Dama and the Redwoods Part 1

Last spring my mom decided that she really wanted to show Toe the California Redwoods. She was able to get away for three nights and four days, and began planning an ambitious and rigorous road trip. When we found out that my sister's family planned to go to California to visit her husband's family, we decided to work out schedules and meet up with them, so "Dama" could take all three of her grandchildren through the Redwoods. We spent an average of 8-10 hours in the car each day for four days. The kids were fantastic, my brother-in-law was a sport (listening to us singing camp songs for hours) and my mother was a HORSE, choosing to do the entire drive herself.

Here are some highlights:
Day 1:  The Drive South
Toe's first visits to Ashland and the Oregon Shakespeare Festival. We spent almost every vacation of my childhood at the Shakespeare Festival and many in my adulthood. J and I haven't been in about fifteen years... I was pretty overwhelmed taking Toe into the open Elizabethan theatre. Toe said, "They put shows on HERE? That would be so bright and HOT!"

"Alas, poor Yorick!" Toe read synopses of Shakespeare plays on the way down...

The day we were there, it was 100 degrees and my poor coastal boy wilted pretty quickly. A quick trip to the playground and a dip in the creek in Lithia Park revived him enough to get in the car and keep going.

A truck of every color!

Day 2:  Connections

We continued south to meet up with my sister's family at the San Francisco airport where they returned their rental car.

You don't see these every day!

We met up, shoehorned four more people and their luggage in (and on top of) Mom's van and headed north to visit Mom's cousins.

Cousins reunited!

First time for the kids on the Golden Gate Bridge. Typical SF weather.

We had a great view of Toe's Grandpa Boat's old Coast Guard station

At Mom's cousin's house, we picked mulberries, played games, and had a wonderful dinner before driving another hour to our hotel.

Dama and the Redwoods Part 2

Day 3: The Redwoods

Day 3 was the day Mom had scheduled for the most experiences and fewest hours of driving. I think we still were in the car about 7-8 hours. The day started with a detour to the coast to see one of many "glass beaches." It may look similar to north Oregon beaches in the photos, but the sand was SO different!

Next, we drove to the Chandelier Tree and spent some time doing photos and exploring.

Mom's van wouldn't fit through with the luggage on top!

We continued up the coast to the Oregon border, taking time to stop to "hug a tree" and see Avenue of the Giants. By evening, conversations were happening like this:
"Hey Toe! Look at THAT giant tree!"
"Mom, they're all giant trees."

Day 4: We're On Our Way Home
The last day, we visited a National Park visitor center and drove straight home. It was a long four days but so worth it. We all were pretty exhausted by the time we reached our beach. My sister's family was able to stay a few more days and we took advantage of the time to enjoy time together, having bonfires and family time.

Birthday Boy

 Toe turned ten this week. He has lived a DECADE. When Toe was a month old, my mother found a bicycle at a garage sale and bought it for him. At that point, the thought of living with Toe's cystic fibrosis was so difficult for me that I told Mom I didn't want to see the bike. I couldn't. It caused me so much anxiety, she had to hide it on her front porch. Toe was so little and fragile, I was terrified that he would never grow old  enough to learn to ride.

It turns out that the kid's a fighter. He has amazing resilience, and when he gets the right medications, his body responds really well. Although he has a chronic illness, he spends most of his time as a healthy, thriving child. We have been incredibly lucky.

The bike Mom bought has now been ridden and outgrown. Toe long ago shed training wheels and finally, LAST WEEK, mastered the subtle art of starting himself, rather than needing a push each time. We have actually been on a couple of family bike rides and are now anticipating the adventures we can have.

Toe's health could turn with any cold, and during flu season we do due diligence to keep him healthy: flu shot, hand washing, shower after school, avoiding large crowds... but it has become simply part of our routine.

We have all grown in the last ten years. J and I have a greater understanding of Toe's illness and what we need to do to provide him the best opportunity for health and growth. We also know that all of the maintenance and prevention we do might not keep him from getting sick. I am learning to let go of that feeling that the "other shoe is going to drop" and enjoy the present moment. There are challenges ahead. Some, including a surgery for nasal polyps, are on the near horizon. Others, like puberty, high school, and college, are out there waiting. I don't dwell on them. I can't predict where we will be with Toe's health when we get there. But they don't make me freeze the way they once did. This acceptance is an ongoing process. It is easier when he is healthy than when we face long stretches of illness or admission to the hospital; but each day we are learning how to navigate this highly unstable lifestyle and to enjoy the present moment. And truthfully, there are SO MANY joys.

The candles to share with the Texas Grandparents on an improvised "cake"

SO. The tenth birthday. Toe went to school. He arrived home to streamers and balloons. He shared "blowing out the candles" with his Texas grandparents via FaceTime (see our impromptu cake above - the real one was in the oven), called his cousin, and later spoke with his Uncle Awesome who called from the jungles of Peru. One of my dear friends stopped by to bring Toe a watermelon (the key to his heart) and huge hugs. We pulled a gallon of freshly squeezed apple cider (from our backyard apple trees) from the freezer (J and Toe went to a cider pressing with friends in October) and I managed to sort of decorate a cake (a huge feat for me! The whole thing looked like the "crumb layer" for a while).

The inside of the cake.Yes, that much food coloring IS frightening.

A Minecraft Creeper. Or a frog. Your choice.

Toe had his very first sleepover. His best friend arrived in time for dinner (brisket from Texas from the Texas grandparents and "the fixin's" - potatoes, corn, slaw, white bread...). Toe's friend is sweet and easy-going and the boys played really well together all evening. They stayed up VERY late, but were respectful and did not get cranky with each other, although Friend kiddo was tired and Toe was wired and pacing. They woke up early enough in the morning to play for a few hours before Friend's dad picked him up. An hour after Friend left, my mom and step-dad arrived to share a little time with the birthday boy.

The days were kind of magical. J and I were kind of excited to face a new challenge (a kid sleepover!) that did not have a medical bent. Toe was able to be a regular kid enjoying his birthday (albeit, one who does breathing treatments and takes pills...). Friend kiddo completely went with the flow, keeping Toe company during breathing treatment and washing his hands regularly. Toe floated blissfully through the days.

THIS! IS! SPARTA! XD -Toe

Ten. I am thrilled. This experience with this boy is a beautiful one. It is sometimes hard, sometimes frustrating, sometimes scary, but those hard times make the joyful ones that much more precious.

Eclipse - a few percentage points makes a difference

We thought that 98.6 percent totality would be enough for us. The eclipse seemed like a lot of hoopla with the possibility of horrific traffic there and back. We knew in our cloudy part of the world, the chances of seeing anything were slim, but we weren't worried. It all seemed like a crazy fad.

 A dear friend of ours remembered the one from 1979 and has been waiting most of her life for another chance to see a solar eclipse. She planned to drive to Corvallis for the event and bought enough special glasses for all of us. Her enthusiasm sparked our interest, and we did some quick research and educating just in case we MIGHT get a chance to see it.

Nature was on our side. The clouds cleared early and we watched as the moon slowly covered the sun's light. Toe's first comment was, "It looks like a cookie with a bite taken out!"

We had tried to make a pinhole viewing device as well, but it never worked for us (my sister, following the same instructions, made a magnificent device that showed the eclipse, even over Face Time). We experienced the drop in temperature, the crazy onset of crickets, the eerie half-light, but we did not see any stars or solar flares. Our old dog Sasha stayed in the back yard with us but was restless the whole time. Jason was particularly moved and said that he could see the attraction of seeking the path of totality.

Toe and I actually watched the event twice - once in our back yard and once on Face Time with my sister and her younger daughter. It was fascinating to see how they experienced it - the similarities and differences of being half-way across the country, but also near (but not in) the path of totality.

My poor mother, a few miles southwest of us, experienced mostly fog. Apparently, it was a sunny day until the eclipse started and then the fog rolled in and stayed until the eclipse finished. All I can figure is that the heat of the sun was burning off the morning fog and without the sun's heat, it rolled in as it often does. 
 
After conferring with friends, we have determined that those two percentage points make ALL the difference. What we experienced was cool; what they experienced was a connection with the galaxy. Perhaps next time it comes around, we'll have to track it down.

The trees in our yard did a better job than my home-made pinhole viewing device.

Added photo: the yard debris from a major laurel hedge and spruce trim

Great Strides Update

2017 Great Strides: Toe's Green Team

Toby's Green Team raised $2800 this year for the CF Foundation's Great Strides walk. We had a great turnout of friends and perfect weather (read: weather in the 60's) for the 5K. As usual, we finished last because we were having too much fun walking.

Thanks to everyone who participated in the walk and to everyone who donated to the CF Foundation. I am REALLY behind on my thank you notes, but we are SO GRATEFUL for your support!

As a side note, we just had Toe's 3 month check up and his health is fantastic. We rely daily on so many medications to maintain Toe's health, but we are grateful that they are available.

Superheroes - the bravest is in purple.

Old Friends

It's all Fun and Games

Did I mention that we love playing board and card games? We each have our favorites. J and Toe love to play Heroclix and Yug-i-oh. Toe and I love to play Dragonwood, Gubs, and Holiday Fluxx. As a family we enjoy: Steampunk Munchkin, Legendary Showdown (Girl Genius pack), Bananagrams, Forbidden Island, UNO, and anything else we can think of. Toe is ready to learn to play hearts, which was my dad's favorite.

We play outdoors when we can and Sasha loves to spend time with us in the back yard, alternating between sunny and shady spots.

Spring

Eyes dilated much?

We are fully in Spring and I am stuck somewhere in January. I don't know where the time has gone.
We have had a number of Doernbecher visits, for Toby's ADHD as well as CF appointments. We have put Toe on Adderall (a medication for ADHD), increasing dosages slowly, and it has really helped improve his ability to sit and focus in the classroom. Because this medication is notorious for reducing appetite and affecting sleep, we are only able to give him doses at 8am and 12pm, covering school but not evening home life. We're still adapting and adjusting, which means many trips to Portland to meet with the doctor about dosage and other matters.

We also had a clinic visit coupled with some other appointments that included an eye appointment and took two days. We stayed overnight in Portland and went ice skating (Toe's second time ever).

Toe actually caught on pretty quickly. He was able to do short stints away from the wall without a parental hand by the end.

(Toe's eyesight is great, by the way). Toby's stomach problems have mostly been resolved as well. Our gastroenterologist is great.

The night before Easter, Toe became very ill. It was a long night and we think the Easter Bunny had a hard time knowing when to visit. We also suspect that he/she did not want to get sick, because there were baskets on our table, but no eggs hidden this year. Toe felt pretty cruddy Easter day, so we stayed home and rested. Whatever he caught triggered a bacterial party in his lungs and his cough got worse over the next week. We now have him on oral antibiotics (this is his first exacerbation in about a year) and are doing three breathing treatments a day.

Toe is now at an age where he realizes how much time three breathing treatments a day takes and he is pretty unhappy with the arrangement. I'm sure the high doses of antibiotics are not making him feel all that great either. He has been temperamental, which is so very unusual for him.We're all doing the best we can and hoping he'll be feeling better soon soon soon.

J and I are tired, too. And maybe a little cranky. We're all trying to take one day at a time and find joy in small moments. J and Toe have begun making jokes together... a pastime that they both enjoy thoroughly, and we have all tried to find the humor in our situation. Toe decided the other night that if he were a vegetable, he'd be a stem of broccoli (because of the curly head). We're laughing where we can. We're getting together with friends as we can, trying to practice self care, and take care of each other...

I could do with a little sun.