Lucas Camilo

Lucas began the summer with a challenge: to view — up close — 20 different bodies of water. Last Wednesday he hit his goal… just a week before summer ends and the school year begins. The day before that he wrote a blog post about it:

Yesterday I saw three bodies of water.

I have nineteen on my list.

We have to find one more before we can reach our goal.

One took a lot of off-roading to get to. It was really bumpy.

The waterfall we went to was tall and loud.

I like looking for bodies of water because I think it’s beautiful.

Nearly half of the bodies of water we saw on our road trip to Oregon. Here are a few pictures of ones we’ve done in the last month, followed by the full list (as composed by Lucas.)

Bodies of water we saw this summer.

1, July 1_ White river, Auburn WA.

2, July 3 – Lake Washington, Seattle

3, July 6 – Woodland Pond, Seattle Arbortum.

4&5, July 7 _ Columbia river, Portland Oregon and Ft. Creek, Ft. Klamath

6, July 8 _ Crater Lake, OR.

7, July 9 and 11 _ Deschutes River, Bend, OR.

8, July 11 _ Aspen Lake, Sunriver, OR.

9, July 12 _ Salmon River, Sandy, OR

10, July 13 _ Wildwood Wetland, Mt Hood. OR

11, July 14 _ Silver Lake Marsh, Mt. St Helens

12, August 1 _ Puget Sound, WA.

13, August 2 _ Lone Lake, Whidbey Island

14, August 12_ Lake Tapps, Bonney Lake WA.

15, August 12_ Sunset Lake, Wilkeson WA, Stanley Stamm camp.

16 August 20 _ Skykomish River, Monroe

17, August 25 _ Middle Fork of Snoqualmie river, North Bend

18, August 25 _ Taylor Creek, North Bend

19, August 25 _ Snoqualmie Falls, Snoqualmie

22, August 28_Greenlake, Seattle

First off, thanks to everyone who sent cards, albums, playlists, and wonderful memories to Lucas (and us) on his birthday. It was an exhausting day but he had lots of fun at his party and enjoyed reading and listening to all the things sent his way by friends.

But there is, perhaps, even bigger news: Lucas went to overnight camp last week! He spent four nights away from us in the woods near Mt. Rainier. I’ll let him take it from here…

My first overnight camp

This week I went to Stanley Stam camp.

Everyone there had a disability.

I went fishing and caught 2 fish. I caught a rainbow trout on Monday and a brook trout on Wednesday.

I rode a horse named Dream on the last full day.

It was a tall horse, so it was scary to be up so high, but it was still fun.

I couldn’t have my vent on the horse so Teresa the person who works with the horses bagged me while I rode.

I had a roommate named Christopher.
He also uses a wheelchair.

I had a friend named Nicole. We read Ferdinand the bull.

I had a nemesis named Anthony.

Olympics was one of the things I did and at bowling he was knocking down the pins.

Sounds cool, right? Except the riding the horse part!?! Yeah, we were a little surprised to hear about that… but with a good plan and lots of support they pulled it off. Here’s a video of that feat, followed by a video about the camp and its founder, Dr. Stanley Stamm.

This summer has been so full for us – often fun-filled, at times hard with surgeries, and also nostalgic as we approach the 10^th anniversary of Lucas’s arrival. On July 28^th we were telling Lucas and Ida about the day we flew across the country with Krista in very early preterm labor. And then three weeks later – miraculously back in Washington DC – Lucas came rushing into this beautiful and complicated world. He took us to meet our first incredible nurses that very night, and ever since he’s been leading us through the worlds of medicine and care workers and on toward penguins and disability community, dinosaurs and fart jokes, classic rock and so, so much love.

We are so grateful to the incredible friends and family who have supported us along the way, through this blog and the many other ways you’ve surrounded Lucas and our family with love. From the bottom of our hearts, thank you.

So to mark Lucas’s 10^th birthday (August 17) we wanted to offer some ways you can help us celebrate.

For Lucas, the child of short wish lists, you could send him an email, e-card, video or old-fashioned card in the mail wishing him a happy birthday. Or, if you like music, you could send him a mixtape or playlist with your favorite music. He loves a good Spotify playlist, but we can also rock old-fashioned CDs, music on thumb drives, etc. His favorite music is classic rock and metal, but he’s open to most anything.

And for us… for those of you who have been around since the beginning, we would love a memory you have from that time when Lucas was a baby. Maybe you have a short (or long!) story of a memory you have of our family in those first days or months or years. The beginning was so life changing, and so blurry with fear and post-partum hormones and then the bewilderment of learning homecare machinery and systems.   There were sweet, wonderful moments, incredibly hard ones, and even some ridiculous times. Memory is so funny and uneven – I (Krista) remember specifically Mary and the other dear folks from All Souls who helped us move AND THEN CLEAN our old apartment on August 16 while I was on bed rest. I remember Alan’s recipe for vegan banana coconut ice cream (Amaretto was the one other ingredient) which he made for us as part of our meal train. I remember the traffic on the way out of the hospital the day we came home with Lucas. And I remember the first friends who offered us introductions and said “you might need community of folks with disabilities.” I wonder about all the other random and specific memories I lost along the way. And of course there are other memories that are forever etched in our souls. And we’d love to hear your take on those moments, too.

No pressure – a card/e-card for Lucas is plenty!  But if you have a few minutes, we’d love to hear from you what you remember of our beginnings as a family.   Feel free to direct the story to us, or if you’d like, you can write it as a story for Lucas and Ida.

You can send things via email or snail mail, or if you want it to be part of this blog, you can use the comments box here.  To use the snail mail, our address is 3145 35^th Ave S, Seattle WA 98144.  Thank you for the Lucas love!!

Last Friday Lucas had another surgery, his second in just over a month. This time the main focus was extracting teeth, but as long as he was under anesthesia the surgeons also went ahead and replaced his ear tubes. We actually didn’t know until 24 hours before check-in whether it was actually going to happen because our insurance denied the dental portion of the procedure. After lots of calls and messages and unhelpful conversations we finally figured out that it was necessary to submit the paperwork to a separate dental subsidiary of our main insurance carrier (would have been nice if they said that in the denial letter!) and that pre-authorization wasn’t required. Sigh. Someday we’ll elect a socialist and have a single-payer healthcare system… but until then I guess we’ll keep spending hours a month dealing with bullshit private insurance companies.

Anyway, we assumed the surgery was relatively straightforward and so weren’t too worried about it. But then it took almost two hours, and we found out later why: they extracted a total of 13 TEETH! Myotubular myopathy has effected Lucas’s mouth in funky ways, including having adult teeth come in early and baby teeth not fall out. So in order to avoid painful crowding they had to remove some teeth… we just didn’t realize quite how many.

Meanwhile, he had the small tubes in his ears replaced. They help drain fluid that builds up behind the ear, thereby preventing hearing loss. We’re happy to not have Lucas yelling “what?!?” as often now that the procedure is out of the way.

Over the weekend Lucas was definitely in recovery mode, resting a lot and hardly getting up in his wheelchair to go out. He also had a lot of swelling in one side of his face, leading to his temporary nickname, “the half squirrel.”

By Monday morning Lucas was well enough to head off to camp. Here’s his report so far…

Aquarium camp day 3

This week I am at camp at the aquarium.

Yesterday each of us made puzzle pieces of a six-gill shark.

Today we put them together to make a very complicated six gill shark puzzle.

I looked at phytoplankton and zooplankton on video.

Everyone else looked at plankton under a microscope.

We saw dogfish in the Underwater Dome.

A marine biologist talked to us about six gill sharks.

It’s nice to be back home after a long road trip.

Raven is really happy to see us.

We’re thinking about going to Canada for our RV trip next summer.

I am looking forward to aquarium camp next week.

I’m also looking forward to playgarden camp with Ida.

My Top 5 things about the road trip:

1 Crater Lake trolley

2 The Harris’s Hawk

3 The logging museum

4 Mt. Hood

5 Seeing Grace the swan and her cygnets

Day 7

Today we went on the best hike ever.

It was so beautiful.

We saw salmon through a window at the bottom of the Salmon River.

We went on a boardwalk over Wildwood Wetland.

At the Sandy Music Festival

We went to a music festival in a town called Sandy and saw a band called Fiddlesticks.

They were really good.

It’s the last night of sleeping in the RV.

I’m happy because we will finally see Raven (our cat), but sad because I LOVE RV trips.

The blogger at work

Day 5

We were at Grandma and Gary’s cabin and went the Sunriver Nature Center.

We saw an owl show and then got to see Grace, a swan and her cygnets up close.

Grace has her own true story. It’s a book about how she was rescued.

Day 6

Today we went to Mount Hood.

It was amazing and snowy.

We made up jokes about mountains.

I talked to Mount Hood Hal-style. Like talking to things that cant talk back. I said, “Hi Mount Hood, its me Lucas, nice to meet you!” And “You are mountainy and hoody, all at the same time.” And then when we left “Bye Mount Hood, nice to meet you, send me a postcard!” Then we did a pretend performance together and Ida was silly.

We came back to the RV park and went on a nice walk. We saw our 9^th body of water, Salmon River.

Day 4 of the Road Trip

Today we went the high desert museum near Bend, Oregon.

We saw lots of reptiles and birds.

We even saw the endangered Idagle (That’s a rare wild Ida perched in its nest.)

There was a reptile show at the museum.

Then there was a really cute otter show outside.

OK, here’s the special part.

There was a birds of prey show that I couldn’t go to because it had bumpy terrain on the way that wasn’t wheelchair accessible. Kelsey the person who did the reptile show, wasn’t happy about the fact that I couldn’t go to the birds of prey show so she made a special show just for us (well, mainly for me but also for all of us).

There was a skunk and a bearded dragon.

But the best animal was the Harris’s Hawk.

It was huge. I could feel the wind of it’s wings as it flew over my head.