Tuesday, August 31, 2010

Dakin Goes Underwater

No, really. But before he did, we had an appointment with Dr. I, the neurologist. She says he looks terrific, and so I brushed my nails on my shoulder and we headed to the power wheelchair people, who fitted Dakin in his brand new chair! But more on that tomorrow... After that we headed to the Dallas World Aqarium and Zoo, which is, in a word, awesome. I can add more: unbelievable, fantastic, brilliant. Here's Dakin in front of the waterfall:
And in front of the manatees. He really liked this part...he seemed fascinated by them.
And now the underwater part:
Yes, Dakin was underwater for the very first time. Did you really think I had dunked him?
He absolutely LOVED this little fish tube.
He kept looking up, so I tilted his chair back so he could see better. I think he could have spent all day in there. We were lucky in that a scuba diver dropped in and started feeding the fish. He kept waving at Dakin, who kept telling the diver 'hi.' Dakin loved it!
We finally fished (this is what little sleep will do to you, sorry...) ourselves out of the fish tube and moved on. There was a shark tube as well, but we didn't get any great pics. There was, however, a jaguar who couldn't have cared less that Dakin was on the other side of the glass from him. For you newbies, Dakin's next to Jane, our day nurse.
So basically, it was an amazing trip. We got to eat lunch in a rainforest, go scuba diving with angelfish and sharks, and visit Madagascar. I have been so looking forward to this trip...I'm glad we finally got to go!
I loved watching him so fascinated, especially in that fish tube.
"Days like this are few and far between..." (Yes, I'm quoting the Imagination Movers. I just thought the sentiment fit.)

Saturday, August 28, 2010

Recap/Completely Clueless

Just an ordinary week...but for journaling's sake, of course I need to write it all down. :) At least Friday, anyway.

Friday we had a novel experience. We had gone to check out a local handicap-accessible park. On our way out, all of a sudden Dakin is being offered rocks by a little boy. This little boy, who was a few months younger than Dakin, was very earnestly attempting to play with Dakin. We steered him clear of handing him the rocks--germ risk, you know--but let Dakin 'play' with him for a while.

The thing of it was, this little boy didn't even blink an eye at Dakin's trach/circuit/everything. Didn't look twice. Didn't stare. Didn't ask. He just wanted to play with Dakin.

It was wonderful. He was completely and totally oblivious. Beautiful. I hope we see this little guy again. I really want Dakin to be able to play--and I am hoping next spring, with one more no-illness winter, that we can breathe a little easier and let a little loose.

The rest of the morning we spent outside (YES!! OUTSIDE!! It wasn't ten bijillion degrees out!!), playing with Dakin's remote control car and blowing bubbles. It was great.

Anyhoo. Just wanted to share that.

Monday, August 23, 2010

Miracle

I know it's been a bit since I posted last, and I apologize...we've just been doing our end-of-summer thing. Hoping to have more to post about soon!

I was thinking tonight, though, and thought I'd share something that's been on my mind. Sundays at church I play the piano for the kids' lesson. This last Sunday the topic was miracles--namely the one Jesus performed of healing and raising from the dead. They talked about Lazarus and the daughter of Jairus, as well as a few others I can't remember, probably because I had a little person who was distracting me.

Anyway, I got to thinking about this, and I shared some of my thoughts with the kiddos. I wanted to share them in entirety here.

Do I wish Dakin could be healed? Could walk? Of course I do. I often wonder why there are so many others who are healed of their infirmities but my son won't be. It makes me angry sometimes. Sometimes it makes me sad.

But you see, Dakin is a rather special little boy. Despite all his difficulties and hardships, he smiles. He radiates joy. He is the single bravest soul I have ever met.

So I am led to believe that while others are healed--and that is the miracle--Dakin is different.

Dakin is the miracle. He is the miracle in what he teaches others about themselves, in what he inspires them to be. He teaches them to be better, to love more, give more, to understand the pure joy of small moments. He teaches smiling when the only thing one wants to do is cry. He teaches others patience. Perseverance. Happiness. Laughter. Light.

Love.

Am I jealous of Jairus? Of course. I think I would be loony not to be. But in considering it now, I suppose it is pretty darn special to have a living, breathing miracle asleep in the next room. Wonder how I got that lucky.

Wednesday, August 18, 2010

Conversations With Dakin

This is the first installment of what I hope will be a fairly regular feature here at TDD--Conversations with Dakin. Yes, he has progressed in his speech enough that we are having actual conversations now. Tonight's was during Master Chef--or the little I got to see of it, anyway. The judges had called up a girl to judge her recipe. The camera came in on her and the ensuing discussion went like this:

Dakin: Baby mouse (talking about the girl on the TV)
Me: Do you think she's a baby mouse? She's not a mouse, she's a girl.
Dakin: No, no girl.
Me: Well, if she's not a girl, what is she?
Dakin: Cookie.

Tuesday, August 17, 2010

Free!

Well, kind of. You see, we have been undergoing something of a major heat wave here in Texas. It has been supremely hot. Epically hot. Biblical even.

Well, the meteorologist predicted a 'cool front.' That means that instead of being 115, it was 105 today. This morning, though, was actually kind of pleasant, and so we ventured outside for the first walk we've had in months. It was great...I have been suffering from major cabin fever, so it was nice to be in the breeze and sun, even if it was still pretty dang hot.

And what's more, Dakin enjoyed it. He loves being outside. Bring on fall!!! We want to go back out!

Sunday, August 15, 2010

Not Sure It's Appropriate

Church isn't an appropriate place to flirt, right? Especially with a married woman 19 years older than you...at least not where I'm from.

Evidently no one told Dakin that.

See, there's a girl at church who he just. loves. Her name is Kamie, and she's the Primary Chorister. Dakin has been giving her the shy smile for a while now, but today it blew up into full fledged flirting. Kamie gave Dakin his marker, which he had thrown on the floor (an attempt to grab her attention maybe? This kid is smarter than I think he is...and I think he's pretty smart). I told him to say thank you and he did...with kisses as he usually does. But the kisses continued. And continued. And all this with Kamie's husband Jose right in the room!

I guess he's off blondes...Kamie's a redhead.

So anyway, it would probably be pointless to discuss church flirting with Dakin. He, being two, is a selective listener. He'll probably just keep doing what he's doing.

But Jose better look out...

Thursday, August 12, 2010

Cole's Quilt for Dakin

Cole's Quilts is an organization that makes quilts for SMA kids. MJ, who is the SMA Queen, recommended that we apply for one, and we got it this last week. Let me just say, I have never seen anything like this. His quilt is beyond words. The squares are hand-stitched--I can't imagine the love that went into this work of art. I mean look at this!

Superman! This one is from MJ and Brenda. (You may remember if you have been following The Daily Dakin for a while that MJ also runs a quilt organization called B4SMA)
And here's Dakin being stubborn about taking a good picture. To Linda and all the Cole's Quilts volunteers: thank you. Thank you so much. We will truly treasure this quilt always. It is beyond beautiful, and the love stitched in makes it absolutely priceless to us. Thank you, from the bottom of our hearts.

Wednesday, August 11, 2010

Silly Boy

I just love how he says 'monster.' And Mommy.

video

Saturday, August 7, 2010

Stream of Conciousness and Aunt Carrie

(After a gentle reminder from a certain aunt, we are going to be posting more frequently...love you Carrie!!!!)

So today was just another of those good days. Since we got the minivan, I have been able to take Dakin out by myself, which is something that pre-van was completely impossible. So I have had so much fun running Dakin to and fro with me on Saturdays doing errands. Today was the bank, CVS and (*gasp*) Wal-Mart. Yes, I know I swore I would never take him in there, but it's the dead of summer and I feel safe. Besides, the closest Whole Foods is 2.5 hours away. Boo. But that's a subject for another day.

He loves going in the store. Maybe it's the lights, or the colors...he just loves it.

Dakin has gotten really good at staying in his stroller for long periods of time. He was in it this morning for close to four and a half hours! Which, of course, makes the aforementioned errands much easier.

Tonight he was being funny by giving his Mickey Mouse doll kisses. He's never done that before, and of course we were fawning over him. So he kept doing it. He's such a ham.

His new favorite thing is Imagination Movers. Fortunately, the music is neither annoying nor trite, so I'm handling the ad nauseam viewing well. His favorite part is Warehouse Mouse. Just loves him.

OK, enough Joyce-ism for tonight. Like I said, it was just a good day.

Thursday, August 5, 2010

My Favorite Things

I have a bunch: the way Dakin's eyes squeeze into tiny crescents when he smiles big, the way he says 'Mommy,' the way he laughs and sneezes soundlessly. The way he loves silly things, and his little TV shows.

But one of my favorite favorite things is when he snuggles with me. It's usually when he's waking up from his nap, and I get to hold him against me, his face nestled as far in my neck as he can get it. If I move my head and he doesn't want me to, he'll stretch his little neck as far as he can to tell me to bring my head back, so his face is completely hidden. He likes to push away sometimes, sitting balanced on my knee, and look around laughing, but he'll usually come back for more snuggles.

He'll also occasionally (and on purpose! Agh!) slam his head into my collarbone, which is indescribeably painful for me, but he just laughs about it.

Anyway. Snuggle time is one of my favorite times of day. Just thought I'd share.