Monday, June 25, 2018

Where I Am

I'm home these days. I'm doing laundry and sweeping the kitchen/dining floor. I'm making Olivia breakfast, a snack, lunch, a snack, another snack, dinner, a snack, another snack and a bedtime snack. I'm reading and I'm sleeping until at least 10 every single day because I go to bed at 11 and then Olivia will come and talk to me until 12:30 each night.

My toes are no longer numb except the ring toe on my left foot, and that's only occasionally. I'm very sensitive to the sun but sunscreen helps a lot. Shade helps too. My hair has been trimmed twice now.

I'm taking Liv to the pool and we pretend to be mermaids.

I'm helping Lyss figure out how to 'teen' with sometimes difficult, over-protective parents.

I'm navigating a sense of uselessness (not all the time, just sometimes) as I face each day without a job, without a place I need to be.

I guess I need to be here. I am trying to embrace where I am right this second, my chance to parent my girls in the moment, on the spot. I'm trying to find a sort of zen in the here and now.

I've sent out a few resumes. I've had a couple of interviews. I want to figure out what I want to be when I grow up and where I need to be now that I've finished treatments and have the opportunity to start over. Do I want to go back into HR? Not really.

But this is a small community, I am going to have to figure it out soon and hope what I want meshes with whatever opportunities are available to me. I pray it all works out and that I am useful wherever I end up.

Sunday, June 10, 2018


I had my last radiation treatment just over three weeks ago. My last chemotherapy treatment was about 13 and a half weeks ago. How are things so far?

Well, I can't drink Coke anymore. There is this awful chemical aftertaste and it's just gross. The dry mouth is gone but I still have a weird metallic taste in my mouth, almost like blood. Fruit flavored things, you know, like fruit and stuff, tastes good so I frequent McD's a lot for their seasonal Tropic Twist flavored Slushie. Delicious and refreshing and yay, not aftertaste.

The numbness in my fingers and toes has abated. I can put earrings in Olivia's ears without dropping both earrings and both backs in the process. I call that progress.

My hair is obviously coming back.

The burn on my incision that was so awful there at the end of the treatments is healed. No more seeping, no more redness. The scar from my port is actually taking longer to heal than the burn from radiation. So there's that.

I don't need quite as much sleep as I was needing there at the end of radiation. Sure, I still like to sleep a lot but I don't need to as much. Shhhh, don't tell Tom.

I'm good. I'm lucky. I'm blessed, if you will.

Wednesday, June 6, 2018

It's Wednesday...

Since I've missed the last bazillion How's My Hair are the last six weeks of pictures. It kind of shows the progression of my hair growth. I can no longer be considered follicularly challenged. I mean, it's still REALLY short but it's way thicker. My sprigs are on the verge of being bangs!! How's that for progress?

Monday, June 4, 2018

Something a Little Heavy

I'm learning to be an advocate. It's a tough road for me because I want to do this right.

Alyssa has a girlfriend.

This girl is lovely and kind and she makes Lyss happy. That's all I can ask of anyone. Alyssa seems to make N happy too so there's that.

At first, my mom was VERY resistant to the idea of Alyssa having a girlfriend. She just couldn't see how it was possible.

I told her (my mom) in no uncertain terms that we are supporting Alyssa, that we love her and she has given us NO REASON whatsoever to stop loving her. She's an amazing, smart, loving, talented girl who has caught the attention of another amazing, loving, smart, talented girl and together they are adorable. There is nothing for us to 'fix' or fret about.

My mom has come around, by the way. She realized she was being horrible for a quick minute and got herself together.

I have an aunt whom I love very much. She and her son lived with my mom and my and my brothers for several years after my mom and dad divorced and my aunt and her husband divorced.

This aunt is very loving and also VERY OPINIONATED.

She recently declared that all gay and lesbian people are perverts. Why does she feel this way? Because, according to my aunt, when she was a child, a lesbian couple lived next door to where she lived with her mom and siblings. These women allegedly touched my aunt and her sister (also my aunt but deceased since I was a toddler so...) Because of these two women and their awful behavior, my aunt has decided to condemn every single gay and lesbian person in the world.

I gently reminded her the pedophilia and homosexuality do not go hand in hand. I reminded her that more people are molested by straight men than anyone else.

She agreed with me that straight men can be pretty awful but went on a bit more about how the perversion of homosexuality is something she just can't handle.

By the way, the entire time she was saying these things, she was cutting my mom's hair and Alyssa was sitting across the room.

I turned to Lyss a few times and mouthed, "I'm sorry." And "Are you okay?"

I kept wondering how long I should sit there and try to gently argue with my aunt before I got up and left the room with my daughters.

At this point, I don't think my aunt knows that Alyssa and N are together romantically. I honestly don't care if she knows. Well, wait, maybe I do care. If she knows and was still spouting that stuff, it makes it worse. But it's still awful to say it at all, even if you think everyone in the room is straight.

I need to support my daughter. I need to advocate for her and fix as much of our little corner of the world as I can because I won't make her sit through a situation like that again.

I don't want to alienate family but I will if it comes to a choice between them and my child.

When we left, my mom apologized to us for her sister's words and attitude. That was something.

Alyssa said she was fine, she told us that she and N pretend to just be best friends when Lyss visits N's work because there are some awful people there too. I hate that they have to do that but understand they have to do what is necessary to feel safe.

Yeah...they have to do whatever it takes to feel safe. Even if it means hiding part of who they are. How fucked up is that? Our world is such a freaking mess.

Friday, June 1, 2018

Fourth Grade - A Recap

School has been out for a week. The last day of school was last Thursday. I now have a sophomore and a fifth grader.

Fourth grade started out rough for Olivia and her teachers and for me. While I was home in September recovering from surgery, I was 'invited' to attend two meetings to discuss Olivia and her lack of participation/cooperation in the mainstream classroom.

During one of these meetings, her teacher suggested, gently, of course, that perhaps Olivia is playing me.

I get it.

Olivia is very smart. She comes across as very competent and so when she flat out refuses to do something that a teacher or aide requests/requires her to do, it comes across as blatant defiance.

The thing is...Olivia has connection issues in her brain. She can desperately want to do something but if it isn't connecting, she simply can't do it. I've seen this myself at home when trying to help her with homework. She'll look at me when I tell her to do something and I can see that she's drawing a complete blank. She hears my words but they don't mean anything to her.

This is not a moment of playing me. It's just that the connections aren't being made.

We made some modifications to her schedule, put her in a class with a teacher who has a PhD in special education curriculum and about seven students in total and she made some major progress. There are a variety of ages in this class, from first grade to fifth. Olivia connected on a social level with the first grader. She grew so much that she actually played at recess with this child.

This reminds me of the fact that socially and emotionally, Olivia is about seven years old. She wants to connect with people but she doesn't know how.

Just this evening I lost my shit with her. And I shouldn't have. I apologized after but I had a moment where I looked at my eleven year old and I just wanted her to act like an eleven year old.

But she can't. Because the social and emotional part of her brain isn't eleven. It's seven and that's why she'd rather play with a first grader than the other fourth graders or even the fifth grader in her class. It's why she relates better to the fourth grade boys than she does to the fourth grade girls. The girls have all matured beyond Olivia and the boys. The boys are still silly little delinquents and enjoy bathroom humor that tickles Liv's funny bone.

She won a writing contest a few weeks ago. It was during Right to Read week at school. It was the second to last week of school. Because she's Olivia, no one expected her to read her short story to the rest of the students that school. But because she won the contest, the teacher who taught Olivia in second grade read the story to the student body while Olivia stood beside her. When she got home, Liv told me, "I was a totem pole while Mrs. P read my story." She was quite proud of her totem pole status. She was also very proud of her story. She stood beside me while I read it and then took it from me and handed it to her dad for him to read it. It was very creative and well written.

I am, obviously, very proud of her. She's come so far and while I know she has a long way to go, she's doing her best (most of the time)and that's all we can ask of her.