A sassy, crafty mama bird from Los Angeles
raising a very sweet little girl with Autism
and a new baby boy in the Midwest... and other stuff, too.

Friday, April 29, 2011

*This Moment*

{this moment} - A Friday ritual. A single photo - no words - capturing a moment from the week. A simple, special, extraordinary moment. A moment I want to pause, savor and remember. -SouleMama

Thursday, April 28, 2011

The Gift of Life

April is Autism Awareness Month. Oh, you already knew that? Right. I'm guessing that if you're here, reading this, you know a little bit about Autism and you're pretty aware. If not, you can click here and read loads of stuff I've written about the big A. But, April isn't just all blue puzzle pieces, it's also the month designated to raise awareness about Organ Donation. Yes, I talk about this a lot and you can read my previous organ donation stuff here.

Here's the short story- I have this best friend named Lisa. She had a beautiful baby girl in January 2004. Shay was born five weeks early after a completely normal, boring pregnancy. Everyone in the room waiting anxiously for her to take her first breath, hear her first cry, and breathe their own sighs of relief. That first breath didn't come. Shay was immediately put on a ventilator and taken to the NICU where she remained for ten days. She took her first breath on her own almost two weeks into her short, fragile little life. When Lisa finally got to bring her baby home, she knew there was something going on with Shay's heart, but she didn't know what- in fact, at 6 weeks, Shay was checked out by a cardiologist who didn't find anything significant. But, just 3 weeks later, Lisa brought Shay into the hospital with what she thought was pneumonia. It was not pneumonia. This tiny 2 month old baby girl was in congestive heart failure. Within an hour Lisa watched her baby girl be airlifted to another, better equipped hospital. She raced behind in her car, headed to a terrible nightmare. Shay was listed in critical condition, and after they operated on her to repair a leaky valve, they thought she'd be fine. She was not. They couldn't get her off the ventilator. After a heart cath, they found that she had restrictive cardio myopathy. Did I mention that Lisa is a nurse who has always worked in the heart cath lab? Yeah, so she understood just how dire this was. Shay would only survive if she could receive a heart transplant. That was on a Monday. By Wednesday she was placed on the list, waiting for heart to save her life. Five weeks later, just as Shay was about to be taken off of ECMO (life support), someone stopped Lisa in the hall and asked her, "Can you believe it? There's a heart!"

Miles and miles away, in Kansas, a family made the beautiful decision to give life by donating the organs of their 4 month old baby boy. His heart was rushed to Ann Arbor, Michigan and was immediately placed into Shay's tiny little chest. She remained on life support for 7 long days and nights. When I ask Lisa about the moment she knew her baby was going to live, she says, "I didn't. It was a day to day thing. Some days it still is."

When a child receives a heart at such a young age, it is certain that heart will not last more than 10 years. Shay is 7. That means she'll need another heart. Soon. Unfortunately, that means she'll have to go through the terrible process of rejecting her heart, being placed on the transplant list, and getting sicker and sicker as she gets moved "up" on the list.

And then, we wait.

We wait for another family to endure tragedy and make the decision to give the gift of life through organ donation. All that time, we'll be hoping and praying that there will be a heart for Shay; that we can watch her grow up to be a beautiful young lady and then a beautiful old lady.

Shay shows off her missing tooth

April is Donate Life month.
110, 586 people are waiting for an organ donation
18 people will die today waiting for an organ
1 organ donor can save the lives of up to 8 people



Monday, April 25, 2011

Beautiful Boy

"Beautiful, beautiful, beautiful
Beautiful Boy."
-John Lennon

There's a new boy in my life...

This morning, my sister in law, Emily gave birth to my very first nephew, Jonah. He is stunning. I will have to wait three more days to see him in person. Until then, please let me show off a little bit...

Jonah Evan

Friday, April 22, 2011

*This Moment*

{this moment} - A Friday ritual. A single photo - no words - capturing a moment from the week. A simple, special, extraordinary moment. A moment I want to pause, savor and remember. -SouleMama

Monday, April 18, 2011

A special appearance by Jillsmo!

So, this is it! It's spring break, b*tches!! I'm way too busy to write and post because I'm off in Cancun participating in wet t-shirt contests and taking tequila shots off a hot 25 year old's 6pack abs trying to entertain a sweet Little Bird who has no school and no therapy today. What's a girl to do?? Get Jillsmo to make something up and let me post it here for your viewing pleasure!!! 
This is Jill. No, really. It is.
Yeah, that's right. Jillsmo?? she's my girl. You probably know her and think she's freaking nuts awesome, but if you don't, please take some time to visit her blog Yeah. Good Times. You won't regret it. Or maybe you will. But, I really don't care. Off you go, Jill....


Earlier, I’m walking home from Trader Joe’s (this is an irrelevant but necessary fact to point out, that I had been to Trader Joe’s; mostly because I love that I live 3 blocks from a Trader Joe’s and I like to mention it whenever I can) and there’s this woman having one of those awkwardly loud cell phone conversations in front of her house. She is apparently fighting with the father of her children (I just assume it’s a man, although you can’t ever really be sure) about what I can only call “their different parenting styles,” and she says “I just don’t understand why you something something something something….” There’s a pause, and then she says “So, you just don’t have time to have children.”

It wasn’t a question. It was a fact. The person she was talking to apparently doesn’t have time to have children. And I thought, I wonder what he’s saying now? How is he defending himself? I’m sure this isn’t the first time he’s heard this kind of thing from her, because here she is not at all being embarrassed at having this exceptionally loud cell phone argument in the middle of a crowded neighborhood; surely she’s done this before, and surely he has a prepared answer.

I felt kind of bad for him, but then again, I only heard that one little piece. And, as I rounded the corner and the sound of her indignant shouting faded, I thought… “You know what? I don’t have time to have children, either!”

Seriously, man, I mean I love those little guys and all but they really cramp my style. So, I thought I might come up with a list of things that I could and no doubt would be doing, if only I didn’t have these time suckers to constantly take care of. Join me on this journey, won’t you?

1. I would travel the world… HA HA HA HA HA…. No, I’m totally kidding. I would never do that. Okay, let’s start again…..

1.   I would pursue my dream to be a rock star. I’ve got the talent. I’ve got the looks. I’ve got the attitude. I’ve got the brass balls. It’s just that these kids take up so much of my time, I’ve never been able to go out and make this happen, is all. (Note: I don’t actually have the talent or the looks; just the attitude and that other thing).

2. I would be a Nobel prize winning novelist. My books would save lives and influence people. Because I have that kind of talent, you know; you’ve read my blog, right? Oh, you have read it? Well. This is awkward, then, isn’t it? Okay, moving on…..

3. I would throw wild parties every night and invite only the coolest and hippest people. I was going to make a joke here, but at first I typed “hippiest” and I think that typo actually speaks for itself.

4. I would be a world class chef; in fact, I would be an Iron Chef! There’s a reason that Macaroni and Cheese has never been a secret ingredient, you know… and it’s because those hoity-toity chef-type people just don’t know how to think outside the box! If I were an Iron Chef, you can bet that Chicken and Broccoli Casseroles would be heavily featured.

5. I would stay up late drinking every night, and sleep until noon every day. Oh, who am I kidding? I do that now! I guess kids haven’t really cramped my lifestyle all that much, after all.


Friday, April 15, 2011

*This Moment*

{this moment} - A Friday ritual. A single photo - no words - capturing a moment from the week. A simple, special, extraordinary moment. A moment I want to pause, savor and remember. -SouleMama

Wednesday, April 13, 2011

Autism Awareness (or something like that)

We're just about half way through Autism Awareness Month and it's dawned on me that I haven't gone out of my way to help make others aware (like I have time for that). But yesterday, the bird and I stopped by Whole Foods. As we approached the checkout, I noticed a blue puzzle piece pin affixed to the shirt of the lady behind the counter. I asked her about it. She said that last week WF had a day where they donated a very small percentage of sales to Autism Speaks (yeah, yeah, not everybody digs this organization, but whatever- they raise awareness); she said WF even gave employees basic info about Autism in effort to educate them a bit. I could tell that she didn't have a personal connection and possibly didn't even know anyone who had Autism. So, I called the bird over (she was busy with her hands in the big bin of orange juice cartons filled with teeny tiny pieces of ice: "I want ice, mommy!!"). I introduced her, "this is the bird. She has Autism. Sometimes, this is what it looks like."


So there I go. Spreading a little bit of awareness. Interestingly enough, this isn't the first time I've done something like this in line at Whole Foods.

Yeah, I know.

Friday, April 8, 2011

Nothing Gold Can Stay

It's been months (months!!!) since we've seen any kind of regressive behavior or anything to even indicate that we might head into that direction. Actually, since we've begun the new deal protocol, things have been pretty freaking awesome with Little Bird. Alas, nothing gold can stay. The past week has been rrrrrrrough! She whines more than she speaks, argues more than she agrees, and slams doors and tells me to "go away" thus raising my blood pressure to dangerous levels. 

While I want to blame the weather, the B12, the month long courses of vancomycin and nystatin, I have no real idea what's happening here. Of course, I've spent hours in my research lab (google.com) considering all the options. Two weeks ago, Magda was doing cranial sacral therapy and with her hands placed firmly over LB's liver declared, "wow, she's really detoxing." I know that the meds were meant to detoxify her system so some of this is to be expected, but it hadn't occurred to me that she'd still be dumping toxins. I know this is going on. I also know that not enough of this stuff is, um, coming out. So, today, after school, I'll load her up on miralax and wait. This is going to be a very very very long weekend. If you don't hear from me, please send chocolate chip cookies for me and toilet paper for the bird. 


*This Moment*

{this moment} - A Friday ritual. A single photo - no words - capturing a moment from the week. A simple, special, extraordinary moment. A moment I want to pause, savor and remember. -SouleMama


sometimes you've just gotta laugh a little

Monday, April 4, 2011

10 best places to live with Autism

A friend just forwarded me an article published by the LA Times listing the 10 best places to live if you have Autism. 


You can go read the article here, but here's the highlight:


In the top 10 were, in no particular order: New York, Los Angeles, Chicago, Cleveland, Philadelphia, Boston, Northern New Jersey, Minneapolis/St. Paul, Seattle and Milwaukee.

The worst places -- the states generating the most negative responses -- included Texas, Virginia, Tennessee, Ohio, Florida, Michigan and (despite L.A.'s high ranking) California, according to a news release.


Basically, moving out of Los Angeles and into Michigan might not have been a great idea. 


Do you think Los Angeles would take me back?

Saturday, April 2, 2011

World Autism Awareness Day 2011


In case you haven't heard that it's Autism Awareness Day, come on out from under that rock and re-read this old post called "What Is Autism?"

1 in 110 babies
1 in 70 boys
1 beautiful, smart, funny, sweet Little Bird


My family has decided to Light It Up Blue. Have you?


I love the photos that are rolling in of people spreading Autism Awareness today by wearing BLUE. Are you wearing your BLUE today? Send me a pic at DGGOTB (at) gmail (dot) com and I'll add it to this post! Show me your BLUE!! 

Christian L.

Isis the dog wearing her blue!
JP

Little Bird's Grandma!!
The Real Integrated team
Marnie

Sarah and Jacob
Dr. J
Ben
Jeff and Rebecca
Aimee (christian's mommy)
Me and my bird


Friday, April 1, 2011

*This Moment*

{this moment} - A Friday ritual. A single photo - no words - capturing a moment from the week. A simple, special, extraordinary moment. A moment I want to pause, savor and remember. -SouleMama

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