See Christian and Lola's ISR video!

Thursday, February 27, 2014

Moving {On}

So we moved.

When moving commences things are unearthed from the dark corners of the closet. You repeat phrases like, "How did we accumulate so much stuff?" and then you pack it up and move all that accumulated stuff to the next house's dark cornered closets. Or am I the only one?

I was pulling stuff out of dark cornered closets and out from under dressers where I'd shoved old memories I didn't know what to do with. The whole process of moving makes you revisit things and decide whether you'd like to keep them as part of your life or toss it and move on. It's tiring, it's lengthy, it always takes longer than you think, but when you're purged and moved into somewhere nice and clean and new it feels good. That's when growth happens.

We never quite unpacked in the last house. We were there less than a year. Let me tell you the story of this house.

Our good friends owned the last house we ended up renting. They bought it to rent out when Christian was just a baby, pre-accident, and when we weren't looking for anything to rent. Manny did some work on the house to get it ready to rent out and I went over there a few times and thought it was a cool house. It had a pool outside and fruit trees, it was tri-level like my aunt's house in Colorado, which I loved. But, again, we weren't looking to rent at the time so it wasn't something I spent too much time thinking about.

Then a few years later, post-accident, when we were looking to rent we asked if the house was available. It wasn't. I think we might have asked every year after that. It still wasn't.

Then last year it was available. Just like that. So we moved into it right away.

But it has stairs.

So? We aren't letting stairs get in the way. We'll just carry Christian up and down those stairs. No big deal! He's not that heavy, anyway.

But the pool? Aren't you scared?

No way! We aren't letting this scare us out of having fun with our kids! Christian loves the water! Now he can have some pool therapy and Lola can practice her swimming skills. We'll have parties in the back yard like before. We'll put up a fence, we'll put an alarm on the door so it sounds an alarm every time it opens and closes. We'll nail the doggy door shut. It'll be fine!

So we did all that. We carried Christian up and down the stairs to his room every day. We secured the pool area. It was on lock down. And, yeah, there was a doggy door that stared me in the face every day. But it had a very symbolic bolt through the latch so it would never be opened. We didn't have as many pool parties as we had long ago, pre-accident. In fact, no matter how big and bad and tough I thought I was when it came to having a pool, no matter how brave I tried to be telling myself I wasn't going to let it stop us from living our life, it didn't stop the ominous feeling I had when I looked at that pool. It didn't erase the imagery. It didn't give me warm, fuzzy feelings.

We tried it. We tried to go back. It wasn't just with the house but with a few other things that came up over the last year where I think we tried to do things like we used to. We thought for sure we could go back and it would be fine. But sometimes you can't go back. It doesn't make sense and it no longer works. We're a different family. And it will be that way forever. The rental became a symbol of a whole lot of trying to go back and be that "normal," fun family we used to be despite wheelchairs and therapies. It was a house with stairs that I wanted us to live in long ago but it didn't work. And sometimes when you try to go back, it just doesn't work. You find out that stairs are absolutely ridiculous with a wheelchair and pools just might always be ominous.

When we found out we were finally in a position to buy, it was momentous. We decided immediately we wanted no stairs and no pool. When we finally packed up it hit me that this felt just so right. Like I mentioned at the beginning, we never really fully unpacked when we moved into the rental. So packing up, although it wasn't the funnest thing, it was easier. Because we never belonged there.

Looking back over the past year I realized we had so many tests and circumstances where we tried to go back and we were proven time and again that we didn't belong in the past. We are different. Forever and ever we are different. And you know what? That's totally okay. Moving on from all the things I thought I wanted, moving on from the fear, moving on from things that don't work or things that don't make sense, it all feels very cathartic. And maybe we're not the old "normal," fun family. We're now different and fun. Definitely still fun.

Where we are now? This is home. It's where we fit.

Friday, February 21, 2014

An Update at Long Last!

I can't believe it has been so long since my last blog post. After I lost the domain name for my other blog at Momma Candy, I had to step away from blogging for a second. Not only that but the beginning of this year was like shooting a cannon ball out of a cannon. Non stop!

And we moved!

Yes, again. Yes, it's been less than a year. There are many reasons we moved again but the main one was that we used to rent and now we own! The last house we were in had stairs and levels and more stairs. So we quickly found out that living in a house with stairs was absolutely ridiculous. Know how many stairs the new house has? Zero.

Christian also has his own room now. No more sharing with sister, as if either of them cared. I can't wait to share pictures of everything. But right now we're still putting things up on the walls and clearing out the last few boxes. This is home and we love it.

Christian is doing okay. The insurance he has enrolled him in a clinic that we'd heard of that other children with special needs attended. I've heard of these centralized programs where you go visit for the whole day and you're seen by several different doctors in the same day. Kind of like a one stop shop. When we first got out of the hospital I just started making appointments. I didn't wait around for anything. This created our own network of doctors we handpicked and a scheduled with appointments I scheduled when we needed them - neurology, orthopedics, pediatrician, additional therapies. But I always wished for a place that was a little more inclusive, where other children with special needs attended, with specialists, maybe a physiatrist. This is the place! They also hold wheelchair clinics and a CP clinic that might be helpful.

However, I'm already seeing the downside. They make all my appointments. I forget them all and I don't get upset about it because, frankly, I hate appointments. I feel like I've lost a little control and that bothers me. I purposely shelter us a little so that we can do our own thing. He's a little boy and we're a family. Not a medical patient and a science experiment.

My first impression of this clinic was - Wow! It really was built for children like Christian. And there were other children like Christian there. So this is where they had all been hiding out! It's what I had envisioned and seen from friends in big cities with their children.

On the other hand, I felt a little like we were under observation. Of course, that first appointment is a getting-to-know-you appointment. But we spoke with a new pediatrician (not sure why, I have no intention of changing ours), we spoke with a nutritionist who was whispered to behind a closed door that we were doing the blended diet. Luckily, she seemed supportive. But suggestive. Have you tried this? Have you tried that? We're good. Thanks.

We also talked to a social worker, which is routine for the first appointment, I guess, but it felt weird.

So I'm giving this clinic, centralized, one stop shop thing a go. We'll see how it turns out.

Christian has been doing well in school, working on communication, and he's super tight with his fabulous aid and teacher who would move mountains for him.

I am, however, concerned about his seizures. For some reason they've become stronger and he has even lost his breath a few times. That's kind of a deal breaker for me. The only thing is that it's paired with congestion and phlegm that don't seem to be tied to any kind of sickness. Probably just allergies. So I'm wondering if I should wait to see if it passes or call the neuro tomorrow. I think I'm going to finally call. This isn't passing and I have no idea why. I'm afraid he's going to tell us we need another EEG. For what? To find out he's having seizures? We already know that. Do we increase meds? Great. Whatever it is we have to figure out something. There are seizures we can live with and these aren't those.

Other than that, Christian is plugging along. He didn't get to go to school for Valentines Day because of the seizures and congestion but we did put together our annual 3E Love Valentines and dropped them off for his class. When he came back to school he had a backpack of Valentines and candy!

It's warm here now and we're experiencing some beautiful weather here in Arizona. But back when it was cold Christian could really rock a beanie. Dude.

Christian also got an award at the beginning of the year and we love celebrating this. Sister is so proud.

Despite all the seizure nonsense, we can still be thankful that Christian is doing okay in most other ways. He is still "talking," he still smiles, and he is so loved. 

I've got more to write about like more about our move, what Christian got for Christmas (and my annual gift guide for children with special needs), and some other things on my mind. Promise it won't be another month until I update. See you soon!

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