Bring the Heat

mmm.. the smell of the heater. Strange that I think the heater even has a smell but it does. Its toasty and warm smelling.. obviously, its a heater! Its dark in the apartment, not a single light is on, I'm cuddled up under my soft flannel sheets and then I hear it. The click of the heater turns on, I wait a few seconds and then I can feel that warm air float across my cold face and I smell it. mm! When its dark like this and theres nothing around but the sound of early morning traffic driving down the road it makes dreaming so easy. I just close my eyes and with that single smell the heater gives off I'm suddenly back in the downstairs family room on rockurst court in fairfield. Its Christmas eve and the thought of Santa coming in the morning is too exciting to handle! Little did I know that when I grew up I'd be able to experience the same tingly feeling of being tired and wired at the same time run through my whole body just by drinking too much coffee or a red bull. Catie and I are wearing our matching nightgowns.. plaid Christmas colors with a white collar of course and we are dressing our barbies and applying new lip smackers in our cardboard SEE's playhouse. Tonys running around the outside of the playhouse in his camo pj's being the "robber" thats trying to break in and steal our toys.. walking through the door of the playhouse was never as fun to him as shoving a toy gun through the window of it and threatening his little sisters I guess. Kerri is just a toddler in footie pajamas with curly dark hair and a gap in her teeth.. she's crawling outside the playhouse where the robber is jumping around her but we don't let her in.. besides, our playhouse is made out of cardboard. She'd drool a hole in it or worse.. rip off the shelf on the inside that had pictures of SEE's truffles on it. God forbid. Not the truffles! Dad and Mom are in the living room upstairs with Nonni and Al. Not sure what they are up to as a kid, as an adult tho I'd assume mom was stressing about dinner and santa the next day while dad dozed off next to the green garbage bag full of wrapping paper. Suddenly the phone rings and Dad answers.. we all stop and sit quietly for about 2 seconds until we hear dad say it.. "well hi there Santa Clause!" Then its on.. the race to the kitchen.. somehow the "robber" always manages to shove in a push while Catie and I are tripping over our night gowns anyway and we all run around Kerri leaving her downstairs while we fight in the kitchen to get to talk to Santa on the phone.
Funny how that single smell triggers so much and I'm so easily back to that day like it was yesterday. Then suddenly my stomach feels like I have a sumo wrestler squeezing it with all his might sending shooting pain up my back into my shoulders. My hips feel like there is literally a large ball stuck in between them pushing them apart and my abdomen cramps like none other. I'm having a contraction. Suddenly I'm not in a playhouse, I'm in my apartment. My beautiful husband is off to work already and anxiously waiting for the call to come home and take his wife to the hospital so we can meet our son. Its 4:30 in the morning and I just ate a piece of pietros all meat pizza. Probably the cause of the contraction that just distracted me from my trip down memory lane.
Tony isn't a "robber" anymore and he's not shoving guns through my window. Instead he's my best friend and he walks through my front door to hang out with me and my husband. He doesn't wear GI Joe camo pjs.. at least that we know of and he's become more of a person that strives for peace and equality in the world than shoving little girls out of his way while trying to get what he wants.
Catie still wears night gowns, every day. She is still playing with barbies and her latest lip smackers is root beer flavor. We don't play in playhouses anymore since she is a 20 year old adult and even if she could fit in one we couldn't get her to the floor or inside it. I believe she's the reason I find myself day dreaming of old times more than enjoying current times. When I catch a smell from the heater Catie and I are best friends again rather than a caregiver and recipient relationship like I feel the majority of our life has been. Its not that I don't like our life, I just miss what it was and like to dream about what it could have been.
Kerri is far from a crawling toddler.. She still has her curly dark hair and has beautiful teeth now. She is still trying to get in on the activities of her older siblings and she doesn't let a cardboard door hold her back. She's not crawling on the family room floor anymore but instead traveling to Rwanda to help people in need. Talk about leaving those SEE's candy house snobs in the dust!
I even have 2 more siblings since that Christmas Eve.. My mini me and Anne marie.. never saw that coming!
I truly love my life and the people in it. I love how much these contractions hurt because they mean in a couple of years I will have an excuse to buy another SEE's Candy playhouse. I love how that reheated pizza hit the spot and most of all I love the smell of the heater because it triggers so much of the good stuff I've experienced in my life. It sends me back to my little girl days where my biggest fear and worry was whether or not I'd be able to talk to Santa before my siblings did.

Mission Accomplished

Our family day in Disney Land couldn't have gone better.. Catie was alert and excited the whole day.. She was so alert she got mad at dad for not letting her ride dumbo and space mountain.. Nothing a churro couldn't cheer up.
Annie was calm and happy too.. no fits or tantrums! They were both able to see tons of characters including Mickey Mouse and Caties favorite, Snow White.
The park was only open from 9-5 that day which I think is the shortest day our family has ever spent in the park but for some reason that day felt like it just kept going and going, but in a good way.
We ended the visit with a traditional stop by carnations for ice cream sundaes and you could see tears in everyones eye at one point or another. It was the most bittersweet ice cream sundae I've ever tasted. :)

Funny how that one day seemed so huge, scary, exciting, sad, fun and a million other things all at once and already it has become yet another family memory to look back on. Thankfully I have the thought of Joey's first trip to Disney Land to look forward to rather than always having to look back at Catie's last.

Happiest Place on Earth

Those of you that know Catie know that these days she doesn't get many words out.. mostly just "mom/dad" and "mm hmm" or a strong "yes" or "no" depending on what you are asking her.. With that you could see why it was such a shock when she managed to get this out a few weeks ago, "da-dad. dizland dad, o-kay?" She has wanted to go back for so long now and I guess she was fed up with being told "some day cate.." and she was gonna make sure she got there so she spit out that sentence in the middle of dinner and thats all it took for dad to figure out how to get us on our way. We are even going as a whole family! Of course all of us kids wanted to be a part of her last trip to her favorite place on earth and my parents were given some gifts by some sweet people to help out and thats made it possible for us to go. We'll just be in the park for one day, tuesday. All she needs or really can handle. I'll be honest, I'm not sure how I feel about it. I don't think any of us are. Dad of course crys when he thinks about stopping for gas half way there let alone thinking about the whole trip. I do to though. I cry when I think about leaving that day. Knowing we'll be back before we know it with baby Joey but Auntie Catie won't be able to come along. The only thing at this point that stops the tears and puts a smile on my face is the thought that its Nonnies last trip to disneyland too. I tell it like it is and thats just the plain truth. Aaaanyway, I'm not sure what to expect other then some crying parents and a happy Catie? I don't know if it will be awesome or horrible. I don't know if she'll even be awake that day.. she could have seizures and pass out all day and not even know we are there.. on the other hand, she could have one of the clearest days of her recent life.. We'll have to wait and see...

Heres to hoping she has the best day of her life..

oh and that I don't get mistaken for a float in the parade with my swollen feet..


..to be continued...

A Big Day

October 20th 2009. A day I never imagined being the way it is. I used to think that October 20th 2009 would most likely be a sad one. Catie would be turning 20 but Juvenile Batten kids rarely turn 20 so I figured she wouldn't be here and it would be a dark sad day. Instead its here and its awesome.

Tomorrow Catie will be 20 years old, alive and happy. She will have overcome the "late teens" half of the juvenile batten disease life expectancy and be entering the "early twenties" half. What a gift! She has experienced many declines and is now a mumbler and hardly able to get out of bed or her chair but is still further ahead then what I could have ever imagined her being at this point. She is still the same happy kid full of smiles, hugs and laughs. Its hard to celebrate her 20th birthday because it only seems realistic to assume its her last, just like I assumed her 19th was her last and her 18th before that. I guess I have to always soak in the big moments and treat them as if they are the last even if I've been doing that for the last 8 years. My goal for tomorrow is to enjoy it so that if it is the last birthday she celebrates with us I can make sure I remember it as the best birthday she celebrated with us. Its bittersweet. Its reality. Its here, her 20th Birthday!! Happy Birthday Caca Butt!!!

Another thing that is going on tomorrow that I never saw coming for October 20th 2009 is the CD release of This Time Next Years Road Maps and Heart Attacks. My brothers band recorded their first full length this February and it will be hitting the shelves tomorrow. It blows my mind! My big brother has been playing music since he was a little kid and in some kind of band since he was a young teenager.. Now he's on tour with his closest friends, meeting new friends, seeing the US and soon Japan all while playing music. Doing what he loves, living the dream! I can't tell you how often I think about him being gone and ask myself what my dream is? Rarely do people know their dream let alone be able to live it and that is what he is able to do. Tomorrow, I will be able to go to Best Buy and purchase a cd with my brothers name and picture on it that has some of his lyrics in it and obviously alot of his musical talent and ideas. Trust me, the cashier will definitely know whats up as I hand him my money.. He may not care who my brother is, but he will know by the time I leave. :)

So much for a sad dark day huh?? more like wow, Catie is still here, Tony is a rock star and I get to watch it all happen... Its gonna be a good day folks, a very good day.

The Dirt on Pregnancy

actually, maybe this blog should be titled the 'dirt on anemia' instead?

wanna know something NUTS? this picture of dirt makes my mouth water. Crazy right? buuut I found out that its extremely common for pregnant women to crave dirt, especially when they are anemic like I just found out I am. Talk about a bum out. The one thing you crave like a maniac and its not edible. go figure...

In other news, we got a cat. I think he's satans brother. oh and Tonys leaving for tour again.. I'm not feeling so great about it this time. Call it the hormones but I have been priittty emotional over it lately..

I think thats it.

ciao

Ouch

The last time I was awake until after 4:30 in the morning I was in lake tahoe with my best friends celebrating my last weekend before tieing the knot.
Now Im up past 4:30 in the morning in my home on the couch cuz we didn't just tie the knot.. we..tied..the.. knot.

this makes for poopy-head blog entry # 2 in a row.

can someone either give me that boost of energy people talk about getting towards the end or yank this baby out already before I go insaaaaane??
thank you.

Watch out!

If one more person tells me I look due any day now AFTER I tell them I have 10 weeks to go, they will get to experience the built up frustration I have been growing inside from the last 20 idiots that told me the same thing..
For all those people that lack discretion, can you please tell me where I'm supposed to hide my now 16 inch long baby thats growing in my 12 inch long torso? Cause last time I checked I was 5 foot 1 inch tall and have nowhere for anything to grow but out. Also, can you please tell me whats wrong with being pregnant and looking like it? Pregnancy is a beautiful thing and if you don't like my tank tops and would prefer a tent top then tough luck!! my baby in my belly is cuter than your baby outside your of yours..sorry but I'm having a very frustrated moment and I'm over hiding it!
I'm 30 weeks pregnant with a healthy little baby boy that is continuing to grow rapidly and I love my huge belly, I love that it sticks straight out and I don't care if you think I'm too big cause I'm right on track.