Thursday, September 26, 2013

Where has my baby gone?

What has happened to my itty bitty baby girl?
She's turned into a big, beautiful 4 year old, that's what!

I'm still in awe of the fact that I'm able to raise this beautiful girl and call her my own. What a long, hard process it was to bring her home!
But I can't believe how big she's getting. Having a little girl has been everything I ever dreamed it would be! The bows, the princesses, the pink! Its all amazing!

These pictures from our last couple trips to Disney has made me realize how grown up she is! We've been taking her leash with us to Disneyland. Its much easier when she gets out of her stroller. But she wanted to stay out and walk with her cousin the other day. And guess what? She walked through the entire park! Without dropping, without pulling. She walked like a big girl!

Our princess is making some big strides in preschool! She gets two more years here with the same teacher because she just misses the deadline. I love that because she really does well with this teacher, and I think when its time to go to kindergarten, she'll be ready!
(warning: mommy talk coming!)
She's also getting closer to potty training! She's pooped in the potty a couple times, which is usually the hardest part! Still working on her telling us she needs to go, but its progress!

I love love love my baby girl so much! I can't wait to see our future. Shopping together and talking about boys!
Ah I love little girls!

(by the way, I have no idea why my computer won't let me make my last three pictures bigger! Let me just say that windows 8 makes me want to throw my computer through a brick wall! )

Friday, September 20, 2013

The great Disney freak out!

It was the blog heard round the disabled communities world!

Disney is getting rid of their guest assistance pass!
One person saw the article, blogged about it. Word spread, people flipped out, petitions started and passed around! Before we even know the truth, and what's really happening! It amazes me how quickly people sign petitions without doing research! Kinda scary!

I know I'm going to be the minority, but also the calm person (that didnt flip when they heard this) and a Disney expert!
I was at Disneyland last week, renewing Jax pass when I heard a cast member tell a lady that they were going to be changing their GAP! 
"Oh really?" I was super excited to hear that! Everyone has heard the news stories about the rich people hiring disabled people. But you must understand that it goes much farther than that! The abuse is beyond crazy right now! A lot of the handicap lines are getting longer than the typical lines! I see this on a weekly basis, because that's how often we are at the park! 
Here are the big problems. Disney can NOT ask for proof of disability. This would by far be the easiest way to weed out the abusers. But the ADA says they can't do that! I'm all for bringing in proof of Jax disability! But disabled people screamed that they shouldn't have to show proof, now they are screaming because something has to change because of abuse! 
The other big myth..Disney NEVER offered a "front of the line" pass. Someone called it that, spread the word, and you know where it went from there! Where we are now! They have a pass that will make your stroller like a wheelchair. They also have an alternative entrance, away from the crowds of people. But no pass will jump you to the front. None! 

Disney is not doing away with their disability program, their just changing it. Now I don't know the entire change. I'm not going based off what some website says! I have a few Disney friends, and I'm trying to get true info. Most don't know yet because they haven't started training. But people think they will now have to wait in line. That is not true, you still go to the same entrance you went to before. 
Do I think this new system is ideal? Not at all! I also don't think it will deter abusers. They will simply follow the new system and continue to abuse. 
But Disney is stuck between a rock and a hard place! They need a change, but the easiest way to fix the problem, by law, they cannot do! I can only hope that they can come up with a good way for us to enjoy the park, and keep the idiots from abusing! But I'm not sure if there is such a plan! 
So before we all flip a lid, lets find out what the new system entails! Let me try it out and I'll let everyone know how it is! 

Remember, I have three special needs kidos! I should be totally flipping out with this news. But life with Jax has never been easy! It's not easy at Disney either! Most times we have to wait longer, to wait for a special vehicle. Transferring Jax to a ride with no handicap vehicle is a workout! Disconnecting tubes and carrying his extras with us. We need extra time to get on. The Haunted mansion this time of year is a nightmare for us! Only so many wheelchairs can be in the ride at one time, so often we have to wait more than double the time everyone else waits. I have a little girl that is not only a runner, but a bolter! But Disney is still a magical place for us! It frustrates me so much when these parents flip out, thinking their entitled to bypass everyone waiting in line and step right in. It just doesn't work that way! 
Disney tries their hardest to make the lines as short as possible for us with kids that have sensory issues and body temperature problems! 
I think Disney is trying their best, and I for one am willing to wait and give the new system a try! I have a friend deep in Disney and that person is always asking for our feedback on what works and what doesn't. And you better believe if the new system doesn't work, we'll be sure to let them know!

Wednesday, September 18, 2013

The night that made us cry!

Saturday night we were at Disneyland. We were eating at Naples pizza in downtown Disney. Me, Ray, Carter and the two littles.
Eating dinner out with Jax is not always fun. People think that suctioning him is gross. We try to turn him away from people, or pull his canopy down when we suction him. I always suction him good before we go in hoping that he will be good during dinner.

There was an older couple sitting across from Ray. They had an adult daughter with them. I did notice them glance over a few times while we were eating. I always just assume they are staring at Jax or disgusted by the suctioning.
Unfortunately its just something that we've gotten used to, its our life with Jax.
Our waitress wasn't that great, and while we sat and waited for her to bring our check, Arina was getting antsy! So I took her out and got her settled in her stroller.
A few minutes later Ray walked out with tears in his eyes. He told me that the couple sitting across from him had paid for our dinner! They left before we did, so we couldn't thank them. It was just an anonymous act of kindness.

I'll admit that I've become hardened a bit in my years with Jax. The acts of kindness are few and far between the nasty comments and hardened stares. But they are also so amazing that it softens my heart and gets me through to the next act of kindness or sweet comment I get.

When people say children like Jax are just a burden on us, that we'll be caring for them our entire lives and they won't contribute to society, it makes me angry.

Don't you see? Don't you see the way they contribute?

They bring out the best in people. They make them stop and remember how lucky they are. Their infectious smiles can brighten anyone's bad day.

And I think that's what we need a lot more of in this world. Smiles, and acts of kindness!

So take this story and remember to pay it forward. I know we will!!

Tuesday, September 10, 2013

San Fran baby!

We've been playing in San Francisco since Saturday! We've never been here and we think we found our new favorite place! It's so beautiful, and so much we didn't get to do, we'll definitely be back!

The things we did get to do was Alcatraz,  the Golden Gate Bridge, pier 39, chinatown, and the jelly belly factory! Not to mention meet two friends, including junior, whom we've known online for 5 years, but never met in person! We also just drove around and down Lombard street. 
Trips with Jax are always a challenge. We got a phone call that his glucose Friday was 22! So of course we got a frantic phone call from the ped, who was upset that it took the lab that long to call us! So we had to run out and buy a glucose meter! He also been needing zofran for major retching, and low sats with lots of junk. He just likes to make trips interesting! 
I mean, what would we do without an ER visit while out of town?!
But he's hanging in there, and we go home tomorrow, so we avoided an ER this time!
Because we are still gone, the pic are all from my phone. The good pics will come when they are downloaded!