Wednesday, August 31, 2011

All About Sydney...

Today I feel like my life was brought around full circle.  I have quite a few things I need to blather about and this is my blog, so I am doing it here, and you will read it, or you won't, and maybe just maybe, it can help you or someone you know.

In July of 2000, when I found out I was pregnant with Sydney, our lives changed so dramatically.  Not only were we adding another mouth to feed to our little family, but then I was sick and that itself brought so many issues.  I felt sick from jump.  Not morning-sickness sick but tired, exhausted really, having to take naps ALL day.  (Not so simple where you are raising a 2 year old boy and babysitting a 4 year old precocious girl).  I would complain to my doctor every month that I was tiiiiiiiiiiired, more tired than should be humanly possible.  No appetite, jaundiced, sickly looking, tiiiiiired and tiiiiiiiired. "You have a 2 year old boy, that's normal" they would say.  It wasn't.  Not normal at all.

I went for the big ultrasound in November, just before Thanksgiving if I remember correctly.  It the the day we were going to see our Sydney.  We *knew she was a girl, there was NEVER any other option in my mind.  Sydney, I just needed to see Sydney.  I remember lying on that table and the tech not saying much and when she did, it was like a bomb dropped. "You see this?  This isn't supposed to be here, and your baby isn't moving.  Go to the cafeteria and drink a Coke and come back at 1 and talk to the doctor".  Panic! What?  Something wrong with *my baby?  That only happens to *other people.  Not me.  So we did as we were told.  Awkward silence at the table at Tripler AMC.  This can't be happening, this can't be happening.

We went back up to talk to the doctor.  More ultrasound..."Hey!  Your baby briefly opened the legs...its a girl!" See...Sydney, I told you.  "Butttttttt, this dark line in her chest cavity isn't supposed to be here.  You need to come back on Friday so we can check it again.  And you're going to need an amniocentesis.  I think your baby has a CMV infection.  You're probably going to need to talk with the chaplain and make arrangements.  85% of kids born with CMV don't live til their first birthday and of that remaining 15%, 75% of those kids die by 5." Breath. "She's probably be born blind, deaf, CP, seizures, maybe Down's Syndrome, or Turner's Syndrome, it may not be all of those things but probably most of them.  You'll probably have to have her early.  Possibly by Christmas (even though she isn't due until the end of March) You should probably call your families.  Thanks, see ya Friday"  Wait what?  This is the happiest day, I'm having a girl, and I get princess crowns and ballet and make up and boys and shopping, and you are telling me my baby is gonna die?  What. The. FUCK?!?!

We drove back home, down H1 toward Mililani, and I tried to call my mom from the cell phone and couldn't do it.  My sole job was to be a wife and a mom and I was failing. I called my sister, who is the best researcher in the world.  "Donna, I need to know whats going to happen" and bless her heart, she looked.  And looked.  And looked.  And nothing.  Ever.  Bits and pieces here and there.  No one knew what I was talking about.  No one thought anything of it.

And you know how this story ends (or continues...) Sydney was born in February 2001, came home after 10 days in the hospital.  She's the perfect fit for our family.  She's quiet and doesn't talk back (cause she's deaf), she doesn't get into her brother things too often (she has CP and doesn't walk), she sometimes spends time in the hospital to get away from her brothers (seizures and feeding issues), but I wouldn't have it any other way.

I said at the start of this blog, that my life came full circle today.  I was combing the Sunday paper for coupons for Rachel today.  I pulled out the Parade magazine, like I do every week.  I flipped through, like every week.  And I stopped.  Because on page 15 was Janelle Greenlee...Health Hero.  My story is her story.  My life is her life.  My Sydney is her baby.  Read the article here!  Janelle is the CEO of STOP CMV, an organization dedicated to preventing the CMV infection in pregnant women.  You can find her website at STOP CMV.  Finally.  A place where I can find other moms and dads who have been or are being affected by CMV.  I can find children who are like Sydney.  I can find siblings like Nik and Timmy who have handicapped brothers and sisters.  I can share my experience.  I can reassure another scared mom that it will be ok.  It won't be normal, but you'll learn to redefine normal.

Full heart is happy. Check out Janelle's website or Like her on Facebook or both.  Support her.  Support me.  Support Sydney and the kids like her.  And thanks for reading.

Monday, August 22, 2011

First Day of....

Today was it...literally the first day of the rest of Timmy's life.  The first day of actual school...not play school, or anything like  Every day for the next 17 years of his life (if we count college...or time served, whatevs) he is going to go to school.  Wow, thats making me a little weepy. His teacher, Mrs. Fox, left present for all the parents on the kids desks.  There was a tissue and a cookie and a note. I was fine leaving him at school until I read the note...

The First Day
I gave you a little wink and a smile
As you entered my room today.
For I know how hard it is to leave
And know your child must stay.
You've been with him for four years now
And have been a loving guide.
But now, alas, the time has come
To leave him at my side.
Just know that as you drive away
And tears down your cheeks may flow,
I'll love him as I would my own
And help him learn and grow.
For as a parent, I too know
How quickly the years do pass.
For it, too,has been my turn
To take my child to class.
So please put your mind at ease
And cry those tears no more.
For I will love him and take him in
When you leave him at my door.

Great, now I am crying again.  Thats above and beyond...his teacher didn't need to give ME a gift.  Hell, I should give HER a gift.  Haaaaaaaaaaaave you met Timmy?  Hahaha.  

So this afternoon, I get to hug my little boy on the first day of the rest of his life.  And I guess come to the realization that he is growing up.  And I have one year to find a job!  ;-)

Here are the first day pics of my kiddos...


Sunday, August 21, 2011

Napoleon? Is that you?

As I sit here this morning, hanging up my mountain of clothes (yes Melissa Mocello...I broke the rules and did laundry today), I am listening to the sounds of Timmy and Nik fighting.  This is NOT an uncommon occurrence.  It usually involves Nikolas yelling STOP and Timmy screams, then Nik says SHUT UP then Timmy screams louder and rinse, lather, repeat.  This is the daily story of my life. 

So imagine my surprise this am when Timmy fought back.

Nik and Timmy: blah blah blah, pick pick pick, fight fight fight...
Timmy: NO!
Timmy: You mom makes you shut up...
Nik: Ok thats are DEAD!
Nik and Timmy: run run run, stomp stomp stomp, crash
Me: Hey!! Go to your rooms...NOW! And no more talking for the rest of the day!
Me: (downstairs by the laundry pile) hahahahahahaha your mom makes you shut up

Too much Napoleon Dynamite in my life...NAHHHHHH....

Saturday, August 13, 2011

Birds and the Bees

Dear Laura,

You have GOT to tell Nikolas to stop watching cartoons that aren't entirely appropriate for Timothy.  If you don't you'll regret it....

Love, Laura

Timmy just came down, super excited!

Timmy: MOM! Mom! Guess what?
Me: What buddy?
Timmy: I know how babies get borned!
Me: do?
Timmy: yeah!  you lay on the table and put something on your feet and then they reach up your butt and pull the baby out.
Me: really?
Timmy: Yup.  Thats how they do it.  Just reach up and pull the baby out of your butt.
Me: where did you learn that?  On TV?
Timmy: yeah
Me: what show are you watching?
Timmy: South Park.

Sigh...Must. Block. South. Park.

Monday, August 8, 2011

Taylor's mind lives in the gutter....

This is me and Taylor...pretty typical <3

So as some of you may or may not know, my niece Taylor practically spends all her waking moments at my house.  Except on the rare occassion she goes out to lunch or something with a friend.  So about a week or so ago, she was meeting up with a friend for dinner.  I guess they went shopping at afterward at Borders.  And Taylor texted me this gem:

She saw this book at the book store and the accompanying text read : Really?  Really really? Hahahahahahah.  And I gotta admit, that Ms. Weiner should have probably chosen a different name for her book...just sayin'...

From Laura

Just a note to thank you for reading and laughing with me at the ones who make my life what it is!