Except for the vast array of visitors, today was much like yesterday in terms of Sam's sleep (or lack thereof), his difficulty walking alone, his inability to verbalize; in short the general downhill trend. He took one good, hour-long nap this afternoon and was asleep in his seat by 6:30. I have to walk with him and steady him. He responds best to yes/no questions and needs lots of wait time.
This morning I got away for a short run with my friend, Deb. We ran down to the beach like we always do and got caught up in the midst of the Grover Beach Dune Run Run 5k/10k. People were cheering us on, clapping for us, stopping traffic for us, and offering water. It was really uncomfortable. Let's be clear, we didn't take any water, but I felt like I was trespassing.
Later we had a sundae supply delivery by the Rojas family, and we met a new friend, Heather McKenna-who is training for a marathon and logging her miles for Sam. People are generous and kind.
We got some interesting mail. We received Sam's STAR test results. Leaves me wondering what he could have done if he didn't have cancer and hadn't missed so much school? What would he have accomplished in years to come if he had been cured? Stupid f-ing cancer.
I also received some registered mail. It was a notice that my leave has been approved. That's great, but I still haven't been told what my placement is. When I go back to work, where will I be? What grade am I teaching? Reading the fine print at the bottom of the approval notice, I spied the notation, cc: . Beneath that, in addition to several names I know from HR, were two other names. Principals' names. An Interim Principal, and a Principal Principal. I know which school that is (maybe you do too). I like that school. I'm happy about that school. Strange to find out the way I did, but there it is.
Around the time the mail arrived Sam was napping. Post nap we saw Mrs. O-Kindergarten teacher to all 3 of our kids. She always brings grapes, good news, and sunshine. While Mrs. O was visiting, the East Coast Jeffers arrived.
We are surrounding ourselves with family and friends right now. It feels good. They may not truly get what we are going through, but they care and with that I feel less alone and scared. Some of you have asked about how to help-you are already doing it. If you are messaging, texting, posting, visiting-good job. Many people want to give us food. You want to bring meals. It's a way to help, I know, but hold off. The time will come. Right now, while Sam wants to eat, it's my job. I'm his mom.
About the King of the Jungle, he's a gift from our talented friend Mari. She gets Sam's make-believe world where all his animals (don't call them "stuffed") are alive, have names, and need to eat. King came to learn how to live from wise Prince Samuel. That's like three posts right there. Patience.
Later we had a sundae supply delivery by the Rojas family, and we met a new friend, Heather McKenna-who is training for a marathon and logging her miles for Sam. People are generous and kind.
We got some interesting mail. We received Sam's STAR test results. Leaves me wondering what he could have done if he didn't have cancer and hadn't missed so much school? What would he have accomplished in years to come if he had been cured? Stupid f-ing cancer.
I also received some registered mail. It was a notice that my leave has been approved. That's great, but I still haven't been told what my placement is. When I go back to work, where will I be? What grade am I teaching? Reading the fine print at the bottom of the approval notice, I spied the notation, cc: . Beneath that, in addition to several names I know from HR, were two other names. Principals' names. An Interim Principal, and a Principal Principal. I know which school that is (maybe you do too). I like that school. I'm happy about that school. Strange to find out the way I did, but there it is.
Around the time the mail arrived Sam was napping. Post nap we saw Mrs. O-Kindergarten teacher to all 3 of our kids. She always brings grapes, good news, and sunshine. While Mrs. O was visiting, the East Coast Jeffers arrived.
We are surrounding ourselves with family and friends right now. It feels good. They may not truly get what we are going through, but they care and with that I feel less alone and scared. Some of you have asked about how to help-you are already doing it. If you are messaging, texting, posting, visiting-good job. Many people want to give us food. You want to bring meals. It's a way to help, I know, but hold off. The time will come. Right now, while Sam wants to eat, it's my job. I'm his mom.
About the King of the Jungle, he's a gift from our talented friend Mari. She gets Sam's make-believe world where all his animals (don't call them "stuffed") are alive, have names, and need to eat. King came to learn how to live from wise Prince Samuel. That's like three posts right there. Patience.
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