Saturday, May 28, 2011

Dakin By The Numbers-Today

330: miles we drove today.
9: hours Dakin stayed in his back brace with just a 15 minute break. (YEEE!!! This is HUGE!)
1.25: tanks of gas.
95: degrees it was outside.
0: times he had to be suctioned while we were gone.
0: number of times I dripped midnight truffle blizzard on my new white pants (win!)
2: hours we got to spend with a sweet sweet friend.
4: number of years I have known this sweet friend.
0: times I have met her in person, until now. You see, she is one of those amazing Pumpkin Patch women who have endeared themselves for life to me with their friendship.
At least 35: pictures she took of Dakin while doing our photo shoot.
Kajillion: where I am on a scale of one to ten excited to see the photos!
At least 30: number of times he made the pirate face while she was shooting.
1: week I wish I had to hang out with her more.
Six or seven million: number of times Dakin watched the Handy Manny race car episode to and from.
12.5: hours he stayed up without a nap.
995,345/995,345: my happiness level.

We had a wonderful time today with my friend, who is an amazing, amazing photographer. Her work is stunning, and I am thrilled she photographed Dakin. I am also overjoyed to meet another of the wonderful women who supported me so much during some of the darkest times of my life. It was a privilege to meet you on person finally, Azure, and hope we get to seen you again soon!

PS, you just have to check out her website. I am doing this on the iPad and so can't do hyperlinks because I don't speak HTML, but check her out, Awesome.

Thursday, May 26, 2011

We May Have a Problem

Because Dakin is like any other child, I treat him as such. And of course, that includes time outs. Our time outs entail ceasing whatever we are doing and taking away all toys for three minutes. We don't put him in the corner-logistically that would be inconvenient and kind of counter productive- so we let him stay wherever he is. When the three minutes are over, we always discuss what happened, with me saying "ok, why were you in time out?" Dakin will answer why, say sorry and we go on with playing or whatever.

We had to do it a a lot a few months ago because he went through a little phase where he was hitting a lot. With consistency in time outs, we no longer have a problem with Dakin hitting. The time out had largely disappeared from our daily activity.

Until the last few days.

You see, Mommy has a problem with saying the word 'stupid', directed at everything in the house that happens to be acting obnoxiously- my phone, the iPad, the people on the television. Now, of course, the obvious exception to this is the people in the house. Only objects or people on the TV who are being stupid get called stupid. I am trying to stop saying it.

But little mynah bird boy has picked up on this and has started saying it. So re-enter the time out. Tonight he took great joy in saying stupid over and over, so of course he got stuck in time out. Thirty seconds into it I hear him say this: "OK, why in time out? Say stupid," obviously going over our post-time out ritual.

So...he is clearly on to my methodology. And while I am glad of that, I don't know how effective the time out was when he could tell I was laughing even though I was hiding my face.

Ah well.

Tuesday, May 24, 2011


This last weekend Dakin and I had an adventure...we got to meet a good friend who I had never actually seen or talked to in person. Her name is Sara, and she is amazing.
I don't remember exactly how we met...I think she found this blog through another SMA family's site. What I do remember is how she immediately made herself known to us and grew to be a dear friend. She has been a staunch supporter of SMA and SMARD research, helping not only us but other families raise money. Sara is one of the most compassionate and giving people I have ever had the opportunity to call friend.
Getting to meet her, her husband and her sweet daughter was a privilege. And now that I know they are so close, I am going to make sure we spend more time with them.
I know I have mentioned this before, but in a situation like we have with Dakin you learn without a doubt who your true friends and family are. Sara is one of these. I am so lucky that she crossed my path. So so lucky to call her friend.

Friday, May 20, 2011

Yo Ho, Yo Ho

This is Dakin's new pirate face. I have no idea where he got it from, or why he is doing it, but every time we ask him to smile now this is what we get. He thinks it's hilarious.
I absolutely love this picture. This is Dakin. One hundred percent Dakin. Even the marker all over his face. (We turned our backs for ten and learn).

Wednesday, May 18, 2011

Battle Wound

This, my friends, is Dakin's very first rug burn. You might wonder how a child with a very limiting neuromuscular disease acquired such an injury. I will tell you.

He was sitting on my lap and decided it would be fun to roll off it, on the floor, 'all the way over', as he says. He performed said trick maybe, oh, forty thousand times. And ended up with a rug burn.

Soooo...we learn two things from this. One: Dakin is just like every other boy in the world. He loves to roughhouse and play. And two: that limiting neuromuscular disease? I guess no one told him it was limiting.

Wednesday, May 11, 2011

Hope Will Find You

We have already more or less announced this to the SMARD community, but I of course need to do so here. We have something pretty major going on. One of the SMARD moms, Lisa, has been tirelessly searching for doctors who are researching or who are willing to research SMARD. They are few and far between, and as you can imagine, with little funding.

But she found someone. Dr. Greg Cox at the Jackson Lab in Maine has been researching SMARD. And he is a year away from identifying the rescue gene...the gene that could help our kids. We are going to begin fundraising for the lab to help push that research forward.

We are a year away from finding the key.

Let me put this into perspective. For too long we went with little hope for a cure for Dakin...unaware of researchers, not having a community of our own to form any kind of base to affect research. We fundraised in the hopes that in curing another disease, ours might be helped as well, but not with any real hope.

All that changed in the last year or so. We now have a small community...small but strong. We have smart parents working hard to help our kids. We actually have a chance now. This could actually happen. We could actually cure SMARD.

As all this was coming to our attention yesterday, I went to the gym. 'The Talk' was on one of the TVs, and I watched through closed captioning the story of a rabbi whose daughter had been diagnosed with a devastating disease. She said that one night she and her daughter were in bed studying a passage from Isaiah. The rabbi said something about how to her it meant we can find hope, and her daughter responded that the passage meant that hope would find you.

That is what has happened here. From the darkest night of abandoned hope, hope has found us.

I hope that you might help us make that hope brighter. When we begin fundraising, I hope that you will consider donating to the Jackson Lab through their non-profit arm, and help us make this hope a reality.

Monday, May 9, 2011

Storm Stories

It's that time of year again in East Texas. Tornado season. Super fun. But anyhoo, a week or so ago found us with serious storms heading our way, and of course anything like this is a major production for us, as evidenced by the above photo. What you don't see is the batteries and things against the other walls of the bathroom.

The time the sirens went off we headed into the hallway. You can see how torn up about the move Dakin was...he thought playing in the hallway was the best thing ever.
Until he got to play in the bathtub! We moved in the bath area the second time the sirens went off. It was pretty stressful, but thankfully our power did not go out (for once) and Dakin had a good time of it.

We are sadly aware, though, of the destruction and tragedy those same storms caused east of us, and pray the families affected will have comfort and peace.

Wednesday, May 4, 2011

Out of the Mouths...

Dakin's prayer tonight:

Dear Heavenly Father,
Thank you for this day,
Thank you for Mommy,
Thank you for Daddy,
Thank you for Dakin,
Thank you for Dakin,
Thank you for Mommy,
Thank you for Daddy.
In the name of Jesus,

Cute, right?

Sunday, May 1, 2011

Better Late Than Never

And we are still having technical issues...don't know why. So this is only half an Easter post. And not in chronological order either. But here you go. We start with our egg hunt in the backyard, which Dakin really enjoyed. This was the first year he got the concept of the Easter Bunny and was looking forward to him coming. Ignore the weeds.

I have no idea what this was about.
Dakin was so funny, pointing out the eggs as he found them. So cute. We came back inside to find that the Easter Bunny had delivered his basket, filled with all kinds of goodies. Matchbox cars, a Cars book, a popcorn rock (put it in vinegar and it grows crystals), and Dakin's very own pocket volcano (between it, egg-dyeing and the vinegar rock the entire house smelled like vinegar all weekend). He also got a Big Bad Wolf puppet to go with his new book.
He enjoyed it so much this year I can't wait for Christmas!!
The day before we dyed eggs. Dakin was really into that too this year.