My side of eyesight

In the beginning....

On a stupid-hot August morning (I think the temperature actually was one hundred stupidity degrees) I gave birth to my 1st little boy.  Everybody was excited, thrilled, grandpa Jim even passed out and had a bloody nose! It was wonderful.  Then...we all noticed in the days following his birth, his eyes were moving and moving fast.  Odd, but heck we never had babies before so I didn't know what to think.  At the first check up, and essentially all the next gazillion checkups for the first four months, we asked the doc.  "Man, this just isn't normal, whats up with his eyes".  For which we recieved the same answer time and time again, his muscles are developing and they just aren't strong enough.  He will outgrow it, Im sure of it.  By about 4 months, I said look, I see all these other 4-month old children running around (clearly 4 month olds don't run anywhere and I based this statistic off of 2 other children I had seen at Dillons earlier that week) and their eyes are just fine.  You need to send him to an eye specialist.  And so he did......

You said WHAT??
The very next day we had an appointment with one of the local optometrists.  Getting Mason all gussied up and just really ready to receive the same schpill we always got, his muscles are just weak and he is fine, stop worrying, your new parents.  Ummm no.  It didn't really go like that at all.  First off, he had the bed-side manors of a goat.  (Clearly I would have liked him more if he walked on all fours and was eating grass).  And he handled Mason like he was an atomic bomb that was going to explode at any moment, clearly not comfortable with children at all.  Then followed the two words, I have yet to free my mind of, "He's blind".  Before I could decide whether I was going to punch him, puke on his smelly goat loafers, or throw some sort of medical equipment at him, he was shoving Mason back in my arms and left the room!  It was hands-down the most astonishing thing I have ever encountered as a parent.  Then the nurse comes and and says, well I think thats all we need from ya, just check out at the front desk.  To which I screamed, "Oh Yeah....well your clothes are ugly" and stormed out of the room.  Clearly shock had set in.

Big Fat Blur....
The following weeks are a little foggy as I walked around in my state of shock.  Not only was I a new mom, but a new mom to a blind child.  Ugh, what had I gotten myself into!  Of course, I was not okay with the diagnosis Dr. Goat had given us, so I had to get a third opinion.  Obviously someone who could physicially hold my child and didn't have an "I hate children" bumper sticker on his car.  We were referred to Childrens Mercy Hospital in Kansas City.  But of course we had to wait two weeks before being seen. For two entire weeks, I lived, dreamed, obessed and ate the word blind.  I hated that word, it made my stomach hurt.  I think this was around the time someone should have diagnosed me with Tourrette's, as I went completely bat-shit crazy and was just plain obscene.  One evening I had to get out, so I went and did some grocery shopping.  I walked around Dillon's tossing this and that in the cart, not really following any list other than the pretty packages.  Upon checking out, the bagger asked if I wanted paper or plastic.  Apparently he had asked me this several times as by the time I heard him, he was practically screaming it and everybody was oogling.  I barked BLIND, MY KID'S BLIND.  Umm excuse me maam, he calmly repeated, this time he was fully aware that I was a ticking time bomb, I just need to know what to put your groceries in, paper or plastic.  To this I retorted, "My son is blind, do you think I give two shits about what you wrap my groceries in?".   Of note, I did go back and apologize to this poor boy a few months later.  When I got home with my sacks of groceries, I was mentally spent.  As my husband unloads all the sacks, he looks at me, Umm honey, what are we going to eat for supper?  What do you mean, I just spent 65 dollars at Dillons, eat something.  It was at this point, I realized I had gotten 5 different gallons of ice cream, 2 bottles of Hershey syrup and a plethera of assorted peanuts and sprinkles.  Sigh...it was official, I was bat-shit crazy.  

Medical Mumbo Jumbo-

This doctor at least had a brain and some couthe.  After dilating my 5 month olds eyes and waiting for 30 minutes, we were finally given the diagnoses that has claimed all three of our children.  Oculocutaneous Albinism.  Oculo=eye, Cutaneous=Skin and Albinism=little or no pigment (color) in your hair, skin and eyes.  OCA1 (which is the form of albinism my children have) is inherited in an autosomal recessive maner.  Which means two copies of a gene mutation (any alteration in a gene from its natural state) must be passed down to the child, one from each parent.  We are called obligate heterozygotes (translates into perfectly asymptomatic people with screwed up genes that we passed down to our children). The odds of this happening to you is 1 in 17-20,000.  The chances of Masons siblings being  affected are 25% chance, 50% chance of being asymptomatic carriers and a 25% chance of being unaffected and not carriers.  However, we beat the odds, and all three of them are symptomatic carries.  Mason is OCA1B and Bryson and Jaxson are OCA1A. .....AND....Here was the beginning of life as we know it.

My Collection

A lot of people have collections.  Some collect stamps.  Some collect beanie babies.  Some collect toys.  ( I have a few grown-men friends who have a garage full of toys)  But for me, my greatest collection is people.  Now, I have tried collecting many things as a child.  I had a huge box of random, cool and fun pencils, trolls (one of my most favoritist things ever)and Barbies and Barbie-like accessories.  I also once, in 5th grade, tried to collect boys, but after about a month or two of that (like most collections do) it ran its course and I got bored. Clearly breaking each little boys heart (I'm sure of it).  :) 

But now as I sit and reflect, at my ripe old age of 30, I can honestly say that I have a great "collection" of people that I am proud to call my friends, companions, padres, mia familia!  I have a great assortment in this collection; first and foremost my husband and sister (to which in very different ways I would think to be my soul mates), but wonderful friends as well.  Single friends, couple friends, married friends w/kids, married couples w/o kids, and friends that I have had for many years.  I am very lucky to have such a wide assortment of people in my collection as I know I can turn to each and every one of them with different, sometimes meaningless issues and problems, and I know that I will be heard, and given wonderful (yet sometimes hard to hear) advice.   

I even have a handful of guy friends in my treasured box.  Guys who I merely just talk about music with (huge passion of mine), and guys that I know if I needed any help or had trouble would have my back and be there in a heartbeat.  (also without having their wives go bat-shit crazy on them) and for that, I am truly thankful. 

I wish I could stuff all my people in a little box and store you in my nightstand.  However, there is no room in there as another collection has taken up a mind of its own.  So, instead I keep you all safe and sound in my heart. As much as I would love to sit around and just play with my little collection all day(we all know what a drunken mess that would turn out to be), I cant.  Sometimes I go days without talking to, looking at or even playing with my collection.  But I have faith that all memebers of this unique group know that I love and cherish every second of them. 

As times change and people get older (emphasis on you all, as I refuse to get older), it is inevitable that my collection will surely change.  I would love to add more friends in my box and grow even more of a strong and sturdy base, but even if it stays just the same, I'd be just fine with that too.  ;)