Monday, July 17, 2017

These Girls

I apologized to Alyssa the other night.

Why? Well, let me tell you.

While we were at the family reunion a couple of weeks ago, I was telling a story. I don’t even remember the story now, only that Alyssa was part of it. And during the story, I said something about her rolling her eyes or sighing. Something that portrayed her in a less than flattering light.

She was right there and she protested, saying she hadn’t done or said whatever it was that I’d said she’d done or said.

I thought about it for about a week and realized that while I fully confess to being the queen of hyperbole I need to turn in my crown when it comes to telling stories about Lyss. Especially when she’s right there. It’s not fair to me to tell a story and exaggerate some of the features of that story if it makes Lyss look bad. She is such a great kid and she deserves for me to tell stories that show how great she is, not how she’s a ‘typical teenager.’ Because really, she’s not all that typical.

So I told her all that and apologized if I’d ever made her feel bad when I was telling stories. I promised her that my stories will be more true-to-life and less exaggerated for effect, especially when she’s the star of those stories.

Livie, on the other hand, is still a my mercy.

Except with that girl, I don’t usually have to exaggerate to make the stories more interesting/funny/whatever.

Alyssa marched with her high school marching band in the Bean Days parade this weekend in Montpelier, Ohio. The parade started at 1:00pm. We got there at about 12:10 to try and get a good seat. Seats being on the sidewalk along Main Street. We got a decent spot under a tree across from the Circle K gas station. Once we were settled, my mom held our spot while Liv and I went to the gas station for refreshments and a potty break. (Ha! Alyssa hates it when I use the word “potty”. She insists that if a person doesn’t have a child three or younger, using the word “potty” is unnecessary. She’s prefer we say we’ve got to waz than say we have to use the potty. Whatever. P.S. No exaggeration here!)

Once we made our way back we settled in and waited. And waited and waited and waited. The parade didn’t actually make it past our post until 1:20. Alyssa’s band was the third to the last group to march by. That happened at 2:10.

Olivia managed to gather quite the loot of candy even though Jaxon wasn’t there to be her gatherer. She managed to rouse herself maybe three times to move from her perch under the tree to the road (maybe four feet away) to pick up a couple of suckers that had been tossed her way. But the rest of the time the people in the parade literally tossed candy into her lap. I mean, what? When we attend the 4th of July parade in Angola, kids are just about knocking each other over to get to the candy and the boys next to us acted like there was an invisible fence between them and Olivia. When the candy was on her side, those boys acted like it didn’t exist. It was weird.

Finally, once the band marched by (I got video!! Wheeee!) we gathered up the root beer stained quilt (Thanks, Liv.) and my mom’s chair and headed back to the car.

We’d walked maybe ten feet when Olivia deadpanned, “Well, that was…fun.”

Then she laughed at her own joke and opened another DumDum.

Thursday, July 13, 2017

Calming Down

Last Sunday was a busy day. I woke up before Olivia (unheard of on a weekend morning) and started getting things ready for the family reunion.

I needed to cut up the Rice Krispie treats. Squares, simple, non-watermelon squares, thank you so much. I put all the ingredients for the green bean casserole on the counter to be mixed and baked just before we left for the park so it would still be warm when we got there.

As is usual when I’m not in my bed when Olivia wakes up, her first stop was to Alyssa’s room to ask her sleeping sister if she knows where I am. Alyssa mumbled at Liv to go downstairs and LOOK for me but Olivia decided to muddle around Lyss’s room for a bit, making a bit of a mess on Lyss’s bed.

The day progressed, we went to the reunion, came home and collapsed on the couch due to too much socializing and being outside in the heat all day.

We scrounged up dinner – HOT DOGS FOR ALL!! – and then settled in to watch Big Brother. It’s a guilty pleasure, I do not apologize.

When it was over, I announced that I had to go to bed since I had to work. Alyssa declared, “Oh, yeah, we still need to change the sheets on my bed.”

I probably groaned. I know I made some sound of defeat.

Alyssa then said, “Calm down, Mom. I can change the sheets myself.”

And the sun came out at 9pm on a Sunday night. The stars aligned, the angels sang and I realized with near-glee that I have a child who is of an age where she can change the damned sheets herself.

I might have hugged that child.

She laughed and said, “Thanks for not getting mad at me for telling you to calm down.”

I told her, “I’m just too happy about you being able to change your own sheets to be mad about that.”

Honestly, I’ve wondered in the past year or so if I’m doing Lyss any favors by doing most of the household chores myself. I worried about sending an eighteen year old off to college without any basic skills like laundry, making a bed, cleaning a toilet.

And look at that, she knows how to make a bed. She’s been doing dishes all summer. And I know she can run a vacuum cleaner like a champ. Now we’ll work on those toilet cleaning skills and I’ll be able to send her off to college with a clear conscience.

Tuesday, July 11, 2017

It Was a Good Run

Someone else finally offered to take over the office of president of my husband’s family reunion committee. Tom’s been president for at least eight years and it felt like a LONG eight years. Just saying.

See, when he was president, that made me the ‘first lady.’

Trust me it’s not nearly as glamourous as it sounds. Basically, it meant that I had to go shopping at the dollar store (we have several in the area, some don’t actually only charge a dollar for everything in the store. It also meant that I felt (self-inflicted for sure) pressure to take more food choices than anyone else and I also felt like I needed to be creative in my food choices. Last year I made Rice Krispie treats that looked like watermelon slices. They were adorable but they were also more work than Rice Krispy treats should be.

It was a good run. I think Tom actually enjoyed his years of presidency. When he asked if there was anyone interested in taking over, on young (ish?) man asked, “What does the president do?”

Tom said, “Tell everyone else what to do.”

At that, the question asker was sold, a mock-vote was held and a new president took office.

We handed over the gift bags we’ve been using for a couple of years and Tom told the new president that he (Tom) will arrive at next year’s reunion early to help him (the new fearless leader) figure out what needs to be done and the whole exchange of office went smoothly.

And!! Next year I will make brownies with peanut butter M&Ms and green bean casserole. What? We’re in the freaking Midwest, it’s what we take to carry-ins.

On a more serious note, I think reunions are really for the older generation. The fellow that took over the presidency of the reunion committee is probably in his early thirties. I’m terrible with ages but that’s what I’m guessing. Last year was this guy’s first reunion in years. It was, sadly, his dad’s last. He father passed away in December.

The new president and his girlfriend are expecting their first child in September. And so the world turns. One generation dies and the next one is born. I think that the new president is feeling his own mortality a little bit from losing his father and expecting his son.

This is, obviously, speculation on my part but most of the attendees of this reunion each year are either very young or quite old. The very young are forced to come by their parents/grandparents and the very old come because, hey, they might not be around to do so next year. Those between the ages of, say 18 and 30 tend to be off living life and don’t have as much time or give as much thought to visiting with distant relatives once a year. But then they lose their parents and their babies are born and suddenly, family takes on a whole new meaning.

Out with the old (president) and in with the new! I wish the new first lady much luck.

Friday, July 7, 2017

Filling the Cup

Olivia enjoys drinking cold water. She much prefers her water to be refrigerated for several hours before drinking. We keep a gallon of water in the fridge and refill her cup all day long using that water.

But in the evenings, when she’s had her last drink of water, Tom or I (or sometimes Alyssa if I ask her REALLY nicely) will refill Liv’s cup directly from the kitchen faucet and place it in the refrigerator so it can sit overnight and chill for her morning consumption.

She obviously gets this preference for icy cold water from her dad because I much prefer my water to be closer to a tepid temperature. In fact, you can just go ahead call me Amy Farrah Fowler because my drink of choice is tepid tap water. I fill a bottle with water each morning when I get to work and it’s warmed nicely to room temperature by the time I get to each lunch. I CAN drink cold water but I’d rather not.

Anyway, back to Olivia and her nightly cup of water. The water is in a cup that has a lid because, duh, we’re no stupid around here.

The night before last, I suggested that she refill her own cup from the faucet. I mean, the child is ten and a half years old. She’s almost five feet tall (in fact, she might actually BE five feet tall, we haven’t measured her in a while.) and she can very easily reach the faucet.

I took the lid off her cup and made her refill the cup at the faucet. Then I put the lid back on and had her put it in the refrigerator. Note, I used the word ‘made’ because she was reluctant to take on this responsibility. That’s Olivia. She much prefers to let others do for her. Whenever anyone suggests that she do something for herself, she responds with shock and indignation. Fold her own underwear? Feed herself a chicken nugget? Where do we come up with the outrageous demands of the poor precious snowflake? Don’t we realize how fragile and delicate she is?

Yeah. No, she filled that cup herself.

Last night she tried to hand me her cup and I pointed to the kitchen. “You can fill it yourself,” I informed her.

She huffed and sighed and retreated to the kitchen. She returned a couple of seconds later with her cup, saying, “I can’t get the lid off.”

Okay. So yes, she has weak hands. I’ll give her that. I took the lid off and handed it and the empty cup back to her.

She wanted to know, “Why can’t you just fill it?”

“Because you’re big enough to do it yourself,” I told her, returning my gaze to the television where a riveting episode of Big Brother was being aired.

She sighed again but returned to the kitchen, filled the cup, replaced the lid and put the filled, lidded cup back in the fridge.

She can do so much more than she wants to do. She can do so much more than we require of her. But we’re getting there; one annoying chore at a time.

Thursday, July 6, 2017


It’s Tom’s birthday! Go Tom!!

He’s not big on celebrations. I mean, duh, he’s a DUDE, so he has to act all tough and pretend that he doesn’t like it when we make a fuss of him. But we do it anyway, because, hello, birthday!! We love birthdays. We, of course, being me and Alyssa, and Olivia. And Tom’s great about making our birthdays special so he deserves the same, whether he enjoys the fuss or not. Pssst…I think he kind of likes it even though he threatened to turn off his phone this morning so none of the older kids could call him. I told him not to be a birthday Scrooge.

But sometimes I think it’s just for show. He doesn’t like to make a big deal but he seems to appreciate it when the girls and I do it for him.

So we got him a few little gifts. I bought a cheesecake because it’s his favorite and we’re going to have a nice, low key celebration for our favorite guy.

We’re lucky to have him and I think he knows that we know it.

Wednesday, July 5, 2017


The reality of having a child with special needs is that they (usually) continue to grow in a typical manner even if they are immature for their age. Their bodies don’t know or care that their minds aren’t ready for things like puberty, menstruation, shaving legs, etc.

So while a child might be mentally/emotionally seven years old, if their body is older, well, you guessed it. That child will still reach puberty at the typical age.

I’m sure it’s obvious by now that someone in our house, the someone who had 5p- syndrome, started her period. I don’t want to name names because she deserves a little privacy but this isn’t so much about her as it is about me and how I, her mother, am dealing with this new, ahem, development.

Because let’s just get this part out of the way…she’s fine. She’s all in with this whole having a period thing. I mean, it’s just one more thing that makes her more like her sister, and what could be better than that.

But I have to confess that it’s more work the second time around than it was when the first girl hit this part of her life.

We’re rolling with it because, duh, that’s what you do. And let’s face it, she’s VERY high functioning. If I had to say how 5p- really effects Olivia is that’s it’s made her emotionally and socially immature. But we’ve got this.

I guess the whole reason I’m even writing about it is because I know that parents find this site when they’ve first received a diagnosis of 5p- syndrome and they’re terrified. They’re grieving the baby they thought they were having. They worry that their child will never be ‘normal’.

And okay, yeah. So none of us would ever call Olivia normal. But only because she’s extraordinary. Sure, I helped her a lot this weekend but I let her do the ‘work’ of dealing with this new issue. I asked her if she thought she needed to change each time she went to the bathroom. I showed her how to use the pads, showed her how to take them out and wrap them up to throw them away.

But I did all this with Alyssa too.

This is all a part of growing up. Special needs hasn’t stopped that from happening and honestly, I’m grateful for that. I want her to grow up and have as ‘normal’ a life as possible. I mean, don’t we all want that for our kids?

Okay, so I wish we’d have a couple more years before dealing with this but…we don’t. So we’re dealing. And hey, it’s better now, during the summer, than, say, October, when she’s in school. At least we’ll get a couple of months of practice before heading back to school and having even one more thing to worry about on top of grades and homework and ‘friends’ and gym class (which she hates.)

So yeah, focusing on the positive here.

Thursday, June 29, 2017


This is not actually my story but I’m related to the main character so…I’m telling it.

My grandma is almost 92 years old. She was born in 1924 to a single woman in her early twenties. Yeah, my great grandmother was an unwed mother back when that sort of thing might have resulted in a stoning. Sadly, I’m not actually joking here. If I were, yeah, bad joke.

But here’s the thing. My grandma grew up not knowing her father. Her mom got married when she was two and had two more daughters. My grandma grew up calling her stepfather “Daddy” and loving her sisters.

My grandma grew up, got married young (at 18, which is kind of when people got married back in the 1940s and she started having babies. My mom is the fifth of my grandma’s twelve children.

My grandma currently lives with my aunt. This aunt is my grandma’s ninth child, her sixth daughter. This daughter thought it would be cool to do the whole thing and so she and my grandma spit into a vial, sent that saliva off and waited.

A few weeks later, they got their results. They were interesting.

Most interesting of all, though, is that had several matches in the search for my grandma’s close relatives.

In fact, they found FIVE half-sisters. Sisters my grandma didn’t know existed because she’d never known her father.

My grandma has talked to several of these sisters and she’s just so excited to have found them. Word of mouth says they’re excited to have found her too. She was her father’s first born daughter.

So in a couple of weeks my mom and four of her sisters are taking a plane ride with their mom to visit a small town in Alabama, which is where her sisters live. My 92 year old grandma is going to meet her sisters for the first time.

How cool is that?