Amazing kid (August 17)

Today is Lucas’s 8th birthday. Over the past few weeks we keep saying to each other, “has it really been eight years?!?” I’m sure kid birthdays have a way of doing that for a lot of parents, but when your kid has been through what Lucas has — barely surviving the first week of his life, living with a tracheostomy and ventilator, a near-death experience when he was three… I could go on — it feels even more triumphant that we’ve made it this far.

We also find ourselves getting nostalgic about his different phases of his life, which are often fueled by the fact that we have a 2 1/2 year old who is going through similar stages. “Remember when Lucas was two and he demand that we read the same three books over and over again, and therefore could recite them from beginning to end as if he were reading it himself?”… “Remember when he was Ida’s age and loved his Roy and Silo penguin figurines so much that he carried them everywhere?”

More than anything lately, watching Lucas hang out with his suddenly much-more-interactive sister has been wonderful.

The other day we got Lucas in the bathtub and Ida insisted on getting in with him… which, as both of them grow bigger, proves to be somewhat of a challenge. But we pulled it off, and then watched as they had a hilarious exchange about the plastic dinosaurs that Ida brought along. She went through them one by one “ceratops… kylasaurus… stegasaurus… rackisaurus… t-rex!” holding each up to Lucas as she named them. And Lucas just beamed. In fact, he turned red with joy and could hardly speak he was so proud of her. Finally he managed to sputter, “she knows all her dinosaurs!!” Then Ida started plopping them one by one into the water and saying, “down he goes… and swiiiiimmmm!” And Lucas turned even more red with laughter and shouted “do it again Ida!” as she grabbed another dinosaur and plunged it into the tub, sometimes smacking his leg in the process.

It’s hard to explain how happy it makes us to see them interacting in this way. There are other games that they play together but almost always with our help, and on this occasion they were going at it alone, fueling each other, cracking up. But one thing really struck me at that moment: just how amazing Lucas is to feel so much pleasure and pride in watching his sister. You could imagine it being very different, because when Lucas gets lowered into his bath chair there’s not much he can do on his own. He can’t pick up the dinosaurs himself or do much to splash around and play, except with our assistance in holding and guiding his arms. So at that moment and many others, Ida is walking embodiment and demonstration of his own limitations. Yet is he resentful or upset about it? Not a bit. To the contrary, he feels pride in all of Ida’s ability, and absolute pleasure to be able to just sit back and witness her doing her thing. What a kid.  And Ida clearly sees it, too.  She sometimes declares, unprompted, “I give Lucas a hug!”

 

17th August, 2017 This post was written by burke 42 Comments

More summer chronicles (August 8)

Here are a few of Lucas’s most recent blog posts, starting with an email to one of his favorite bands in advance of seeing them in concert today:

dear recess monkey .

i listend to one of your albums this
morning . are you going to sing any wonder
bees songs? this is because it is one of my
favorote albums . one of my favorote
songs on there is the wonder bees reemix .
see you at your concert today .
Love Lucas

the recess monkey concert .
they played jet pack .
i got a new recess monkey album .
i figured out that wonder bees is actualy wonder stuff .
it was in curcland .

 

my day
i went to the park .
we saw crows & a squirrel .
we went on the swayfun .
we walked around the tennis court .
we saw a trail .
it went uphill .
it was very steep .

 

the 2 advetures
i went to the issaquah library .
we found a book about a fish that makes jaz music .
we also found a book called pete the cat & the bedtime blues .
then i got a butterfly kit at the goodwill .

august 2 2017 .
i went to an emoji movie .
it was soooooooooooooooooooooooooooooooooooooooooooo funny
the part i liked the best was when gene went up in a balloon .

going to a park in bellevue .
no one had ever been there before .
i got my toes all wet .
i bounced on a trampleene
i laid down on a swing .

8th August, 2017 This post was written by burke No Comments

Mariners Game, Zoo, Infusion (July 26)

Three days into the week, three more blog posts by Lucas. Chris is his friend who has the same neuromuscular condition (myotubular myopathy) and really likes to hold hands with Lucas. And the “infusion” he speaks of is a IV drip infusion of a drug that helps improve his bone density. 

the mariners game .
it was loud so i wore headphones that made it quiter .
ripple said a flyball is when the ball goes up in the air & a groundball is when the ball goes along the ground .
i got a mariners bouncey ball at a store
i knew there were no donkey shirts for gichy gichy & goo .

 

what it was like to go to the zoo with chris .
it was fun .
my favorote animal was the bear .
i fed the budgis
the cocatoo was eating my fingers!
i saw a baby giraffe .
i liked holding hands with chris .

 

i got an infusion .
i only got 1 iv poke .
gichy gichy & goo got it too!
it took a couple of hours .
it didnt hurt .
i am glad that it is over & that i dont have to do it again for a long time .

 

26th July, 2017 This post was written by burke 3 Comments

Haircut and more (July 23)

Splash (Lucas) finally got a haircut after a few years of refusing. He also finished a good week of camp, and then we went up to Whidbey to hang out on a farm with lots of friends. We played out in a big field with a kite and also made up names for the donkeys. Later we went out to dinner and played a game Splash made up called Hee Haw Name that Tune. And there was lots of gichy gichy gooing which is hard to explain, but anyway, I just figured I’d give a little synopsis of everything Splash writes about since he’s goofy guy…

morning adventure

i went to the west seattle library for a preasentation called legend of dragons .
i got to touch a turtle named niles .
he was 1 year old .
i also got to touch snake skin .
i also got a haircut .
dunk said that it is a good thing i am famous beecause i look a lot difrent with shorter hair right?

 the last day of playgarden camp .

hamelton said that when i have a great time it
goes by fast .
playgarden camp went by fast so that means
i had a good time .
dinosaur camp did that too .
it was langstin’s birthday
i played duck duck goose . .

 

what it felt like to be at jills farm .
it felt great .
i fed a donkey .
there were 3 but only 1 got into my grass .
there were 2 other gray ones that didn’t like it
for a while but finally got into it later .
there was an opposite of gichy gichy goo
called goochy goochy gich .
i went in somthing like the hanging bed .
i realy liked the up & downs .
and you know what the squid kite did to me ?
it gichy gichy gooed me .
a lot of times .
i kept asking ripple if he was comeing back
around for a gichy gichy goo .

 

doing hee haw name that tune .

gichy gichy & goo were there of course
because they are donkeys .
gichy & gichy are the gray twin donkeys & goo
is a black one .
it is too hard to tell gichy & gichy apart .
but the best way to tell them apart is one is a
high gichy & one is a low one
one is a slow one & one is a fast one .

24th July, 2017 This post was written by burke 3 Comments

More blogging by Splash (July 17)

Splash (aka Lucas) has continued to blog almost daily. As you can see, many of his posts concern current passions, namely the song Tickle Time (gitchee gitchee goo) and the sea horse Ripple and his 499 brothers, each one with a number for a name. Also, last week was Dinosaur camp! Oh yeah, and Lucas is trying out some fiction writing too which is exciting (see “The story of 19 in the lobby…”

 

the tickle time book .

it did not have all the words from the regular
song but some .
we went to a toy store in coopville .
that is where we found the tickle time book .
it was just us- splash bubles dunk & ripple .
then dunk & ripple decided what was the best .
dunk & ripple had a comforonse if i should get the book or
not . one said i should & one said i shouldnt .
i realy said i wanted it .
i did get it & i was super happy .

 

how it felt to be at dinosaur camp again

i still have 3 more days to go
we saw a quezataqatilis video that showed
how it flies and how big it is
i made a trilobite .
it was super cool .
olivias was cool to .

 

day 5 of dinosaur camp- the last day .

i noticed that dinosaur camp went by super fast .
19 has made his home in the lobby .
that is beecause i saw him in the lobby yesterday .
we exploded our volcanos .
mine was the best .

 

the story of 19 in the lobby of the burke museum .

i see 19 in the lobby
i said hey 19 .
19 said i love this place so much that this is going to
be my home .
then i came in .
19 said i have a hard time swimming.
& i said dont worry i will push you around this place.
so 19 said thank you splash .
so i took 19 to a docter so that he would have a
better time swimming .
then he had a better time swimming & he could
swim on his own .
then he could swim all around the burke museum .

 

last night we went to flying squirrel a resteront .

ripple told us some stories about his brothers
the higher the number the more trouble .
so the most trouble is 499 .
i saw 56 & many others of ripples brothers .
we did gichy gichy goo 30

 

how it felt to be back at church after our roadtrip

olivia was going to oregon .
we all did a goodbye to her at the end.
i said i was grateful for bubles .
my favorote song was let your little light shine .
i had a splash name tag .

18th July, 2017 This post was written by burke No Comments

Blogging machine (July 9)

Well Splash is back at it. Four blog posts in the last five days!

 

how it feels to be on the outer reef aka whidbey island
gush & wort aka nona & papa were there of
course .
nona is wort & papa’s gush .
i niknamed ripple zipple .
i am doing kichi kichi koo all day long .
but not right now .
i caught some crabs .
i made up this game where the crab is just sitting
there & suddenly the dilophosaurus would push it off
& it would speed off.
i also saw a big starfish & a little tiny baby one .

 

july 7 bluebery picking .
it was very fun .
i was the best bluebery picker in reef town .
i gave my soropods some .
they LOVED it .
walter s & his family were there too .
we got sooooooooooooooooooooooooo many
blueberys in our pail .

 

 

how it felt to get back in my powerchair after a
year of not driving it very much.
it felt great .
i did the greateest driving ever .
dunk, hamilton & even myself were proud of me
.
i went to the park .
i went in the tenis courts .
i am learning to cross inter sections quickly
i can speed down the sidewalks in p3 . .

 

one small adventure .
it was
sooooooooooooooooooooooooooooooooooooo
oooooooooooooooooooooooooooooooooooooo
oooooooooooooooooooooo short that you didn’t
notice it .
we were having an adventure free day
i kept saying this is an adventure
i gave bubles a ride in my lap .
i went to the park.
bubles held both hands (aka fins)

9th July, 2017 This post was written by burke 3 Comments

5 things i love about ripple (July 3)

Lucas continues blogging!  Today he wrote a Ripple (aka Burke) tribute.   Enjoy!

5 things i love about ripple .

this beacause his birthday is tomorow!
# 1
i love that we are so funny together .
# 2
i also love him because we snugle in favorote & read books together .
# 3
i also love him beacause he helps me with everything.
# 4

i also love that he is so nice
# 5
i love him because we play a lot together .

3rd July, 2017 This post was written by krista 9 Comments

What it was like to be at the Eli Rosenblatt concert (July2)

We got back last night from our road trip but Lucas isn’t done blogging… as I drove the RV back to Vancouver this morning, the rest of the crew went to the album release party of local kids musician Eli Rosenblatt, who was playing right down the street…

 

july second 2017

what it was like to be at the eli rosenblatt concert .
it felt great.
sadie & her parents were there too .
eli rosenblatt gave us an album called love .
in fact he sang a song called love .
in fact he sang one of my favorote songs called hey mister dinosaur .
of course it is my favorote song beacause i LOVE dinosaurs .
one of my other favorote songs is elaphant car
he sang that too

2nd July, 2017 This post was written by burke No Comments

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