See Christian and Lola's ISR video!

Thursday, June 28, 2012

Summer is bringing it.

We are thoroughly enjoying our 100+ degree summer days, and the beginning of our monsoon evenings. A lot of people complain about the heat here, but I don't mind it. At least not until maybe September. Then I'm done.

Summer is bringing it with some pretty awesome stuff lately.


We got respite hours! Actually, that happened months ago. But we haven't used it until now. We don't have nursing, mostly by choice, I haven't really looked into it. Our house is too small to add a stranger in the mix. We like our privacy and it's just too invasive for us. It may be needed in the future, but not now.

As for respite, that was definitely needed. If not just so I could get out of the house and get some groceries. But I was still not comfortable allowing a stranger in our house to be alone with Christian. Of course, that person wouldn't always be a stranger, but still! Also, the respite provider can't technically watch Lola, as well. So was I supposed to go do fun things with just Lola in tow? No. We're a family, and I have a huge problem with leaving Christian behind if all of us are going. One night the coordinator for respite said we could get hours for a date night. Yippee! But what about Lola? I'd have to find an additional sitter for her. And that sitter would watch Christian anyway. Respite wasn't making sense for us. In fact, the only thing that respite could provide is assistance while I'm home or while we go on an outing with just me and both the kids. It started feeling like more of a headache. Do you see my dilemma?

That is mom signed up to learn how to be a respite provider!!! And now she's our respite provider. She's not a stranger. The kids know and love their Nana. It has been pretty close to perfect!


We're almost at the three year mark. Yes, it's been three years since we got to keep Christian! And are we celebrating? Of course, we are! That is a day for celebration and Christian is reason enough to celebrate. More to come...


Mama has been trolling Pinterest for ideas for the birthday boy who will be...drum roll please...four years old! He's not a baby anymore. Still looks like one to me with those big ol' cheeks. Okay, so he's not a baby anymore. And, okay, so his birthday isn't until the first of August. This is the thing, last year I was jaded and said screw this birthday party crap, we're going to Mexico. I had a moment. I don't ever want to miss the opportunity to celebrate Christian again. So there will be a party, alright. One that involves Pinterest ideas and a month to plan and buddies like him and...dinosaurs. Also, maybe a jumping castle, but don't tell Christian, K?


I'm not elaborating yet but just know that some super awesome things are going down. I'll just throw a few words out there...L.A....Crossfit...July...ISR... Yeah, it's super awesome, I told you!


So summer is really bringing it like crazy but I can't help but feel like my hand has been slapped. Remember my post about God? Well, I just got word that a little girl Christian went to school with grew her wings. I don't know why and I don't know details but I can't help but have such a mixture of feelings as her family grieves her passing while we plan for amazing things ahead. It's like a sign from above saying - Stop acting like a brat. I don't mean to sound incredibly narcissistic about her passing, but it's how I relate and make sense of this - that kids like ours, fragile little souls, can so easily be gone tomorrow. What I'm saying is that it was like perspective delivered to me on my doorstep. I don't feel bad about feeling thankful for our current path, though. Not in this line of work.


Christian hasn't had one of his big seizures in a few days. Isn't it backward that I'm so used to seeing them every day that when he goes without them, I get concerned? Welcome to this line of work.
Sunday, June 17, 2012

Angelic things.

I've got some fun pictures of my angelic children to post, but before I begin, I wanted to address last week's blog about God.

I've spent the last week reading comments and listening to every one's insight about what I wrote. The blog entry had been a long time coming and it got to the point where I felt like I wasn't being genuine if I didn't blog it out right then and there. I was nervous about it thinking some might judge me for writing my soul on to this blog. But the response couldn't have been more opposite.

People wrote their soul back to me. Did I get any hard line answers or Bible versus to put me in my place? No. But what I got was better. I learned that there are so many people in the same boat, thinking the same things, feeling forsaken, in a state of being unable to understand. People repeated, verbatim, thoughts that I had that I chose not to put in the blog or that I even forgot I thought about!Just knowing I'm not the strange one, that I'm not alone in my thoughts, has given me a sense of peace and calm. And now I'm ready to move forward. So thank you to everyone who read and commented. You have changed me.

Moving onto lighter and more adorable happenings....

We are in the throws of summer vacation! And it's pretty awesome because we don't have to be anywhere. So we just hang out. And play.

We did have a token of preschool that sat on our windowsill and reminded us of Miss Christy's class. Which, by the way, I think Christian misses because when I start talking about it, he starts moving and getting vocal while looking straight at me. Anyway, it was a bean plant that the 5th graders helped Christian plant. It grew and grew tall up through the mini blinds and over and down the other side. We decided maybe it should go live with Nana because she is much better at keeping plants alive than Mommy.

Daddy is a little more fun than Mommy and sometimes he likes to set up the tent in the living room just for fun. He's such a cool Dad.


And one morning I caught Christian grabbing at his Christmas lights in his bed. I think he looks like a baby in this picture. But he's going to be four years old in a month and a half! Also, one of the best parts of my day is coming in to say good morning to this little dude and seeing his brown eyes look up and find me. Makes my day every time.

I play a little game with Christian sometimes where I pull his space blanket over his head and he has to knock it off. This time I put his toy quad on his chest and he has to move to knock it off. I'm not sure if he used his arms or squirmed like a little worm, but he met my challenge.


"You thought you had me, Mama! Take that, plastic quad!"

Christian has seemed a lot more alert and interactive lately, so now I'm trying to think up more ideas that will entertain him so he won't be bored. He gets bored easily and toys loose their luster quickly. Some age appropriate behavior defies brain injury, let me tell ya.

Another ridiculously adorable phenomenon that is occurring in the Quintero household is Lola taking interest in her brother. I am enamored with it. I am obsessed with documenting it. It's like I'm watching magic. And I try to catch it with Instagram every time it happens.


Magic. I don't know about you, but if you look close enough you can see angel wings. Swear.

I think what fascinates me is that Lola takes interest in Christian without prejudice. She knows he's limited. She knows he's special. But she doesn't care. It's like she treats him like he's her best bud. She wants to play with him. She wants to help him eat Popsicles. She wants to participate in things he is doing. And she cheers for him. Be still my heart, the girl cheers for him.


Oh yeah, and remember how Christian didn't smile for two years? Remember how much that sucked? And remember about a year ago when I documented his first attempt to smile after we were rolling back and forth on the floor? Well, he kept doing it. And now I'm happy to say that I know just what to do to get that little corner of his mouth to head north. A little bouncing, a little rough-housing, but especially when I'm holding him, put my hands on his rib cage and shake him side to side while making some dorky noise, I almost always get him to crack a smirk. In fact, it used to be only for me! But today, Daddy actually got him to smile for him! Best Father's Day present ever.

I've been trying to document one of the most amazing parts of my day forever now but Christian will not perform unless I do the rib shake thing with BOTH hands on BOTH sides of his ribs. So it's very hard to take a picture of his smiling while holding him and trying to shake a smile out of him. It's acrobatic!

The good news is that Christian's smirks are getting bigger, lasting longer, and are more frequent bit by bit. So I finally got it!

But this is what I had to settle for first...


Half a picture of half of Christian of half of a beginning of his smirk.

Until today! When he smiled long enough for me to grab my already prepared phone to snap this beautiful, melt my heart, gorgeous, angelic sight.

I love him from his googly eyes, to his crooked half smile, to the bit of green Popsicle juice left from earlier. That is my boy. My gorgeous, strong, heroic little boy who enjoys bouncing, dinosaurs, his space blanket, and a little rough housing. He melts me.

Do you think I gushed enough?

Happy Father's Day, Peeps!

Sunday, June 10, 2012

Thoughts on God.

Sometimes I wonder if anyone questions or even notices (or cares) that I don't mention God as much as I did in the beginning of this blog.

I sat at my laptop, ready to blog, and questioned whether I should get all deep and spill my heart and worries on the subject. I feel like the subject of God and faith has been just below the surface of a lot of my posts. If you've been reading, I wonder if you've noticed my hesitancy to delve into it.

First, before continuing, I'll apologize ahead of time if my stream of consciousness offends anyone, whether you are a believer or not. I'm pretty sure I'll be offending the easily offended so consider yourself warned.

Second, some of this may sound silly. But I think when you have "Come to Jesus" moments where you feel comfortable enough to say anything, to ask anything - you ask anything.

So here goes...

When I saw my son die on the floor in front of me and I watched his little soul leave this earth, something happened to me. A part of my soul died and left this earth with him. Then thirty to forty-five minutes later when I literally witnessed his battered and injured soul return to his helpless little body, I knew. With everything in me I knew God had a hand in what I had witness. I knew it was His work. It was a miracle.

Over the last few years, I've learned a lot, witness a lot, endured a lot. I was never angry at God and I wondered why others in my situation would be. It was not His doing, what happened to Christian. I heard and read how it was okay to be mad at God and to bring my anger to Him. Lay my burdens at His feet. But I convinced myself that I was not angry with God. He brought my son back to me. How could I be angry with Him? It was my fault, after all. It was me He should be angry with.

Then I experienced the last two years. We've had happy, miraculous moments, but we've had gutwrenching moments, as well. And it was happening all around me, not just with Christian. The community that we're part of - parents of near drown children, parents of brain injured children - these kids were sick all the time, on death's doorstep again...and again, enduring horrible surgeries, being revived only to die years later from pneumonia. This was not death, per se, but it certainly was not living. It was the in between.

I witnessed parents spend their entire life in healing their children. Some kids thrived and some didn't. It was a crap shoot. I often compare brian injury to scrambled eggs. Those perfect little brain eggs get scrambled so much so that they are unrecognizeable and you have to work with what is left - scrambled eggs.

There are many nights Christian wouldn't sleep. Or, the worst, when he cried inconsolably for hours. I think he has a record of four and a half hours straight. Those are the "Come to Jesus" moments where I wondered where God was. Why He allowed so much suffering, not only with Christian, but with others, as well. I wondered a few more things, too.

I wonder...(And here is where the rant begins)

...Why is it that God does not intervene? Is it part of His plan for Christian to suffer? I understand that God is always with us, but, oddly, understanding that makes it all the more worse for me. Because to understand that it means I have to accept that He stands idly by, because he's always there, watching the struggle and does nothing. We cry out to Him, and nothing. How can we not feel forsaken. Like Christian was saved and now we're on our own. How do I trust that? Most days I can accept that, but some days I just can't.

...Why are some children favored? Do they go to church more? What about if they go to synagogue? Does that count? Does God's light shine brighter on some kids, but not others because they attend a Baptist revival rather than a Catholic mass? I've heard of two little boys who had seemingly catastrophic near drownings and both recovered and literally walked out of the hospital. They were both Mormon. Should we all just convert to Mormonism? Is that where the light is? Is that where the healing happens? Or is it just attending a building? Is that why Christian isn't better? Because we don't attend church on a regular basis? Does it matter what church or what religion? Or that we simply attend? Doesn't matter how we live our lives during the week, just attend on Sundays and maybe even add a few more days on to the schedule and Christian will gain greater healing. Is that how it goes?

...People have told me God didn't want this to happen. But if God has a plan, start to finish, wouldn't you have to accept that this was His will? This was His plan?

...And going back to His miraculousness...I've seen it, I've witnessed it, so that's what makes it so hard to accept. I know that God, being the Almighty, can change things in an instant. He can give us one more ability. He can take away a little bit of pain. And he chooses not to. How am I supposed to accept and trust this? I've rationalized - maybe this happened to Christian because it will effect a doctor that has worked with him, maybe it will make another mother question her child's care, maybe it will make a parent choose to put their child in self rescue swim lessons. But all of this does not seem like a big enough reason! I'm sorry that sounds selfish, but it just doesn't!

I think I'm done with the rant. Hope you're still with me.

Of course, I believe. That's not what this is about. I believe, but that's what makes it so much harder to accept. That God has the power to intervene and doesn't. At least not in ways that I understand. And I often hear the "lean not on your own understanding..." verse playing over and over again in my head, chastising me like a spoiled child. It used to bring me comfort but now it just frustrates me.

The truth is I don't understand. And I may never so I have to begrudgingly accept it because I have no choice in the matter. It is already written, apparently.

And the other truth, perhaps the largest truth, is that I am angry at God. I said it and now I can deal with it. I discovered it yesterday when I was wondering why I was having such a hard time giving in to faith and totally relying on it. Sometimes I envy others when I see how much they've suffered, some much more than I have, but still have this unwavering, all consuming faith.

I have felt the bright light of God shine over us, over Christian many times. I am totally and completely aware of His presence and His hand in day to day occurrences, which makes this all the more difficult to struggle with. I've seen things fall into place for Christian so much so that it looks like the road was paved by God himself, only to turn into a dead end. It makes the trusting part of my relationship with God extremely difficult.

I have accepted Christian for who he is and I love every part of that boy. But what I've discovered in writing this blog is perhaps I don't accept God's decision in the matter. One might argue they are the same thing, but I believe they can be mutually exclusive ideas.

So there you go. This is my heart in blog format. My faith in my son is unwavering. But my faith and relationship with God has been a struggle in understanding. If you have words of faith that can help me understand, please offer them. Anything? I'm not trying to be condescending, and I'm not trying to be converted, I'm just looking for a way back.

Draw me a map that leads me back to you
I don't know where to go, please tell me what to do
Help me find the road you're on
I just need directions home
Draw me a map that leads me back to you
-Dierks Bentley

Saturday, June 2, 2012

Capturing some awesome.

We just got back from being awesome in Mexico.


We are blessed enough to live three and a half hours from this tiny, hole in the wall, paradise.

And, why, yes...that is Christian perched in his wheelchair in the sand. Do you know his Daddy hauled that wheelchair all the way out to ten feet from the shoreline? And he wouldn't have had it any other way. Our son, right there with the rest of us. But Daddy will be working on an easier way to make this happen to save his own back.

Of course, he wore his patriotic straw hat. It was Memorial Day, after all.


You know what wasn't awesome? Christian and Lola were both sick with colds through the whole trip. Lola has more energy than all of us combined so her cold manifested itself through a runny nose and cough. But other than that, no wimpy cold was going to slow her down. Christian, on the other hand, definitely needs down time when it comes to colds. He even got a temperature a few times. So he did a lot of laying around and resting.

What better place to rest than the beach?

Or the balcony overlooking the ocean?

We didn't take him in the ocean water and even the pool temperature was a little cool for him. He did absolutely turn to butter in the jacuzzi. He loves, loves, loves him some warm water!

He also got a bubble bath in the jacuzzi tub in our room. He loved it so much and his body responded so quickly and positively that I am strongly considering looking into purchasing a hot tub for jacuzzi therapy!

There was a time where I couldn't have imagined being in a foreign country while Christian is sick. But I wasn't worried. I mean it is only three and a half hours away. And I didn't think Christian was getting to the point where he would need anything but some good Childrens' Tylenol. And maybe this sounds irresponsible or off the wall, but if things were to go down hill or get seriously bad for Christian, I'd know that we spent these days as a family, by the ocean, where he is calm and relaxed. I wouldn't regret a single moment of that.

Someone else was bound and determine to explore every inch of that beach.

And this is what a long day at the beach does to munchkins. Cold or no cold.

We captured our awesome. The beach is an amazing memory maker. The effect it has on my kids, each in its individual way, is worth every single cent saved to take this trip.

I hope you still feel small when you stand beside the ocean, kid.

Until next time, Mexico!

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