Because...

Because you are the most precious boy ever.

Because I can't get enough of this smile, and I don't know how I lived before it. Because your eyes squinch so tight when you smile like this that I don't know how you see.

Because your joy is infectious, and your spirit so bright. Dakin learned how to blow bubbles the other day in Speech Therapy--that's what the first pic is. Thought you might enjoy a video too. Just because.

Another Quick Way to Help

Hi all. Victoria, Gwendolyn's mommy, has been nominated for the Hero Next Door award at Care2. The winner will receive 5000.00, all of which, if she wins, Victoria has pledged to SMA awareness and cure. Help her out! The voting only goes through this week, and is quick and easy. Vote here for Victoria.

Truly if anyone deserves to win an award such as this, it is Victoria. She tirelessly champions the cause of SMA children, and is an amazing ambassador for them. Of course, by extension she also is representing the handful of SMARD kiddos. Her courage, drive and creativity never cease to amaze me, and I am proud to call her friend.

Please take a few seconds to vote, and repost this! Thank you!

Sunday

We chanced church this morning. It went well...I didn't see anyone hacking or throwing up, so we should be in the clear. Dakin even got to participate in the Nursery lesson--the sweet girl in charge of Nursery brought the other little boy who was in Nursery into the Primary room and we had a little lesson, followed by coloring (Dakin was hooked after that. :) )

I was reminded again this morning how lucky we are to have the church family we do. The kiddos all know Dakin, and are concerned for him, and try to include him. One of the little girls was worried because I had laid him on the floor to relax--she wanted to help him, but one of the leaders let her know he was ok, and it's better not to touch him. So sweet, these kiddos are. We are truly lucky.

Idea Gathering

Hi all! OK, so I have done my research, and we now have a number on what we would need to get a handicap-accessible van for Dakin. Yee hah! It's nowhere near as much as I was envisioning. Now we're looking at about 33,000.

Obviously, we can't raise that much. But what I'm thinking is that if we can raise as much as possible, it would help the monthly payment.

So what I'm asking for are your ideas. What fundraisers have helped you out? Low overhead and large income? If you have a good idea, please please let me know!

I do have a few little things up my sleeve, and I will be posting about them later...

Awe.Some.

So with the Olympics going on, I have been thinking about sports for Dakin. Granted, he's probably not going to be on the local soccer team, but that's ok. Know why? Because there's...

POWER SOCCER!!!

Yep, that's right. Soccer in a power chair. Just for your information, the USA Power Soccer Team are the reigning World Cup champs. So cool, right?

All you need is a little bumper thing on the bottom of the chair and a little bigger ball and you're good to go. Well, I guess you also need a team, of which there is a major paucity in our area, but fear not. We'll just start our own. I won't tell you the name, though, because it's too cool and someone will steal it.

Ok, maybe I will. I can't resist. The East Texas Rolling Thunder. I know, right? AWESOME. Let it be known that if someone steals our name, they suck. But I digress.

Anyhoo, once we get Dakin's power chair, we are going to work on soccer. I think he's going to have a ball (tee hee) pushing around a soccer ball in his chair. You can even go to power soccer camp. Awesome!

We also have a winter sport picked out. Turns out that the only paralympic sport in chairs is curling. I found some neat pics, but I can't upload them for some reason, so check them out!!
So not only will he be a genius hedge fund manager, he will be an Olympian and a soccer star.

Ok, so I know there was a lot of 'awesome' in this post, but I'm excited!

Amazing

I had another post in mind for tonight, but I have changed my mind, because my heart is really full right now.

You know, something I didn't expect from having a special needs child is how much joy he would bring to me. I swear joy runs in Dakin's veins in place of blood. He is so happy, so excited. I love--and feel so privileged to be able to--see the world through his eyes. The smallest things bring a smile to his face, and he always wants to share them. We were watching the Olympics tonight, and he was so interested in the downhill skiing--something I usually find boring. Watching his reaction to it made me stop and take a second look at the beauty of that sport. Something I would have completely missed without him there.

I love how he will find something that brings him joy, and say, 'ma ma' to make sure I see it. He'll point with his eyebrows raised and mouth slightly open in the direction of the object of interest. Now, since Dakin finds everything interesting, I hear 'ma ma, ma ma, ma ma, ma ma' all day. I am so grateful I get to hear that sweet voice constantly.

The other aspect of this is the joy I get to have from his accomplishments. Watching him string a bead or put a cap on a bottle is a miracle. Every little movement that he 'shouldn't' be able to do is amazing. I am so blessed that, due to the nature of his disease, he has taught me to slow down and treasure every movement, every laugh, smile and moment.

If you know me personally, you probably know I get caught up in moving forward, in motion for the sake of motion. I have a really hard time just sitting still and being. Dakin has helped me change that. That pause is not something I would have learned in any other situation.

Anyway. I know this wasn't terribly well put together, but like I said, my heart is full. We lost our night nurse, so I have had the privilege of spending more time with Dakin at bedtime, and it's in those little minutes that I am truly reminded how lucky I am to be his mom.

So so blessed.

Last RSV shot

When I started The Daily Dakin, I did so in hopes of being able to be helpful to others in similar positions to ours. I hoped to be able to be somewhere that newly diagnosed SMARD families could find and connect--something we had a hard time doing when Dakin was diagnosed. I wanted to offer them friendship and fellowship, or a shoulder to cry on.

While I feel that aim has been, and is, largely being accomplished, this blog has become something else to me as well. It's become a companion on our journey with Dakin and his extraordinary-ness. It's become a journal, a place for me to record the bits and pieces of our life and the joy he brings us. It has brought me a lot of peace.

So I apologize if things get repetitive sometimes. I just feel a need to write everything down. I know some of the things I write about seem so silly--going on a walk, eating out. And it may be silly, but these are huge things to us, and bits of the mosaic that make up our lives. I want all those things recorded. Forgive me the repetitiveness.

Anyhoo...that being said, I wanted to report on our trip to Dallas the other day. It was Dakin's last RSV shot, and he cried from the moment we rolled into the office. Not fun. He looked at me like I had betrayed him...

It's done, though. We probably won't get another one.

After, we had lunch at Ziziki's, a Greek restaurant. I ran in first and explained the situation, and the hostess helped me wipe down the table. They were so nice to us...I love when they do that. They brought Dakin some crayons and a kids' menu, and he was happy as a clam while we waited. Our day nurse Jane had the great idea of bringing one of his books, and so while we ate, he looked at his book and nibbled on pita.