaction was to get mad at B. But he swears he didn't put him in there. D must have climbed into his crib. I ask you, what kind of sick child climbs into his crib? Then poops? Then jumps in it and squishes it between his freshly showered toes and all over his laundered blankets? And just for good measure (and I'm guessing because he didn't like how it felt between his toes) wipes it on the inside wall of is crib and lets if fall down between the mattress & the frame?

And the more important question here is how am I going to make Daddy-O make it up to me when he finally gets home?

The Good, the bad & the awesome

There was a time in my life when being right was the only thing that mattered to me. Nowadays, I am afraid to be right more often than not. How ironic. Well, yesterday was no exception.

After a year. YES, a whole year, I managed to get D back to see his eye specialist in Bakersfield. We were supposed to go back last January but I had my DIEP flap surgery & then weekly trips to UCLA for post-op follow-ups. Then implant expansion visits - all of which had to take place on Thursdays. Thursdays are the only days that Dr. Tawansy (D's specialist) does clinics in Bakersfield). You can see why it just never worked out. Plus D's eyes seemed so quiet and weren't giving him any problems... that is, until a month or so ago.

About 6 weeks ago he began pressing his left eye quite a bit and pulling on his eye lashes. The eye pressing is pretty common for vision impaired kids. Press on your own eyes. Go ahead. Do it right now. See the spots and lights? Well blind kids can see them too. And that's the only thing they can see. So you can understand the attraction in eye pressing for them. It can become almost like a masturbation thing for them. (NOTE: this is my personal take on things not the official party line). So I wasn't so much worried about the eye poking / pressing but I had also noticed that his left eye had seemed to have shrunk a bit, quite a bit it by my estimation.

One of the major characteristics of Norrie's Disease is small eyes. But at times I think I can see beyond the corner of D's eyelid to behind his eye. I'm no expert here, but I don't really think you're supposed to be able to do that. Think of your eyes as place holders for your eye sockets. If your eyes are too small the eye sockets don't grow properly and thus your skull can grow improperly also. Eventually, your skull can become misshapen causing all sorts of other issues. One of the things they do to stop this is make schleral shells. So I made it a priority to take him in.

Well, thankfully, I was wrong. His eyes (both of them, though the left a bit more than the right) have shrunk all right. Not near as much as I feared. And they are still quiet. By "quiet" Dr. Tawansy means that the pressure in his eyes caused from scar tissue built up inside is not high. There is no inflamation or anything else wrong. He is not concerned with his sockets so there is no reason for us to consider shells, though the Dr did say they may keep his fingers out of his eyes. And he took D off his meds for glaucoma. Ha! All in all, a very, very good appointment. And best of all, Dr. Tawansy is very interested in going to the Norrie's conference in Boston in July 08. Yeah!

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In other not so good news, I found out last night that an acquaintance of mine has had a recurrence of her breast cancer. She is the first person I've personally known with breast cancer. I remember her losing her hair (she's a hairdresser - how tortuous for her), having 2 lumpectomies because they didn't get it all the first time and finally a mastectomy for the same reason. She had the TRAM Flap reconstruction surgery which went very badly for her and her entire abdomen herniated. But since then, maybe 3 years ago, she's been well.

In December she was complaining of needing glasses so she made an appointment with the eye doctor who found a tumor behind her eye. It was metastasized breast cancer. They did radiation and chemo and now the tumor is gone. But as we know... once cancer metastasizes it is incurable. I feel sick for her. She was like me. She was open about her cancer. She would talk freely about it. Now, she doesn't speak of it at all. She is trying to come to grips with the knowledge that she will die with this disease and from it. What savings she has will be spent on her treatment of it and her healthy days will be spent waiting for it's return. She has told her doctors that she does not want to know how much time they think she has. She only wants to know what treatments they think she needs and what the side effects will be. Then she will decide whether or not she will do it. That is very much what I would do, I think.

She is living my biggest fear. What do you say to people when you have metastatic disease and they ask how your treatment is going? Do you say something like, "fine... today." or "good. But I'll still die." No wonder she doesn't want to talk about it. What is there really to say? At that point isn't it best to just live your life for every moment you can suck out of it?

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Enough depression. Better news. Here's a focalin update on B. Today I took him to school. I was still talking to another mom outside when his class walked by in a line. He was so focused on what he was doing (paying attention to the teacher !!!) that he didn't even see me standing 2 feet from him. What a different child he is now. He is incredible!

Once upon a time

It seems that Inflammatory Breast Cancer is getting a lot of play these days, what with WhyMommy's campaign over at Toddler Planet and all. I really wish I had been introduced to the whole blogging world before I was diagnosed for many reasons. First, it would have given me lots of reading material during those l-o-n-g days otherwise spent in front of the tv. Also, because it would have been, oh, so theraputic to write about the whole process. And also, mostly, because I wouldn't have felt so alone. And since I have a whole slew of people, well, three - three people who swing by here every now and again to looky-loo at the IBC survivor freak show I thought I might tell my story. So here goes...

Once upon a time, in a sewerless small town on the left hand side of America there lived a mother, a father, and a son. Mommy and Daddy-O had been living happily with thier son B for 3 years but wanted another baby with whom to share their life. But sadly, it seemed babies were not as easy to come by as all that. Just when all the family was giving up hope the happy news of a new baby was discovered! Mommy and Daddy-O and B were thrilled!

D was born a bit on the early side as Mommy said he would be. Mommy is very smart about these things so people should learn to listen to her. Because he was still so young, only 35 weeks, but still pretty big, 7 lbs 3 oz, he had to stay in the NICU for a few weeks and learn to eat. It was a very frustrating time for B - being a big brother but not having a little brother to show off around and all that fun stuff he'd been looking forward to for so long. That part kind of sucked.

Then things got better. D got to come home when he was 3 weeks old. At his six week appointment Mommy asked the doctor when he would start focusing. She was told alot of stuff about adjusted age and such which all meant, "not yet". Then things got worse. Four days after D's six week appointment his right eye clouded over.

Fast-forward through an emergency trip to Children's Hospital Los Angeles, several references to "masses" and "blastomas", an eye ultrasound and an Exam Under Anesthesia (EUA) and we find Daddy-O dazedly listening to Dr. Tawansy tell him how D's retina's are detatched and are causing some sort of very bad glaucoma-like pressure build-up in his eyes so he had to remove his lenses... The rest is a blur and a distant murmur as Mommy wanders the room looking at cross-section eye diagrams through unquenchable tears wondering how D will ever appreciate the brightly colored dancing bears on his bedroom walls when he'll never, ever see.

Slowly over the next several months the little family adjusted to it's newest member. As with everything else, B, Daddy-O and Mommy were up for the challenge and opportunity D's blindness provided. Mommy and Daddy-O were awed that God had placed so much faith in them and felt honor-bound to not let Him down.

In September of 2005, when D was 5 months old, Mommy went back to work. Also, around this time she began limiting D's play time with his booby friends. This upset D so much that he decided he hated one of his booby friends. In fact, he hated Right Booby so much that he refused outright to associate with her at all. He would scream and arch his little back if Right Booby so much as pointed her little nipple in his general direction. Mommy chalked this up to a Blind-Boy Downfall, that is, positional aversion, which can be very common and unexplainable in vision impaired children. Also, Right Booby was feeling very sad, and lonely and engorged about now.

Soon September became October and D and the Booby girls quit playing together entirely. But poor Right Booby was never quite right again after her rejection. She always felt engorged and bloaty and generally cranky for the effort. Slowly it seemed that the little soft spot for D inside Right Booby just hardened up into a rock. It was a rock the size of Mommy's fist. This kind of tripped Mommy out. Mommy started asking her other Mommy friends about it and many of them assured her that they too had felt rocks in their girls on one side or the other after weaning... but they had gone away after a few weeks. So, not being in any pain at all, Mommy decided to wait a few weeks.

Enter the Holidays: Thanksgiving with all it's office closures and vacations. Also enter Mommy's first cycle since having a baby. In all the frosty coldness of late fall the only thing growing is the rock in Right Booby. Mommy decides to see her doctor. After much debate with the nurse about how she was NOT comfortable waiting until December 23rd to be seen she was worked in the next week - December 12th, 2005. Soon there was a mamogram on the 14th (showing nothing followed by an ultrasound which showed nothing), a surgical consultation with a fine needle biopsy (VERY mean procedure) which was inconclusive, followed by a core needle biopsy (not too bad at all), followed by an unbearable 24 hour wait for results. On December 22, 2005, she was diagnosed with stage IIIb Inflamatory Breast Cancer. Her tumor was 9+ cm.

Whew! I'm pooped just writing about the journey to diagnosis. I guess the thing I want people to take away from this part of my story is this... I never had a lump. I had a thickness that solidified. Even though it's IBC, my breast was never red and I never had any skin changes until the very, very last. And, folks, my tumor was HUGE!

I'll finish the story tomorrow.

Wanted: Loving Family

I am haunted. I post on a yahoo group for parents of blind and visually impaired kids. One of them must have an affiliation with Rainbowkids because they posted a link to this adorable little boy that needs a loving home.

JW is 2.5 years old and has congenital glaucoma. He's blind. Ugh. When I imagine my own sweet D being raised in a rehabilitation facility (I don't even know what that means in the part of the world that JW comes from) I have to fight back the tears. To be all alone in a world that you can't see. No single person to call your own - no one that you know will love you no matter your flaw - that will be there for you regardless. To have to vie for the attentions of a room mother with who knows how many other children. It just breaks my heart.

Little JW only speaks about 5 words with meaning. My D, 6 months younger, probably speaks over 70 (I wrote down 67 in just 2 minutes of thinking). I can't help but wonder if little JW is so much less verbal because he doesn't get talked to all that much. How lonely for him.

I look around our house at the chest and many, many baskets of toys picked out to offer D the most stimulation possible... puzzles that make noise when you put the piece in, books that sing songs, electronic alphabet toys of every shape & size, toys with different textures, vehicles of all sorts to encourage mobility, a trampoline and a crib - both for jumping pleasure.... and braille books by the dozens, not to mention books on cd... Well. I feel both grateful and undeserving.

Why is our D, by benefit of birth country and parentage, being given such an advantage over JW? I cringe when I think of where JW will be in 20 years if he is not adopted. I long to adopt him myself. I've not been able to stop thinking about him. My arms ache to hold him with love and show him everything the world has to offer. I long to give D a brother that will always have a bond with him no one else will understand. I just don't think that the fragile tranquility of my house could withstand another major storm right now. I guess I've finally found something that I really resent about having cancer.