Monday, March 28, 2011

OK, OK...

To the entire universe (read: family) who is fussing about lack of posting: here you go. We just haven't done anything over the moon exciting recently, and the iPad has been holding me hostage. But just so the fussing comes to an end, behold the small excitements of late: Learning to cut in OT Our bi-annual trip to the zoo, where we had to spend ten minutes of my life I will never get back staring at the zoo's newest exhibit: black bears (genus big stupid scavenger freaking black bearicus)
I hate stupid black bears. Hate them. And lest you think, "what a strange thing for someone to hate," let me just tell you I was born and raised in Alaska...I grew up on the side of a mountain. With big stupid scavenger freaking black bears. Who like to sit outside the house and scare the devil out of me, and who also eat the trash out of your cans. I hate them.


Dakin LOVED them, of course. He also enjoyed making a rainbow cake I saw on Omnomicon. I have no explanation for the silly face.
Dakin and Daddy outside playing with Daddy's RC car.
Other zoo notes: Dakin still loves the ducks, and had a wonderful time grinning at a penguin swimming back and forth in front of him. He did not care for the bird house this time around, though, owing to a new ornithophobia. (We were outside at dusk a few weeks ago and the birds were flocking back and forth and scared Dakin to death. Don't ask me why. Since then it's been all "Scary birds. Birds scare me. No birds." Being outside has been a riot, let me tell you.)

Tuesday, March 22, 2011

Stepacoke

Ok, so I have been MIA. I admit it. The only thing I have to blame is the iPad...I have been playing on it at night instead of blogging like I should have been doing, right? Ah well.

Today we trekked to Dallas for a visit with the cardiologist. We have been seeing her because I am freaked out about heart health for Dakin--with so few children in the world with SMARD, you can't be too careful, in my estimation.

He was terrified a good majority of the time we were there, thinking he was going to get a shot. I am talking a big freak out--he has really developed anxiety with anything relating to hospitals...and he knows we are at one before we even park. Too smart.

But he took it like a man. We entertained him with his new favorite, "Jake and the Neverland Pirates" on the iPad as he had his echo and EKG done. He freaked out a little at the beginning but managed to calm down enough to get the images they needed. As we waited for the cardiologist to come in, his anxiety started rising again until we told him that she would listen to him with a stethoscope, and for some reason that calmed him right down. He kept saying, "Lady stepacoke!"

His heart was given a clean bill of health, and we were told to come back in 18 months. Nice, right?

We decided on the hospital cafeteria for lunch, where Dakin was in an extremely good mood. Observe:

He was singing "Red, e-lo, lellow, gween, boo..don fogeh purpa too, rainbow color me and you." It was really cute to see him singing and so happy after such a traumatic experience. But that's just how he rolls. :)

Friday, March 18, 2011

Lately

I apologize for the lack of posting lately. I guess we have been busy! But just so that certain family members won't fuss at me, here's a breakdown of what has gone on this week:

We went to Dallas for Dakin's last Synagis shot, and boy was that fun. He did take it better than last time, though, and he has said "all done shot" for the last few days. I guess there's no point in explaning to him that there will be more next season, and just let him enjoy it.

That same day we tried to see the dinosaur exhibit in Dallas, but it seems it was spring break and everyone and their entire freaking neighborhood was at the museum. We will try that again next week when we go in for an appointment.

We took Dakin to see our awesome friend's horse yesterday. It was an absolutely beautiful day, but Dakin was really wary of the horse until the boys started riding her-then he was hooked. Mommy, on the other hand, had a major allergic reaction that she is still recovering from. It was ugly...

So that's about it this week, I will try to do a more interesting post...

Saturday, March 12, 2011

Farm

I have been on a changing path the last year or so: the more I learn about Big Food and CAFO beef and the like, the more I am terrified to eat foods produced in that way. I have been planning a more locavore lifestyle, hoepfully to go into effect this spring once the Farmers' Markets open. Thankfully, Daddy has borne this well and is taking it with good humor, and Dakin doesn't care.

We made the first big step towards locavory yesterday, by visiting a local farm that produces the most amazing grass-fed beef...wow. I am salivating. But I digress. Anyway, I asked if the farm would mind if I brought Dakin up to see the animals, and they happily agreed. Dakin was so excited all the way up, saying he was going to see cows and sheep and chickens and horses. He had a wonderful time (once he relaxed and realized he was actually there to have fun and this wasn't a cleverly designed RSV shot deception) watching the cows, pigs, and especially the chickens. Just look at this! Animals not shoulder to shoulder and standing in their own waste, and allowed to graze on what they will. Totally the way it was meant to be.

Anti-Big Food rhetoric aside, Dakin really enjoyed looking at these pigs. They are nicknamed the "Three Little Pigs," which is Dakin's favorite story, so he was digging that. Dakin got to watch this little guy get bottle fed. We asked him what he thought the calf was eating, and he said, "yogurt."

video

It's important to me that Dakin know where food comes from. I don't want him to grow up thinking hamburgers come from McDonalds.

Anyway, thanks so much to Shady Grove Ranch. We loved it and we will be back!!

Wednesday, March 9, 2011

Up!

In our new bigger Bumbo chair! We had to tie him in since he was trying to lean over and got stuck that way. We even have this grey table that sits at an angle for him, so he can play on his iPad.


Cheeseball. Anyway, I am so glad we got this! It gives Dakin a different perspective to check out, and a chance to sit somewhere other than in his wheelchairs. He is totally digging it.
And lots of thanks to Presley's mommy for hooking us up with a great deal on this!!!

Sunday, March 6, 2011

Difficult

Today was a difficult day. Most days I handle all of this pretty well...manage to take all of it with a smile. But today was just not that day.

I was reflecting on the lyrics of a song I recently came across (I won't tell you how, because it will forever brand me as a geek) called 'After the Storm'. The artist is Mumford & Sons. Looking at these lyrics, I am at a loss to explain how 4 men could possibly so perfectly describe being the mother to a special needs kiddo. To me, these lyrics follow the emotional roller coaster that this ride truly is--the anger, the loss, the okayness and the not okayness, the determination and restructuring of your entire belief system, the deeply profound lessons and the injustices, the hopelessness and the hopefulness. Check it out.




And after the storm
I run and run as the rains come
And I look up, I look up,
On my knees and out of luck,
I look up.

Night has always pushed up day
You must know life to see decay
But I won't rot, I won't rot
Not this mind and not this heart
I won't rot.

And I took you by the hand,
And we stood tall,
And remembered our own land ,
What we lived for.

And there will come a time, you'll see, with no more tears,
And love will not break your heart, but dismiss your fears,
Get over your hill and see what you find there,
With grace in your heart and flowers in your hair.

And now I cling to what I knew,
I saw exactly what was true,
But oh no more,
That's why I hold,
That's why I hold with all I have
That's why I hold.

I will die alone and be left there
Well I guess I'll just go home,
Oh, God knows where.
Because death is just so full and mine so small.
Well I'm scared of what's behind and what's before.

And there will come a time, you'll see, with no more tears,
And love will not break your heart, but dismiss your fears.
Get over your hill and see what you find there,
With grace in your heart and flowers in your hair.

And there will come a time, you'll see, with no more tears,
And love will not break your heart, but dismiss your fears.
Get over your hill and see what you find there,
With grace in your heart and flowers in your hair.


I love the last two lines. I think as special needs parents it is beyond easy to fall into the role of caregiver/parent and nothing else. I know I have gotten there--I have lost so, so much of myself. I neither regret that nor begrudge Dakin that: it is my distinct privilege to serve him, not just as caregiver but also as mommy. It's a role I wouldn't trade for anything in this world. But I have lost much of me in the roller coaster of emotion. And now it's time to get some of me back. Time to let go of some of that anger and fear and hopelessness. Time to find out what's over that hill, with grace in my heart and flowers in my hair.

Friday, March 4, 2011

Finally

We have joined the rest of the planet. Behold, Dakin and the iPad.
He LOVES it. His favorite apps are the paint one in the first pic, and a iFish pond. Thank you so much, Nana, Aunt Beth, Gramma, Aunt Irene, Bob and Aunt Marie for helping us get this for Dakin. We are sure it will open worlds for him!