And Then She Slept

Last night was rough. Olivia has been steadily pushing back the time she falls to sleep and last night was the worst yet.

I hate taking her to bed while she’s still awake because it means more work for me. I just want her to fall asleep easily on my lap so I can carry her to bed and be done with the bedtime routine and go to sleep myself.

But 9:00pm rolled around and there she was, wide awake.

Ugh!

I couldn’t wait any longer. Alyssa needed to be in bed too and so I heaved a giant sigh, got to my feet and informed Olivia quite gruffly, “Tomorrow night, you WILL fall asleep before nine o’clock.”

And…she burst into tears.

Damn. I hate it when I make her cry. I hate myself so much when this happens.

And yet I was in such a spiral of frustration, tiredness, annoyance that I grabbed her blanket, picked her up and carried her to bed. She cried against my chest and I…didn’t do much more than carry her. I wasn’t rough but I wasn’t nearly as comforting as I could have been.

I deposited her on the bed, turned on the fan, and made sure the alarms were set. Olivia sat on the bed, sniffling.

I informed her, “I am going to put on my pajamas.”

To her credit, she didn’t follow me to the bathroom but she did get out of bed and wait in the darkened room.

When I came out of the bathroom, she scampered back to the bed, sniffling just a little.

I went to Alyssa’s side of the bed first, hugged her and apologized for being so grouchy.

She kissed me and told me it was okay.

But it wasn’t. It wasn’t okay to be mean and stompy and grouchy.

I went to O’s side of the bed, tucked her in, kissed her tear-stained cheeks and told her how sorry I was for making her cry.

She just looked at me in the dark, waiting for something I wasn’t sure I could give at that moment.

I brushed her hair back from her face. I kissed her again and promised her that I’d try to do better in the future. I’d try not to be so grouchy and I never wanted to make her cry. I rubbed her arm the way she likes me to do so. I kissed her again and told her how much I love her.

I told both girls that I am so sorry that sometimes my actions don’t reflect my words and that I’d try harder to always be more gentle, more loving, more like the mommy they both deserve.

Olivia finally fell asleep and I crept to my own bed where I laid in a shroud of self-loathing and guilt. It’s a vicious cycle. I get tired, I want them to go to sleep so I can go to sleep, the more I push for them to sleep, the more anxious they get and can’t sleep and the more frustrated I get.

It’s ugly and I hate that it happens. But I also try to learn from it and do better tomorrow and tomorrow and tomorrow.

And you know what? After that rough end to the night? Olivia slept the entire night, not waking once, not coming to my bed. She woke up looking more rested than she has in a few weeks. Go figure.

A Rose By Any Other Name...

Alyssa and Olivia love to ask me questions like, “What was my name going to be if I’d been a boy?” or “What would you have named me if you hadn’t named me Alyssa/Olivia.”

The second of the two came up one day last weekend. Alyssa wanted to know what other names I’d liked before she was born, before Alyssa became the name we chose to give her.

I told her that I’d pushed hard for the name Elizabeth. I explained that I really love the name and I thought it was a lovely tribute to one of my best friends in college.

Alyssa said she likes Elizabeth too. I laughed and said, “Yeah, you would have made a great Lizzy.”

Then I told Alyssa that a few months after she was born, I told Tom that we should have given her the middle name Beth then she would have been Alyssa Beth. Tom wasn’t amused. He was never keen on the name Elizabeth for our daughter and didn’t really like it pointed out that Alyssa was actually pretty similar in the end.

Olivia wanted in on the conversation.

I told her that I tried hard to get her dad to agree to the name Camilla. She’d have probably been called Cami. I said that her middle name would have had to change if he’d gone along with Camilla, though, because Camilla Kate wouldn’t have quite worked for me.

In the end, Tom didn’t like the way Camilla went with our last name (starts with an L) and so it was left behind and we obviously settled on Olivia, popularity not a problem for us.

At that point in the conversation Alyssa suggested I call them Elizabeth and Camilla for the day. Olivia was skeptical of this idea but went along because Alyssa can do no wrong in her eyes (unless Alyssa is trying to take something away from Olivia and then all bets are off.)

I like that they ask these questions. I like that I get to think back on those few quick months when they were growing, a dream I was having, a wish come true. When I imagined who they might be and what they might become.

Inquisition

Last weekend the girls and I were heading home from our Saturday regular stops of library, lunch, groceries. I decided to avoid town traffic and went a way we don’ t usually go.

Along this route, I pointed to a church and said, “I threw up in that parking lot when Livie was in my tummy.”

Alyssa laughed and asked if I threw up in any parking lots when I was pregnant with her. I told her I did but not as many in Angola as I did in Huntington.

Olivia was thoughtful for a few minutes and then asked, “When I was in your tummy, how did the nurses get me out?”

*Tangent: I sort of love that she gives the nurses credit for getting her out instead of the doctor. Ha! End tangent.*

I heard Alyssa snort from her seat and looked in the rearview mirror at Olivia. She was watching me closely, very obviously expecting an answer.

I took a deep breath and told her, simply, that sometimes a mommy’s body makes room for the baby to come out and the nurses catch the baby as she comes out. And other times, the nurse or doctor has to make a cut in the mommy’s tummy to get the baby out.

This satisfied her for a minute.

Then she asked, “How did I even get in your tummy!?!”

Ohh, there it is.

This time Alyssa didn’t snort, she snickered. She’s read a couple of books I picked up at the library about this sort of thing so I could tell she was just waiting to hear how I explained conception to her six year old sister.

I started, “Well, a part of Daddy met with a part of me and it made you. Then you grew inside me until you were ready to be born.”

This wasn’t enough. Olivia asked again, “But how did those parts get inside you?”

Yikes! She’s a tough one.

I explained, “The part of me was already inside me. The part of Daddy…well, we kissed a lot.”

Now…cop out? Maybe but it satisfied her for the moment. She’s six. I’m not sure she needs me to draw her a diagram and explain the intricacies of sexual reproduction.

Alyssa gave me a nod, as if in approval of my answer. Olivia saw something shiny on the floor and my reprieve was set.

Doing Our Best

We celebrated Mother's Day yesterday.

Tom and the girls was kind enough to let me sleep in before I got up to make breakfast for us all. Which…what a typical Sunday.

Then I folded laundry while Alyssa watched the original Plant of the Apes. She’s a cool kid, that one. During the scene in which Charlton Heston’s nude butt is shown she asked quite seriously, “Who wants to see that? Why?”

Like I said, she’s one awesome kid.

Then we headed to my mom’s, where she’d made brunch for everyone. Yes, the women in our family don’t quite let everyone do for them even on Mother’s Day. Why would we?

I let A and O pick out gifts for my mom and then we also framed their spring pictures. I put the pictures in the gift bags with the gifts they’d picked out so my mom would know which was from whom. Clever, huh?

As the visit rolled to a close, my mom thanked me and my brothers for coming over. She said that the best gift any of us gave her was just being there, visiting, spending time with her.

I hugged my mom and thanked her for being amazing. Because she is. She’s amazing. She was a single working mother most of my life. She worked so hard and yet we all knew how much she loved us.

I told her that anything I do right as I navigate this mommy journey is because I learned from her. Anything I do wrong is all on me. She laughed, hugged me again and told me that she thinks I’m darned good at this mom thing.

Coming from her, I’m absolutely taking it as a compliment. She always let me and my brothers know, through words and through actions, that we were the most important things in her world. She’s expanded that to include my girls and my nephew. Those kids are so at home at her house that they don’t even think twice about asking for food, taking out toys to play with, changing the channel on the television.

We got the luck of the draw when we got her. I only pray that I show and tell my girls how important they are to me. In the end, I would like them to know that I always wanted to do my best, even when I didn’t actually manage.

Too Big

I was informed a couple of weeks ago by a co-worker (female) that no one could tell that I’d lost 40 pounds because I wear my clothes so big and baggy.

I shrugged and figured, who cares? I mean, I know I’ve lost. I can tell. I feel so much better in my (baggy) clothes, that I don’t really care if she could tell I’ve lost.

But then a couple of days later, one of my aunts told me that I looked great, but then she added that I’d look even better in clothes that fit.

I told her I was wearing clothes that were two sizes smaller than the ones I’d worn just four months ago.

She sighed and said, “Honey, yes, but those clothes were too big too and you’ve just moved to smaller clothes that are too big.”

Which…whatever. I am not willing to cram my still largish body into tight clothes that pinch and bind and stretch over my still pudgy stomach.

No thank you.

This morning, though, I was getting dressed and even I was able to see (by looking in the mirror) that the shirt I’d put on was too big.

That’s a big deal. I’ve noticed my pants slowly getting too big and that’s why I’ve steadily moved down two sizes (sometimes three depending the pants/brand/time of day.) But my shirts have been pretty consistent. Yes, they’re a little looser but nothing so baggy that it looks terrible (to me. Ask my aunt or my coworker and they’d probably have a different opinion.)

That shirt this morning was definitely too big. I’m learning, slowly with many setbacks, that I really do look better in clothes that fit. They don’t have to be skin tight, but when they fit, they show how much smaller I really am. I think I might have to actually embrace the idea of wearing slightly tighter clothes these days. Tight? No. Fit? Sure, maybe. It could happen.

Take Her Home and Love Her

Did you know that most doctors, when they think about Cri du Chat syndrome, think that those affected will never speak, will never walk, will probably never be responsive and most often than not, will die at an early age?

We got lucky. The doctor who finally diagnosed Olivia didn’t tell us any of those things. In fact, she told us not to research the syndrome because the research is often more than 40 years old and is based on patients who had been institutionalized from infancy.

She pointed out that everyone does better at home, surrounded by family members who love them, who want the very best for them. She said that even a typical child, if she is put in a crib and never held, never spoken to, never sung to, never taught will obviously not do as well as a child who is taken home, held in loving arms, sung to, talked to, taught.

That’s what everyone needs. Human interaction, touch, gentleness, nurturing.

Olivia’s developmental pediatrician specializes in children with Down syndrome because there are very few (any?) doctors who specialize in 5p- syndrome in the world. We feel lucky to have this doctor. She understands that every syndrome has ranges. She understands and communicates with us the importance of not setting limits, not putting a cap on all that Olivia might be able to do.

We only have to see this doctor every two years because we’re so incredibly lucky that Olivia enjoys excellent health. But I will admit to being happy when our two year appointment is due because I get to go show Olivia off to this doctor who might not have saved Olivia’s life but did save my sanity.

The best advice this doctor gave me and my husband was to take our daughter home and continue to expect as much out of her as we expect out of her older, typical sister. She said that Olivia will need more time to do the things that Alyssa does but we should never believe that she won’t do those things.

She told us to let Olivia show us what she could do, let her be the one to set the limits if limits need to be set at all.

And she told us that people with Cri du Chat can live long, healthy lives. There isn’t anything in the research to show that Olivia shouldn’t have a normal lifespan. That missing part of her fifth chromosome isn’t something that takes twenty years off her life. She’s healthy, she’s strong, we provide her with activities that build and help maintain her muscles as much as her low tone will allow.

We took our daughter home the day we got her diagnosis and we loved her. We continued to meet with therapists who got her up and walking just two months after received the diagnosis. She talked just six months after she started walking. She ran a year later, chasing her sister and her cousin, Jaxon. Those two people, Alyssa and Jaxon have been instrumental in Olivia’s amazing confidence. They treat her like the little sister, the bigger cousin that she is. They don’t count chromosomes, they don’t care that she’s a little weaker than they are, they don’t care she might trip a little more often than they do. They love her, they laugh with her (and yes, at her sometimes). They wrestle with her without worrying they might hurt her.

They’ve toughened her up even as I sit on the sidelines and bit my tongue to keep from telling them to be careful with her. She’s just Olivia to them. She doesn’t have special needs, she’s not missing a single thing they care about.

For these things, I am eternally grateful.

Going Green

We are basking in the spring that has sprung around here. When I get to my mom’s each afternoon to pick up the girls they are sweaty and flushed from running around outside for the hour between when the bus drops them off and I get there to pick them up.

Tom feels like he’s mowed the lawn seventy two times in the past three weeks, that’s how fast our grass (read: dandelions) are growing these days.

He’s already put our garden in, with plans to cover it this coming weekend to protect against potential frost.

We planted my mother’s day weeping cherry tree in the front yard yesterday.

The girls and I made our first trip to the park last weekend, after the girls has spent most of the day in our backyard as Tom worked in the garden and I hung load after load of sheets and blankets on the line to dry.

Yes, we’re loving the green that has sprouted around here. My lilacs are on the verge of blooming, the apple trees will do the same in another week or so, we hope.

I love watching the girls bask in the beauty of a soft spring evening. Olivia runs up the slide (yes, up the slide. I let her do it at home but not at the park when there are other kids there trying to go down the slide) and I am amazed at how much she can do.

I watched Alyssa play with her toy dogs and horses last weekend and I’m so thrilled that in so many ways she still so little. I want her to hold tight to her childhood and keep puberty at pay just a little longer.

I’m hoping all this green and sunshine will wash away the latent grouchiness I find myself wallowing in. What is my problem? Sleepiness (thanks every so much, Liv)? Busyness? I have a bridal shower coming up in a few weeks that I’m hosting so I’m trying to clean my house, plan a menu, gather door prizes, etc. I don’t know. I do know that I’m trying hard to let it go, to see the beauty of the spring and the coming summer. It’s the very least I can do for myself and my family.