Kindness

I just want to write about one thing today. Kindness. People, if you allow them to be, are kind. This is a recording of today's kindnesses. Just today's.

• My dad came by this morning to take my car to the service center. It's been reluctant to start lately, and a few weeks ago when I checked under the hood (for dead animals because there was this putrid stench) I noticed corrosion around the battery terminals. We thought the two might be connected, trouble starting + corrosion. Anyway, the folks at the service center offered to clean the terminals while my dad waited and they didn't charge him. (+2, one for Poppy, one for the Service Center)
• I received a text from my cousin detailing her conversations with the ACT (as in College Board) people, and Stanford Admissions as she went about continuing to help my teen-aged man-child with his college applications. His ACT date remains open until he's ready and Stanford was helpful. (+4, one for the cousin, one for ACT, one for Stanford, one for the counselor who is donating her time).
• My mom came by this morning too. She scooped poop and washed dishes. (+1+2)
• Trisha walked Chance-the-major-pain-in-the-ass-good-thing-he's-cute Dog. (+1)
  
• The school nurse and principal came to visit Sam. The nurse brought Sam a Happy Meal toy (a plastic shark that launched a plastic arrow-thing) and the principal encouraged him to aim for her. (+2)
• Crafty cooking friend, Robyn, brought and assortment of jams she made, bread, and cookbooks. She hung out and asked Sam about his favorite things: food and his animal friends. (+1)
• Mrs. Harlan brought Sam Giada's latest publications (+1)
• A new friend wrote a poem for Sam and gave it to her singer-songwriter friend and asked him to turn it into a song for Sam, and he did. They came over on this Erev Rosh Hashanah to perform the song and brought with them some musician friends and a videographer/photographer to record the sweet memories.(+100, these artists and friends also recorded this in a studio with other musicians/vocalists, and I know there was creating time, and practice time, and recording time, and travel time, and time off from the jobs that pay the bills time, and they stayed and had apples and honey and apple cake with us to celebrate the New Year-and I'm pretty sure they aren't Jewish, and they accomplished all this in one week).
  

I know, you all want news on Sam. There's just not much to report, which is a good thing. Today marks 1 month and 2 days since Nurse Donna said Sam was "on the cusp of a crash." But we made through band camp. We made it to the start of the school year. We made it to September. We made it to Rosh Hashanah. The milestones I am marking and looking forward to have become smaller, but they are still milestones.

Running in Circles

Since I've been sitting here staring at the blinking cursor, sighing heavily, I guess that means I have nothing to say. Having nothing obvious to write about tells me that nothing out of the ordinary happened today-good or bad. And that's not so bad.

Sam went with me and Bubbe to take Ben to school this morning (he went late, Abby went at the customary time. How wonderful that they are learning to be independent), and then accompanied us to Ross to shop for a new skillet. This is what we came home with.

It is Childhood Cancer Awareness month after all. And the color is GOLD. Oh, and I got my skillet.

Today was Hospice Nurse Donna's visit day.In fact, it was access Sam's port and flush it day. Sam hasn't been accessed in 6 weeks, and since he's gained some weight it's become more challenging to access him. With one poke the Donna was able to flush his port with saline and heparin. She didn't get any blood back, which would have been nice-let's her know she's really in and the line is clear. She said not to worry, it wasn't necessary to draw blood, and so he didn't have to endure multiple tries.

I think the heat's really getting to Sam. (Understand that in Grover Beach when we say heat we mean that the temperature rose above 72. It was 83 in Grover today.) Sam's left foot is swollen. He's says it's not uncomfortable, but putting on shoes to go out was hard. Nurse Donna said something about it being connected to loss of function on the left side. I hope when the weather cools down (expected high of 74 tomorrow-still hot for Grover) the swelling goes down as well.

I went for a run tonight. I'm sticking to my 1 mile lap around the neighborhood these days so I'm never more than 5 minutes from home. The lap takes me around our neighborhood school. It was Ben's school. It was Abby's school. It was Sam's school. I was a teacher there for many years. Tonight was Back-to-School night, and for the first time since 2001 the Jeffers were not in attendance. I can't let myself think about it. I choose not to go there right now.

Tomorrow is Rosh Hashanah-the Jewish New Year. Thanks to friend, Elaine, the kids have cookies to decorate and we have apple cake for tomorrow. Thanks to Rabbi Linda, there's round challah, apples, and honey. It's a good thing other people are assuming we're observing and have provided us with some of the traditional goodies, 'cause frankly I just don't care. I'm not going to services, I'm not cooking, I'm not sending cards. It's just another day. It's another day with Sam. That's what I care about.

I want to thank my friends and family in the wide world for continuing to log their miles and hours spent exercising for Sam. Showing your support in this way is a comfort to me. If you are curious how to keep or start logging your exercise, you have two choices. This: Run for the White House for Childhood Cancer Awareness, and this: Sammy Rulz, Cancer Droolz. Check out those pages and like the first one, and request to join the second one (I'll probably let you in). Then scroll down the pages and see how other folks are doing it. If you want to know how it all got started and why we are running for the kids, go here: Brian's Phirst Blog

Destructo Dog Strikes Again

As I attempt to start this post the teens are lying on the floor behind me addressing envelopes for their high school band's sponsorship drive. They are not quiet, and I'm a little disturbed because in this day of email, texting, and instant messages, they don't know how to address an actual envelope made out of paper. They also HAVE to know why the zip codes for Arroyo Grande homes and post office boxes are different. WHY don't these married people have the same last name? Do ALL California zip codes start with 9? Are you SURE? And they're laughing. I feel so normal and annoyed, and then I remember why I'm writing this...

Sam really had a lovely day. Probably for the first time in West Coast Jeffers Family History we BBQ'd on Labor Day. We had a visit with giggles from Teacher Neita (preschool teacher to all the kids), and we walked with Bubbe and Poppy (my parents) on the boardwalk at Oso Flaco Lake.

See the gold scarves? Walmart. We also found gold and white tank tops.

We arrived home to a front door jammed closed because Chance (no pets allowed at Oso Flaco) had the rug shoved up against the door and the kitchen trash dumped and spread all over the kitchen. Except for a cob of corn to which he gave special ranking with a spot on his bed.

There's more. This shot is not wide enough to do Destructo Dog's work justice.

See, it's not all rainbows and unicorns at the Jeffers' residence.

Bedtime was crappy. Sam was restless, making noises with every exhale and constantly shifting position. He said he was afraid of having a seizure. He's convinced he has seizures all night long. I tried to console him by reminding him that I sleep with him at night, and I would surely know if he was seizing all night (he's not), and I would definitely wake up and take care of him if he were to have a seizure. Finally after two .25 ml doses of Ativan and a long time cuddling with Mom and then Dad, he fell asleep.He shouldn't have to be so scared and worried. I just want to take it all away, but I am powerless.

A Good Day in Cancerland

So, where are we tonight? Pretty much the same place we were yesterday and the day before, I think. Just another day in Cancerland.

We eat. We watch T.V. We walk. We sit in the yard. We cook. We visit. We go to the store. 

So, I guess where we are is at the end of a good day in Cancerland.

It just happens to be the end of the last day of the event Run for the White House for Childhood Cancer Awareness, and the end of the first day of Childhood Cancer Awareness Month.

For months now I've been distracting myself with promoting the event, inviting my friends, answering their questions, and "liking" their posts. It's given me comfort to read their posts about the miles they've run (or walked, or whatever) in the far-off places they ran them. Now that the event is over where will I find that comfort? I'm hoping we can continue to log miles for Sam. There are two places to do it: Run for the White House for Childhood Cancer Awareness community page, and Sammy Rulz, Cancer Droolz. Starting tonight I am promoting those groups, inviting my friends, and liking their posts.

Now about Childhood Cancer Awareness Month, how do we recognize and promote that? I started by putting in a yellow (almost gold) porch light, and asking my friends to do the same. I guess I could paint my nails gold. What good does that do? If I don't connect the dots for people by explaining why I've gone gold, it does no good. Should I put a sign in my front yard? Have a special hoodie made just for wearing every day this month? Maybe there are some ideas on Pinterest. 

There's some stuff you can do here.

Blogger out. Time for bed, Erin.

This Boy

This boy

Here's where I really start to freak out. That boy. That beautiful, bright and shiny boy is the one that is dying. The boy I am caring for now is nothing like him. Except for the sweetness. And the love. And the hugs. I am grieving for a child who is standing right before me. I miss him, yet he is still here. I cannot wrap my mind around it. So I immerse myself in caring for the sick boy. I love him with everything I've got. I focus on guiding my other children through this pain and I hope there's another side. 

A few months ago when a friend asked me how I thought I might deal with this, I told her that I thought the only way through it was through it. No secret. No magic. No formula. No plan. A few weeks ago she sent me a Hopi prayer she found. It supports my thinking in some ways. In others, it goes against what I want to do. I want to shut you out. I want to be alone. But strangely I feel better when I share this. I feel better with you here.

Sometimes I Fall Apart

Changes in Sam continue their general downhill trend. Nothing major, but the signs are there. Walking just gets harder and harder, requiring more and more support. His voice, which has been a whisper for weeks, is even fainter. He's sleepy.

He's still without pain. When I ask if he is happy, he says, "Yes." He likes having Ben and Abby around more. He likes to come with me to bring the teens to school and pick them up. When I ask if he wants visitors, he says,"Yes." Every time. I'm trying really hard to control the flow of guests, not because it overwhelms Sam but because if you all come at once then he's bored for the rest of the day! He wants to eat. All. The. Time. I say, "No," a lot. "Let's wait 15 minutes." He eats a lot of grapes. And watermelon. And blueberries. And the ocassional bowl of banana pudding. Thanks to my friend, Susan, we have plenty of that.

Today in addition to a visit from Susan (who walked Chance-thank you. He's a 71 pound puppy, with puppy-like energy), Mari came over to work on King's crown, Mrs. Wadlow (Sam's 2nd grade teacher), and Mrs. Jones (school librarian) came by to say, "Hi," and finally Rabbi Linda helped us bring in Shabbat.

My mom and dad were here a couple of times today (they live less than a half mile away). Thanks to mom there is not a month's worth of dog poop in the backyard, I tossed the rotten food in the fridge, and the plastic containers it was in were washed. Maybe tomorrow Sam and I will browse through our Giada books, and create a menu. Then I will make a list and do the shopping.

I gotta give props to the staff at the high school. With my cousin, the English teacher, as their guide they have been kind and generous with my children. The teens feel loved.

As for me, sometimes I feel strong, and sometimes I fall apart. Abby only joined me for the first mile of tonight's walk, so I was alone on mile two. With no one to talk to but the dog I find myself going to the darkest place possible. Pretty soon I'm walking in the dark, crying. There's nothing wrong with crying. I know I should be crying now. A lot. But after a mile of crying I don't want to be alone anymore. Then there was a miracle. Amanda joined me for the last lap and pulled me up out of the darkness. Okay, I'm being dramatic. But it was a relief to talk about something that had been bothering me (someone dumping IN-if you are familiar with the Ring Theory, you know what I mean), instead of just crying alone.

What Ben is doing instead of going to first and second period

Poop, Panic, and Totem Poles

Sam seems to be somewhat in the same place. He slept all night, aside from a wake up around 1am to pee, without the help of Benadryl. He walks with assistance, he wants to eat constantly, he gets sleepy but refuses to take a nap, and every few days he poops his pants. He also laughs at our jokes, talks to us (in a whisper, yet on the phone-he speaks), gives hugs, says, and "I love you too."

After staying up late last night and talking about how shitty it is that Sam, "will never get to study music theory" (Ben's words), the teens decided to miss periods 1 and 2 (English and Band for both) of school to spend the morning with Sam. The three of them sat on the couch and snuggled while Abby read to Sam, and I felt free to get dressed, wash dishes, and check my email. I suspect this will be a frequent pattern in future days, and doubt Ben and Abby will want to share Sam, so plan your visits for after 10am and before 3pm when you can.

Sam and I had visitors throughout the late morning and early afternoon. Chance went for walk (jog, run?) with two gorgeous ladies who are sisters at heart. Sam loved the company; he is never overwhelmed and I appreciate that everyone puts up with Chance's barking and sniffing. 

I am terribly proud of how Ben and Abby are learning to ask for what they need and think for themselves. Early this morning they both emailed the teachers whose classes they'd be missing. In fact, Abby went to see one teacher at lunch to find out what she missed. After school Ben decided to skip band practice to hang out with Sam. Once Sam went to bed, Ben worked on homework, and then walked (and talked, and cried) with me for an hour. Abby chose to go to band practice. I know that was hard for her because it wasn't what Ben did, and she tends to follow him. During practice at the high school, about 4 miles from home, she heard sirens, panicked and sent me a text to see if Sam was ok. We have much to work on, I guess.

A totem from 2 years ago.