Tis the Season

For Dakin to tell me 'no camera'. Oh yes he did. Here I am, innocently trying to snap some pictures while decorating the Christmas tree, and the boy is telling me no camera. Oh well.

Daddy started out like this, but ended up getting into the decorating. These are the only pictures His Majesty would allow me to take.

So there's our pretty little blue tree. Dakin's favorite part was kicking the ornaments he could reach with his little foot. Later, though, he really enjoyed sitting in front of it and looking. Yay holiday season! We have Santa pics coming soon! (Yes, we already did them...ha!)

Happy Goofy

That's Dakinese for 'Happy Thanksgiving'. Sorry to be posting late, but I just wasn't feeling it yesterday, though we are beyond grateful for everything we have been given. And I should enumerate those blessings, so here they are:

We are grateful for:

• The people who provide the electricity to run Dakin's ventilator
• The doctors, nurses, therapists and case managers who worked hard in school to become great, and who continually work hard to keep Dakin healthy
• Our amazing nurses, who love Dakin like their own
• A medicaid system that has provided for his every need
• An insurance company that has treated us fairly and with integrity
• Yogurt and Carnation Instant Breakfast, since that is the bulk of what he eats
• The Imagination Movers, Mickey Mouse Clubhouse, Chuggington and Little Einsteins, for getting him through countless vest treatments and eating sessions
• Our families, for being there for us and loving us
• Our church family, who has loved and supported us like a real family. We truly feel they are one
• Dear friends with whom we share the weight of a medically fragile child
• The countless people who bend over backward for Dakin without even knowing him
• Markers
• Books
• Powerchairs and suctioners
• And most of all: a little boy who shines with life and happiness. Who believes he runs the world and lets you know. Who loves folding clothes and cleaning closets, singing songs and reading books and playing with play-doh. Who is the light of our world.

I could go on and on. We are truly, fully, and immensely blessed.

We spent the day cleaning closets and eating. (Look, that's just how I roll. I like cleaning. :) ) At dinner, Dakin said yes to being grateful for Mommy, but then said no to everything else until we got to Kamie (you may remember his church girlfriend). He's evidently grateful for her. He decided he was grateful for his nurses too. Dinner was so much fun--with him at the table, of course refusing to eat anything, but yakking up a storm and running his little hand along the table. He did manage to stick his hand in the cranberry jello...I'm grateful that he can do that too.

We hope everyone had a wonderful Thanksgiving!

The Presence

Jonas was laid to rest today. I have been thinking about him all day, him and his sweet family. Looking at the clock, subtracting an hour for Utah time, praying for Whit and Lindsey's peace.

We took Dakin out for our customary walk on nice days. I wasn't keeping much of a conversation up, thinking as I was.

But then it happened.

The butterfly. It flittered right across our path. Orange and perfect, at exactly 12:15 pm.

It was a message to me: a message of how Jonas' parents are being cared for by unseen hands, and how we will be cared for when our time (I hope it's a billion years from now) with Dakin comes.

That little butterfly was a tiny bit of peace for me. It reminded me of a quote I read recently:

Joy is not the absence of pain. It is the presence of God.

Rest in peace, sweet Jonas.

Jonas

Sweet Jonas passed away last night. He would have been three in less than a month. I am heartbroken for the Coleman family, and pray for their peace at this time. Jonas--you, your beautiful blue eyes and your sweet spirit will not be forgotten.

These are the lyrics to 'Butterfly' by the Imagination Movers. If you know the song, it is an upbeat tune, but the lyrics have always touched me and made me think of our SMA/SMARD kiddos. I can't listen to it without crying. I thought it might be appropriate, so here it is:

Butterfly won't you spread your wings,
Above the green grass and everything.
Got to fly.
Every color floating under the sun,
Paint a picture for everyone.
In the sky.
Butterfly won't you fly away,
A flash of color on a sunny day.
Friend of mine, won't you spread your wings and fly,
(Bye bye, butterfly, hope he's never far away.)

Butterfly floating in the breeze,
Across the flowers and over trees.
High and low.
Flitter out, putting on a show,
Fly away when I get too close.
Where'd you go?

Butterfly, time to fly away,
A flash of color on a sunny day.
Friend of mine, won't you spread your wings and fly,
(Bye bye, butterfly, hope he's never far away.)

Pretty little butterfly,
Painting pictures in the sky.
A flash of color overhead,
Purple, yellow, bronze and red.
(Bye bye butterfly)
Pretty little butterfly,
(I hope he's never far away)
Hope you're never far away,
(Hope he's never far away)
Hope to see you in the sky,
(Hope he's never far away)
Flying on a sunny day.
Butterfly.

The symbol of the butterfly is a powerful one for me, always has been. It has always struck me as a perfect symbol for a child who can't move on their own, as well as being a good description for these kids--they come, they touch our lives in so many ways, and then they've flown away.

Jonas is now free to spread his wings and fly. We will be looking for you on sunny days, and hope you're never far away.

The View From Here

...is this. Dakin 'walked' all the way to the 'big' street the other day, and at one point he told us we couldn't walk near him. So we trailed behind, enjoying him taking in his surroundings--all by himself. It was a beautiful thing.

Conversations with Dakin: Goodnight Edition

I laid Dakin down for his nap today and gave him a few toys to entertain himself with until he fell asleep. He played for a while, and then I hear this:

"Good night. Good night Mommy. Good night Daddy. Good night car. Good night Mommy. Good night car. Good night big car. Good night merry-go-round."

Cute. Cute cute cute.

Wordless Wednesday--Freedom

Dakin feeding himself sitting up. For the first time. :)

Know What This Is?

See what the little boy did with it?

Yep. Ate it all. Now, considering that just a short while ago he would eat maybe 5 bites of mac and cheese...and adding in the fact that in the last two years we have had major eating issues...well...

Great day in all. Went outside in the beautiful crisp fall air and practiced with the power chair...he got all the way to the end of the street and most the way to the 'car road' (as he calls it) to watch the cars go by. He helped me with the laundry (the 'clones'. I've tried to tell him it's clothes, but he insists on saying clone. It's kind of funny).

At this time of thanksgiving, I am well aware of how much I have to be thankful for. :)

Power Chair Practice

It was a cold but beautiful day out, so I hauled Dakin and Jane outside to practice in his wheelchair. He's still not that into it, but since we live waaaaay down at the end of the street (where that white van is), you can see he's moving a lot anyway.

At one point I had to sing "Inch Dakin"--a variation on "Inchworm" that he just thinks is the funniest thing ever.

Inch Dakin, Inch Dakin. Measuring the inchy things. You and your power chair will probably go far...(though the version yesterday was 'you and your power chair aren't going very far.' It was like pulling teeth!!)

Dakin eventually gets sick of the paparazzi act and tells me 'no more'. He's still cute even when he's complaining.