Friday, November 16, 2018

Not That Tiny

She’s growing up. She’ll be twelve in less than two weeks. She’s a year from being a teenager.

She’s sassy and sweet and funny and argumentative. She will pick a point in something Tom or I say and will not let it go.

But I’m glad she’s tough like that. She can be so shy and unassuming that I worry about her being overlooked so I want her to stand up for herself, even if it does drive me insane sometimes.

She wants us to explain WHY we when we tell her to do something. She doesn’t understand WHY she can’t yell back at us when we yell at her. Perhaps we shouldn’t be yelling so much? Hmmm…

She loves to read and hates doing math. I don’t know if that is so much a 5p- thing or an Olivia thing. It’s hard, sometimes, to separate the girl from the syndrome. I know she’s incredibly high functioning but she is definitely affected by that missing DNA and her amazing abilities, while awesome and something we’re incredibly grateful for, doesn’t negate the fact that life is still sometimes a struggle. Just because others struggle more doesn’t make her struggle any less for her. (Pain Olympics anyone?) I, like any other parent out there, wish so much that I could fix things for her, take away the struggles, the pain, the hardship and make life perfect for her.

She still plays with Barbies but loves technology in the form of her tablet and the computer just about as much. This age is hard to buy for when it comes to birthday/Christmas presents. She needs warmer, longer pants but pants are fun presents to open on Christmas morning.

She’s getting braces in January. I think she’s excited about it. I know she understands why and we’ll be able to explain the pain to her. I realize there are parents out there who decide against braces for their kids with 5p-. I respect their decision. I just know that this is the best decision for MY kid. Because she sucked her thumb for over four years, she has a bit of an overbite, which could cause her teeth be damaged if she were to fall and land on her face and let’s be real here, that possibility is very high with my tiny girl.

She’s had a cold for over a week now. This is the first illness since our encounter with the flu over eight months ago. I know how lucky we are but I still hate that when she gets sick, it takes so much longer for her to fight off those germs. I hate that she has to suffer, that she has to have antibiotics, that she needs cough medicine and pain medicine and fever reducer to kick something that a typical kid would fight off in a couple of days with little to no medicine.

But we do what we must. We all do. All our struggles are unique to us and we take what we’re given.

Olivia takes what life has given her and she shines. She soars with joy and laughter. She gives us all so much love and light. I often feel like I’m failing her and yet…I’m so very grateful to be along for the ride that is the journey of her life.

And even if she does get taller than me, well, she’ll still always be my tiny girl.

Thursday, November 15, 2018

Driving - aka Another Rant

I’m not a nice person when I’m driving. I’ve mentioned this before, in detail.

But this weekend, poor, sweet Naomi got to experience two days in a row of more than three hours in a car with me.

I’m pretty sure she thinks I’m evil personified at this point.

I’d be fine with driving anywhere and everywhere if other cars and people would just get out of my way.

And let me be fair here and say that US 24 between Wabash, Indiana and where it turns to join with US 35 is a nice, desolate highway. It was so nice to be able to just drive and pretend we were in the midst of a zombie apocalypse, just the four of us, looking for a place to hunker down and fight off the living dead.

But the closer we got to West Lafayette, the more the living inserted themselves into my lovely zombie fantasy.

We got to the rec center where the dance marathon was being held. Alyssa didn’t like the first parking spot I found and so I drove around to find another. A bus was parked, with its flashers on, along the roundabout in front of the rec center. There were no people getting on or off the bus. There was no one to be seen around the bus, living dead or alive. I waited, perhaps not so patiently, for a few minutes (it may have been seconds, who’s counting?) and then whipped around that stupid bus (it was a FREAKING BUS!) to make my way out of the roundabout and into the adjacent parking lot.

We drove forever, with me muttering that I hoped we didn’t have to walk a damn mile to get back to the rec center.

We finally found a parking spot, it was only a half mile from the rec center (I am, obviously, exaggerating, it was probably only a quarter of a mile) and I bitched and limped and moaned the entire walk to the center. We all had to pee and we’d been in the car for about five days at that point. It was time to be done driving.

We hung out at the rec center for a few hours. I only had to walk the three miles to the car once to get some medicine for Olivia, who was achy and perhaps a bit feverish from the drive. She bounced back pretty fast and had a lovely time getting presents and being doted upon.

We left the rec center around 8:30 or so and headed to the hotel.

Now, I’ve been to West Lafayette about ten times in the past ten or so years. But it’s only once a year and I only ever make it to the campus by sheer luck and tenacity. We stayed in the Union Club hotel. Alyssa (or maybe it was Naomi) put the address to the Union Club into their phone and used the GPS to guide me. It was only a mile or so away. But as everyone knows, college campuses have an insane amount of one-way streets. Why? Who the hell knows, because engineers are stupid, that’s why.

The GPS was stupid too. It wanted me to go the opposite direction of the way I needed to go, so I ignored it and went the way I knew I needed to go. The GPS dealt and recalculated. I can be smarter than a computer sometimes. Just saying.

We’d only gone about two blocks when someone fool in a car ahead of me wanted to parallel park. Growl.

I whipped around them too. They may have honked at me. I don’t know. I didn’t hear it. Either A or N mentioned hearing honking but at that point, I didn’t especially care about a parallel parking fool’s honking horn. I just wanted to get to the stupid hotel. At that point, Naomi remarked that she could tell I’d driven in the city before. She might have been commenting that I need to chill the hell out but she was too polite to actually say it in those exact words.

The GPS sent me around the block once and tried to do it twice but I was, once again, smarter than the computer. I found the parking garage across the street from the hotel and then proceeded to go up and down the damn aisles looking for a spot that wasn’t reserved for campus vehicles or tiny cars (who is driving these tiny cars and why are there so many parking spaces reserved for them? I mean, I have NEVER seen a tiny car parked in those tiny car parking spaces…just saying (okay, just bitching but whatever!)

Once we were parked in the ridiculously narrow spaces in which no other cars had managed to pull into correctly, we all wiggled out of the car with our doors barely opened because we’re so very conscientious of other people’s property and we didn’t want to ding the doors of the cars parked next to us even though they kind of deserved it with the way wonky way they parked. Sigh. Whew. So much annoyance for one chubby mumsy.

Then we had to get all the crap out of the back of the car. I always overpack. Why? I should know better and yet…I don’t. I pulled a wheeled suitcase that had my and Olivia’s clothes. I carried a cooler with Liv’s antibiotic in it and the shoulder bag that had our bathroom gear (HBA items, if you will.) Alyssa carried the heavy-ass snack bag along with her own backpack of clothes and HBA items. Olivia wore a backpack with her entertainment items and carried the gift bag she’d received at the dance marathon.

Naomi carried her bag and her coat and I don’t even remember what all she carried because it was all so very insane what all we were all carrying. And it was flipping cold. And it was dark and I was tired and we were all hungry and yes, I was still very annoyed with the entire world. Come on zombie apocalypse!

Alyssa tried to get Olivia to carry the blanket that we always have in the car. Olivia was not having it. She insisted she was carrying quite enough, thank you very much. She does have tiny hands, you know.

Alyssa relented and carried the stupid blanket herself. We trudged across the street (after waiting for traffic because as you know, there is ALWAYS traffic) and made our way into the hotel.

We were on the third floor. We had to wind our way through the halls of the hotel just to find the elevator, which was quite possibly the tiniest elevator ever invented. My big ol’ butt barely fit inside that thing once the other three and all our luggage was inside.

We finally, FINALLY made it to our room. Yay!!!! We dumped our stuff, Alyssa and Naomi started scanning their phones for a pizza place that would deliver to our location. Olivia took off her boots and socks and claimed her bed, climbing in and snuggling up under the blanket she’d refused to carry from the car.

I apologized to all and headed to the bathroom to…um, you know, it’s not necessary to share EVERYTHING. You know? Right.

After the pizza was delivered and eaten, Olivia settled in and was asleep before 10, which is good because yeah, she’s still sick. What the hell were we even doing there? I should have stayed home with this poor sick child and let her relax at home instead of dragging her halfway across Indiana and back in the span of twenty-four hours.

Mother of the freaking year here.

The next morning, all of twelve hours after schlepping all of our crap from the car to the hotel, we got to do it all over again. We headed back to the dance marathon to see the closing ceremony and the reveal of the amount raised for Riley Hospital for Children. It was neat and fun and totally worth it.

We hit the road after 10am because the McD’s was insanely busy and we had to go in because O wanted pancakes. Which is fine. It’s FINE! I wasn’t going to let that child try to eat pancakes in my car. I didn’t want to be wiping syrup off the sunroom for a month. The sausage burritos were totally worth the wait.

Once we were finally back on US 25N aka Hoosier Heartland Highway, I was able to settle back into my zombie apocalypse fantasy and enjoy the drive home.

We’d been in the car for maybe two hours when Olivia sighed and said, “I feel like I’ve been in this car for twenty four hours.”

Oh, kid do I feel you.

We’ve been home for several days and my hips still hurt from sitting in that car for so many hours over the last couple of weeks.

On the bright side, I don’t have to drive forever to see Julie again this coming weekend. Only too bad for her and her family, they DO have to drive all those miles to come all the way up here. And interstate 69 is not the most excellent road for pretending to be outrunning a hoard of zombies.

Wednesday, November 14, 2018

Tired

One would think that my eight months off work would have caught me up on the sleep deprivation I suffered while the girls were little and I was commuting.

One would be wrong.

I’m still tired. All the time.

We went to West Lafayette last weekend for the PUDM. It was fun. But the beds in the hotel where we stayed were awful. I slept so badly I may as well have not slept.

Olivia slept great but she’s twelve, twelve year olds can sleep on a pile of rocks and be comfy.

People my age? Not so much. The rocks would need to be covered with a mattress and the mattress would need to be covered with a topper, then I’d need a high thread count sheet to cover the mattress topper. Then, if you please, let’s add the flat sheet because I’m old school like that, a couple of quilts and a comforter that I can kick off when I wake up in the dead of night covered in gross sweat. And that’s IF everything above has been provided and I am asleep on the bed of rocks alone. Add another person and we’re in big trouble and there will probably be no sleep.

I’m ready for this month to be over. I hate wishing the time away but we’ve been so busy, always running, always cramming stuff in.

No wonder Olivia is sick.

This week we are getting our flu shots on Thursday, I’m taking food to play practice, you guessed it, Thursday. The performances are Friday and Saturday.

Next weekend is Thanksgiving. I’m currently thankful that we don’t have to travel to family for dinner. Though, let’s remember that even though we only drive three miles to my mom’s each holiday, I still managed to hit a deer last Thanksgiving. And I don’t think the deer was killed, she got up and ran away while we sat there in my car, which suffered over $8000 worth of damage. Sigh.

But that’s all in the past, where we definitely want to leave 2017. It was a tough year and I’m glad to have survived it. 2018 has been better than 2017 but I am hoping and praying that 2019 will be better still. I suppose I could take the attitude that it will be what I make it. I would like to think I have the power to shape my own destiny.

The problem is, I don’t seem to have the power to shape my own bedtime, let alone my own destiny.

Tuesday, November 13, 2018

Bed-Sharing

Anyone who has read my blog for any amount of time knows that we’re a family of co-sleepers. Alyssa slept in our bed from the first day she came home from the hospital. She might have spent two nights in her crib before we took it down and put it away until Olivia came home.

Olivia slept in a bassinet for the first couple of months because she was on an heart monitor at first and it was dangerous for her to be in the family bed. But once she was off the monitor, she was in our bed too.

When we moved to Ohio from Indiana, the master bedroom was so big, that I just put our queen sized bed in there along with a couple of smaller beds. Seriously, it was still not crowded.

In the end, Tom tended to fall asleep on the couch, I put the girls to bed in the queen bed and I slept on a twin bed in the same room with them. That was the case for the first several years in our current house.

So I got used to not sleeping with anyone and it is glorious.

A few years ago, we decided it was time for the girls to sleep in their own room. So, because I’m a hoverer, we all three moved from the master bedroom to the larger of the three other bedrooms. The girls were in bunk beds, Alyssa on top, Olivia on bottom. I was in a full bed. That lasted until Alyssa’s fourteenth birthday (so going on two years ago.) At that point, she kicked me and Olivia out.

Alyssa now sleeps in her own room. See, it happens, eventually, to everyone. . Just saying to everyone who thought it was insane that we were sleeping in the same bed/room forever. Everyone should do what works for them. I’m not judging anyone who chooses to put their baby in their own crib in their own room from the start. If that works for you, go you. It didn’t work for me. But I know it works for most people. So yes, stepping off my non-judgmental soapbox now.

Where was I?

Oh yes, Alyssa sleeps in her own room. We need to take the bunkbeds down now that she’s sleeping in the full bed in her room. It would give her ever so much more room…one of these days. For sure.

When Lyss kicked us out, Olivia and I moved back down the hall to the master bedroom. But we didn’t go back to sharing a bad. Oh hell no. She sleeps in a twin bed and I’m in the queen. Tom is still on the couch, for anyone interested. He always falls asleep there watching tv and I figure I get two of us to bed I don’t want to be responsible for making him get up and come to bed too.

All this (almost 500 words, good lord!) to say that Olivia and I shared a bed last weekend at the hotel in Bloomington and it…was…awful.

That child has no concept of personal space. The first night, I put a blanket between us. It helped not at all. I pushed her leg off me no fewer than five times. She weighs about 105lbs and still took up more than 2/3 of the bed. Please just believe me when I say that I weight more than she does. I hugged the edge of the bed all night long both nights.

The second night, I woke myself up whimpering, “No, no, no, no.”

I’d been dreaming that Olivia had her head in my back and was pushing at me. It turns out it was her knee. Apparently, she wanted more than her 2/3 of the bed. She wanted the whole thing and was trying, in her sleep, to kicked me out. I had to push back at her knee really hard just to get her to give me three extra inches of bed.

The next morning when my mom got up to get dressed, I limped across the room and laid down in her vacant bed.

Ten minutes after I’d vacated the ten inches of bed that Olivia has allotted me, she woke up and asked me what I was doing.

I replied, “Escaping the torture.”

“Can I join you?” she asked sleepily.

I managed a laugh even though every joint in my body ached. “No, you’re the one who was torturing me.”

Alas, I wish I could say that I will never share a bed with that child again but I think when we spend the night in West Lafayette this Saturday I’ll have to brave it all again. I will try the blanket thing again, though. While the blanket was there, she didn’t jam her knee into my ribs so that’s something.


Monday, November 12, 2018

Straight Out of My Nightmares

And eww and every other sound of disgust you can come up with.

On our way back from Bloomington this past Sunday, we decided to stop at a gas station to use the bathroom (and get something to drink so we could use the bathroom again later in the trip) before we got to 465 where there is really no convenient way to stop.

We stopped at a Shell.

The station was fine, the gas was actually about $.10 cheaper than any of the other stations we’d seen on our trip.

The first clue should have been that one accessed the bathroom from outside the building.

The second clue should have been my disgust at having to touch the door to open it, it was grimy and gross but I figured it was from being an outside door.

No. We should have walked away, gotten in the car and driven to the CVS that was a mile away. The problem is that we didn’t know the CVS was a mile away because we had driven past all this in the dark on Friday night. We weren’t sure there was another bathroom anywhere nearby (of course there was, duh!)

Olivia and I entered with trepidation.

I caught a glimpse of the toilet and gagged. I said to Liv, “Okay. I’m going to wipe off the seat and then we’re going to hover over it to pee.”

She looked at me. She looked at the toilet. She took a step backward and declared, “No. I don’t have to pee.”

“Livie,” I started to argue.

She interrupted me. “No. I am not peeing in that. I don’t have to go.”

I remembered when she was seven and flat out refused to pee in a port-o-potty. I knew there was no arguing with her. And who wanted to at that point? I wanted to get out of that disgusting, filthy, germ-ridden bathroom.

But I had to pee.

So I took a deep breath, wrapped my hand in toilet paper (A LOT OF TOILET PAPER) and wiped the seat. There was more than just a few ‘sprinkles’ of pee on that seat. It was also evident by the, uh, color (gag!) of the samples on the seat that more than one person had peed on that seat. It was probably more like five, or hell, a hundred. It was soooo gross.

But honestly, even the pee on the seat was nothing compared to the ring around the toilet bowl itself.

My mom later said she couldn’t tell if it was the remnants of diarrhea or vomit but it was crusty. It had been there for a long, A LOOONG time. When the toilet was flushed, the water just kind of skimmed over the ring around the bowl. It might even have been mold. *shudder*

That bathroom hadn’t been cleaned in, well, maybe not ever.

The only thing that could have made it worse would have been if it had had one of those rags that hangs down in a loop, that you pull down and find a dry spot to wipe your hands. It didn’t, thank goodness, but if it had, it would have made the entire experience that much more surreal.

I hesitated to get back into my car after standing on that bathroom floor. I mean, if there was piss on the seat, you know damn well it was all over the floor.

We slathered ourselves in hand-sanitizer when we got back in the car and then we laughed over the awfulness of the entire situation. What else could we do? It was either laugh at how awful it was, or cry.

Olivia insisted she still didn’t have to pee even when we came across another, cleaner facility. Girlfriend was going to let her bladder burst before she peed in that cesspool of horror. To her credit, she didn’t use a bathroom until we were well along the way on I69 (it was the rest area between Indy and Fort Wayne, very well maintained, thank you very much.)

When we got home and told the story of the bathroom from hell, I said something along the lines of it being right out nightmares I’ve had where I have to pee so bad but the toilet is either overflowing with chunks falling to the floor in the flood of water and filth or I can’t lock a stall door and am trying to squat and hold the door at the same time.

Alyssa asked, “What kind of awful dreams are you having?!?”

Hasn’t everyone had that dream where they have to pee (because they really do have to pee but are asleep and so the need to pee translates into the dream) and they’re either in a filthy bathroom or they’re being stalked by a killer and are trying to pee really quietly but never quite empty their bladder (because, obviously, they haven’t peed in real life and so the urge doesn’t go away.)?

She (Alyssa) claims to have never had that dream. I think maybe she just doesn’t remember the times she has had it. But she did say, rather sassily, “But I probably will NOW.”

Ha, I kind of hope so because I’m that kind of mom.

For the record, I’m also the kind of mom who cleans the toilets in her house on a regular basis, so in the end, it all evens out.

Thursday, November 8, 2018

Parent/Teacher Conference

I meet with Dr. C last week to talk about one of our favorite people, Miss Olivia.

There were no surprises. Olivia is doing very well in reading and writing. She’s an ace speller. She whispers to all of the teachers and aides.

She’s struggling with math, has some good days and some not-so-good days. She just really doesn’t actually care about math. Anything that doesn’t come easily to her is ‘boring’. I get it. I really do. But girlfriend has to know how to add and subtract. Plotting lines? Not so important but adding two quarters and knowing she has fifty cents? Yes, important.

One pleasant story Dr. C told me is that Olivia plays with one of her classmates at recess. There is a boy who is in second grade (Dr. C teaches kindergarten to sixth grade students who need a little extra help) and no one else will play with this poor baby. The first time he asked Olivia to play with him, she shrugged and then…drum roll…she played with him!!! OMG!! I’m so proud of her. Not only is she interacting with another kid, she’s being the nice kid who is playing with one that no one else will play with.

I do kind of want to know why the hell the other kids are being allowed to ostracize this child. It makes me crazy when that is allowed to happen. But according to Dr. C, both O and her little friend are very happy with the current arrangement. They chase each other around the playground and enjoy each other’s company. I’ll take it.

Dr. C said that Olivia is actually one of her easiest kids to teach. Sure, she’s also one of the most stubborn but she’s almost painfully polite, she never has outbursts, she doesn’t get loud and unruly. If anything, when she’s overwhelmed, she withdraws and gets even quieter.

Dr. C said that she’s told Liv that she, Olivia, is the only kid in the classroom who is allowed to yell at the teachers. Olivia did laugh at that one.

I’m so grateful for teachers who work so hard to find a way to reach my child. Olivia is a tough nut to crack. Somedays I feel like I’m not reaching her and I’ve been in her life forever. New people don’t always get her. She can be frustrating and I know a time or two, some teachers have given up altogether. I understand that. But I’m grateful for the ones who go the extra mile, who try that much harder to find a way in and are helping Olivia find her way out of her own head.

*Are most parents done doing parent/teacher conferences when their kids are in high school? I don’t see any of Alyssa’s teachers. She’s got a 4.0 GPA and she’s involved in all the extracurricular things. She’s good, she’s amazing, she talks to me when things are frustrating her (I’m looking at you, Spanish) so yeah, unless the school reaches out to me, I won’t be scheduling any meetings with her teachers.

Monday, November 5, 2018

The State of My Hair

Because everyone wants to know and also, but mostly, because it drives me crazy on a regular basis.

I actually can’t stand it. It’s awful.

I let it air dry one Saturday evening and the poof was out of control. It was so fluffy I thought it might fly right off my head and join a flock flying south for the winter.

The back…ugh. I wore a scarf one day last week and by the time I got home, the back of my stupid hair had been pushed up so far that it looked like a wig. It was high and out from my head.

The curls are just awful. The top and back is curly but he sides are not. So it’s just so stupid.

I recently threatened to ask one of my fellow Edon mom’s where she gets her hair cut just to put my hair and myself out of our misery.

Alyssa implored me to just fight through the awfulness. The only way to get past the horror story that is my current hair is to continue to let it grow. If I get it cut/trimmed, it will just keep being this short and this awful.

And so I bitch and moan daily about the trauma my hair is causing me.

All this to say, I know I’m lucky it’s growing back and that it’s coming back so thick and fluffy. I know things could be worse. Hell, they HAVE been worse. But it’s my hair and I’ll complain about it if I want to.

Friday, November 2, 2018

Fitting It All In

These next few weeks are going to be busy. Livie and I leave for Bloomington immediately after school/work on Friday, November 2 for the IUDM. We’ll be there until Sunday morning. We’ll stop in Auburn (a town about 40 minutes from home) and buy groceries on our way home.

When we get home, I’ll unload the groceries, the luggage, start some laundry and head to Defiance, where Alyssa will be performing in an honors choir.

The weekend of November 10-11, we’re all (all being me, Liv, Lyss and Naomi) heading to West Lafayette for the PUDM. That’s only Saturday night and into Sunday so we can pack on Friday night and leave around 11 or noon on Saturday.

The weekend after that is the school play, which is Thursday, Friday and Saturday. I’ve signed up to do hair and makeup so I’ll be just as busy as Alyssa in the hours before the play. I also signed up to take food for the actors on Thursday, yay for them, getting to eat something I cook. Ha!

The weekend after the play is Thanksgiving and then we have Olivia’s birthday the Tuesday after Thanksgiving. Whew.

Along with all this, obviously, I’m back to working full-time, 40+ hours a week. That leaves little time for things like, oh, cleaning the house, laundry, groceries (I’m figuring that one out.) Alyssa needs a costume for the play that is in three weeks. I need to schedule flu shots for the entire family. I have a mammogram next Monday, I’m pretty sure the girls have orthodontic appointments Tuesday. My birthday is Wednesday.

So much to do!!!

I’ve been trying to chip away at the list. I hit up Good Will on Tuesday to try and find costume items for Alyssa’s Customer #2 character. They’re doing The Little Shop of Horrors, which is set in the early-ish 1960s. I kind of figure Customer #2 is somewhere in her mid to late twenties. I spent maybe ten minutes in Good Will and came out with a wool skirt, a cardigan and a button up blouse, all varying shades of beige. Alyssa told me several times, “I’m not supposed to look nice, the shop is on Skid Row.”

So yes, beige it is.

My mom has some brown shoes that are perfect with the costume and we’re set. It only cost me $11, which I have to say, I’m very proud of. Go me!!

Now we just have to figure out how we’re going to do her hair. That ought to be fun.

I’m tired just thinking about all this. Alas, I guess I will sleep on Friday, November 23rd. I’m penciling it in on the calendar just so we don’t schedule anything else at this point.

Thursday, November 1, 2018

Last Trick or Treat?

Our community held Trunk or Treat and trick or treating last Saturday. It was a chilly, misty day but it was fine.

Olivia dressed as a lady bug. She’d originally planned to go at Barbie, in a bubblegum pink prom dress we found at a consignment store for less than $20. We attached straps to it and took some of the sequins off the area under her arms and it was ready to go.

But then, a few weeks ago, she discovered this cute little cartoon called Miraculous Lady Bug and she’s become obsessed with it. When we found a lady bug costume at Walmart for $12.97, she couldn’t resist. The Barbie dress will just have to suffice for next year.

Speaking of next year, though…she’s going to be twelve, almost thirteen next year. She’s already 5’3” and while emotionally, she’s all of eight years old, she looks all of her almost-twelve right now. Next year she’ll probably look even older than her almost-thirteen years.

So this year might have been our last trick or treat experience.

Because I was thinking along those lines, I made Alyssa go with us. Now, when I say I ‘made’ her, let me clarify that I said, “Hey, Lyss, I think you should go trick or treating with us.”

And she said, enthusiastically, “Okay!”

And that was it. She put on a pair of butterfly wings, some eyeliner and a flowered headband and away we went.

A friend of Lyss’s, let’s call her Sophie, lives in town and so after we hit up the church parking lot for Trunk or Treat, we swung by Sophie’s house and she joined us for our jaunt around the neighborhood.

It was fun. There were a lot of kids out, obviously they were mostly little kids, like seven and under but a lot of the houses we stopped at called Alyssa and Sophie over to get candy. Most of them said something along the lines of, “You took the time to put on costumes, you deserve candy too.”

I thought that was incredibly kind. I hate that kids are expected to be all grown up just because they hit the teenage years. I want society to let them keep being young as long as possible.

I talked to my mom a few days after our trick or treating fun. We decided that going forward, we need to have a family Halloween party so that everyone of all ages can dress up and enjoy the spirit of Halloween. We can have candy, games, contests. It will be great.

And no one will have to grow up too soon.

Wednesday, October 31, 2018

Sorry

Olivia still has some issues with speaking. She probably always will but we’re working on it along with finding other ways for her to communicate.

At school, her teachers/therapists/peers all accept a smile and a wave as communication. She doesn’t have to speak to acknowledge that someone has spoken to her.

This past weekend, she spilled some water.

No big deal, except it was a mess I had to clean up. Thank goodness for my over-inflated sense of guilt, I didn’t blow up and make a bigger deal out of it than it was. But I did want her to apologize for me for making a mess that I had to clean up.

She looked at me like I’d asked her to recite the German alphabet (which, let me tell you, isn’t that hard.)

I was still cleaning up the water (it had gone under the recliner, which was annoying and a little harder to clean up than your typical spill on, say, a kitchen floor.) She stood there looking at me like I was asking her to speak fluent Martian.

I said, “All I’m asking if that you tell me you’re sorry.”

She blinked.

“Liv,” I muttered, still on my damn knees sopping up water. “It’s two words. I’m…sorry.”

She took a deep breath and said nothing.

“Okay,” I relented. “You can be back on the computer when you’ve apologized for this mess.”

She tilted her head as if my words did not compute.

I finally got the water soaked up and put the towel in the dirty laundry basket. I walked up to her, she was still in the same spot she’d been in when I first asked her to apologize. It was as if my request had forced her entire system to freeze.

I needed to figure out how to reboot her.

I put my hands on her cheeks and said, “Just whisper it to me. It’s just you and me here, you talk to me all the time, just two words. Heck, just one word. Just whisper ‘sorry’ to me and we can be done with this.”

She pressed her lips together.

I know there are people out there who will think she’s playing me. I know people think she’s capable of so much more than I require of her. I know this too. But I also know that sometimes, she just can’t force words past her throat. It’s as if she’s choking on them. I think that might actually be exactly what selective mutism is. She can’t do it, especially when she’s put on the spot, like I did that night.

I finally had her spell out the word ‘sorry’ to me using sign language. And then I let her play on the computer again. She communicated in the best way she could at the moment and it was fine.

She has a hard time with most of the social niceties. She can’t bring herself to say ‘thank you’ or ‘you’re welcome’. She has a really hard time with hello but can scream goodbye to her dad when he won’t close the car door until she does.

It’s like the part of her brain that controls social interaction has a major block. We’re working on finding ways around that block but it’s definitely a work in process.

It’s a fine line for me as I continue to push her and yet try and let her be herself. She wants so badly to be a part of conversations but has a tough time following the main subject. She’s a lot like a four year old who wants the focus on her and whenever there is a break in the conversation, will try and bring it back around to whatever subject interests her.

I have faith that we’ll get there, we just have to be patient even when we’re pushing her to try a little harder and find a new way around that block in her beautiful brain.

Tuesday, October 30, 2018

Inquiring Minds

My MRI results came back. It’s all good. The thick skin and hardness of the breast tissue itself is due to damage from both the original lumpectomy and from the radiation. No sign of cancer recurrence at this time.

I’m sure you can imagine the relief I feel.

Monday, October 29, 2018

The MRI

So as stated in Friday's post, my insurance approved the MRI. I headed over to the hospital at 2:00 Friday afternoon.

Just walking into the hospital was, weirdly, like coming home. I mean, I was there SO MUCH over the past year. Every single Saturday for three months, I went to that hospital for a blood draw to make sure my counts were high enough to receive chemo. After chemo, I was on the hospital campus for radiation daily for almost seven weeks.

I won't go so far as to say I miss treatment but there was a weird sense of comfort in going in there, knowing we were doing something to either find new cancer early or make sure there is no more cancer. for the past five plus months, I've had no doctors' appointments, no treatments, nothing to fight any cancer that has started growing again. Obviously, I have all the hope in the world that there is nothing to be found, but knowing we were looking for it made me feel...I hesitate to say good but, maybe, comforted?

I hope not to hear from my doctor any time soon. I have a follow up appointment with him in mid November. I know that the MRI will be read Monday or Tuesday. If there is anything found, I know they'll call me before my appointment. I really, REALLY hope I don't hear from them and just head to my regularly scheduled appointment and find out that the MRI found nothing. Prayers are appreciated, obviously.

I do have an appointment with my chemo oncologist on Tuesday. I don't think he gets my humor but that's okay. I will be me, probably wise-cracking and being stupid but I can't help it. I think maybe he doesn't think I take this whole thing seriously but I can't. I can't go in there all morose and sad. I have to be positive, happy, joking around about my stupid hair and hoping, praying, planning for the best.

I don't know if they'd send him the MRI results or now, but I guess we'll see.

So yeah, after over five months with only one appointment (the surgeon in August) I'll see several doctors/therapists/technicians over the span of the next few weeks. It's taking me back, but not necessarily in a bad way. It feels like everyone cares again.

Weird? Maybe. But maybe not so unusual. A dear friend who battled cancer back in the last 1990s warned me that after treatment, she felt bereft, like she was being left to flounder and figure out life after treatment. I appreciated her wise words of warning. It makes me feel less freakish.

I have often in the past couple of months felt regret in doing the lumpectomy. I have thought maybe I should have gone with the mastectomy just to get rid of the offending bosom. I mean, what I do need these stupid boobs for? They weren't even capable of feeding my children over ten years ago. They're obsolete and they (well, Leftie) tried to kill me. I think maybe I should have opted to have them lopped off.

Live and learn, right? I just hope and pray that for me, it's not die and learn.

Friday, October 26, 2018

Insurance

I’m supposed to have a breast MRI today. Wait. Let’s back up. I was supposed to have a breast MRI last Friday. Alas, it was rescheduled due to insurance not deeming it necessary and wanting a peer to peer consult with my doctor. And now I’m waiting to find out if the peer to peer review changes their (the insurance company’s) opinion on whether the test is medically necessary.

Huh.

Insurance companies kind of suck. I realize they’re a business but honestly, those in charge probably have no idea what an actual person experiences when they go through what I went through in the past year.

I am not saying my experience with cancer and the treatments and tests and recovery and the subsequent fears and worries and stressors are worse than anyone else who has been through this. In fact, I’m pretty sure my experience has been fairly typical.

But I don’t think insurance companies get it. Those in charge seem to take the human factor out of the equation and only worry about the dollar signs.

It makes me sad and it makes me mad.

Can you put a price on peace of mind?

A person shouldn’t have to go into debt to get and stay healthy, both physically and emotionally/mentally.

Back to the MRI. I saw my surgeon back in August. He did his usual exam and decided that since Leftie is still swollen and the skin is firmer than Rightie, an MRI should be done. See, we can’t actually feel much in Leftie because of the firmness of the skin and the swelling from everything it’s been through. A physical exam doesn’t do much to detect any potential bad stuff. My surgeon is great. My insurance…is not.

They are saying that since I haven’t had any other test, other than a physician’s exam, to give us reason to think something might be wrong, the MRI isn’t necessary.

Let’s stop for a minute and think about this. My insurance doesn’t think we have any reason to think something might be wrong. Even though I just went through what was quite possibly the worst year of my life. Even though I’ve HAD A FREAKIKNG CANCER DIAGNOSIS, they don’t think there’s a valid reason to pay for an MRI.

The insanity of that makes me want to scream. Would they rather pay for an MRI that could detect something early enough to necessitate another lumpectomy or wait and later pay for a freaking double mastectomy because I’m telling you, if I have another cancer diagnosis, that’s where we’re going. I’m getting both Leftie and Rightie lopped right the hell off and then insurance can pay for reconstruction along with the surgery to get rid of these two abominations hanging from my chest.

Whew. Okay, deep breath.

I don’t currently know the final decision. I guess I should call the f*#^ down and wait to hear from someone, be it my doctor’s office, the imaging center’s scheduling department or, heaven forbid, my insurance company. They never bother actually communicating with ME, the actual patient who is enduring all their bullshit.

I’m good most of the time with being all positive and planning for my 50th birthday, which will be a big one since it will be three years from the time of diagnosis and if I get to three years without the cancer coming back, my chances of ever coming back are very slim. (See: Triple Negative Breast Cancer statistics.) But sometimes, mostly at night, in the dark when I’m hurting somewhere in my body I’m convinced that it’s already back, that the day after we stopped chemo, the cancer started growing again, either back in Leftie or somewhere in Rightie or even down in my lower back, on the right where it just aches sometimes. I’m just sure I only have a couple more years with my girls and I need to get as much loving and living in while I can, while I’m not spitting up blood and losing my hair again and slow (or quickly, depending on how depressing I want to be) declining, sleeping more and more, slipping away from everyone and everything I love.

They need me to be strong. They need me to be HERE, with them, guiding them, loving them, making them laugh, making memories that will sustain them even if the worst happens.

And if it takes a freaking MRI to keep me here, then damn it, my stupid insurance company needs to get with the program.

End rant.
Update: The MRI was approved. I know! I was shocked too. And impressed with my doctor's persuasive abilities. I pray that if the MRI finds anything, it's early, like last time...

Thursday, October 25, 2018

Widow Fantasies

Alyssa and I are watching the Netflix series, “I’m Sorry.”

Let me state right here that this show is so completely inappropriate for my teenage daughter to be watching but she insists that she hears worse language in the first ten minutes at school each day and I figure, what the hell? Right?

Sure, whatever justification gets me to get on with this story, right?

Okay then. Now that it’s been established that I’m a horrible mother, let’s move on to the fact that I’m also a terrible wife.

Yes. There it is

Back to “I’m sorry”. One of the episodes is titled “Divorce Fantasies”. The main character, Andrea, is a happily married woman with a friend who has just gotten divorced. Andrea tells her friend that she (Andrea) sometimes fantasizes about being divorced and how great it would be to get to date in this new and amazing online world.

I told Lyss that I have no fantasies about being divorced. Divorce seems like a lot of work and I’m not really interested in finding out what it’s like to date.

But I do think about being widowed.

Let me remind you that Tom doesn’t leave our house to go to work. So each time he DOES leave for any reason whatsoever, I worry that he won’t be back. I think, “Okay, this is the day he’ll be in an accident that kills him instantly.”

Then I think about how lucky we are that I am the one who covers the insurance for our family. Also about how I’d use the life insurance we have on him to pay off the house, so the girls and I wouldn’t have to move in with my mom and step-dad right away.

I can’t imagine dating, even if I were widowed. I think I’m past that point in my life.

But who knows what might happen once…Ha! I almost wrote ‘once the girls are out of the house.” Hahahahaha.

I will never be lonely because I will probably have my sweet Liv with me. There’s a comfort to that thought even if it is wrapped in sadness for her. I want more for her than to live with her mom (and probably her dad, I’m not actually wishing him dead for Pete Sakes!) (Note to any new readers, I KNOW the saying is Pete’s sake. It’s an old joke to say Pete Sakes. Just go with it. Though honestly, if I were going with the tone set by the above mentioned television show, I’d have said for fuck’s sake. So, hey, I’m being pretty PG here.)

I do wonder, though, how much to shit my house would go if Tom were to die. I mean, I can vacuum and keep things fairly clean but he’s the one who insists on no eating outside the kitchen/dining area. Left up to me, the cat would probably move in, the girls would eat in the living room (I would to, duh!) and, well, we’d probably live in filth.

And the outside? Forget it. I would have to hire someone to mow because that seems like a lot of work.

Okay, the fantasy has officially become a nightmare. I don’t want him to die. Not that I ever did, but now that I’ve really thought about it…I really, REALLY don’t want to find out what it’s like to be a widow.

Wednesday, October 24, 2018

A Normal Kid

As I tucked Olivia into bed the other night, I watched her as she arranged her menagerie of comfort items and I wondered aloud, “Why can’t you be a normal kid and sleep with stuffed animals?”

She laughed (thank goodness) and looked down at her grouping.

Let me help you out here. Among the things she sleeps with each night were: a book light, sometimes illuminated, sometimes not, a turtle nightlight, a pen shaped like a mermaid tail, the cap to a shampoo bottle, and a ball with a mermaid floating around in some sort of liquid inside it.

Yeah. Those are the things she takes to bed with her each night. She sometimes even wakes up in the middle of the night, calling out to me that she can’t find one of those things. I usually tell her we’ll find it in the morning (it’s almost always between the wall and the mattress or on the floor having fallen between the wall and the mattress.) I also tell her to go back to sleep.

All of the things she takes to bed for comfort are basically a kidney puncture waiting to happen. I don’t know how she can sleep with those things strewn about her bed, rolling onto them in her sleep, having them leave weird indentations on her skin by morning.

But honestly, I felt bad for the ‘normal kid’ comment. I mean, I’m sure lots of ‘normies’ sleep with weird things. And I know a lot of kids with her syndrome love stuffed animals.

My kid, however, thinks stuffed animals are creepy and would rather sleep with a backscratcher that’s shaped like a rake (you can get one of your very own at Rural King, they come in lots of different colors!) For the record, this post is NOT sponsored by Rural King. I’m pretty sure Rural King does not sponsor blogs. And let’s be clear here, this blog isn’t sponsored by anything but my own desire to overshare.

Anyway, all that to say that for the next several days, Olivia would suddenly chuckle and mutter, “A normal kid.”

I’m glad she finds the idea of ‘normal’ to be amusing. I’m glad she realized I wasn’t actually calling her abnormal.

We’re a family of weirdos, we all embrace our weirdness and we celebrate our differences. Alyssa has approximately three thousand seven hundred fourteen stuffed animals. I think she’s cornered the market on that part of ‘normal’ for this family.

I just wish Liv would pick things to sleep with that aren’t an actual danger to her health, you know, like the cup she once snuggled with when she was about three. That wouldn’t be nearly as bad as the rake or the mermaid pen.

Alas, she’s very much her own person and she’s decided those things bring her comfort in the dark of night.

Who am I to cause her stress by taking away her comfort items? Okay, I know I’m her mom and I should keep her safe so yeah, the rake backscratcher has to go, but the mermaid ball? I think that one’s unlikely to hurt her. And if these things help her sleep through the night? Everyone knows I’m all for that.

Tuesday, October 23, 2018

Telling Stories

Olivia’s current favorite thing is to write ‘fan fic’. She likes to come up with stories, mostly about a party at our house where all her imaginary friends as well as characters from all her favorite movies come over and hang out.

In her stories, she talks to everyone, she’s the life of the party. Often, she’ll write in classmates and they’re always so happy to have her talk to them. It’s super cute and it breaks my heart all at the same time.

I love that she has such an active imagination. I love that she puts the words down on the screen. She uses both her tablet and the computer to write these stories.

She gets so many ideas for her stories from the movies she watches and the books she reads. She wants so badly to be the star and I want that for her. I want her to be the star of her own life, to break that shell that keeps her from shining wherever she is. She shines so bright at home, singing and dancing and laughing and talking.

I wish so badly she could do that at school. I want everyone who knows her to truly know her, to see the beautiful soul that is trapped in her brain, in her body. She’s so smart and sweet and funny. But no one but those closest to her can see that because she can’t let anyone else in.

And I don’t know how to help her.

It’s been suggested by the school that she see a therapist. Sure, okay. Fine. We’ll do that. Except, how will that help if she won’t/can’t talk to anyone but me and Tom and Alyssa and my mom?

I don’t know.

What I do know is that she writes these stories, getting the words out of her own head and that’s awesome. It’s a window into her brain, her thought process. It gives us a moment of insight into how and what she’s feeling. If I can’t have her open all the time, I’ll take these little moments, these bright spots where she shares herself with the world.

Monday, October 22, 2018

Bless Her Heart

You know what’s funny. I get more parenting advice from people who have never raised children than anyone else in the world.

At my old job there were two women who never had children, never lived full time with children, never got up several times a night for YEARS with a child and these two women gave me more advice than all the people we worked with who were actual parents put together.

Last week, Tom got some advice about parenting Alyssa from someone who has never raised a child. Okay, let’s not be vague, it was Tom’s oldest daughter. She did give birth to a child and I do consider her his mother but she isn’t raising him. So…yeah.

Apparently, J follows Alyssa on several social media sites and is worried about the intensity of A’s relationship with N.

Tom was the one who talked to J. He reminded her that Lyss is almost sixteen, which means she feels things intensely. She’s fine. She and N are fine. We’re all fine.

And please, let’s remember that J might not be the most reliable person to be giving relationship advise.

My eyes have rolled right out of my head and are halfway to Indianapolis. Julie, please catch them and return them to me when we see you in Bloomington in a few weeks.

That’s how I feel about J’s parenting advice.

See, let’s remember that I also followed A on social media. I happen to live with her too. I see her and N together. I know they’d like to spend every waking hour together if it were possible/allowed. However, I also know that Alyssa has a very busy life, as does N. They make time for each other because they want to but other parts of their lives are not suffering because of their relationship. They maintain other friendships, they do their homework. N works. They’re both in the upcoming musical. They do a boatload of band things, both together and separately.

They’re fine.

They’re young and in love and that’s fine.

After he’d hung up with J Tom relayed her suggestion to me that perhaps Lyss should go spend a few weeks with her (J) to get her ‘out of N’s sphere’ for a while. OMG. Please. As freaking if.

I told Tom that J was the last person we’d want to send Alyssa away to spend time with if we wanted to get her out of Edon. J suggested that perhaps the only reason A and N are together is because there are only eleven other people in our town. Okay. Sure.

J has never raised a child. She was not the most trustworthy teenager. She probably remembers making REALLY BAD decisions as a teenager.

I reminded Tom that hey, at least neither N or A can get the other pregnant. So there’s that.

For the record, Alyssa will not be heading off to New Jersey to spend time with her sister. I feel no need to get her away from N. N is great. A is great. We’re all great, except maybe those people who have never raised kids who insist on giving the rest of us advice. They’re not so great.

Friday, October 19, 2018

1 in 8

We all know eight women, right? I mean, if you’re a woman and you have any family at all, you know more than eight women.

One in eight women will be diagnosed with breast cancer in her lifetime.

I graduated in a class of 44, pretty much half girls and half boys. That means there were at least twenty girls who became women. Which, statistically speaking, means that at least two of us were bound to end up with breast cancer.

You want to feel young? Get a breast cancer diagnosis in your forties (no, don’t do this, I don’t wish this on anyone, ever.) Every single doctor I saw during my cancer treatments told me that I was ‘so young.’ I skewed the average of the patients receiving chemo each time I went in for a treatment.

Cancer is not an ‘old peoples’ disease. It happens to all ages, all races, both genders. And it sucks.

The aftermath of a cancer diagnosis, even beyond treatment and being ‘healed’ is pretty awful.

Sure, I’m grateful to be here. I’m so very thankful to be alive but I am scarred, both physically and emotionally. I’m a wreck. I am still tired. I’m weak. I worried incessantly.

But I’m here to fight another day.

So get those mammograms, those screenings. Get checked, and then get rechecked. Trust your instincts. If something hurts and you can feel that it’s not a ‘normal’ ache/pain, fight your way through the medical bureaucracy and find someone who will listen to you.

Get any vaccinations available that might prevent cancer.

Both my girls have had the HPV vaccinations. Alyssa got hers before I received my diagnosis and Olivia after but I’d already planned for Liv to receive hers before I was told I had cancer.

If there is anything that might prevent cancer, please, PLEASE do it. It’s such a horrible disease. Of course no illness/disease is fun. I get that but I can only speak for cancer when I say that the treatment is pretty awful too.

Let’s keeping fighting the good fight. Let’s keep working to find cures for all cancers. Babies should not have to endure chemotherapy. Mom’s shouldn’t have to worry about loving their kids enough today because they might not be here tomorrow. Spouses shouldn’t have to bury their love because cancer took them away.

Let’s fight together to save more lives.

Thursday, October 18, 2018

Day of Rest

Once upon a time, Sundays were designated a day of rest.

The past few Sunday’s by 6pm I am so tired I just want to cry. I even sleep in (like REALLY sleep in) on Sundays and yet by the end of the day, I’m achy and tired.

I do laundry on Sunday, and that means I go up and down the basement stairs all day long. We usually have at least five loads of laundry to do, and that’s if I’m not washing sheets, which I usually am, so let’s make that seven loads.

Not only do I have to go down to the basement to do the laundry, I have to carry all the clean laundry to the second floor, so let’s just add in another fourteen steps I climb to the other fourteen. Up and down, all day long.

Added to all that is the fact that I cook on Sundays for the coming week. Tom really likes to feed leftovers to Liv most of the week so I cook something that will keep for days and days.

Every other weekend, I make a batch of cookies because heaven forbid we not have homemade cookies in our house.

Let me be honest, though. No one actually expects me to bake those cookies. I do it because I like to do it. I enjoy doing things that make my family happy. Cookies make them happy.

Clean sheets also make them happy, and I don’t mind doing any of these things.

But they do make me tired.

I’m so out of shape. I hurt a lot these days. If I sit for a few minutes, my joints get stiff and when I get up, I walk like I’m ninety years old.

I know I need to move more, that climbing twenty-eight stairs multiple times once a week isn’t cutting it. I need to exercise with intention. But it always feels like so much work and there are always other things that need to be done. So…one of these days.

One of these days I’ll figure out how to get more laundry done throughout the week so I don’t have quite as much on Sunday.

One of these days I’ll find a meal that my entire family likes/wants to eat and I won’t have to make several each Sunday to feed them all for the rest of the week.

One of these days I’ll go on a diet and lose these extra pounds that are taking a toll on my joints and making me ache all night long.

One of these days, I’ll feel healthy enough to actually take care of myself and get even healthier.

One of these days we’ll have an actual day of rest.

One of these days…

Wednesday, October 17, 2018

First Chemo Anniversary

A year ago today, I received my first chemotherapy treatment. I’d had my port for probably three or so weeks. I was nervous. I worried about how sick it was going to make me. I knew my hair was going to fall out and I wondered how long it would take from the first chemo for the first strand to fall out (16 days for anyone wondering.)

In the end, it wasn’t all that bad. Sure, it sucked and I felt awful at times (Thanksgiving dinner was fun last year, as I lay on my mom’s bedroom floor, dozing my way through day three post chemo.) but I obviously came through the other side and here we are, watching the anniversaries come and go.

There will be a lot of “One year ago today” moments in the coming months. I know this is probably boring and I’m sorry but I feel like I need to commemorate these moments, these days, as they come along.

I actually kind of dreaded the end of chemo. Those last twelve weeks aren’t so bad and as long as I was receiving the drugs, I knew no new cancer was growing. The chemo was keeping it at bay. I was told after surgery that I was cancer-free, that chemo and radiation was preventative. But I can’t help but worry that without those treatments, any new cancer might be developing, growing, spreading, killing me slowly until, well, it’s not slow anymore.

I am sure all cancer patients/survivors feel this way. I should probably find some to talk to rather than ramble here.

Every ache, every feeling of fatigue, every ping makes me think it’s back, it’s growing, and I’m dying.

I don’t like feeling like this. I don’t like wondering what the next doctor’s appointment is going to bring. I try to just keep living, keep loving, keep parenting my girls and being a wife to Tom. I try to take it day by day because, well, what else can I do? Even if it is back, well, I guess we’d start a new treatment and keep going.

I have a breast MRI this coming Friday. I worry because, well, as I’ve said before, once you’ve heard the worse news, you kind of expect it again. I am praying for the best and preparing myself for the worst.

I got through chemo once, I would get through it again if I had to.

Tuesday, October 16, 2018

Happy Birthday

Today is Amy’s birthday. The first one since she died in February. I can only imagine how hard this day must be for her mom, for her kids, for the love she left behind.

Amy’s daughter is pregnant with Amy’s first grandchild. I think she’s due next month. It’s a girl.

Amy would have been so thrilled. I believe she is thrilled, watching from heaven.

I also believe she’s still loving all of us, watching out for us, keeping us safe and reminding us each day that we’re loved.

When we were growing up, Amy was my favorite cousin. She was only thirteen months older than I am but she always seemed so much more mature. She was very protective even when we were little kids.

She had a tough time of it as a teenager and a young adult but she figured it out and left her kids with a legacy of love. They knew they were deeply, thoroughly loved.

She loved a lot in her 48 years. She left a legacy of love and devotion.

Who would ever think at 24 that they have lived half their life? It seems so unfair. I know she had more she wanted to do but it’s so much better to focus on all that she did do.

She lived. She loved. She raised strong, smart, kind children and that’s important work right there.

I pray that if my time is shorter than I want it to be that I can get as much loving in as Amy did. I hope my kids feel my love even when I’m not here to tell them and show them.

I’ve felt her with me in the months since she died. I’ve felt her comforting presence, letting me know that it’s all going to be okay, no matter how it ends. She’s been here with so many of us, loving us in her new way.

I’m grateful that I knew her. I’m grateful that I got to watch her mother her kids and feel the love she had for so many.

Happy Heavenly Birthday, Amy. You are remembered. You are missed. You are loved.

Monday, October 15, 2018

Anxious

Our school teaches the whole Cusp of Puberty thing to fifth graders. I think perhaps they should start a little younger but I’m not in charge so, whatever.

Olivia’s class was presented with this just last week.

Let me remind all four of you (ha! I amuse myself in thinking that four whole people read here anymore. But thank you, Julie for being so faithful. J ) that Olivia has been living the life of Puberty for over a year.

So this shouldn’t have been a big deal for her.

Yeah, you know what’s coming.

It turned out to be a big deal.

The night after the class, she was having trouble sleeping. I could tell because she rambled on and on for about a half hour after I tucked her in. I finally asked, “Livie, is anything bothering you?”

She sighed and said, “Well, you know how the girls went with the nurse to a classroom and the boys went with the gym teacher?”

“Yeah?”

“The nurse showed us a video about how our bodies are changing and it was weird. And then she said that our voices might change and crack.”

“Oh,” I replied. “Well, I think that mostly only boys have to worry about their voices changing and cracking.”

“Yeah, but if my voice is going to change and crack, what day will that happen?”

Aww, my little sweetheart. I get it. She just wants to be able to prepare for yet another change. I much prefer to know what’s coming too.

I reminded her that when she started her period, we didn’t know exactly day that would happen but that it was no big deal, we handled it together and it was fine. Though she acknowledged that I was right about it not being a big deal, she still asked a couple more times what day her voice would change.

I considered telling her that it would change next Tuesday, just so we could both go to sleep but decided that would be mean.

We continued to talk. I let her get it all out and when we finally fell asleep, I felt like I’d had a Good Mom moment.

My girls both like to talk at night, when it’s dark, when they don’t have to look at me and can just let it all out. I’m so glad we have these moments, this time to connect. I hope I’m laying foundations for them, building their confidence, giving them strength and confidence to face whatever life throws at them. They deserve that and if I don’t have decades like I want to think I do, I need to continue to make the most of these days that we do have together, these quiet nights where we connect and my love for them goes deep inside them where it will continue to give them strength even if I’m not here to continue to feed into it on a daily basis.

Huh…it seems that Olivia is not the only one who is anxious about a few things these days.

Tuesday, October 9, 2018

Dream

Okay, then. It took me over a year (one year, one month, two weeks and 4 days, to be exact) after being diagnosed with cancer to have a dream about dying.

In my dream I found another weird lump. This wasn’t in my breast, it was on my stomach, weirdly. But it was there and I went to the doctor, who told me I needed to prepare my girls to live without me.

I woke up at that point, all frazzled and scared and it was creepy.

I do not currently have any lumps on my stomach or anywhere else that I’m aware of. I do searches quite often because, duh.

I go through surgeries, chemotherapy, radiation, hair loss and regrowth without this kind of dream.

Does this mean that I might be on the cusp of accepting that I’m going to be okay?

I’m so afraid to even think that, let alone type it, because it feels like I’m daring whatever powers that be to prove me wrong.

I want so badly to be okay.

I want to be here with my girls as they continue to grow. I want to be here with Tom as we continue to grow. I want to take care of my family and friends and live and love.

I pray about this every single night.

I am no more special than any other woman who has a family, children, friends, a life. Why should I get to keep living and taking care of everyone I love when others haven’t had that luxury? Amy is not here to see the birth of her first grandchild, Baby A, this month or next. Other moms out there have lost their battle with cancer, leaving younger children than mine. Other mothers of special needs children have died, leaving their sweet babies confused and without the person who was their whole world, just the way my death would leave Olivia.

Why am I special enough to be allowed to beat cancer?

I’m not, but I want to anyway. And on the flip side, every day people beat cancer, they keep fighting, they keep living. Why can’t I be one of those people? I feel good these days, I feel lucky/blessed, whatever you want to call it. I am living and loving and fighting and even when the bad dreams come, I am grateful for every single day that I wake up.

Saturday, October 6, 2018

Pain

Yesterday at work, I was in pain, not horrible pain, definitely endurable but pain nonetheless. I thought to myself, "I wish someone could look at me and see my pain."

You know, like a superpower (that poor person) where someone could see heat spots on people, where they were hurting.

But then it hit me.

God sees our pain.

Not to get all theological and all but I believe. I pray every single day and I believe there is a greater being looking out for all of us and that there is something beyond this physical world.

So this belief helped me yesterday as endured my pain.

I realized in that moment that God sees everyone's pain and He probably FEELS our pain right along with us. We are never alone in our pain. How greatly He must hurt. The pain He must endure as our worlds burns, as it floods, as people hurt each other and kill each other and hate each other. I can't even imagine.

My pain, whether it is physical or emotional, is endurable because I have God on my side. He is probably carrying most of my pain at all times.

I am so grateful for that moment of clarity during a long work day.

I have to believe there is more good in this world than bad. I have to believe there is more love than pain. I have to believe that more people want to do go than those who want to do bad. I have to believe there are more good men than bad and more good women than bad. I have to believe that we ALL want to be better parents, better spouses, better friend. I have to believe that because I believe in a benevolent God who put us here to love and live and laugh and do to all those things even in the face of the bad that comes our way.

He sees our pain and He feels it right along with us. He loves us and wants better for us. I have to believe that.

Thursday, October 4, 2018

15

Today Tom and I have been married for fifteen years. Go us!

This past year feels like it should count for about five years compared to the previous fourteen. But hey, we weather a health crisis and a job loss and we kept our sense of humor and I'm pretty sure we still like each other. I consider myself very lucky to be able to say that.

Our girls are happy (especially when we let them have their way) and we are a good team.

Of course, it helps that we have a living room and a family room and both rooms have televisions. I can watch all the Great British Baking I want and he can watch all the mystery/cop/murder shows he wants. Win/win and no one is asking for a divorce.

Though to be completely candid, just today over dinner I did ask him if he wanted a divorce, but that's only because he was trying to talk like 45 (I won't say his name) and it was making me crazy. I mean, give me a break here, I cover my ears whenever that pompous ass is on the television. I can't stand the sound of his voice or the sight of his gross face and orange hair. To have my very own husband, a man who claims to love me, sit across from me saying that hideous creature's words, it was too much to bear.

Thankfully, he (Tom, not 45) declared that he does not want a divorce and, best news yet, he stopped saying those words in that voice. Everybody wins.

Wednesday, October 3, 2018

Not Much At All

I went on a rant about my parents yesterday and it got lost somewhere in the depths of cyber space.

Honestly, it’s probably for the best. I was cranky (when am I not, right?) and more than a little bitchy so, yes, someone/thing was saving me from myself.

I need to get a grip.

Let’s play a game. It’s October, Breast Cancer Awareness month. Let’s see if I can find positives about having had breast cancer.

Wheee!!

Well, let’s see. I think my marriage is actually stronger now that we’ve been through a major health crisis. Tom was pretty awesome during surgery, treatment and even this past summer when I wasn’t working. He is a rock. I’m lucky to have him and I’m trying hard to remind myself that he’s lucky to have me too. I am pretty sure he thinks so and that’s something.

And hey, tomorrow’s our anniversary, so there’s that. Sixteen years of marriage, almost eighteen years together. We’re among the lucky.

I wish I could say I take better care of myself. I’m trying to get into that mindset. I’ve resolved just today to try and eat less salt (that means cutting out the pickles and that makes me sad because I freaking love pickles.) I’m not quite there for cutting back on sugar (see above and anniversary, I’ve got to get a cake for that.) but I may be on the verge.

I still hate my body but maybe not quite as vehemently as I once did, so that’s something.

I wish I could say that having had cancer has given me some sort of zen and greater appreciation of life but yeah, no. I’m still cranky. I still get road rage walking behind slow people in the grocery store. I am grateful each morning when I wake up and get to spend another day with my family. I know that life is fragile, but that might be more because of Amy, my cousin, than because of my own fight. It’s all blurred together. I was diagnosed, started treatment, Amy got sick, was in an out of the hospital from November until February and then she just…died. She never got a definitive diagnosis. We believe it was some sort of lung cancer.

Yes, and I was still going through treatment. It was tough time for my extended family.

I do believe in the power of prayer. During my treatment, I was probably on every prayer list within a thirty mile radius of my work and house. And I felt the strength of those prayers. I feel like God always hears the prayers, even if He doesn’t give us the answers we hope for. Even if my prognosis had been worse than it was, I would like to believe that those prayers would have still given me comfort and strength.

I have an enormous appreciation for health insurance. Can you even imagine what we’d be facing if I’d gone into treatment without insurance? Wow. The mind reels at the possibility.

I trust my instincts that much more these days. Remember back in the days before Olivia’s diagnosis? I found her syndrome when she was NINE MONTHS OLD. I brought it to her doctor’s attention. I was told she was too pretty to have 5p- syndrome. I mean…

I held that syndrome close to my heart in the ensuing year and a half, knowing we would circle back to it. And we did. And her doctor (the on at Riley, not the one who said she was too pretty.) tested her because she was a smart, caring doctor and here we are.

I trusted my instincts enough to decide not to ‘wait and see’ as my first doctor wanted me to after talking about the pain in my breast. And here we are again. Trust those little voices that tell you something is wrong.

Don’t trust those voices that tell you that you are the Lloyd of your marriage (inside joke, except it’s not funny.)

I want to be stronger, smarter and better than I was before breast cancer and treatment. But really, I’m just me, with a slightly smaller left breast and some physical and emotional/mental scars to show for all that my family and I went through.

Happy October. Go buy a pumpkin. Get a mammogram. Hang a witch from your tree. Do your self exams. Eat some candy corn.


Tuesday, October 2, 2018

October

Oh, hey, did you know that October is Breast Cancer Awareness month?

What does this mean? Hell if I know.

I do know that A’s girlfriend, N, put pink gauges in her ears in honor of Breast Cancer Awareness. Go N!

I’m not sure if I’m supposed to do something or say something or celebrate my life or what.

Maybe we need cake. There’s always a reason to have cake. Just ask my giant butt. My butt freaking loves cake.

I guess I could make a list of all the ways breast cancer has changed my life. I could ruminate over how the last year affected me, both good and bad.

Maybe tomorrow.

Monday, October 1, 2018

Spirit Week Fall 2018

This week is spirit week for homecoming. The girls are going all out this year. Alyssa went so far as to enlist my mom’s help in making a tutu. Cool, right? I mean, I’m just so glad I didn’t get drafted into helping. Wheee!

Today was ‘Dress as your favorite Candy’ day for Alyssa and hat day for Olivia. They sometimes make different days for the Jr. High/High school versus the elementary school. I don’t know why, they just do.

Olivia was worried about this, though. See, last week, on Friday, they announced over intercom all the spirit days and Liv was fretful this morning that she’d be the only kid in a hat since they (whoever did the announcing) hadn’t said anything about hats.

I assured her that other parents check the school website as much as I do and it would all be fine. She wasn’t so sure and decided she’d pack her headband that held a tiny crown (so cute!) in her backpack and put it on once she was sure other kids were wearing hats. The leggings she was wearing could be said to look like they had gummy jewels on them, so she was set for wearing candy if she needed to be. Not that she’d explain herself to anyone, I mean, let’s not get crazy.

Alyssa wore a red t-shirt on which she’d painted a white S. She also wore a rainbow tutu she borrowed from her sister (no, NOT Jessica, duh) and polished her nails rainbow colors. She was, obviously, a skittle. She was going to suggest people “Taste the rainbow” as often as she could throughout the day.

Tomorrow is dress as a game piece. They’re both going as Scrabble tiles. Alyssa gave $5 to a classmate whose mom was going to make a bunch of t-shirts to spell out something about the sophomore class or you know, something. That woman, whoever she is, is way more ambitious than I could ever hope to be.

I bought a white t-shirt for Olivia, dyed it tan, and drew a black O and a tiny 1 on it. Obviously, she’s the letter O. What other letter would she choose? I suggested the Q since it has the highest value in Scrabble but she thinks I’m kind of stupid, so there’s that.

Wednesday is…oh, crap, what the hell is Wednesday? Oh, wait, it’s class color day. They’re calling it Battleship day. It’s a huge stretch but they’re kind of pitting each class against each other and the class that has the most kids wearing their assigned color wins. Whatever, it’s stupid but the kids love it so yeah.

O’s class color is orange. I did not buy a new orange shirt for her. Thankfully, the girls are the ages/sizes that they can wear each other’s clothes. Sure, Lyss is taller but they don’t borrow each other pants as often as shirts. Liv’s shirts tend to be a little short on Lyss, but that doesn’t bother her at all. A’s shirts are a little long on O but that doesn’t bother me at all. So it’s win/win/tie.

The sophomores were assigned the color pink this year. Lucky us, each year, there is a Homecoming T-shirt you can buy from the local sporting goods store. Each of the four high school classes are given a color and those shirts are printed and sold to gullible parents just like me.

Class color day is the day for which Alyssa made her tutu. She and my mom made a tutu out of blush and bashful, two shades of pink, one is much deeper than the other. She’s also got pink and white striped socks and something else, I’m sure. She’s going all out. I excited for both of them. This is a fun time for them.

Thursday is another day that’s different for the high school from the elementary. The elementary school’s theme for Thursday is Mix-up day. I have a couple of options for Olivia. I set out a pair of Christmas pants that she can pair with a Halloween shirt if she wants or she can wear a striped shirt (orange and white) with some chevron pants (black and white.) We’ll see.

Alyssa’s theme for Thursday is Nerd day. I’m leaving that one up to her. I’m not the best judge on what’s nerdy versus just comfy. What can I say? I’m a total nerd and I’m okay with that. I’d say don’t @ me but, well, I can’t quite pull that cool shit off.

Friday is, of course, Bomber Blue and Gray day. Because why not? Not that Olivia will go to the game that night, let’s not get carried away. But she will wear blue and gray to school and fit right in. She probably doesn’t even know (or care) that this whole spirit week thing culminates in the football game. As far as she’s concerned, football can go screw itself. I’m kind of with her on that one…

Then there’s the dance on Saturday. I have to go tonight (Monday) and order flowers for the dance. Yay! More money to spend. But it’s fine. It’ll be great and we’re over here making memories.

Reading over this, it’s reading a bit more snarky than I’d intended but you know what? Screw it. I’m tired. I have a headache and this spirt week stuff is wearing me right out.

Last week it was work. This week it’s spirit week. Next week it will be something else.

Thursday, September 27, 2018

Tired

Work is kicking my butt this week. That's all.

Wednesday, September 26, 2018

Taking Up Space

My mom went with me on Saturday afternoon/evening to watch Alyssa and her bandmates perform. There were four other high school marching bands as well as a college marching band. It was fun.

Except…

There’s always an ‘except.’

Except the woman in front of me had no idea who much space she actually took up. She was so excited to be there and I was happy for her that shew as there to watch whatever kid/grandkid/great niece/nephew was performing.

She was wearing bright green (including her nails, which were FIERCE) so it wasn’t hard to figure out which school she was there for.

But she was so very there, in that space.

She’d brought one of those stadium chair that clip in the bleachers and give her some back support.

Good for her.

Unfortunately for me, the chair wasn’t all that substantial and each time she leaned back in it, she was basically in my lap.

And she appeared to be completely unaware of this fact.

She leaned back often and smashed into my knees, which should have been in the middle of her back, jabbing away at her, but her chair cushioned her (but not my knees) enough that she simply had no clue that she was encroaching on my space.

Because I’m a wuss and never one to rock the boat, I never said a word. But I did glare a few times and I positioned my knees in the best way possible to give her a start if she felt them at all.

Alas, she didn’t feel them and I was smushed by her above average weight on several occasions.

The bands were amazing. The fans…not so much.

Sunday, September 23, 2018

An Experiment

Monday afternoon I was so tired that I announced my entire family that I was going to bed at 8:30. Olivia declared she was then too because no one else in the family knows how to get her ready for bed like I do.

Whatever, as long as she didn’t fight the early bedtime, I didn’t care if she went with me or waited until 9:00. Okay, honestly, I knew it would be easier for everyone, including me, if she just went to bed when I did.

So yes, we headed to bed at 8:30 on Monday.

Bedtime is Liv’s time to decompress, to talk about her day to me, to get whatever is in her sweet head out. She usually talks to me for at least a half hour after we’ve turned off the lights.

This means if we go to bed at 8:30, she’ll usually fall asleep between 9:00 and 9:30, which honestly, for a kid her age, isn’t that bad, maybe even a little late.

That first night was so lovely that we’ve gone to bed every single day this week at 8:30, 8:45 at the latest.

Thursday night she talked to me until 10:00, so I’m thinking three nights of early bedtime caught her up on any sleep deprivation she might have suffered. But that’s okay. It’s great even. We’re going to continue this habit of going to be earlier because I certainly feel better and I know she must too.

Of course, the teenager is still keeping teenage hours. I got up at 12:30 one night/morning to pee and take some Excedrin and I saw the light on under her door. I could hear her on her phone too. The next day I made the gentle suggestion that even though she’s not twelve, she still needs more sleep than your average bear and maybe 12:30am was not the best time to go to sleep.

She acknowledged that maybe that was a little late and promised to try and get to sleep earlier going forward.

We’ll see. Since she gets herself up each morning, I don’t have to deal with the crankiness that comes from only six hours of sleep on a consistent basis but there are other ways to discover if she’s getting enough. That’s all she needs to know.

Saturday, September 22, 2018

Weekend Plans

We have a lot going on this weekend.

Relatively speaking, that is. I mean, if you were to look at our weekend schedule and compare it to Julie’s and her daughter’s, well, we’re total slackers but for us, it’s a busy weekend.

Which makes me sad and sleepy. When we’re busy, it means I don’t get to sleep at much and everyone knows a sleepy me is a cranky me. No one, especially my family, wants to deal with a cranky me.

Friday in September means high school football. Now, since I’m not a football (sport?) fan, one would think this wouldn’t mean anything to me. Alas, my daughter is in the marching band and even when there are away games, the band is bussed to the game and so…Mom schleps her big butt to the game too. On the bright side, since it’s an away game, her band doesn’t play the pre-game and so I don’t have to suffer through the entire first half before her band plays for half-time. Wheee!!

So that means I’ll get home from work at 5:00, take O to my mom’s and visit for an hour or so, head home where Tom will feed Livie and I’ll head to the game. It’s at a school that’s fairly close, all of ten miles from our house, so that’s nice. I’ll probably get home around 8:45 or 9:00, O and I will settle in and wait for A to get home from the game. She obviously has to stay for the whole thing and then gets bussed back to the school. N usually brings her home these days. How convenient is that?

Saturday, Alyssa has another band thing, this time farther away. She has to be at the school early afternoon and I get to go over in the evening to watch her and her bandmates show off what they’ll have learned that day. We have to fit buying groceries in there somewhere because my family seems to think they need to eat every single day. Heck, they want to eat several times a day. Sigh.

Sunday I have to attend a parent meeting at the school at 6pm for the musical, in which Alyssa has a small part. She didn’t get the part she tried out for but she’s rolling with it and making the best. I’m proud of her for being so easy going while still encourage her to speak out and get noticed. It’s a fine line

But before the meeting…laundry, laundry and more laundry. But even though I’ll be spending most of that day home, it doesn’t feel like a day of rest. I have a filthy house right now. The carpets need vacuumed, the kitchen floor needs to be swept and mopped. I need to clean all the bathrooms because, yuck.

Beds need stripped and sheets need washed. After that, beds need to be remade. I am so very appreciative of the luxury of having a washer and dryer in my house to be used at my convenience. I know not everyone has that. And hey, how lucky are we that we can afford groceries each week?

Anyway, written out, it doesn’t seem like much but as it rolls around in my head, it feels like a full load. Remember that phrase from college? I remember being so jealous of students who ‘only’ took twelve credit hours and still didn’t have to work. I worked every semester of college except the first one and also took at least fifteen credit hours, more often seventeen or eighteen, or as they said back in the 20th century, it was a full load. I guess that prepares us for marriage, children and jobs. Most definitely a full load.

Friday, September 21, 2018

The Ugly Spectrum

I’ve been having a lot of angst about my hair. I know. I KNOW! I’m so lucky to have hair to be stressed about. I know this.

And yet, I have to look in the mirror every single day, several times a day and I have to see my hair and it’s awful.

Tom told me recently that I am the only person in this entire world who thinks my hair is horrible.

I know he’s right and yet, as I told him, I’m also the only person who has to look at myself every day. I hate it so much right now.

Next week? I might love it. Probably not but it could happen.

See, here’s the thing. Ugly is a spectrum. There are different levels or stages of ugly, if you will. Right now, I’m on the very far end of the ugliest stage of ugly. I’m not happy at all.

Next week, I will be somewhere else on the Ugly Spectrum. I hope to inch my way up toward the Less Ugly end but who knows.

There is a spectrum of pretty too, but I’m nowhere near that one. I hope to get back on it at some point but I’m not holding my breath.

I realize that everyone out there (if anyone were reading this) would tell me I’m being ridiculous. I know I am. But I can’t help it. I can’t look at myself and see anything but the far end of the ugly spectrum. It’s sad really. I’m kind of sad, actually.

But I keep reminding myself that I’m so lucky. I’m alive. I have hair. Heck, one of my biggest complaints is that it’s thick and unruly. I realize how stupid that is. People WANT thick hair. Hell, I want thick hair. But not THIS particular thick hair, at least not today.

I’m ridiculous. I might be crazy. I know this is all residual issues relating to cancer and cancer treatment and figuring how to live after all that. My hair is just the most visible thing I have to focus on right now. I can’t focus on my stupid boobs, I can’t stop potential cancer from growing again. But I can bitch about my hair from now until next Tuesday. I can obsess about the stupid curl at the back of my head on the right side. I can worry that I’m starting to edge into mullet territory. I can think about when I’ll need to dye my gray roots again.

Hair is trivial, which is why I’m making such a big deal about it. The big stuff, the stuff that really scares the hell out of me, I can’t control any of that. I can, sort of, control my hair. So that’s what I cry about. If I were to start crying about cancer and all it entails, I might never stop.

Thursday, September 20, 2018

A Good Kid

A Good Kid

As I was hugging Lyss goodbye this morning before heading to work, she asked, “Do you want me to stop Dad from helping Livie with her homework tonight?”

I replied, “No, I don’t think he’ll try and help ever again. But thanks.”

She smiled and went back to brushing her teeth.

She’s a good one, that girl.

Our homework saga from the night before isn’t worth rehashing. I will just say that everyone learned their lesson. Some lessons were more painful than others but everyone learned.

As I started down the stairs, she called to me. “I’ll just keep an eye on them, play referee if I have to.”

I laughed and headed to work, confident that there would be one level head in the house until I got home.


Wednesday, September 19, 2018

Who Gets to Decide Who’s Ready For What?

We spent Sunday afternoon in Battle Creek, Michigan with my mom and aunts and cousins. My Auntie L hosted a second annual tea party in Sabella’s honor. Sabella is the daughter of my cousin. She’ll be thirteen in November. She’s wheelchair bound and is ‘homeschooled’. I put that in air quotes because I’m not sure how much schooling she actually gets. She’s incredibly lonely. The school she attended for the first few years of her schooling life was horrible to her and so her mom pulled her out of school, intending to homeschool her. But S is very stubborn and her mom works and so…she doesn’t get much schooling is what I’m saying.

But that’s not actually what this post is about.

It’s about my aunt L and her homophobia.

Let’s back up a bit. Alyssa was hounding me all weekend about leaving this party early because she wanted to go see a movie with N. I’d reminded her several times that she’s pretty much spent the entire previous week with N because FAIR WEEK. She acknowledged this but still wanted us to leave by 3:00 so she could see that movie.

Sigh.

When we got to the party at a little before noon, we were some of the first to arrive. No big deal, we helped with final set up and picked our table.

My cousins E and L arrived soon after we did with E’s daughter S and E’s niece M. M quickly zeroed in on Lyss and they introduced themselves. M is seventeen, though she looks about thirteen. She’s adorable, for what it’s worth.

They became fast friends. It was nice to see.

As the Tea Party got started Auntie L read a letter my cousin H had found in our cousin Amy’s trunk. Remember Amy? She died this past February. Amy had stored some things at H’s house and so H went through them and found a letter that had been sent to my grandmother from her daughter, Debra. Debra died when she was nineteen. This letter had been sent to my grandma just a few months before she died.

After she read the letter, Auntie L talked about when Debra first got sick at thirteen. She said that after Debra came home from the hospital for the first time a couple of neighbors came over to visit. According to Auntie L (who was eleven at the time…for what it’s worth) these neighbors were lesbians and they forced Debra to bathe in front of them. This has made Auntie L hate all lesbians for the rest of time.

She stopped talking at this point and let the subject drop.

I glanced at Lyss to see how she was doing. We’d heard this story before, while Auntie L was cutting my hair several months before. She hadn’t dropped the subject quite as quickly that time.

I could tell from the look in M’s face that Lyss had shared with M the fact that A has a girlfriend.

M asked of Auntie L knows that Lyss has a girlfriend.

I said, “No, I don’t think she’s ready to know.”

M suggested that maybe knowing would make her ready.

And maybe she’s right.

But maybe Lyss isn’t ready to be the post child for lesbians and be the one to make Auntie L rethink every single bias she’s ever had concerning lesbians and bisexual people for the past fifty plus years.

Honestly, to me, this isn’t about Auntie L and her issues, it’s about letting Lyss feel safe. It’s about protecting her and letting her set the tone for when she comes out, to whom she comes out and how far out she’s willing to be at any point in her life. These are not my choices. These are her choices.

And I support them.

While sitting there, I did tell my cousin E about Alyssa and N. We’d shown off Lyss’s homecoming dress and E asked if Lyss was going with a date or if she was going with a bunch of friends.

I told her Lyss was going with a date and then told her about N. I asked Lyss to let me show E a picture of her and N. E was very supportive and asked if Lyss was okay with what Auntie had said.

Lyss confirmed that she was fine.

After that, my mom came over and asked Lyss if she’d found an N charm for the bracelet all the girls were making. We’d found each girls’ own initial but when my mom offered to look for an N for Alyssa, that helped. My mom has had a hard time accepting N but when faced with blatant homophobia, she comes through and for that I’m proud of her and appreciate her.

I will continue to let Alyssa decide when and how she wants to talk about her relationship with N. I will support her however she needs, up to and including telling off a beloved Auntie if that’s what Alyssa needs from me. We keep the lines of communication open and talk about this stuff as much as she wants/lets me. We’re still figuring it all out but at least we’re on the same side…always.

Tuesday, September 18, 2018

5p- At Almost Twelve

Now, I know we’re not a typical family living with 5p- syndrome. I get that. I acknowledge how lucky we are.

But we continue to live with our version of it.

And it’s not always easy. I am very aware that it could be and is so much worse for a lot of other families out there but knowing others have it worse doesn’t necessarily make things easier for us. You know?

So here we are. She’ll be twelve in November. She’s in fifth grade. She’s so funny and sweet and smart and stubborn and sometimes frustrating.

At home she loves her tablet, she loves running and letting her dad swat her with a fly swatter. She would prefer it if we’d just still spoon feed her breakfast, lunch, and dinner. I refuse, but some days, Tom feels like it’s just easier. Honestly, it’s laziness on both their parts. Liv doesn’t want to do the work of spooning food into her own mouth and Tom doesn’t want to do the work of fighting with her to spoon the food into her own mouth.

Some days, I’ll fight the fight, urging her over and over to just eat her food. Other days, I figure if she’s hungry enough she’ll eat. If she isn’t hungry enough, well, there’s always another meal in a few hours. The child is not going to starve to death.

At eleven years and ten months old, she’s almost 5 feet, 3 inches tall and weighs around 105 pounds. So yeah, not gigantic, but not to the point that missing one meal or hell, just part of one meal is going to lead to her being hospitalized due to starvation.

So that’s happening.

She’s sleep well these days, thank you Lord. I’m so very grateful for that because when my kids sleep well, I sleep well. At one point over the summer, she was waking me up consistently at least once, sometimes twice a night. I let this happen for about four nights before I had a little talk with her during the light of day. I reminded her that night time is for sleeping and if she wakes up and sees that it’s still dark, she should just roll over and go back to sleep. She should NOT wake me up because she’s lonely. I told her that if she was sick, as in throwing up or in a lot of pain, she could wake me up and tell me. But if she can’t find the book light or ball or turtle light she sleeps with, well, I am not getting out of bed to help her find one of those things. She can wait until morning.

After that talk, she hasn’t woken me up again. So I’m checking off the box beside, “Mature enough to understand that Mom needs her sleep more than Liv needs her book light.”

Each fall, right before school starts, we reteach her how to tie her shoes. She wears flip flops all summer and just doesn’t care enough about tying her shoes to remember the process. I mean, why should she when she’s got parents who will teach and teach and teach it to her and then, when she takes her sweet time doing each morning, will just tie the damn things herself?

There are a lot of things I know Liv is capable of but that she either doesn’t want to do or that we don’t bother making her. I know we’re doing her a disservice and I’m working on that.

At school…her teachers are amazing. She is in the mainstream class for science and social studies. She’s in a smaller class with an aide and a special education teacher for reading and math. She joins the other fifth graders for gym, technology, art, music and media center. She doesn’t seem to mind school but I don’t think she particularly enjoys it.

She doesn’t have what I would call friends. She knows everyone, everyone knows her. Everyone is kind but since she still doesn’t interact with her peers, she simply can’t make friends. Right now, it doesn’t seem to bother her. She seems to think her peers are weird and annoying. But honestly, if she’s lonely, how can I know unless she tells me? She’s not very good at naming her emotions, though we’ve used the movie Inside Out to help her figure out what she’s feeling.

The emotion she expresses most often is joy. And for that I’m grateful. I want her to know joy. I want her to know contentment and love and happiness. I want her to have friends, though, too. I want her to feel like she fits in. I worry about loneliness and feeling left out.

We spent time with my nephew who is ten and a cousin’s daughter (sort of like a niece, right?) who is nine. Olivia had a blast with them. Stella, the ‘niece’ is what her mom describes as weird too. She’s very intense, very mature for her age and so very serious. Jaxon is so very much a typical ten year old boy. He kind of bridged the gap between Olivia and Stella. They seemed to have a blast on Sunday afternoon. They all got so dirty and that actually made me happy because Olivia isn’t usually one to play outside in the dirt and neither is Stella. Those girls needed that boy to teach them how to play.

All of this is why we continue to push for Olivia to have as much time with her typical peers as possible. She watches them and I definitely think she’s learning from each interaction, even if she doesn’t appear to be doing so. She takes it all in and I hope she’s learning to read tone of voice, facial expressions, conversational give and take. She does all this with Jaxon but she’s been with that kid her entire life. I want her to learn to do it with others beyond her very small circle of family. These days, she will talk to me, Tom, Alyssa, my mom, my step dad and Jaxon. She’ll have actual conversations with all of us, give and take, telling stories, listening to us, asking questions, waiting for answers but for others? This doesn’t happen.

She will whisper to her teachers still. Her aide, a woman who has been working with Olivia for several years, has the most luck getting her to converse with her. But new people are tough for her. She does love to go to school and tell her aide, teachers and therapists stories about what happens at home, so…we have to be careful at home. Ha! Not that there’s a lot of craziness happening at home, I mean, we’re seriously boring people.

I think the older she gets the bigger the gap between her and her peers gets. I don’t really let it bother me that much, honestly. I mean, she’s my girl, I adore her (even when I’m exasperated by homework sagas, food issues, a puddle outside the bathtub, etc.) She’s so joyful and so much fun to watch and listen to. So she’s not your typical fifth grader, so what?

My mom notices, though. We go to football games together. Obviously not to watch the actual football game but to watch Alyssa in the marching band. While there, though, my mom will notice Liv’s classmates and how mature they are. These kids are running around, nowhere near their parents, helping with water for the football players, helping with littler kids, etc. And my mom sees what Olivia is not doing.

I don’t take Liv to these games because she’d hate it. She’d be insanely bored and would drive me nuts asking over and over when we were going to leave. She doesn’t want to run around with her peers, playing catch with a small football, watching the cheerleaders with the idea that she might someday be one of them. She doesn’t want to go just to see and be seen. She doesn’t care about that stuff and I’m okay with that.

I see Olivia for who she is. I try to celebrate her joy, he laughter, her very life. I can’t let myself fret over what she’s not doing. That’s not fair to her or to me. It will just steal the fun of everyday life with my littlest sweetheart. How is that fair to anyone?