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Thursday, April 25, 2013

Kindergarten for Christian!

Kindergarten is on the horizon! 

(Can you believe that? Because I can't. He's still a baby!)

We're done with IEP meetings and goals and I've toured two kindergarten classes and two schools.

I have to admit that touring the kindergarten classes was a little overwhelming. It is definitely way different than the kindergarten I attended. I went in to see kids maybe in circle time or coloring. What I actually saw were kids learning on iPADs and projects involving butterfly chrysalis (I had to google that spelling. Maybe I should go back to kindergarten.)

If I'm being honest, it's hard for me to envision Christian's place in a classroom like that. But I also remember feeling that way when I toured the preschool class and the preschool experience has been an amazing adventure for Christian. He just loves being around all the kids and they love him so much! They greet him every day, in fact, just today his little friend ran up to him and put his picture of a fireman in Christian's face to make sure he saw it. And yesterday I found a little folded up picture in his backpack. When I pulled it out, I saw this:


That's Christian's little friend. She drew him a picture of herself holding hands with him. That's his wheelchair with all four wheels. 

Be still my heart.

We'll miss preschool so much but kindergarten is ahead! And we've made the final decision about where Christian will go.

Luckily, our district has what is called a cluster program. This allows children to join in mainstream classes when they can and then break out for individual learning and therapies. This is what Christian will do. He'll probably join in for everything social like music and library and then break out for PT and OT. This is the best of both worlds. 

I briefly thought about looking into the type of program that is primarily for children with special needs, however, for as long as it's right for Christian, I'd like him to have exposure to typical children as much as he can. He thrives off of it and I think it's really good for the other kids, too. I think we'll know when and if the time is right to move him.

The school we chose is a block away. I can hear the morning announcements echoing from my bathroom window! And this school has a long history of being the first elementary school in the district to have a special needs/integrated/cluster program. They also get a brand new, handicap accessible playground for the kindergartners! We met the incoming director of the special education classroom and she is genuinely interested in really getting to know Christian. I'm so excited for him and I feel really good about this.

School has been one of the best things for Christian and his progress. He has become more tolerant of noise and action, he really enjoys being out and about now, and he has become more vocal! I think it has a lot to do with being around noisy friends at school.

And Christian? He is doing so well. It's more than I could have asked for. I just wanted him to smile and the rest would be extra. Now he's not only smiling but smiling in response to what we say or what we do. If we show him something he likes, he'll give us his half smile. If I tickle his leg or his cheek, he smiles. The other day I told him Lola brought his stuffed frog with her to pick him up, I showed it to him and he smiled. His daddy picks him up and bounces him around, spins him in his chair, and he smiles. He has even done what we think might be laughing when he gets spun!

He's also "talking" a lot! For a kid who was completely silent for months then only cried and sobbed for years, vocalization is like...well...a miracle! It is like music to my ears waking up and hearing him making sounds in his bed. Even better is when he vocalizes in response to when someone talks to him. 

Just when I think that's all he's got, he shows me more...almost four years later! He is such a lesson in hope and never giving up. Never underestimating. He is just amazing.


"Motherhood is about raising-and celebrating-the child you have, not the child you thought you would have. It's about understanding that he is exactly the person he is supposed to be. And that, if you're lucky, he just might be the teacher who turns you into the person you are supposed to be." 
~The Water Giver~

(Courtesy of my friend, Sarah's, emails. I think about this quote every time Christian teaches me something. Which is pretty much every day.)







Friday, April 19, 2013

Miracles happen every day.

It's the end of the school year and it tends to get a little busy around here.

We're in the process of deciding what kindergarten will look like for Christian and now that I have most of the information I need, I'm getting really excited about it.

I'm saving that for the next blog post, though. Right now it seems like so much is going on in the world that it's hard to be all "business as usual."

I've developed this bad habit of falling asleep around 11PM on the couch and then waking up at 2 or 3 in the morning. This has happened for two nights in a row but I woke up to the blaring news of a Texas explosion two nights ago and coverage of the Boston Marathon bomber hunt last night.

What is going on?

I know that's not a very original question and everyone else is thinking it. It makes me feel old just thinking - What is this world coming to?

I think during these times of uncertainty it's important to look for the good. It's hard, but I think it's necessary. So maybe "business as usual" isn't such a bad thing to do.

What I want to reiterate is something like - Hug your babies. You never know what each day will bring. Be thankful for what you have. Praying for everyone. But it all seems trite and repetitive. 

So I'll tell you a story.

Gina is a mommy friend of mine. But she's extra special because she's a near drown mommy friend. Her daughter, Madison, grew her butterfly wings and flew home last November. 

Since then Gina has been passing along things that helped Princess Madison so these things could help other children. And she sent us something that is really, really, REALLY going to help Christian.

But in that box she also sent along something else that hung in Madison's room. 


Now it hangs above Christian's bed. An angel watching over him. 

Miracles big and small really do happen every day. Some days it's harder to recognize them than others. And some days you have to look really hard to find them. Gina, a mom who truly lives the reality of not knowing what the next day will bring, sent along this little reminder. 

I know this story sounds sad, but it's not. Well, maybe it's a little bittersweet, but what I really want to pass along is to embrace the miracles. Look for them. Cling to them. Claim them as your own. Some days that miracle for some may look like just being able to get out of bed in the morning. For some it may look like the first time their child laughs, crawls, or walks. Or maybe the miracle is in giving to others when you are in so much pain or seeing a crowd erupt with a full blown version of the National Anthem before a hockey game.

Miracles can be found in every situation if you look for them.

This one is hanging above Christian's bed.

Thank you, Madison and Gina!




Thursday, April 11, 2013

Okay-ness.

Does my okay-ness offend you?

We are okay.

No, this isn't what I envisioned for myself or for my family, and definitely not for my little boy. But it's our life. And we've claimed it as ours. And, you know what? We're happy with it.

(Gasp!)

How could she be happy? How is she so okay? How dare she be okay?

I am okay and sorry I'm not sorry about it.

We're all okay and if that offends you, maybe you should get happier. 

I understand that when I tell our story, unsuspecting strangers are punched in the gut. They're dealing with it for the first time and it makes them sad. 

I understand that we've had almost four years to be okay and those unsuspecting strangers haven't had time to process but I really don't need you to be sad for us. And I don't want you to be sad for yourself either. 

The truth is that more things in my life make me happy than make me sad. Christian's smiles make me happy. Lola's singing at the top of her lungs makes me happy. Gabe getting excited that I remembered to buy bacon cheese bagels at the store makes me happy. 

The ferocity of support from our friends and cheerleaders rising up like a wave out of the ocean to defend and go to bat for us makes me happy. More than happy. That wave carries us and erases all that is negative and bad.

How can I be sad, really? I have friends and family, food to eat, a roof over my head, my kids are here to kiss and hold. What is there to be sad about?

Here's the thing...life goes on with or without you. You can either go happy or go sad. One thing that irritates me is a person that can't deal with life. A person who has nothing to be sad about but still finds a way to find the sadness in any situation possible. Maybe it's comforting to them. Maybe sorrow is comforting and happiness is scary. So if they can't get happy, how dare I get happy.

Well, sorry I'm not sorry we're happy. And not the fake Facebook persona kind of happy. Really, truly, happy.

Bad things happen in life. Really bad things. But we've made the choice to feed the good wolf. We've made the choice to at least attempt to overcome. You know, bloom where we're planted, use what we have, rise like a Phoenix. 

My hope for this blog is to not only share our journey but to help other families understand that after the dust settles it can be okay. It won't always be sad and there is happiness on the horizon. Some days you may need to look harder for it than others but, I swear, it's there.

You are worthy of it. I am worthy of it. And it's nobody else's business otherwise.
Thursday, April 4, 2013

Christian is starting kindergarten!

Get ready. I'm about to blow your mind.

Okay, maybe it's blowing my mind.

I'm just gonna say it...

CHRISTIAN IS GOING TO START KINDERGARTEN IN THE FALL!!!

I can't even wrap my brain around this and the only thing reminding me is that I had the first portion of his IEP meeting for full day kindergarten beginning in the fall this morning.

Full day? Are you crazy? I guess he is going to be five. And he did just loose his first tooth...

Oh yeah, HE LOST HIS FIRST TOOTH!

He didn't loose it so much as I pulled it. Christian's teeth are all kind of loose in his gums. Nothing crazy like any will just fall out or anything but they're weak because they aren't used regularly to chew or talk. So they're not as strong and for that reason I keep a close eye on those suckers.

I was brushing Christian's teeth the other day and I noticed his tiny little tooth rocking back and forth. None of his teeth are THAT loose. But this little tooth was wiggling away. He fluttered his tongue and pushed against it and it popped forward. It was a genuine loose tooth!

I couldn't just let it hang out there like that because it was for sure a choking hazard. So I pulled it! Eeeeew! I've never pulled a tooth in my life. Not even my own when I was little and loosing teeth. It just skeeved me out. But I sucked it up, grabbed a tissue, wiggled it a little, and out it came with no effort. He didn't even flinch.

Loosing a tooth, or shedding any of his baby attributes in general, is really bittersweet for me. It's a piece of the old Christian. I can't help but think about that. It was one of his first teeth. Right on the bottom. It's tiny like when it first came. It chewed his first solids. And now it's gone. It stops me in my tracks a little. This whole issues is the reason I can't part with a single piece of his baby clothing.

On the other hand, he's growing up! And it's an age appropriate, normal occurrence, albeit a tad early. And we celebrate any normal occurrence in this house.

So his official IEP meeting for kindergarten is Friday. And I'm thinking about what to bake. Yes, I bake for IEP's. It makes everyone happy to get doped up on sugar at 830 in the morning. I'm thinking Blondies and Nutella filled sugar donut muffins.

Wish us luck! Maybe we won't need luck. We have sugar!

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