More Than We Ever Dreamed

We put up the Christmas tree today. The girls went from the tree to the end tables to the counter tops, decorating every flat surface in the house.

As I was draping lights on the tree, Olivia exclaimed over and over, "It's going to be so gorgeous."

And in the end, it is.

This was the first year she was truly able to help hang ornaments from the tree branches. She loved it. She oohed and ahhhed over every single bulb that went on that tree.

Both girls stood anxiously at the door to the garage, waiting for me to bring in each new box filled with Christmas goodness.

And even though we were faced with not one but two dead mice at the bottoms of a couple of boxes of decorations, we plowed through. I lit candles to help cover the smell of death and instead, we inhaled artificial pine and pepperment scents as we continued to turn our home into a Christmas wonderland.

In the end, Olivia gasped, "It's better than we even dreamed."

Alyssa, on the other hand, declared, "We have the smallest Christmas tree in the whole world." This came after visiting Gram's house, where a very large, very bright Christmas tree greeted us from her front window.

Ahhh, Lyssie...someday, you too, can have a huge Christmas tree. Until then? Our small little dream will have to do.

Thankful

Today is the day that we Americans give thanks for our blessings. I have so many blessings that I can't possibly list them all.

I am thankful for little girls who announce, "I'm a pretty as a princess." And then, five minutes later are outside playing in the mud.

I am thankful for a husband who toasts me an English muffin each morning just before I walk out the door and then, on one of my few days off, takes care of the above little girls while I sleep for an extra hour.

I am thankful for my mother, who is the best grammy and mother anyone could ask for. She retired when O was a year old so that the therapists didn't have to go to a daycare to work with O.

I am thankful for friends I've known forever who still manage to love me anyway and for new friends who have found their way into our lives.

I am thankful for our home, the one I worked so hard to buy last year. We are so incredibly lucky to be here, in this place at this time.

I am thankful for teachers who are understanding and who have my girls' best interests at heart.

Our lives are so full, so blessed. On this day I want to stop for a minute and think about everything I've been given, everything I've achieved, everything I'm not even sure I deserve. I am just so thankful for this life.

My Inner Meanie

I could learn a thing or two from those very kind young women I talked about in the last post. I am not nearly as kind, as nice, as generous as they are.

In fact, I often have very mean thoughts.

For example, I recently read a post on Facebook that was basically a list of things this person had to do before hosting a group of people for Thanksgiving. After mentioning she needed to clean her house, this person went on to say, “But since I just cleaned top to bottom, there’s not much left to do.”

And I instantly thought, “Yeah, you don’t work outside the home, of course you just cleaned top to bottom.”

See, that’s not very nice. I do know that mothers who are home with their children are often very, very busy and that they do, indeed, work, even if they’re not paid for their work.

But the post came across (to my mean brain) as so self-congratulatory that I couldn’t help but sneer a little.

What makes me so mean? Is it envy? Probably a little. But I think that even if I were a stay-at-home mom too, I’d still be a little snarky about a post like that. I’m all for using Facebook as a means to keep people updated on happenings in our lives. That’s what it’s for, right? Heck, I’ve been known to be all braggy about something the girls might have done. But…see, the meanness is coming out again. I have a hard time with the whole, “I’m so good at this and my life is so wonderful and blah blah blah.”

But just because I don’t use social media for that (my blog is obviously proof that I’m not all sunshine and roses even though there are plenty of wonderful things about which I post) it doesn’t mean others shouldn’t. It’s their space.

And yet I’m so mean about it in my own head. Now, I’ll give myself a little credit. I don’t comment on posts like that telling the poster what a jerk I think they are. That would be more than mean, it would be rude. But I also don’t bother ‘liking’ those kinds of posts. I wouldn’t want to encourage the very things that make me the meanest.

Tomorrow I promise to be grateful, to ruminate on all for which I’m thankful. I just needed to get the mean out of my system.

The Nicest People

While it’s evident from my last post that I’d give up dance marathons if it would give O back the missing part of her chromosome, since that’s not going to happen, I’m going to gush about some of the most amazing college students I’ve ever met.

And see, I WENT to college, so I’ve met quite a few college students in my day. Heck, some of the college students I met back when I was a college student are still my very best friends.

But these students? The ones who put their hearts and souls into raising money for Riley Hospital for Children and putting on the best party a five year old and an eight year old have ever been invited to, those college students are amazing.

Two in particular have made a lasting impression on A and O. Ally at Indiana University and Hayli at Purdue University.

These two young women made it their goal during the weekends we were on their campuses to ensure that Alyssa and Olivia had fun. They were amazing. They put aside their very busy schedules and spend every minute we were at their respective dance marathons with us, making sure we were fed, were entertained, were first in line at the bathroom.

Seriously, it is amazing to me that they are so selfless.

Now, I know that there are a lot of amazing 18 -22 year olds out there but there are also a lot of selfish ones. We just got really, really lucky to meet both Ally and Hayli.

Not only did they get Olivia gift bags, they made sure Alyssa was included. That warms my heart more than you can know. To make sure the sibling of the Riley kid feels special too goes above and beyond. They didn’t have to be told that sometimes it’s hard to be the ‘typical’ sibling of a ‘special’ child. That sometimes, the typical kids feel left out when everyone is gushing over the special one. They seemed to know instinctively that all eight year olds want to be noticed too and they did that. They did more than notice Alyssa, they pulled her in and made her special too.

I will be forever grateful to these two young women who danced with Olivia, found other students to do cartwheels with Alyssa, who brought us water and found us pancakes when O was so hungry she was reverting to sucking her thumb.

All of the students who do the dance marathons are wonderful. I watch the others play with the other Riley kids and I’m warmed by the generosity of the human heart.

The ever lovely Julie likes to say that you can always tell the families who are new to dance marathons because they’re the ones who still watch their own kids. The families who have been there a few times know that the college students are there to entertain the kids.

And it’s true. Well, unless you’ve got kids like mine, who want to be able to see Mom at all times. But most kids are happy to let their parents go off somewhere because these other, younger people are there to take care of them.

Ally and Hayli do for us what Riley hospital itself does. They care for the entire family, not just the patient.

Alyssa asked me last night if Ally was going to be ‘our girl’ again next year when we go back to Bloomington. I told her that Ally is graduating this year and heading off to New York.

Alyssa was a little sad but perked up when I reminded her that with Ally starting her new job and new life, it opened the door for someone new to get to know her (Alyssa) and Olivia and how great is it that we get to make another new friend?

She did ask if Hayli would be ‘our girl’ at Purdue and I said maybe so. Hayli is a freshman this year, which gives us a chance to see her for another three years. If she wants.

I’m hoping all this exposure to the love, the generosity of others inspires my girls to give back as much as they’ve been given. Of course, like Julie, I also want them to actually attend class when they’re in college. Dance marathons take a lot out of the students. I just hope they give back to them too.

(Yes, look at me, assuming O will someday be in college. It is not outside the realm of possible. I’m just saying.)

I Lied

After I shared Olivia’s story of becoming a Riley kid at the dance marathon this weekend, one of the college students who puts their heart and soul into planning and executing the amazing events that are the dance marathons came up to me and thanked me for sharing our story.

I told him I loved doing it. I nodded at Olivia, who was spinning and dancing around the room in her Barbie Princess Charm School dress and thanked him for all that he does and how he and his fellow planners manage to make the weekend about kids like Olivia.

He told me that it was Olivia and all the other Riley kids who inspire him and the work he does.

I asked him what his major is and it is pre-med. I told him I wasn’t surprised.

He went on to say that he wants to go into research so he can continue to help people.

I pointed out that when your child is diagnosed with a genetic disorder as Olivia was, there’s no cure but that having an answer is sometimes all you need.

Then I lied to him. I said, “I wouldn’t change her anyway.”

That’s a lie. I’ve written before that if I could give O the part of her chromosome that is missing I would. In a heartbeat, I’d give it back to her.

See, we were all caught up in the love that dance marathons inspire. We were being all philosophical and dreamy and isn’t life grand and how lucky are we to have this opportunity to change lives?

But…in the everyday scheme of things? I’d give it back to her. I’d take away the challenges she faces. I’d take away the low muscle tone and her soft voice. I’d give her a strong, loud voice and muscles that do what she wants them to do without so much effort.
I do not think that the missing part of O’s fifth chromosome makes her who she is. I don’t think it would change the essence of who she is if she had all of her chromosomes intact.

Olivia is the girliest girly girl who ever twirled. And she’d be that same twirly girly girl even if she had all of that fifth chromosome. She’d probably just be more twirly, more steady on her feet, louder when she sings Taylor Swift songs.

She might not be a Riley kid and we might not get to go to all these amazing events where she and her sister are treated like celebrities but you know what? I’d trade those things in an instant if I could give O back her complete independence, her fullest potential.

I know that her potential is already pretty good but she has already faced a few challenges and will face more in her life. I’d take those away. I’d ‘fix’ her, if I could. I just would.

And Away We Go

A birthday party, lots of gifts, family and friends combined with a 163 mile round trip to Purdue University for another dance marathon made in a twenty-four hour period all work toward making for a very busy, very fun, very tiring weekend.

We had the annual cousins' birthday party this weekend. Even though Olivia won't be officially five until next Sunday, we celebrated her birth along with Jaxon's and Sabella's. This was their 4, 5, 6 year. They had great fun.

My mom made a Tow Mater cake for Jaxon. He was entralled by her culinary genius.

Olivia chose a rainbow theme for her birthday, so mini cupcakes arranged in the shape of a rainbow and cloud served her well.

The party started 3:00 on Saturday and by 5:15, the girls and I were packed in the car, heading south and west to attend Purdue University's dance marathon. We were about three hours late but it was worth drive.

We didn't have to tell O's Riley story until this morning, so we spend an hour at the dance and then headed to the hotel for about six hours of sleep.

As we were packing up to leave the party yesterday, Alyssa asked why we had to go. She bemoaned the fact that we'd been at IU's dance marathon just two weeks ago and she was tired of driving all over the state.

I told her we'd made the commitment and that I knew once we got there, she'd have as much fun as she always does. She tried to convince Tom to let her stay home with him but he told her he knew if she stayed with him, ten minutes after I left, she'd be declaring she wanted to be with me.

So off she went, not completely against her will but a bit petulantly.

I assured her we don't have another dance marathon until January, enough time for her to miss the adventure, the attention, the noise and the fun of it all.

Until then, though, we're ready for a few weekends of not being on the road.

Waffles

On Wednesday morning Olivia requested Waffles for breakfast. We didn’t have any frozen waffles and I didn’t have time to drag out the waffle iron, mix the ingredients and cook up a waffle for her so Rice Krispies it was.

But I made sure I went to the store that day and bought two different kinds of Eggo waffles, buttermilk and blueberry. If my girl wants waffles for breakfast I want to provide them for her. (Without all the work involved in using an actual waffle iron, thank you very much.)

She’s had blueberry waffles for breakfast before school the last two mornings. I blame my mother for O’s penchant for asking for such things.

My mom loves that Olivia eats a wide variety of foods. Okay, I do too, but not at 7:05 in the morning when she’s asking for something that not only takes a lot of preparation but is also messy in the eating.

Olivia will often request oatmeal for breakfast or lunch while at my mom’s house. She has never asked for oatmeal at our house. She knows I have no idea how to make oatmeal. She’s not even five yet and she’s figured us all out. But in my defense, I know how to make her favorite noodles and my mom has no clue they even exist. But hey, it’s not a contest, right?

Alyssa, on the other hand, will cheerfully eat Pop Tarts, Rice Krispies or Cheerios every day for months on end. Scramble her an egg and she thinks the world is ending because you might actually expect her to eat it. Give her toast with the crust still on it and you’re the meanest person who ever lived. And waffles are just a mystery to her. She can’t imagine why anyone would want to eat one.

My girls are so different that sometimes it surprises me they share DNA. But differences and similarities aside, they're awesome, each in her own way.