Saturday, October 31, 2009

Happy 2nd Birthday Dakin!!

Two years ago today, Dakin was born.

The first time I saw his face, it was crumpled with rage at being suddenly pulled from his previous environment. I didn't get to hold him right away, but when I finally did, the moment was magical. Like his grandmother did with me, I counted all his fingers and toes. I felt his tiny soft head and looked into his eyes--surprisingly to me, they were not blue, but an ambiguous brown-grey-green.

Though I didn't know it at the time, I was holding one of the most courageous people I have ever known. I had no idea what we would go through together, and how deep of a bond I would develop with him because of it.

Two years ago today, I learned what love is.

Dakin, your dad and I love you very much--SO much. You are joy, you are light and happiness, you are everything that is good in this world. You are our hero and our life. Thank you for teaching us so much about being brave and loving. We love you!!

I wanted to put better music with this montage, but I just can't get it to work. So turn off the cheesy music, and imagine Harry Connick's 'Heavenly', a wonderful version of 'A Little Help From My Friends' and the best and original 'Bridge Over Troubled Water'.

Thursday, October 29, 2009

More on the Pumpkin Theme...The Patch

As you can imagine, accessibility is one of the major issues we have to deal with. It is extremely frustrating to discover that you can't take your child somewhere because of wheelchair inaccessibility. We have, thus far, only met this a few times--and thankfully most people are good about it. I think they can sense I'm going to go nuclear on them if they aren't just as accomodating as they can Legally speaking, places of business have to have wheelchair access.

The exception to this is the Pumpkin Patch. Being a seasonal thing, and I'm sure not defined under the Americans with Disabilities Act, there are few 'real' pumpkin patches where we can take Dakin. They are too muddy or you have to ride a truck to access the pumpkins. As the majority of these in our area are on farms, that's us out. So we like to look for alternative patches that could be accessible, namely the churches around here.

Last year we went to a local Baptist church, who had graciously laid pumpkins out around their building and one could take pictures there anytime--these pics are from there.

This year, sadly, they opted not to do it, and so I was thinking we might not get to go when our Speech Therapist told us about a local Church of Christ who has a patch this year. So we gathered Dakin up yesterday morning and took him.

The church was perfect! The pumpkins were laid out in a nice grassy area surrounded by a RAMP! Ha! The weather was so gorgeous--crystal clear, sunny and cool. It was set up so one could come and take pictures whenever, and the lady who was there told us to take a little pumpkin for Dakin. I didn't get much by way of smiles in the pictures, due to the aforementioned sun. It was a ideal experience, and I'm so glad we got to go.

I need to write these churches a letter and let them know how much these simple pumpkin patches means to us. I am going to have to contact the one we went to yesterday anyway...they have a school, and the thought of private school for Dakin had never even occurred to me. (I'll explain why I'm thinking about this now in a later post.)

Monday, October 26, 2009

Dakin's Pumpkin

I love to carve pumpkins. Well, I only like it after they have been cleaned and their insides yummily toasted. After the disgustingness is past, I see carving as a challenge--I like to do complicated patterns. It's fun. Maybe I'm a glutton for punishment.
So yesterday I asked Dakin what kind of pumpkin he wanted--Rocket from Little Einsteins, a car, or a butterfly. He didn't say, so I opted for the butterfly, largely because that's the pattern I could find. I had to freehand it, but I don't think it turned out too badly.
Dakin was not happy while Dada and I took turns cutting the hole in the bottom. Not sure why, he just kept complaining--Dada thinks it's because he doesn't like seeing a fellow Halloween symbol being 'defaced.' Guess these Halloween guys need to stick together. He did enjoy looking at the inside of it...
And then of course my good carvers broke and I had to go at it with my chef's knives...what a mess. But here it is.

Friday, October 23, 2009

Photo Friday

More picture experimentation with the new camera.

This one cracks me up--he looks like an elf!!

This is our day nurse.

Button, Button, Who's Got the Button?

That's the game I feel like I'm playing. I can't find that blinking H1N1 shot ANYWHERE. After the inflexiblility of the pediatrician regarding shots and giving them in the parking lot, I went to the other docs to get a flu shot and Dakin's RSV Synagis shots. I was hoping one of the others would have the H1N1 shot, but to no avail. One of them has the Mist, which contains a live virus for inoculation, and is willing to give it to Dakin, but the neurologist says absolutely not on that.

So I guess it's time to make up with the will be easy--it was a one-sided war to begin with.

I'll see what I can get them to do for me to help prevent his exposure. What a pain in the butt.

EDITED TO ADD: They got back to me, and shocker, they don't have any. And when they get them they said they can only give them to high-riskers between the ages of 5 and 18, "government mandated."

Hmm. One would think that a immunodeficient ventilated child would qualify as 'high risk', but what do I know?

Going to have to invest in a bubble for Dakin.

Tuesday, October 20, 2009

New Camera Photo Shoot

So I dropped my digital camera the other week, and had to get a new one. I also needed to do some photos for Dakin's 2nd birthday coming up, so I figured I'd take the opportunity to test the new one.

Saturday, October 17, 2009

"First Steps" Continued--Video!!

Out exploring.
Look what we found! :) I finally got the video to load. It's a short one! He looks like he's working hard, and really he is--this is not as easy as it looks! He's controlling the chair with his head.

Thursday, October 15, 2009

Dakin's "First Step"

We saw a miracle today.

Yep, a full-fledged, bonafied miracle, in the form of a boy moving himself through space for the very first time.

He did amazingly with it...caught right on to the proximity sensors in the head rest that turn the power chair in the direction he looks. He moved himself through the living room, into the hallway, and into his room. We took him outside in it, and he drove all the way down the street to see the pump jack he loves so much. 99% all by himself.

I had given up the idea of ever getting to see a first step. But we got ours today. We couldn't be prouder than if he had taken it on his feet.

PS-I have video, but it just won't upload.

PPS-The chair says "Chelsea" because it's a loaner to practice on until we get ours...

Wednesday, October 14, 2009

Monday, October 12, 2009

Making Cookies

I have been looking forward to this for a while! On Friday Dakin helped me make some sugar cookies. As you can imagine, there was flour everywhere...
The strange looking pumpkin in the corner is his, as well as the ghosts beside it. They baked well and I threw some royal icing on them. They were pretty yummy, as far as sugar cookies go.
I have a video, but the stupid thing won't load...

Sunday, October 11, 2009

Winner Winner Chicken Dinner!

At long last...the winners of the Pound Out SMA/SMARD giveaway!

Earrings: Karen from KakleiDesigns

Bows from Littlest Boutique: Sara from Noggin Berries

10.00 Gift Certificate from Bouquet of Pixels: Diane from SnagNTag

Congrats, guys!!

Tuesday, October 6, 2009

I Love This Picture

Dakin's face in this picture cracks me up!!

Announcement: Giveaway winners announced soon!

Monday, October 5, 2009

Ever The Same

So kids love music. Dakin is no exception. I love music myself, and am trying to give Dakin a good base in different types of music. We listen to a lot of classical, as I am a big proponent of that type of music making your child smarter, especially the Mozart. I hope Dakin grows up to love the harmony and counterpoint of Mozart, the raw emotion of Rachmaninoff and the beauty of Opera.

But we can't have that all the time, right? When that gets tired, we go to his favorite music--Elvis! He loves it! Whenever "Teddy Bear" comes on, he gets a huge smile on his face. He seems to like Lil' Wayne too, to my horror.

We sing a lot--we have a whole playlist of songs that I'll sing to him while he's going to sleep or while we are cuddling. "You'll Be In My Heart," "The Last Unicorn," "Inchworm" and "Bridge Over Troubled Water" are some of my favorites. We have a secret one too, that no one but us knows--it's an older song that I just love.

I have been trying to get him interested in Matchbox Twenty--they're my favorite group and my heart will just break if he chooses someone else over them. Rob Thomas, the lead singer fot Matchbox Twenty, has done some solo work, and one of my favorite songs of his is "Ever the Same"--I really feel like it represents the relationship Dakin and I have. Here are the lyrics:

We were drawn from the weeds
We were brave like soldiers
Falling down under the pale moonlight
You were holding to me
Like a someone broken
And I couldn't tell you but I'm telling you now
Just let me hold you while you're falling apart
Just let me hold you and we'll both fall down

Fall on me
Tell me everything you want me to be
Forever with you forever in me
Ever the same

We would stand in the wind
We were free like water
Flowing down
Under the warmth of the sun
Now it's cold and we're scared
And we've both been shaken
Hey, look at us
Man, this doesn't need to be the end
Just let me hold you while you're falling apart
Just let me hold you and we'll both fall down

Fall on me tell me everything you want me to be
Forever with you
Forever in me
Ever the same

Call on me
I'll be there for you and you'll be there for me
Forever it's you
Forever in me
Ever the same

You may need me there
To carry all your weight
But you're no burden I assure
You tide me over
With a warmth I'll not forget
But I can only give you love

Fall on me tell me everything you want me to be
Forever with you
Forever in me
Ever the same
Call on me
I'll be there for you and you'll be there for me
Forever it's you
Forever in me
Ever the same
Forever with you
Forever in me
Ever the same

I love this song. If you get a chance, listen to it. It helps assure me that no matter what happens, we will always be the same--Mommy and Daddy and Dakin, no matter what.

Friday, October 2, 2009


So around here Halloween is kind of a big deal--always has been in my family. When I was little my mom would dress up like a witch and throw parties for my school classes, green skin and everything. The Halloween fairy would come the night before. It helps that my birthday is two weeks before it--so many many fun Halloween memories.

So when I found out Dakin was due near the end of October, I had a fleeting hope he would be born on Halloween. Then the sonogram showed he would be born on the 24th, and I abandoned my hope, but was happy he would be here near my favorite holiday.

The 24th came and went, with no sign of his impending arrival. My OB would not allow me to go more than a week over my due date, and guess what day that got it! Halloween! So our Pumpkin Boy came along.

So this month will be a lot of Halloween stuff!! And here's the first installment: Dakin's custom-carved pumpkin. It's ceramic, from a wonderful store in Longview called the Mud Hut--one of those places where you paint the pottery, and they fire it. They were kind enough to let me take it home so we could paint it in the germ-freeness of our house, and now we have a wonderful Halloween accessory! I apologize for the last pic--my digital camera broke, and I am relegated to phone pics from my lousy cell and my nurse's iPhone. So here you go: