See Christian and Lola's ISR video!

Thursday, December 27, 2012

Be nice to your kids, please.

I hope everyone had a very Merry Christmas! We had a great time being with family and soaking everything in as much as possible between gatherings and presents and crowds and cookie baking. I'm formulating what has become my annual special needs Christmas gift rundown, which I'll be sharing in the next few days! Christian got some good stuff! Lola can attest to that!

The holidays can bring out the best in us and the worst in us.

I'd rather talk about the best, but I feel I have to talk about the worst.

Holidays are a stressful time for everyone. They shouldn't be, but they are. People drive slow. People are in a hurry. Kids are wired on sugar and jumbled schedules and parents are just trying to create any sort of magic they can muster.

I see a lot of spirit and a lot of "nice," but I also see a lot "not nice."

Now I'm going to get all judgy and talk about parenting and I might even pull the "I would give anything..." card. I don't pull it a lot, but I feel it's appropriate.

I see a lot of parents being not so nice to their kids. You're right, I have no idea what's going on. I don't know what happened earlier in the day for you to get to that point.

And if I'm totally honest, I've probably been that parent. I lost patience. I might not have been so nice. Maybe someone thought I wasn't being a very nice mommy.

So I have to check myself.

There is a lot of talk about being kind and spreading kindness. Especially in the wake of the tragedy in Newtown. And when we think about being kind, we often think about spreading it to strangers. But I urge you to spread kindness in your own home. Be kind to each other. Be nice to your husbands and your wives. Be nice to your kids.

And I would give just about anything to have a rambunctious four year old boy that I had to yell at so he would settle down. Really, just about anything. Yeah, I pulled that card. I understand we all get frustrated. Trust me, I've been there. But I'm sure those parents in Newtown with unopened presents under the tree would give just about anything, too.

So watch your tongue. Watch your actions. Show love. Be kind. I promise to practice what I preach.

Be nice to your kids. Maybe if we're nicer to our kids, they'll become nicer adults and things like what happened in Newtown will be avoided.
Wednesday, December 19, 2012

Adventures in Eye Gaze Talkers

We have been gazing and gazing and gazing!

Not really. But Christian has!

Let me back up and revisit his big evaluation coming up at the end of January. Christian will be evaluated by a team for the perfect communication device for him. In the mean time, we're dipping his toes into the warm waters of eye gaze talkers. This means we set up three different consults with three different eye gaze device companies to see which would be best for Christian before the evaluation so we have more information going in.

And, just really quick, the eye gaze talker is a communication and learning device that functions off of reading the glint of the eye. Basically, where ever Christian looks on the screen, something will happen. However, he has to learn how to keep his gaze on a picture to activate it and, eventually, learn to look at pictures to communicate and essentially "talk."

We had our first appointment last week with the Tobi company. They came to our house and brought all of the equipment. It was very impressive but I didn't know what to expect in the first place. The rep brought a rolling mount so that we could get the optimal position for Christian to functionally use his vision and without much difficulty. Positioning is EVERYTHING. She was able to assess where Christian was using his vision and adjust the equipment accordingly.

Of course, my biggest fear would be that Christian didn't participate at all. That was only a fear, though, as I knew he would be able to do at least something and he absolutely delivered. Once we got his gaze calibrated, we quickly learned Christian would need larger pictures and a shorter reaction time. Meaning he couldn't be required by the computer to gaze for a long time to activate a picture.

We adjusted and readjusted and then found a program with four large squares. In each square was a musical instrument. We asked him if he could find the drum and make it make a sound. And then he did. Then we asked him to activate the guitar like Big Brother plays and then he did. His OT who has known him the longest cried a little bit. Because she's awesome. (Sorry I outed you, Kim!)

Today we met with another company called PRC. She requested that we meet at his school in his classroom. I was a little nervous about this because there is so much distraction in his class. But I guess he would eventually need to learn how to use the device despite the distractions so it was fine that we did the consult at school today.

Christian had an audience, too - his vision specialist, his teacher, his speech therapist, and his PT came to watch. No pressure, Christian! So, of course, the first twenty minutes or so he was pulled to the right and refused to participate. They also didn't have a rolling mount so Christian had to be adjusted to the device rather than the other way around, which was a lot more difficult.

I finally asked if I could hold him on my lap to see if he would start to participate. And it worked! Stubborn boy! As soon as I had him in my lap and not fighting his ATNR and extension, he not only started to look at the device, he activated it, and held his head up the entire time! The device was even able to be programed so that everywhere he looked, the squares would light up in red. It was constant feedback and encouraged him to keep exploring. He did great!!!

We have one more consult to go with Dynavox, but that's not until mid January. I liked elements of both systems, but the Tobi system did seem newer and larger. I also thought the rep from Tobi did a better job of conforming things to Christian rather than trying to conform Christian to the device. Big points for the Tobi rep! Also, the Tobi rep mentioned that there is a new system coming out that will calibrate the eyes no matter where Christian is looking on the screen. So he won't have to hold his gaze in a small space for a long time, which is very challenging for him.

This is all very exciting, but Christian is ready! He needs tools to communicate, whether it's switches, buttons, or a computer screen.

I'm taking the whole eye gaze talker in stride. It always feels like I have to prove that he is so smart and that he has wants and he has a voice. So a device like this makes it easier. When he activates it, it shows everyone what I already know. That he counts. That he matters. And that he may just have more to say.
Friday, December 14, 2012


I left the house this morning with a few things to do.

We were originally supposed to take the kids out this morning. It's Lola's birthday today and I was planning on attempting a trip to the nail salon so she could get her first pedicure. And a stop a Starbucks for a strawberry milkshake.

But Christian caught a little bug and it was really cold and rainy today. So we scrapped the plan, I went out by myself, and the kids stayed home with Nana, Christian resting and Lola enmeshed in her new Candyland game.

During my outing I heard about the horrible school shooting in Connecticut. Little kids. Just gone. At that very moment I just wanted to be with my kids.

I left the house this morning with a few things to do. I wanted to get Lola a cake for her birthday because I firmly believe everyone should have cake on their real birthday.

I returned with tiny birthday cupcakes, big hugs, and promises of homeschool.

Only half kidding about that. Okay, about 70/30 in favor of homeschooling.

I know what it's like to have a very normal, conventional life one minute, and then a nearly unrecognizable life the next. Not only was the rugged ripped out from under us, but the floor beneath the rug had caved in, leaving us weak and vulnerable. Literally bringing us to our knees. There were whispers and facebook posts advising everyone to hug your babies tight tonight! And then those who whispered and posted got to return to normal life and we didn't.

Here we are, comfortable in our normal. But with the perspective of being on the other side of normal, it goes beyond simply hugging my babies tight. Today I carefully watched Lola ride a merry go round. I watched her face light up and I watched her wave to her daddy and brother every time she passed. I watched her absolutely love it. I watched her as if it were in slow motion. And I thought about those families who won't have that ever again.

I thought about how other people must think I have it so hard with Christian. He doesn't say, "I love you, Mommy." He doesn't throw his arms around me. But he does snuggle, and he does reach out, and calm when I hold him. That's how he tells me he loves me. He tells me every day in  his own way. I have that. It's not gone. It's here and it's real, breathing softly next to me. Today it's not hard. Today I'm lucky.

My teenager sent me a text that there was a rainbow outside today. I asked him if he meant to send that to me or a girlfriend of his. He said he sent it to me because he knows I like rainbows. I'm still skeptical. But it was a gift.

I think about these kids and these families and, to be honest, I can't fully process it. We've had a challenging week, but all of the sudden, with healthy children safe and sound, texting me about rainbows, looking at me when I talk to them, choosing a rooster to ride on the merry go round, those challenges just don't seem very challenging anymore.

We are so lucky. Life is so very temporary, and so very precious. It's not just a tagline. Things can change from one second to the next.

God bless those families. And, yes, hug those babies.
Monday, December 10, 2012

Christmas Tree Therapy

The tree is up!

And signs of Christmas have unloaded themselves on to my living room windows, mirrors, and ceiling...

Lights are everywhere! I hung them from the ceiling last year thinking Christian might like to look at them when he's laying down. So we brought the ceiling lights back this year and I love them. They look great paired with my coffee filter snow flakes! Lots to look at for all the kids, but especially for Christian.

Something else happened!
Christian put an ornament on the Christmas tree for the first time ever! It took a team to make it happen, but doesn't it always?

Christians OT's and Speech Therapist were there helping him and I'm not quite sure they totally understood just how monumental this moment was but they were a huge part of it!

And he was kind of playing along, maybe actually enjoying it.

Thomas the Tank Engine hangs happily next to Cinderella at the bottom of our tree. Lola and Mommy had a special date last week that consisted of a Strawberry milkshake (Strawberries and Cream Frappuccino), a "brown, coffee drink that's mixed up" (Lola's translation for Mommy's Starbucks drink), and a trip to the ornament section of the store. She chose Cinderella for herself and Thomas for Christian.  

And they lived happily ever after.

I think Christmas tree therapy has been a pretty cool method of therapy. It's totally sensory, it's in Christian's reach, he can feel it, touch it, and see it. And Lola kind of likes it, too.

Oooooh, Christmas tree therapy!

We like!

Sunday, December 2, 2012

Thanksgiving Recap

We are a week out from Thanksgiving and I'm diving head first into the Christmas season. But let's revisit Thanksgiving weekend again because it was pretty great, despite Christian getting over a cold.

Yeah, he got a cold. Remember when we cancelled the surgery because we were all sick and we didn't want him to potentially get sick while recovering from a surgery? Well, guess what...he got sick. Double ear infection, weird seizure activity, spiking a temperature sick. Christian really doesn't get sick that often
(KNOCKING ON WOOD!!!) so when he does, the symptoms always throw me off a little. But when it's all said and done, the fever paired with funky seizures and irritability are pretty much normal "sick" behavior for Christian.

Anyway, Christian had to be out the entire week of school prior to Thanksgiving but with a stiff shot of antibiotics he was on the mend. Just in time for Thanksgiving!

And he wants you to know...

We're not vegetarians, by the way. He still looks awfully cute fending for the turkeys. And you know he got some Thanksgiving dinner in his blends, right?

After the Thanksgiving Day parade I put him in front of the annual dog show. To my surprise he was pretty interested! He vocalized a couple times, stared at the show rather than gazing off, and was waving his hand. So Christian likes the dog show. Who knew?

Every Thanksgiving we always celebrate twice. We have a traditional day with family and then we have another Thanksgiving with friends or sometimes just our little family. We just love left overs of our own. We're gluttons like that. So this "Second Thanksgiving," also referred to as "Friendsgiving" was held in the mountains! We had the opportunity to visit a beautiful cabin in Mt. Lemon, our local mountain retreat. Just an hour up the mountain and minus twenty degrees and we are in completely different surroundings.

Some of the mountain seen here with no trees was burned in the Aspen Fire several years ago and still hasn't grown back.

It was chilly up there and Christian was on the tail end of his cold, so he stayed nice and cozy.

He still got out to breath some of that mountain air...and to eat s'mores.

We had such a fun time and we are so grateful to be able to do something like that with the kids.

After being sick, Christian always changes things up on us. It's like his brain gets a chance to rest a little maybe. He has always been fussy when the evening rolls in. I've talked about it many times, in fact, the primary job of his seizure medication is to calm him so he can sleep. He would get fussy, get meds, and fall asleep. Lately, he hasn't been fussing around that time at all! Usually his fussing is my alarm clock to give him his meds, so it's been hard to remember since he is just chillin on the couch. And he's been staying peacefully awake. Hope this keeps up! I like him joining in on our evening activities and not having to worry about if it's too overwhelming or having him asleep the entire time.

In retrospect, I'm so glad we decided to postpone the surgery. Because he would have gotten sick on top of trying to recover and that would have been a nightmare. Now to decide when we want to go through with it.

For now I just want to focus on the Christmas season. We put up a tree tonight and sister very carefully helped.

I'm uncharacteristically ready for this season. We have a tree up, advent calendars open, and our first broken ornament. Ah, Christmas is coming.

Guess what else is coming! A little girl I know turns three soon and we're celebrating next weekend!

Hint: Think pink.
Wednesday, November 21, 2012

Closer to Fine: An epiphany courtesy of the Indigo Girls.

"Music expresses that which cannot be said and on which it is impossible to be silent."
- Victor Hugo, Hugo's Works: William Shakespeare

I used to think discussing the importance of music and song lyrics was as interesting as discussing the importance of someone else's dream. It's really only fascinating to the person who had the dream.

I also used to think those who professed such love and devotion to music and the part it plays in one's life were bordering on hippie. Artsy, maybe. To which I inwardly replied - Cool story, Bro.

Then the other shoe dropped in my own life, the earth shook under my feet, my life would never be the same. I clung to song lyrics as if it was advice from a paid professional. And one day I looked down and realized two of the tattoos on my body were inspired

I was one of those people. I am one of those people.

So it was to my surprise that I found myself in tears from an epiphany after listening to a song by the Indigo Girls. Indigo Girls from like the 90's? Yup. Those Indigo Girls.

Strange as it may seem, eleven years ago in college I took a class in philosophy of western religions. There was an eager overachiever giving a presentation analyzing a song by the Indigo Girls. The song was Closer To Fine. Now, I admit, I was only half paying attention. But he lectured and analyzed the song, lyric by lyric.

Fast forward eleven years. A few months ago I had just come home from the Near Drown Tribe Retreat in Seattle. I was feeling pretty high on life, elated, joyous, walking on air, you get the picture. One of the women at the retreat created a CD of songs for all of us. They were great songs, too. Four songs in, I hear the Indigo Girls. A song from eleven years ago in that one college course where I was only half listening. So I decided to listen.

Well darkness has a hunger that's insatiable
And lightness has a call that's hard to hear
I wrap my fear around me like a blanket
I sailed my ship of safety til I sank it, I'm crawling on your shore.

Whoa. I was listening. I was paying attention. The first thought I could muster was my struggle with God and the why's and how's. The words reminded me how easy it was to fall into this dark pit and how I knew people who frequently visited that dark pit, some even lived there.

I felt safe in my anger toward God, and then I sank that ship with all my fury. And there I was. Crawling and begging for answers and with none in sight.

Yes, I'm analyzing. Remember? I'm one of those people.

But then the bubble burst, the flood gates opened, the enlightenment commenced. In a good way.

I went to the doctor, I went to the mountains
I looked to the children, I drank from the fountain
There's more than one answer to these questions
Pointing me in a crooked line
The less I seek my source for some definitive
The closer I am to fine

[Bubble Burst]

We go to the Bible, we go through the workout
We read up on revival and we stand up for the lookout
There's more than one answer to these questions
Pointing me in a crooked line
The less I seek my source for some definitive
The closer I am to fine

I literally went from pure elation to tears. Like ugly cry tears. Not sad tears. But a moment of clarity. I had been wondering why I felt so happy and even feeling a tad guilty for it. Now, you all might be thinking that perhaps the way I related to the song was by moving away from God. Seeking Him less.


That's not how I see it at all.

The moment I stopped hounding God and Jesus and the Bible and religion for answers is the moment I was set free. Of course, I seek God in all that I do. I find comfort in prayer. My epiphany wasn't about leaving God or not trusting. In fact, it was quite the opposite.

It was about accepting that maybe I would never get answers and being okay with that. I had been figuratively clinging to God, shaking Him by the shirt and demanding WHY?!?!?!

And then I let go. Because there might be more than one answer to these questions. There might be more reasons than I will ever understand. And the moment I started to accept this, the closer I was to fine.

It was all wrapped up in a tidy little package. A lesson in finding happiness and allowing myself to Let it be - also a song reference, tattooed on my right foot.

There you have it. I am a student of the Indigo Girls eleven years later. I'm one of those people who talks about life through song lyrics. And I'm getting closer to fine.

And thank you for the ridiculously amazing CD, Amy!
Thursday, November 15, 2012

Amazing YES.

So about that surgery...

...we postponed it. Not begrudgingly.

Our household was sick last weekend. Our household minus Christian. He was just fine, thankfully. But Mom was sick. And when Mom is sick, everything stops. Well, I wish everything stopped, but that doesn't really happen, so I just complete was is absolutely necessary.

Lola was sick, too. And her poor little throat gets mighty croupy any time she gets sick. It's very scary. And it keeps her up all night.

My cold + Lola's croupy cough + Lola's 103 degree temperature + My lack of sleep from waking up every half hour + Lola's rapid heart beat and quick respiration + Did I mention I was sick, too? + We have to check in for surgery at 5:30 in the morning for an 8:30 surgery time = Yeah, right. This is not happening.

So we postponed without feeling the least bit guilty. And we didn't want Christian catching any of our yuckies while having to recover from surgery. Something tells me that would have been semi-nightmarish. No matter. He didn't have surgery and he didn't catch the cold (yet). Win-win.

We are also expecting a augmentative communication evaluation soon. This process has literally taken almost a year to come to fruition and I have no idea why. But here we are, no, not this month. January! It might seem like more waiting, and it is, but I don't mind. January feels new. December is so busy they don't even administer evaluations. Fine by me! We are busy, too, so January it is! We did have a glimmer of hope at the prospect of being seen sooner, like today! But then we got a call that they didn't bring the necessary equipment to accurately assess Christian. Wind exit sail. There might be a slim, teeny chance Christian could possibly be ready to test out an eye gaze talker, so what we will do is a preliminary evaluation with eye gaze talker representatives so we'll have even more information for the big evaluation in January.

There is also a study in San Antonio involving brain scans of children with severe non-birth related damage that some of our friends are doing. The study takes high resolution pictures of the brain and evaluates its potential function in a resting state. The goal is to compare it with a typical child of the same age. This has never been done before and it might provide answers to how much the brain of an injured child functions, giving parents and the medical community better insight in how to help children like Christian. That's the positive outlook anyway. It looked like Christian would be a great candidate, but then we found out that having a VNS implant is a disqualifier. Something to do with the magnetizing power of the MRI. Rats! But I'm still excited that there is even a study paying attention and looking for answers in our kiddos. We'll be rooting from the sidelines on this one.

So we got a few NO's this week. It's discouraging. It calls for the box of brownie mix Lola has been asking us to bake for five days to finally make a chocolaty showing. But I'm thankful for the NO's because without them we wouldn't know how amazing YES feels, right?

Oh, and today when I took Christian to school, I wheeled him into his classroom and a tiny girl in a purple shirt ran up to him and yelled, "Christian!" and threw her arms around him. I guess she is a classmate of Christian's and she loves him. He is her favorite. I noticed she had a Thomas sticker on her hand and I told Christian about it. So she took it off and ripped it in half, giving half of the ripped sticker to Christian.

God, I love compassionate and loving kids and I love the parents who create them. It was an amazing YES.

Thursday, November 8, 2012

Surgery Monday.

So I've been kind of ignoring something for a while and haven't mentioned it because of the aforementioned ignoring.

Christian is having surgery on Monday morning.

I kept meaning to at least mention it here and there but I would forget and, again, ignore it. And now here it is. It was supposed to happen tomorrow, but because we have to take extra care of his breathing under anesthesia, it will be Monday morning in the hospital.

The surgery is called a Bilateral Hemiepiphysiodesis for the distal femur and proximal tibia. Hemi-whaaa?

It's a big, long name for a small, outpatient surgery. Yes, I said OUTPATIENT!

So why are we doing this? Well, Christian's hips are coming out of socket. They have been for a while and it's something we know will happen. Christian doesn't have normal weight baring and mixed with high spasticity and tone, hip dislocation is inevitable. One option is a double pelvic osteotomy. This option, through surgery, attempts to put the hip back in the socket. It's a hard surgery and involves a body cast from the waste down for six weeks. Many times, these surgeries have to be redone. It's successful for some, and not for others. It's something we're trying to avoid.

While looking at Christian's hip x-rays, legs, and knees, our ortho doctor suggested this surgery that basically consists of an incision on the inside of both knees. I'm a visual person so these pictures helped me see it better.

If you'd like to learn more about the surgery and procedure, visit

This is what Christian's legs look like.

See how he is knock-kneed? His knees bow in and his bones are growing in that direction.

This isn't just aesthetic. This relates to the hips in that Christian has external rotation. This means his legs extend and turn out. This actually would protect his hips if not for the tone pulling his knees in. His knees pulling in puts pressure on the hips and pulls them out.

So the ortho suggested doing this surgery to take pressure off the knees. Presumably, this will take pressure off his hips and straighten out his legs. The whole point is to stave off a the big, bad hip surgery for as long as possible.

We'll go in Monday morning and take him home right after surgery. Recovery will hopefully be quick. Please keep us in your thoughts and prayers Monday morning.

Sunday, November 4, 2012

All Souls Procession - Celebrating the wonderful.

It was the annual All Souls Procession! It is my favorite parade of the year!

The All Souls Procession is in honor of the Day of the Dead and it's become kind of a big deal in Tucson. It comes from the Mexican tradition of honoring and celebrating loved ones who have passed.

This parade is kind a Day of the Dead inspired mish mash of community outreach, political causes, traditional Mexican culture, paper mache floats, mobile shrines, fire balls, and people on stilts. It's wild and quirky and with heavy drum beats and Mariachi music serving as the background, I enjoy every minute we're there. I say that, specifically, because we always get there late. But I digress.

When people think of the Day of the Dead they think of skeleton faced bride and grooms. They think of folksy figurines and trendy t-shirts. Yes, the parade does have a fun and upbeat atmosphere. That's why it grows every year!

My munchkins were totally impressed. Can't you tell? Actually, Christian is tired and Lola is a little freaked out. Skeletons aren't her favorite thing but she got used to them after she noticed all of us in skeleton face and then everyone in the crowd in skeleton face. Her only requirement was that we use the color pink. So she got a pink heart on her forehead.

The parade is definitely a sight to behold. But the basis of this parade has a deeper meaning that goes beyond what people might think of this celebration. People who walk in the parade actually are mourning loved ones. They are celebrating their dad, their mom, friends, and children. All of the sudden, the celebration is entirely too meaningful to be just trendy.

We got to see Ben's Bells! And if you look toward the middle-bottom right, you'll see a picture of little Ben, who inspired the whole kindness movement. They're remembering and celebrating him.

This procession comes at the end of a tough week in the near drowning community. We lost two of our survivors - Collin and Madison. So it seemed appropriate that I remember them. I wrote their names on my arms and carried them with me.

I read a blog of a woman who recently lost her daughter, Eva, a few months ago. Eva was a classmate of Christian's last year. Her mom beautifully expresses her feelings of missing Eva and quotes the movie, Steel Magnolias.

"I would rather have 30 minutes of wonderful than a lifetime of nothing special."

Tonight was about celebrating the quirky, the folksy, the crazy, and the trendy.

And all the wonderful, too.

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!

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