Tuesday, September 2, 2014


Sometimes people don’t get it. They don’t mean to be insensitive or awkward at all but that’s what comes out.

My dad visited last Saturday evening. He’s the one who really, truly hoped I was a carrier that caused O’s deleted chromosome so that it might be traced back to him. He wanted a reason for his lifetime of weirdness.

Embrace it, Dad! I wanted to yell. Embrace the weirdness. We’re all weird in some way or another, just accept it and celebrate it.

Well, he was sorely disappointed when the tests came back that Tom and I both have normal chromosomes. Her deletion was a random, spontaneous act of nature. We’re lucky she, the embryo, survived past the tenth week of gestation let alone to birth and beyond.

Neither of my girls speak to my dad. That has nothing to do with O’s syndrome and everything to do with the fact that they’re both shy, and sort of stubborn, children. They’ll wave to him when he arrived and wave when he leaves.

They will, however, talk to me when he’s there. So that’s not weird at all.

Olivia was doing just that the other night. She was laying on my lap, talking to me as my dad sat off to the side of us, talking at me too. I was trying to keep up with both of their monologues and doing a crappy job.

Then he abruptly changed the subject from politics (for the record, I HATE politics.) He said something like, “To the uninformed observer, she’s completely normal, isn’t she?”

He nodded toward Olivia as he spoke.

First, I wanted to say to him, “Dude, she can HEAR you and she’s not stupid. She knows when people are talking about her.”

I didn’t say that. Instead, I replied to something Olivia had said to me, hoping she hadn’t taken in what he’d said.

Then, I said to my dad, “She’s actually perfectly normal, to me and to all observers. What I know that the casual, uninformed observer doesn’t know is that she’s not just normal, she’s a miracle.”

“Oh,” he replied. He took a deep breath, smiled and said, “I like the way you think.”

How else can I think? I mean, seriously? I think my child is amazing. I think they’re both amazing, even when they’re driving me nuts because they won’t talk to their grandfather or the librarian they see every week.

But honestly, I don’t care if they’re normal. Normal is overrated and like I said above, we should all embrace our weirdness. We should find what makes us unique and celebrate that.

Who ever wanted to be normal anyway?

Thursday, August 28, 2014

Homework Help

Alyssa told me last night that she needed help with her homework. I managed not to sigh and instead nodded. I just hoped it wasn’t math. I am not a fan of math but I don’t want to color her opinion of the subject so I usually try to keep my trap shut when I’m helping her with her math homework.

I was washing dishes when she came in and told me that the homework she needed help with was the story of how she got her name.

Huh. Okay. That’s easy.

She wrote while I spoke.

“A couple of months before I was born (I spoke as if she were speaking so that it was easier for her to write this story from a first person point of view.) my dad was working third shift. He came home on night and suggested the name Alyssa. My mom, who’d been sound asleep when he asked the question, muttered, ‘It’s on my list.’ From that point forward, my dad refused to discuss any names at all, since Alyssa was the name he liked and it was on my mom’s list. So Alyssa it was.

“My middle name is Jean. My mom’s middle name is Gean. She decided to spell my name with a J because my dad’s middle name is James and she thought it was kind of cool to mix their two middle names and spell Jean correctly.”

The next question was, “What was I going to be named if I’d been the opposite gender?”

This one was easy too. I told her, “Ian William.”

She nodded, “Cool. Thanks Mom.”

Damn, I wish all her homework was this easy.

Tom, from the other room, protested at my telling of Alyssa’s naming story. He didn’t remember refusing to discuss any other names once Alyssa had been suggested. I informed him that my telling of the story was correct and suggested that he think really hard about it and get back to me. He reported back about five minutes later that my telling was probably correct.

Yes. Thanks. I know.

Wednesday, August 27, 2014


Do you know how lucky I am? I do.

I watch my younger daughter every single day and I marvel at how lucky we are. We’re lucky that she’s here, she’s alive. Babies born with 5p- syndrome sometimes don’t make it much past birth. This is devastating to me. They sometimes aren’t strong enough to live outside their mother’s body.

But Olivia cooked nine days past her due date, she grew to five whole pounds and added two whole ounces to that and she made it. Sure, she spent eleven days in the NICU but she’s here, she’s gloriously alive.

That alone is reason enough to acknowledge my luck.

But my luck (Olivia’s luck?) didn’t stop there. We brought her home and she grew and while she was delayed in almost every area, she was also growing, learning, showing the world what she could do.

We started therapies for her when she was a year old. Again, we got so, so lucky. We found wonderful, loving therapist who took Olivia from a lump of a baby who would stay right where you put her to a child who sat up at a year old, crawled at seventeen months and walked at twenty-nine months. She started talking six months after she started walking.

All the research said she wouldn’t be able to talk. One of the biggest affected areas of 5p- syndrome is speech. But she talks. There are days when I long for a moment of silence as she chatters on and on about her imaginary friends.

But then I stop longing for her to stop talking and I sit in wonder at how lucky we are. Olivia can TALK to us. She can get up from one part of the room, WALK over to where I am and tell me what is on her mind. She can narrate intricate stories and remember details from months ago (though she always says, “Remember last week when you/we/I…Everything happened last week as far as O is concerned. I will actually be a little sad when she outgrows this.)

We got pretty darned lucky medically too. She’s had a few issues, but nothing major. She had to have tubes in her ears at eight months old but that took care of the constant infections. She’s had random colds/pneumonia/strep but those things are knocked out with antibiotics. She’s had her heart, lungs, kidneys and brain scanned one way or another and every single doctor reports that she’s perfect.

And she is. She’s my perfect girl who gets annoyed by the seams in socks and wants her hair just right.

When I got home last night, she ran to me to express exasperation at some of the girls in the other first grade class, “Do you know what they do!?” she wanted to know.

I told her that I did not know what those girls do but I’d love for her to tell me. She continued, “They bring Barbies from home and play with them at recess!”

She was stunned that this was even a possibility. She went on to say, “The teachers don’t even say anything to them.”

I managed not to laugh at her outrage and instead asked, “Do you want me to send a note to your teacher to ask if you can bring a Barbie to play with at recess?”

She thought about this for several minutes before answering, “No, I just like to swing.”

And that was that. I am so lucky that she can express outrage at the idea that a rule is being broken. We are lucky that she understands the rules and wants to abide by them. We are lucky that she notices her peers these days, watches them and perhaps someday will speak to them, play with them.

But even that feels greedy. We’ve already been so lucky just to know this girl, to love her, to watch her learn and grow and walk and talk. She’s happy and for that I know just how lucky I am.

Tuesday, August 26, 2014


Olivia loves to tell me stories about her imaginary friends.

Last weekend, it was all about Mush Mush. Olivia announced that Mush Mush and Mush Mush’s mom were going to town with us that day. She described Mush Mush’s outfit, her hair style, her choice of accessories.

I think Mush Mush is older than Olivia. At least, most days she is. Olivia likes to declare Mush Mush’s age according to what Mush Mush needs to do that day.

As the morning progresses, Mush Mush’s outfit and hair became fancier and fancier. Finally, Olivia declared that Mush Mush was wearing make-up.

She said, “Mush Mush’s mom lets her wear make-up every day.”

“That’s nice of her mom,” I said, distracted. I’d been listening to Mush Mush stories for going on three hours at that point, including my time in the shower, thank you very much.

“Do you know why Mush Mush’s mom lets her wear make-up?” Olivia asked turning my face to her so that she was sure I was listening.

“Why?” I asked, finally paying attention.

“Because,” she said pointedly, “she wants her to be…HAPPY.”

Ha! Hahahaha. I laughed and laughed at that not-so-subtle dig at my refusal to put make-up on my seven year old. Obviously, I don’t want Olivia to be happy since I won’t let her wear make-up every day.

That Olivia is a clever one. Don’t ever let her quiet, sweet fa├žade fool you.

Monday, August 25, 2014


So far this summer my husband has canned fifty quarts of green beans. I have not snapped a single green bean this year. I told him at the beginning of the summer when he was planting the garden that I was not going to snap beans this year. He planted those evil things anyway and so I let him do it all himself.

And I feel no guilt over this.

But maybe…um, I don’t know how else to explain the fact that I spent hours this past weekend peeling and chopping garlic, onions and tomatoes to help Tom can salsa. What else explains my sudden helpfulness but perhaps a bit of residual guilt?

Well, okay, so even if I didn’t necessarily feel guilty over the bean situation, I did feel like Tom deserved a little help with the salsa. After all, I do intend to partake in the bounty of our salsa in the coming year. And salsa is a big job. There are just so many steps, from picking the vegetables from the garden, washing them, peeling them, boiling them and THEN peeling them (I’m looking at you, tomatoes!) After all the prep, you have to boil your jars and simmer your vegetable mix.

So we worked together. And it was good.

Except that Tom didn’t sleep at all Saturday night. Even though I peeled and chopped the onions, the garlic and the tomatoes, he had to stay awake to actually process the salsa. He ended up canning 35 quarts and seven pints of salsa that night.

I appreciate the work he put into it even though I think he’s sort of a glutton for punishment. He chose to do all this the night before we had to drive an hour and a half to a birthday party for his grandson, who turned two on Saturday.

Don’t worry, I drove us to Huntington so Tom could sleep a bit but, unfortunately for him, he seems to have a problem with my driving, in that he fears I won’t drive fast enough if he isn’t awake and watching the speedometer. Whatever.

And of course, since school started last week, we are now suffering from the hottest temperatures to hit so far this summer. We spent the entire summer enjoying temps in the high seventies and very low eighties. For the past week, we’ve had temps in the low nineties with the humidity hovering around ninety-five percent. Ugh!

I’m glad that Sunday evenings are bath nights because after a day at a party for a toddler, both A and O were sweaty messes. But the birthday boy was adorable and in the end, that’s all that counts, right?

Oh, and the fact that Tom was able to

Friday, August 22, 2014


One of my girls’ favorite movies is Soul Surfer, the story about Bethany Hamilton and how her arm was bitten off by a shark but she went on to become a professional surfer anyway.

I like this movie too, I think that Bethany is an amazing role model for strength, faith and perseverance. I also like how her family is portrayed in the movie, very supportive, loving, protective and yet they let her shine too.

Soon after we watched the movie for the first time, Alyssa was taking a bath and remembered the scene in the movie where Bethany took one of her Barbies and snapped the arm off of her. Bethany’s mom says, “I like her better that way.”

This scene was right after Bethany was fitted for a prosthetic arm only to be told that it was in no way weight bearing. She asked how she was supposed to surf with it. When she was told she couldn’t, she asked that it be taken off and left.

In the bath, Alyssa tried to snap her own Barbie’s arm off but this Barbie was obviously made differently from the one in the movie because there was no snapping. Instead, we brought out the scissors and Alyssa made her own ‘Bethany Barbie.

In the last few months, Olivia has discovered our bin of Barbies and she’s found her favorite, the Bethany Barbie. She loves that Barbie so much.

The other night, she asked me if we could make her Bethany Barbie a new arm. I told her that we’d thrown the arm away when we cut it off years ago. She looked at me like I was stupid and said, “I know, but in the movie, Bethany gets a new arm for a little while.”

Oh, duh! I said, “You mean you want us to make her a prosthetic arm?”

Olivia nodded. “Can we do it with paper and some tape?”

I told her we could try.

We sat down with some paper, a pencil, scissors and some of Tom’s packing tape. I used the Barbie’s right arm as a model for the missing left one and drew out an arm. Then I cut it out and let Olivia help me tape it onto the Barbie.

She was so thrilled with our creation. I asked her how long Bethany Barbie was going to wear the arm. She said, “Not long, I just like looking at it for a minute.”

After all, in the movie, Bethany didn’t wear the prosthetic arm for longer than thirty seconds if that.

I love that her imagination is firing and her creativity is blossoming. Now, if only her fine motor skills would catch up with her brain, I wouldn’t have to try and be crafty when we all know that is not my strong point. (Please don’t ask me what my strong point is. I’m still looking for it.)

Though I have to confess that when she later asked if we could tie her own left arm behind her back and make HER a prosthetic arm, I distracted her with chocolate. I’m not sure even my fine motor skills are up to drawing out a paper arm the size a seven year old would need.

Thursday, August 21, 2014

The Magic of the Snowman

I took Olivia to see our family doctor on Monday. She needed a pneumonia shot since she’d had pneumonia back in April. He mentioned that there are a ‘bazillion types of germs that cause pneumonia’ but if we can stop even one from causing it, it’s worth it.

So she got a mini-physical too. She’s healthy and tough. She barely flinched when the nurse gave her the shot. The nurse was duly impressed with O’s tenacity.

Before the nurse came in with the needle though, the girls and I waited at least fifteen minutes after the doctor left.

The door was left slightly ajar and both girls were driving me crazy with this insane need to lean on me or against me or touch me in some way at all times.

I finally said, “Do you think they forgot us?”

Alyssa shrugged.

Olivia blinked at me. “Maybe they did forget us,” she agreed.

So I suggested we sing. Since the door was open a little, surely someone out there would hear us and be reminded that we were still there.

Alyssa suggested that they’d come in soon and that singing was unnecessary.

But since I’d had the idea, I just couldn’t NOT sing. So it began.

The song they hate me singing the most is Do You Want to Build a Snowman from Disney’s Frozen.

I’d barely gotten to “I never see you anymore, unlock the door…” when the nurse entered the room, smiling and saying, “Is someone singing?”

Alyssa wanted to die right there and Olivia giggled.

I said with a shrug, “They were getting bored. I thought I’d entertain them.”

After the shot was administered and Olivia picked out three Dum Dum suckers (the nurse was seriously impressed with her non-crying from the shot) we headed out of the office and I whispered to Alyssa, “It worked.”

She rolled her eyes at me but couldn’t suppress the smile that my gloating brought out in her.

I may not be the best singer in the world, but my voice does get noticed.