See Christian and Lola's ISR video!

Tuesday, October 30, 2012

Awesome October.

Where did October go?

In Southern Arizona we finally get beautiful, gorgeous weather that proves why people move here in the first place. And since we finally get to leave a long, hot summer behind us it's like everyone said - Hey! Let's plan every single event possible in October!

So here we are, a day away from November. Again, how did that happen? Not that I'm complaining. Nope. Because to be honest, October has been awesome for us and for Christian.

I told you all about how he got to visit the pumpkin patch with his class. Well, he showed us around that same pumpkin patch the very next weekend.

Ever the doting sister, Lola has taken on new, more in depth interest in Christian. She now speaks for him saying, "Christian doesn't want black, he wants brown." Or, "Christian likes chocolate pudding, right Mommy?"

It's still like magic watching them together. The other day she insisted on me moving my chair so she could sit right up next to him. Then she got in his face and smiled and he reached toward her. The moment was just...indescribable for me. She tells me, "Christian's upset," when he's whining and she gets right up next to his chair to watch cartoons with him while she leans on his tray.

And I just love the way he zones in on her.

I also get to walk up to moments like this...

Seriously, this is not staged or suggested. Lola brought over the keyboard, layed it across their lap, and "helped" Christian play it.

How did I get so lucky?

Christian has had an amazing month in school. We got a note from his speech therapist saying he really likes a switch that activates a toy chihuahua by making it yap. He purposely activated it several times and showed her more than he had ever shown in the past. Maybe he thought all her other toys were boring.

Christian also passed his hearing test with flying colors in both ears. It's not a huge surprise but I love any tests that are passed. We got a note from his teacher telling us that while his friend was pretending to read to him, Christian was looking at him and vocalizing. In fact, Christian has been pretty vocal lately. So I name October Christian's Month of Communication! Here's to hoping it continues!

Guess what Christian's going to be for Halloween!!!


Daddy made this Batmobile especially for Christian. It is the coolest costume I have ever seen. And Christian gets to rock this whole thing at school tomorrow! I can't wait for the other kids to see it.

When I look at this I just see love. Christian seriously has the best dad in the world.

Again, how did I get so lucky?
Wednesday, October 24, 2012

That damn word. The r-word.

I'd like to out myself. I try to stay neutral and I don't post political ramblings online. I may "like" them on facebook or comment on someone else's status or comments. But I try not to make it a habit of vomiting my political thoughts all over my facebook status. I've found that, like airing your dirty marital laundry, it's just not a good idea.

I'm outing myself, yes. I am a moderate conservative. I'm a registered Independent and I vote and side conservatively, in most cases. (Gasp!)

Before you run off to unfriend me on facebook or stop following this blog, I have a purpose in outing myself. Just stay with me for a few more minutes.

A very conservative, Republican, controversial author, Ann Coulter, had this to tweet after last night's debate.

"I highly approve of Romney's decision to be kind and gentle to the retard."

Seeing this rattled me a little. I watched the debate last night. I know what she's insinuating. She's saying President Obama is slow. She's saying that he's intellectually inferior. She's saying that we have to speak very slowly for him to understand.

This hurt my heart and it had nothing to do with President Obama, the debates or the election.

I've never spoken on this blog about the use of the r-word. I used to use it long ago when I needed something to say in place of the word stupid or idiotic. Then my whole world changed and I saw things differently. Because clinically, Christian could very well hold a diagnosis as mentally retarded. All of the sudden, it's not so funny. Those who don't know Christian's story or don't know many people with disabilities might just look at Christian and say he is retarded. Reading that hurts, doesn't it? It hurts writing it.

I hear people say the word all the time. I've heard relatives and friends say it. I've heard special needs parents say it. I don't correct them because I'm not the word police. But every time I hear it...every single feels like a red, hot poker in my chest. Not only does it hurt for my son but also because I know a lot of parents who struggle every day for the world to see their child as more than disabled. They're trying to prove their child has worth. And they're deeply offended and hurt by the r-word. I hurt for them. There are parents with children who were born with special needs. Maybe these children are diagnosed with mental retardation. Just a stone's throw away from the word, really. I used to separate myself from these parents as if the r-word didn't apply to us because Christian wasn't born with a disability. He was born normal. With time, I learned it didn't matter. The world sees him as a disabled child. There are people in this world who might see him as retarded. And, yes, I'm writing out the word retarded. Not the r-word. Because people who may see him and think that don't think - Oh, he looks like the r-word. Every syllable and hard consonant of that word stings.

So when I saw that tweet, I was just profoundly disappointed. Not that I'm a fan. It wasn't about politics at all, even though we might vote the same way. It was about humanity. It was about decency. She wasn't just saying, "Obama is so retarded." She was drawing a picture for us that he is intellectually inferior, unintelligent, that he needed us to be slow so he would understand. You mean slow like my son, Ann Coulter?

Christian needs us to do things over and over for him so he understands. Yes, we have to speak slowly. Painfully slow. Christian doesn't understand. And we have to do things over and over for him. He is very slow. His progress is slow. His actions are slow. We live in a world of slow.

When I read that tweet I didn't think about what she meant to say because it didn't matter. I thought about my kid. I thought about his buddies. And she was equating Obama with them. Like he was so low. Like our kids are so low.

Red. Hot. Poker.

It's not about politics. It's not about distraction. It's not about controversy. It's not about inflammatory remarks to stay relevant. It's about the red hot poker of a word so easily thrown around by Ann Coulter and others who are so quick to use it to describe something as stupid and worthless.

I don't want an apology. In fact, I just saw an interview with her asking her about the tweet and she was very unapologetic. Fine. Whatever. It's honestly not surprising.

Just know this is not a conservative issue or a liberal issue. This is about compassion and common decency.

Because we can't change Ann and her bogus argument against political correctness, let's just make changes within ourselves. If you must cut ties with me based on my convictions, at least promise to do this before you leave. Just pick another word. It hurts people. And our kids are so much more than slow.

Thursday, October 18, 2012

Christian and the pumpkin patch.

Christian went on a field trip today with his class!

Not only did he get to visit a pumpkin patch and pick out a pumpkin, but he also got to ride a school bus for the very first time!

Even though I wanted to go and witness all this preschool pumpkin madness, I wasn't allowed. I was mildly annoyed by it, but I'm sure hovering parents are as equally annoying. Even Steven. And, in all honesty, it's okay if he does things without Mom around every once in a while. He can have those experiences of his own with other students and his teacher and his aid. He's his own man now.

So when I dropped him off I told him he would be riding a bus. Sometimes when there is a lot of commotion during transporting between the house and car he'll get all gaggy and he'll start to make himself vomit. So I looked him right in the eyes (and he looked at me right back) and I told him not to throw up, not to scare his teachers, and that he would be going on a bus for the first time. He listened to everything I said while holding eye contact. I'm sure he was thinking, "Mom, just leave. I got this."

I asked the teacher to take a picture of his first time on the bus and I left my sunscreened, blond haired boy to enjoy his field trip like the independent little man that he is.

Reports were that it was a great time! His aid helped him choose a small pumpkin to take home and he did great on the bus. I was so happy to hear about all of it! And not really annoyed about not tagging along after all. It was a strange, new kind of happy. I was proud.

And now for a few pictures.

Christian with his aid who loves him so much.

"Choosing" his pumpkin.

Christian's PT from school, Mr. Dan, came along, too! If you look closely you can see through Christian's sunglasses that he is looking at Mr. Dan. He is definitely thinking -

Mr. Dan, I like your orange shirt. They match my shorts. And this pumpkin. Well played, Mr. Dan. Well played. 

The truth about today is that I was happy to let him have his own experiences. I don't worry about Christian much. I mean the day to day things, I pretty much always know how he's doing. But it felt good for my Mommy heart to worry about him a little. Not the bad kind of worry. The "don't forget your lunch money-first day of school - look both ways before you cross the street - have fun, Honey" kind of worry. Every minute of every day involves me, except for the short time he is in school. So it was kind of nice to watch him fly a little.

I'm glad I got to experience letting him do his own thing. I'm over the moon that he got to have his own thing.
Sunday, October 14, 2012


I am having a blasty-blast with my blogging project for Dancing With the Stars!

Of course, it's a lot of fun because I love the show and I'm very passionate about who stays and who goes. But there's another reason I'm enjoying this so much.

I love to write. But I am absolutely enamored with writing about things I love. That's why I continue to blog about Christian, Lola, Gabe, and our whole family. It comes easily because it's my heart in print. Every struggle we've had gives birth to a heart wrenching blog post that provides a chance for me to unload. It's free therapy. Likewise, with every triumph I've been able to celebrate on this blog by shouting from the rooftops and dancing a victory dance through written words. It is completely fulfilling.

Writing about Dancing With the Stars isn't that serious. What I mean is that I'm not writing about brain injury or orthopedic surgeries. Sometimes not writing about serious happenings is exactly what I need. I get to write about TV stars, spray tans, floating Foxtrots, beautiful dresses, and shiny things. It's fluff. It's my fluff. It provides my brain much needed respite.

And now that I've had a taste of brain-fluff-respite I realize just how important it is to have that for every mom, not just moms with extra goodies to deal with.

It's easy to be afraid of venturing out of my comfort zone. Each year, which I equate with life seasons, I absorb a new theme (or several). The beginning of this year I was determined to get over being afraid. I wanted to question what gave me fear and then take it on as a project. At first it was with ferocity and malaise. But now, it's with interest and self fulfillment and it's not even on purpose.

Stepping out of the box. Facing fears. Enjoying the fluff.

If you'd like to see some of my stepping out side of the box fluff, here's a link to my appearance last week on our local morning show, Morning Blend.

And I get to step outside of my "box" again and visit the show this Tuesday.

If you're wondering why I love Dancing With the Stars so much, click here and read about it! I blog about it every week!

So what are you afraid of?

Find your fluff and enjoy it.
Friday, October 12, 2012

Retreat recap and its fabulousness.

You know that feeling when you return from a vacation, a few days pass, and you pull up your vacation pictures again. You stare them over. You laugh again at all the funny things that happened. You can't believe you took a picture of that. But it's not until the end of the picture memory review that it hits you. Some kind of magic happened. And it's at that very moment when you really understand the fabulousness of that trip. You don't quite understand that while it's happening. But the pictures? They tell a different story.

That's where I am today.

I'm just a few days out from a trip full of fabulousness at the retreat in Cle Elum, Washington for Mommas of near drown kids.

I know most of these women. I attended the retreat last year and it was pretty much life changing for me. We've kept in touch over the last year through Facebook and the weekend finally arrived!

Retreat Weekend!

Just like last year, I was welcomed by Mt. Ranier. The magnificence of this mountain popping up nonchalantly outside my plane window screams - Oh, it's on this weekend, Momma.

The first day, fresh from the plane ride, all the women met up in downtown Seattle. It was actually really nice weather so it made it an even nicer experience to hang out by the water.

My girls.

We modeled fashion-forward bibs at the Crab Pot.

After we arrived at Suncadia, the place of the retreat, we stayed up late to catch up. We talked about our kids, our families, we ate pie, and an unhealthy amount of chocolate.

But it's okay. We hiked it off in the morning.

There were times when we giggled and laughed. We were goofy and silly and without children.

There was a lot of heartfelt conversations. And some tears. But it was okay. They were shared.

So were the ingredients for s'mores. It's all about balance, right?

We went to a harvest festival. So what is there to do at a harvest festival? Well, ride a mechanical bull, of course! Yes, I did it, too, for the first time. But I don't have any pictures handy of that debacle. Oh, well!

Reflecting on this weekend was easy for me this year. Last year, I realized, I was in a much different place. I had a lot of fear. Not of the retreat, but in general. It was the first time for me away from my kids, ever. I didn't know most of the women. Okay, so that was a little scary. But when I looked at pictures of myself from last year, I really didn't look like I was having fun. I was having a blast. It's just that nobody could tell.

When I saw pictures of myself this year, I look happy. I said - Self, you look happy. And I feel happy and so at peace and this past weekend really solidified that.

There were a few exercises we did this weekend that I think might forever change me. I was expecting to relate to other moms and learn more about them. I intently listened to every one of them. Imagine my surprise when I actually learned more about my self. See, not only do I feel genuinely happy and at peace, but I feel like the fear has subsided. I'm living now.

Part of learning this was learning by the examples I had last year. Fifteen of them, to be exact. Eighteen ladies this year. There is something very soul-moving, if that makes sense, about looking into the faces of these women, laughing and chatting, but also knowing they intimately know that deep down part of me that is broken. They have gone through the exact same thing. That part of my life - they live it. Not something like it. Not kind of the same thing. 

The. Same. Thing.

Look at them. All of them. So much pain. So much hurt. And so much beauty. 
Behind each one of those faces is a child who fell into a pool or a lake or another form of water. Their little baby lives ended as they knew it. Just let that sink in for a second. Each one of those women dropped to their knees and begged for mercy many times after that. There are a lot of tears amongst these faces and a lot of pain. But look at them standing so strong. Some of the strongest women I know. One step in front of the other they picked up the pieces. They laugh now. A lot. And they live.

I didn't leave this weekend feeling sad. I felt renewed, refreshed, and reaffirmed of the place we are in. I've learned from those before me that life goes on. Crying will take place, but eventually so will laughing. I learned there are dreams out there ready to be conquered by all of us. I learned that somewhere in Washington there is a place that sells the best chocolate covered caramels in the world. I learned that although I might have been broken at one time, I feel pretty whole now. 

And it was lovely.

This dude wanted to say goodbye as we were leaving.

Tribe Sisters: I hold you all close to my heart. I am so grateful. Just grateful.
Thursday, October 4, 2012

Therapy Love.

Today we had therapy at the park!

One of the parks we have visited installed some new adaptive and sensory play equipment so we wanted to check it out!

We met Christian's OT, PT, and ST at the park. It was a therapy party!

We're not sure if the adaptations are finished but for some reason the area with the new equipment was the only area NOT shaded. (What's up with that???) Never fear! One of Christian's therapists had an umbrella that helped shade Christian as he played.

Then it was off to the yellow tunnel!

How 'bout a feather boa, Christian?!

No way!

Fine, I'll play along. This is just crossing the line you guys.

What was cute about the tunnel is that other kids were playing and at first wanted to know what was going on in the tunnel. Then they met Christian, said hello, and went on about their business. A little red-headed girl climbed down from the tunnel after meeting and watching Christian and said, "He's just so cute!"

I said, "I know! He's mine!"

Off to the slide!

I actually already knew from previous experience that Christian is not a slide fan. But it doesn't matter. He used to hate bouncing and jiggling and tickling. And now he smiles with bouncing and jiggling. So he's going down a slide once in a while!

Save me!!!

And what was Lola doing?

She was busy being a beautiful princess. Business as usual.

It's called grass therapy! Try it!

We are really blessed with a great team.

And Christian is loved.

Now, this Mama is off to Seattle early tomorrow morning to meet up with other amazing mothers who have super kiddos like Christian. I can't wait! But I will miss my babies something fierce. It's amazing how when I'm packing for just myself, it takes so much less time! I am constantly feeling like there is more to do. But, nope, it's just me going.

See you when I get back!
Tuesday, October 2, 2012

Our kind of life.

"To get through the hardest journey we need take only one step at a time, but we must keep on stepping."  - Chinese Proverb

The concept of moving on is often partnered with the idea of leaving something behind. If I were to sit down and explain our journey and pathways within the last three years, I'm not sure I'd characterize it as moving on and leaving something behind. It'd be more accurate to say we're moving on and getting used to it. All that has culminated is now a part of us and through bumps and blunders and short periods of darkness, we've floated into a very happy place for the time being. It's like normal life in this happy place. And it really feels like moving on should feel.

It's funny how the idea of moving on in our kind of life isn't really the same type of moving on for others. When I say "our kind of life" I mean having a child with severe impairment. The initial drive after suffering a traumatic event like a near drowning, choking, or oxygen deprivation at birth is to hit the ground running, move, move, move, get to that destination. The destination is different for everyone - complete healing, walking, or simply breathing without having to work so hard. What you don't plan on in this journey is to have to revisit things you thought you left behind for good.

A better way to explain it is this:

In the life of a typically developing child, they hit milestones, turn three years old, speak in full sentences. Unless some catastrophic event happens, you never have to visit three year old full sentences again. You move on. You build on it. But you never go back there again.

Recently, I've been reminded that this journey can sometimes feel like a track run, going around and around in circles. It's not only about reaching the desired destination or goal, it's also about avoiding having to return to unpleasant things. That's what moving on is about, right? You get to leave the bad stuff behind.

In "our kind of life," not really.

There are a few families in my little circle of mommies having to revisit decisions and realities they thought they got to leave behind. Years later, hard decisions still have to be made. It's one of the biggest punches in the stomach to have to face obstacles you thought you had defeated.

As for Christian, he is really doing well. We're travelling our path and it really feels like we're moving on.
So what's our destination?

To be a happy family. To soak up every minute Christian has on this earth. To love him and kiss on him and make sure he is happy and healthy.

It feels like we're getting there. We're moving on. But it doesn't mean that bad stuff isn't hiding in the bushes. It's there waiting for us.

I see families that are new to this journey and I feel sad for them. Because I know it's going to be painfully, unbearably hard. I think they have such a long way to go and I wouldn't trade places with them. I feel that way almost as if I hadn't ever gone through it myself. It's like an out of body experience when I meet these families. I guess that's part of the definition of moving on in our kind of life.

Sometimes I feel guilty for how accepting and at peace we are with everything. I feel guilty like maybe we look a little too happy when other families are suffering. But tonight primetime television had the best advice - Don't feel guilty. Feel grateful.

Tonight I am grateful for moving on, I'm grateful for our destination, and I'm grateful for our kind of life.

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