Excitement to come!

After a long, hot, never-ending Arizona summer, cooler weather is coming. Or so the news would like us to believe. I'm still excited. Pumpkins, apple picking, trick or treating - there's a lot to be excited about! I love this time of year because the weather isn't extreme and we can do things outside as a family.

But pumpkins and apples aren't the only thing we're excited about around here! Next week I'm digging my sweaters out of hiding, packing up my rain boots and heading to Seattle for the third annual Near Drown Moms Retreat! I am so excited! I love these ladies. They all know the deal. They all walk the path. And it's just a chance to take a break, relax, connect, and refresh. I am so excited but starting to get that anxiety about leaving the kids and hubby again. Is it weird that I miss them already?

Christian is doing really well! He looks at me when I talk to him, he's been grabby hands lately, and he even hooked my sun glasses and pulled them off! He's been talking to his speech therapist at school a little more and I hear he has a crush on a little girl in his class. Not surprising.

More excitement occurred last week when I found out I was the winner of the Dancing With the Stars: All Stars Super Blogger contest! I entered the contest run by our local ABC affiliate by writing in a short essay explaining why I would be the ultimate Super Blogger. And I won! Well, obviously, I love the show. I've been watching it with my aunt forever. We've watched it through my pregnancies, births, health issues, moves, and everything with Christian. No matter what we were going through we have always found so much happiness in this show. I mean we cheer, we laugh, we are so into it! And I love writing, especially about things I love, so, of course, I'd love to blog about DWTS!

The contest was run in 12 different markets (kind of like cities) and the grand prize is whoever has the best blog out of those 12 markets gets to go to the finale taping in LA! I'm dying! That would be so fun!

I found out last Friday I won and I wrote my first blog last night, which published this morning. I'll be blogging for the next 10 weeks of the season!


http://www.kgun9.com/DWTS/

I run because he can't.

I think everyone should do a 5k.

Don't like running? Who cares?! Do it anyway. Walk it, run it, crawl across the finish line. Just do it.

I know, I'm coming off a 5k high. For the record, I couldn't see us doing a 10k, but I'm quite content with just going around from 5k to 5k and enjoying our little accomplishments.

Crossing that finish line with family, with friends, with Christian, it leaves a high feeling. The I can do anything feeling. Or a - I'm going to eat Chocolate Brownie cookies all day because I just completed a 5k, world! - kind of feeling.

Really and truly, I fell in love with running these 5k's a year ago when we first committed to joining MyTeam Triumph for their first run. Even better...Christian would be our "Captain!"

Running these 5k's is very much like our life, or any life for that matter. And because I love an analogy, well, let me dive right into one.

While running, I had so many thoughts of the way our lives were, how the past three years have been, and how life is now. The beginning of this last race was so easy. We were doing so great! But we didn't realize the wind was helping us until we turned in the opposite direction and we were head on with that very same wind.

There were parts that were smooth and parts that were bumpy and parts where we had to slow down and rest. We pushed through it, we helped each other out, we cheered for ourselves and for other red shirts we saw along the way, and we laughed, too. Like life, right?

The whole thing inspires me. Every single run with those red shirts inspires me. I'm inspired by the friends, therapists, parents, and other loved ones who run because our kids can't. They push these kids over that finish line. They give up their own sweat, endurance, and strength so these kids can have a piece of being able to participate.

I'm inspired by our kids who give us reason to keep pushing against the wind. In the race and on the living room floor with their favorite PT.

I'm inspired by the two "Angels" on our team who chose to pick this 5k, with Christian and his buddies, to be their first 5k ever. It was inspiring to see them cross the finish line for the first time.

I'm inspired by us, as a family. We don't stop. We keep moving. We keep loving and helping each other out, and cheering, and laughing, continuing over the bumpy parts and pushing against the wind. Life isn't always easy with the wind at our backs helping us along. It's ever-changing, always evolving. But for that moment at the end of the race when we cross the finish line, we have reached a happy ending. It's something to celebrate.

If you get down to the meat of why I love running with MyTeam Triumph...

I run because Christian can't. For the span of the race, he has legs. And he gets to fly.

Besides, my baby may not be able to run, walk, or even crawl. But he has completed THREE 5k's with MyTeam Triumph. THREE of them! I mean, how many four year olds can say that?

Team Christian!

Today was the day!

It was MyTeam Triumph 5K day!

Just to refresh your memory, the way it works is Christian is the "Captain" and we, his runners, are his "Angels." Daddy has an injury he's resting and Gabe has early Saturday morning football practice. So I enlisted amazing ladies to help Christian reach the finish line. Going forward they will be referred to as "Christian's Angels."

Is that Christian bundled up in MyTeam Triumph red, you ask? Why, yes. Yes, it does get really cold before the sun comes up in Southern Arizona. So Daddy wrapped him like a little red chili burrito. He was diggin' it.

Lola, on the other hand, is not exactly a morning person.

Baby Burrito!

Getting ready at the start line. Can you find Christian?

There he is!

If you're wondering if Christian is riding in his own chair, you'd be right. The attachment swivel wheel was supposed to be for another little girl whose family was thinking about running. She was on a vent so it was really important she stay in her own seat so it could accommodate her vent. Manny created a piece that would attach the wheel to the already existing Zippy base that was similar to Christian's wheelchair. So we got to be the guinea pigs and test it out earlier this week. It turned out that the family ended up not running so Christian got to try it out for the actual 5K! It handled so well! It swivels and turns so smoothly, it's easy to push, and the important aspect of all - Christian was so comfortable! Not a peep out of him. Last year he got a little upset about some of the bumps and toward the end he started to whine and extend his arms and legs, which means he is done. But with this chair, which is his chair, custom for his little body, he was perfectly comfortable. I loved it and can't say enough good things about how this adaption turned out.

Thanks, Steve King and Daddy for making it possible for Christian to enjoy the race more than ever!

Back to the races...

Almost there!

Go Emily! Pushing Christian in PT and pushing him in 5K's. Best PT in town!

And here we are! Christian's Angels heading toward the finish line!

All done! Team Christian rocked it!

Perfectly Imperfect

I think this "family portrait" is one of the cutest stinkin' things to ever come out of preschool in the history of preschools. Ever.

Not only does it have our family (minus Ruby, the dog), but each of our little heads are made from Christian's very own finger print. Holy cuteness!

I also thought it was funny that we were all painted with blond hair. Two possible reasons for that. One is that the school really only sees me and the two munchkins and we're all blondies. The other reason, probably more likely, is that whoever was helping Christian with this picture had a yellow marker in her hand and that meant we all got yellow hair. Would have been the same if she had a purple marker in her hand. Either way, still way cute.

Another one of Christian's masterpieces from last year...

All the kids from Christian's preschool class had their masterpieces in a little school art show last year. So I keep this one on the refrigerator. A little girl was at our house and she asked, "What's wrong with that flower?"

I thought her question was funny, actually. I mean it's a reasonable question. Obviously, those flowers were supposed to be big red hand prints.

From this work of art I can tell that Christian was not idly sitting by, allowing for his hands to be molded into a perfect high five. He was resisting. That's what I see in that picture. Resistance to the big red hand flowers. And it makes me laugh.

So nothing is wrong with it, little girl. It's perfectly imperfect.

I have a problem with collecting art work of Christian's. I've gotten it to where I'm at least purging the colorings that are merely smudges or crayon scribbles. But I have a compulsive need to keep everything he ever creates, even if it's with the help of others.

Which results in the following picture:

That's all from last year. It's the best of the best. My favorites. If you look closely you'll be able to see the seasons, passing you by. You've got fall leaves, a Halloween spider, a Christmas tree, a four leaf clover, a fish, and, folks, this is not the end of it. It's just all I could fit in one frame without backing up too much. And, again, it's from last year!!!

P.S. I have a building stack of perfectly imperfect, beautiful, genius masterpieces already from this year, which includes his absolutely adorable yellow haired, finger print family.

Time to streamline so my kitchen wall doesn't turn into an 8th grade magazine collage.

Art wall to be continued...



Everything.

Last week we had Christian's annual check up with his pediatrician. I kind of like this appointment because it's so benign and...normal. Just like all the other kids who turned four, Christian got his four year check up, too.

I was relaxed going into this appointment. But in the back of my mind sat the issue of weight. Did he gain enough?

Gaining healthy weight is a concern for most parents but when your child is fed through a tube, it becomes an entirely new beast. And then when you make the decision to start a blended diet, it's put up or shut up.

Why so dramatic? Well, I think doctors, specifically GI doctors have this attitude that if we are not going to follow their orders or recommendations - the status quo - well, then have at it, crazy parents! At this point, we as parents set out to prove that we've got this! We know what we're doing. But it becomes very complicated with a child with special needs. Because we rely so much on medical advise, when we decide we want to take things into our own hands, there is a need to prove we know what we're doing. 

So when I set out to do the blended diet, I was dedicated, I tried to learn as much as I could, but it didn't prepare me for what happened in the beginning. He immediately lost weight. The former GI doctor was concerned. Hell, I was concerned! Kids aren't supposed to go backwards in pounds, they're supposed to go forward. The GI doctor told me I could never match in food calorie for calorie what I could give him in formula. It was "complete nutrition." Yes, he used the word never. And complete nutrition. I mean with that kind of reasoning, why aren't we all drinking cans of vanilla flavored formula. Sounds delicious, right?

Anyway, I freaked when he lost weight. I took it completely personally. I was, after all, directly responsible for his source of food. I chose the food, I blended it, I added the calories, I fed it through the tube to my son. So I was responsible!

Then I heard weight loss tends to happen initially when switching from formula to whole foods. That was comforting, I think. But when exactly was he going to start gaining again? I mean, with the occasional bouts of throwing up, the initial weight loss, how was this going to remedy itself.

And then it did. I can't remember when, but eventually I stopped worrying. I just kept adding healthy oils and fats along with the rest of his balanced diet. I made him food like I would make any normal four year old food and we kept moving forward.

As I mentioned, Christian's four year check up was last week. The time came to weigh and measure him. I knew he had to have gained because he felt heavier. And then I got the numbers.

34 pounds and 41.5 inches. That's a gain of four pounds and five inches in one year, Ladies and Gentlemen.

Ah, vindication, you are so sweet.

Not only did he have an appropriate weight gain but it was right along with his curve. I was elated.

So there you go. My boy is growing just fine.

And today was picture day at school so it was only fitting that he would wear a new outfit. A button down shirt with a collar. Since he was too handsome to let it only be seen by me (and his school, of course), I decided to snap some pictures while we were bouncing on the yoga ball.

I wanted to get some pictures of him lifting up his head since he is so great at it on the yoga ball. I had to practice my acrobatic bouncing Christian on the ball while snapping photos on my phone skills.

I think I may have captured my favorite picture of Christian. Ever.

This might just look like yet another picture of my handsome son. It's more than that to me. I prayed every day and every night for two years to see happiness in Christian's face. Just a smile, a facial movement, an eyebrow twitch, something. Anything.

I can't stop looking at the picture. I see happiness. I see joy. I see - Mama, look! It's me! I'm here. I know it's taken me some time, but I've always been here and little by little I'm coming out. You'll see, Mama!

The picture above is not just something.

It's everything.

Orange jacket.

We just finished up Christian's second week of school and he's doing pretty well. There is an extra day this year so now he is attending four days a week. He is a pretty tired little guy at the end of his week.

As Christian is getting bigger, it's more and more obvious that he isn't like the rest of the kids that go to school. Especially when he is a brand new four year old who looks like he's much older!

Christian gets a lot of stares, which is fine. That doesn't bother me. Kids are unconditionally curious. And more than once we get unfiltered, honest questions from the mouths of babes. The number one question is: What's wrong with him?

My brain always stumbles with this one. How much information do I give? Is this two minute meeting with a small child at school really a moment to teach about the ramifications of brain injury or the importance of pool safety? No. So I don't really know where to start. Good thing small children need only simple answers. Although, sometimes those are the hardest to come up with, I've had some practice in the last two weeks.

I usually start with saying that Christian's brain is different than their brain. I say that it doesn't allow him to walk or talk but he can still understand everything. Then I tell them his name is Christian and he is four years old. Sometimes that's enough of an explanation and sometimes I get, "But, why is it different?" This is a moment where I just wish I could say, "Because he was born like that."

Those kids...they teach you something every day, even if just in passing.

Remember when I complained about kids being cruel and mean at the end of last school year? Well, kids can be pretty awesome, too.

Yesterday, while pushing Christian to the car and leaving for the day, we passed a little boy, no older than six. He was alone and probably walking back to his classroom from lunch. He had a very bright orange vest that indicated he had been given some important assignment to lead his class. When he saw Christian and me coming toward him, he stopped in front of us, approached Christian, and gave us his miniature version of an interrogation.

Orange Jacket: "Hey, what's wrong with him?"
Me: "He just has a different brain than you. But his name is Christian and he's four years old. He goes to school here. What's your name?"
Orange Jacket: "Matthew." (Smiles.) "Why he can't walk?"
Me: "Because his brain doesn't let him."
Orange Jacket, peering at Christian and getting closer to him: "Does his eyeball sometimes go to the side?"
Me: "Yes. Sometimes he likes to look to the side. Say hi Christian."

Let me just interject and say that Christian can be totally in tune with kids in his age group and will reach out to them. So when I was telling him to say hello to the little boy he was reaching out toward him.

Orange Jacket: "Hi, Christian!"
Me: "Look, he's trying to say hi to you. He's trying to grab you."

And then Orange Jacket puffed out his orange jacketed chest and moved it forward so Christian could get him. Boom. Acceptance. He would play along. It was decided.

Me: "You got him, Christian!"

And then Orange Jacket got close to Christian so they were face to face and yelled, "You got me! You got me! YOU GOT ME!"

We said goodbye and Orange Jacket ran off to his classroom.

I never know how to answer impromptu questions that come from adults or kids. But I'm learning and I'm sure I'll get better at it. Funny this happened yesterday because my friend posted a link to an article about how to ask questions and how to answer them about being in a wheelchair. (Jenny, you must've been reading my mind.)

How to Answer: Why are You in a Wheelchair?

Make you see.

I'm not a fan of doctors appointments for Christian, you may have noticed.

Mostly because I go into it with opposing emotions. Part of me wants the doctor to see how much Christian has grown. I want the doctor to see that he can communicate, that he can be interactive, that he will look at you if you talk to him.

On the other hand, the opposing emotion, worries that he won't show them what an awesome kid he is. They won't see it. They'll see a patient. A four year old boy with severe brain damage that won't look at them when they say his name. And, although they try to look as detached and clinical as possible, I can see it. It's the hint of devastation they feel for us. They don't see who Christian is.

So on one hand I look forward to these appointments, but on the other hand I dread them because they tend to cause me this weird anxiety and I couldn't seem to figure out why.

I also feel the same emotional opposition when strangers first meet Christian. I wonder what they'll think. Will they be able to hide how they feel? Will they look sad and devastated? Will Christian make eye contact? Will he give them what they want when they say his name? Will he respond?

Then I read a friend's blog about her daughter and she hit the nail on the head. The anxiety, those opposing emotions, come from the desire to make them see.

I want to make the doctors see him. I want them to see he speaks with his eyes. He communicates with his grunts. And when he is interested in something, he looks.

I want new people to see that he isn't this child in a vegetative state, staring off into space instead of responding to their enthusiastic hello. I want them to see he is really in there.

I think if I'm being really honest and digging deep down, I constantly feel the need to prove that he is worth it, that he deserves to be here, that he was worth saving, and that if you give him a minute, he'll show you.

But, alas, most people won't see. Doctors and strangers only spend fleeting moments with Christian. And I've discovered something about my boy that I suspected a while back. He will not engage if he doesn't know you.

We went to our neurology check up a few weeks ago. These are the appointments I really want him to perform and show off everything...anything...he can do. And he never, ever does!!!

We were in the room waiting for the doctor, I was talking to Christian and showing him my phone. He likes smaller things with light, so anytime I hold my phone up, he pays close attention. I flipped through pictures, having his attention the entire time. I put the phone down and he grunted in disagreement so I brought them back and he stared at each picture as I flipped through. Colorful light and bright smiling faces of his sister, and handsome pictures of him. He was fully engaged.

Then the doctor walked in.

And Christian shut off. He turned his head to the side and powered down. He would not show off. He would not engage. Christian had left the building.

I didn't say anything to the neurologist about how he was just fully engaged in the viewing of pictures on my phone, tracking each one carefully. No use. I would then be seen as the crazy mom who sees things that aren't there. We talked, kept it pretty clinical, they asked how he was doing and I said great and I'm sure they were like - Yeah, okay, lady.

I always leave those appointments thinking - Why don't they see? How can I make them see that he's this completely awesome kid if you just give him a second? Oh, well. It's always slightly anticlimactic and equally disappointing.

Then we started school. The second day of school he seemed tired. When I walked in he was checked out, turned to the side, but when I started talking to him, all of the sudden Christian was back and listening and paying attention. The OT even said that she couldn't figure out what was wrong and wondered if maybe he had stopped tracking over the summer. But then saw that he just didn't want to participate! Because when I showed up, he was looking everywhere I was. Stinker!

So what I've learned is that if he doesn't know someone, if he's in unfamiliar surroundings, or even just tired, he will shut down and won't engage. It's not that he can't. It's that he won't. What a little stinker!

But here's the thing...if you give him a second, if you get to know him, he's in there. He has an opinion. He'll look at you. He'll engage. He'll make you see.

Aaaand he's looking at the phone again.