Wednesday, October 29, 2014

I Worry and Worry and Worry

When Alyssa was younger, I worried so much about how having a sister with a rare syndrome would affect her. I worried that Olivia was so needy at times that Alyssa was being pushed aside, her needs neglected because her sister’s needs seemed greater.

I worried that Alyssa would feel as if her sister received preferential treatment, that Alyssa would feel like she’d been pushed aside as her sister was celebrated and treated with tenderness.

I worried that they wouldn’t have a good relationship because what if Olivia couldn’t relate the way Alyssa needed her to. I worried that Olivia’s status as a child with special needs would push Alyssa to the background and make her feel invisible.

I worried that I could never be enough for both of them, that they’d both always need more from me than I could give. I worried that when I was doing something for one of them, the other would feel neglected or less loved.

I worried and worried and worried.

And they just kept growing and doing and learning and becoming these amazing people that I love so, so much.

Olivia is still kind of needy at times, but Alyssa has developed a maturity that allows her to wait until Olivia’s needs (or wants, yikes!) are met and then she voices her needs reasonably and I do my best to meet them.

At eleven years old, Alyssa is very capable of doing a lot of things for herself. She packs her own lunch each day, she showers without help, she folds towels and clears the table. She does her homework with minimal help and she knows what she needs to take to school each day and does it.

But each evening, after I’ve read to Olivia and settled her to sleep, Alyssa will call out, “I miss you.”

And that’s my cue to go sit with her. Sometimes she sits with her feet across my lap, other times she just leans against me. She even likes to lay with her head in my lap sometimes. I love this quiet time with her, time when we’re both a little sleepy but still totally there with each other. We talk about the day, about her classmates/friends, sometimes about what’s happening on whatever we happen to be watching on television. We laugh, we tease, we connect.

I watched my girls together and realize that I should never have worried about their relationship. They love each other so much. They also know exactly how to push each other’s buttons. They’re sisters, they fight, they laugh, they tease, they team up against the parents and I am so grateful for it all.

Will this stop me from finding new things to worry about? Probably not, but it helps to keep the worry in perspective.

Tuesday, October 28, 2014

When the Doctor Listens

Alyssa has had the sniffles for about four days. Olivia told me on Sunday evening that her ear hurt. I noted the date just in case we ended up at the doctor later in the week and I had to report when her symptoms started.

When I got home last night, I found Olivia curled in the recliner, a blanket covering her. I kissed her forehead and found it hot to the touch. Alyssa insisted on taking O’s temperature and reported that it was 101.2.

I went out to find Tom, who was on scaffolding with her brother, putting siding on our detached garage. Yeah.

I told him I was taking O to Urgent Care. He asked why. I explained her fever, her sniffles, her ear pain from the night before.

I told him, “I can either take her today or you can bring her in on Wednesday afternoon when she’s suddenly worse.”

He nodded that taking her to the doctor right then was the right decision.

I packed Olivia and Alyssa up, made a stop at my mom’s to drop Alyssa off (the power was out at our house, she would have been stuck inside a dark house while Tom worked outside) and then O and I made our way to Urgent Care.

After a 45 minute wait in the waiting room and a half hour wait in the examination room, the doctor finally came in to look at her.

She examined O’s ears, listened to her heart and lungs and then let me talk a little bit about O’s history.

She finally said, “If this were a typical child, I’d probably tell you she’s got a virus and send you on your way. But you know her better than anyone and if you think she’s just going to keep getting worse, I’ll write you a prescription for an antibiotic. You can wait a few days to start giving her the medicine to see if she kicks this herself but from your description, that’s not going to happen.”

The clouds parted and the angels sang as the miracle of a medical doctor actually listening to a parent, taking that parent’s knowledge of her child into account and admitting that she might not know that child as well as the parent does sank in.

I was amazed that she was so willing to take Olivia’s history into account instead of just looking at her clear ears, her deep, non-raspy breaths and her steady heartbeat. She acknowledged that we’d been down this road before and my knowledge of my child and her health trumped the symptoms of the moment.

There are doctors out there who care about the people they’re seeing. We met one when Olivia was two and a half and we met another last night. I was so, so grateful to this doctor who looked at my child and saw not just another number to get in and out the door. She saw a little girl who has a mom who knows her very well. She saw a child with a rare syndrome (this doctor had never before seen a person with 5p- syndrome) and acknowledged that perhaps, as the mother of this child, I just might actually know more about her and her syndrome than the doctor herself did, since I live with Olivia and how 5p- affects her.

I gratefully took my child and that prescription home. I didn’t fill it last night. I decided to go ahead and wait.

This morning, Olivia spent the day with her Gram and I took her prescription to the pharmacy. Her fever was lower this morning, but still there. She was full of pep and energy but when she breathed near me, I could smell the sickness in her. We’re starting the antibiotics this evening.

Monday, October 27, 2014

I'm the One Who Fell in the Lake

My grandma turned 89 this past weekend. We drove up to Battle Creek, MI to celebrate with her. We, this time, is not the royal we so much as all of my grandma’s living children and their children and their children’s children.

Yeah, there were a lot of us in my aunt’s house, is what I’m saying.

My aunt’s house is on a lake. Okay, so it’s not ON the lake, but the backdoor opens and if you take about ten steps out onto her deck, you’re almost IN the lake. So yeah, there was water right there, water that little girls were yearning to throw sticks and rocks into.

I took the girls out to ‘look at the lake’ a little while after we arrived. Jaxon, my nephew, wasn’t there yet so the girls played with sticks, tossed fallen leaves into the water, and just enjoyed a very mild October day in southern Michigan.

Before we left that morning, Olivia asked to wear her Elsa dress to the party. I figured, what the heck, she’s already been trick or treating (yes, our town had trick or treating on October 25. Why? I don’t know, they’re stupid, I guess) and so I let her wear it.

I did take extra clothes, though, just in case she wanted to change at some point in the day.

We got there, the dress and hair caused exclamations of joy and delight, the water was appreciated, lunch was eaten, Olivia decided she wanted to change out of her dress and into the warm pants and shirt I’d brought for her and then…Jaxon showed up.

The girls wanted to show him the water. Olivia kept telling Jaxon that Alyssa was going to throw him in the water. Then she’d laugh like a maniac and tell him she was just kidding, that Lyss wasn’t actually going to do that.

Out we went to toss more sticks and rocks into the water.

My aunt’s deck is built up to a sea wall which has a step about three feet down. That step is about two inches above the water. Last summer, when the lake was higher, the step was actually under water by about two or three inches.

Olivia had climbed that sea wall countless times earlier in the day with no trouble at all. She refused help from me whenever I offered it. She was fine with climbing up and down, thank you very much.

I watched her climb up to get another stick and then, I watched her start to climb back down the three foot step. I watched her slip and tumble. I watched her roll across the step and plop right into the water.

I was about six feet away from her when she started slipping. I was stepped down off the sea wall and onto the step when she made her first splash into the water. I was pulling her out of the water before she even had time to stand up in the eighteen inches of water that lapped against the step.

She shivered and said, “My shoes are full of water.”

I put her on the sea wall and then onto the deck and told her, “Baby, your entire body is soaked, not just your shoes!”

But she couldn’t stand those wet shoes on her feet. While my cousin Aaron went to get her a towel, I took her shoes off and poured the water out of them. When the towel arrived, I helped her out of her clothes and into the house, where we dried her off, put her clothes into the washer and put her dress back on.

She declared, “I’m not wearing any underwear!”

I told her that if she didn’t tell anyone, no one would know. She giggled.

We waited for the wash cycle to be done with her clothes and it was time to go home. Her shoes were still soaked so she had to be carried to the car.

Alyssa was not amused by this entire spectacle. She kept saying, “I’m the one who has a bad cold, why is she the one being carried?”

Liv would answer, “Well, I’m the one who fell in the lake.”

By the fifth time this answer came, Lyss was over it.

When asked if falling in the lake was kind of fun, Olivia nodded with a sly grin. If I hadn’t been there to see it happen I might have thought she’d done it on purpose.

When we got home the first thing Olivia told Tom was, “I’m not wearing any underwear because I fell in the lake.”

Alyssa’s eyes might have rolled out of her head if they weren’t stuck in there from all the snot in the poor girl’s sinuses. You’re welcome for that image.

Thursday, October 23, 2014

A Plain Old Boring Shirt

I lay out Olivia’s clothes for the entire week every Sunday afternoon. This is a left over habit from when I was packing for myself and the girls each weekend when we had our nightmare commute.

It just really makes things easier to already have clothes laid out. No arguing, no thought, just grab the next outfit and make it work.

Except, this morning, I started to put a black and white striped shirt on Olivia and she groaned, “Why do I have to wear a plain old boring shirt?”

I thought this was a reasonable question so I said, “I guess you don’t. We can go pick out a different shirt if you want.”

She didn’t actually want. She wanted to sit in front of the space heater while I went and picked out a different shirt. Thank you very much, the end. Except not the end. As I left the bathroom, where she sat in her black pants in front of the space heater, she ordered, “Get me a shirt with a picture on it.”

Aye, aye, Captain!

As bratty as it sounds here, it was actually fairly amusing this morning. She’s just such a girlie girl, so very much all about being pretty and presentable.

I picked another black and white striped shirt, but this one had glittery red letters that spelled out, “Love to Shine.” She was thrilled with this pick and agreed to finish getting dressed.

There is one thing about Olivia that can be counted on and that’s the fact that she believes in the motto, “The fancier the better.”

And I love that about her. She notices everything fancy. I can count on her noticing if I wear earrings because, well, I rarely wear them so when I do, she’s the first to see them and mention how pretty they are. She’d wear lipstick every single day if we let her (we do not.)

Each morning she asks me how I’m doing to do her hair that day, hoping for some sparkle or fanciness to dress up her day.

I hope she never changes this about herself. I hope she always finds joy in glitter and rainbows.

Wednesday, October 22, 2014

Shaking Things Up

When I got home from work yesterday evening Tom informed me that the girls wouldn’t be hungry for dinner at the usual time. He’d waited to feed them snacks after school and so they needed a little time before dinner.

“Okay,” I said. “We’ll just go up now for Liv’s bath instead of waiting until after dinner.”

Olivia was thrilled with this shake up. She loves bath time and is always willing to change up the schedule if it means bath time is now instead of later.

Alyssa joined us in the bathroom, which was unusual. She’s usually either outside with Tom or on her tablet. But this time, she got out her horses and played with them in Olivia’s bathwater while I folded towels.

Olivia loved the extra attention she got from her sister so much she ended up soaking Alyssa and the bath rug. But a little water never hurt anything and fun was had by all. A lot of water? That can do some serious damaged but a soggy rug wasn’t anything to get annoyed over.

After O’s bath, Alyssa figured since she was already wet, she’d shower before dinner.

In the end, dinner was only about a half hour later than usual and it was lovely knowing that bath and shower were out of the way for the evening.

Sometimes, you’ve just got to shake things up.

Monday, October 20, 2014

Every Kid

I ‘shared’ something on Facebook this weekend that was so awesome. It is something I’d like to print out and hand to every single ‘well –well meaning’ adult I encounter with my kids.

Most especially, I’d like to print it out and hand it to the librarian at our local library who is constantly trying to get my girls to talk to her. You know the one? The one who will stoop down and point to her eyes, telling Olivia, “I’m speaking to you. Not your mom.”

This woman is so sure that my kids are spoiled brats that just need to be taught manners. She has no clue what Olivia has overcome just to speak to me. She has no clue that there are doctors who said my child would never speak at all so her ability to talk to those she’s most comfortable around is a miracle. The fact that she doesn’t talk to a woman she sees every few weeks does not indicate brattiness on O’s (or A’s) part but instead a shyness that is difficult to overcome.

Ahem. Sorry, that woman just makes me crazy with frustration. The girls have gotten to the point of pretending to look at CDs while I check out the books if that particular librarian is working the check out desk.

Why do they have to change their behavior because she’s so rude?

Anyway, the post I shared said this:


And I love it. I love that it points out that just because a child doesn’t react the way someone thinks they SHOULD, the child isn’t necessarily being rude or hasn’t been taught manners.

We’re doing the best we can around here. Olivia is absolutely doing the best she can.

This weekend, Alyssa has a friend over. Olivia TALKED TO that friend. She didn’t ever say S’s name but she did speak directly to her, calling her “Lyssie’s friend” whenever she wanted to get S’s attention. Last year O would only speak to A’s friends by talking through either me or Alyssa. Now? She’s talking TO them. This is awesome. It’s a step. We’ll get there, and we’ll do it much faster if nosy librarian’s would mind their own business and just check out my damned books.

Friday, October 17, 2014

Feeling the Love

My mom dropped O’s Halloween dress this week. Big surprise, she wants to be Elsa for Halloween. She and the rest of the under 10 girls (and probably some boys, no judgment here) in the U.S.

The dress turned out beautiful. My mom said it was the hardest thing she’s ever sewn in her life. And my mom has had quite a bit of sewing experience.

Olivia loves it. She loves it so, so much.

When she tried it on she twirled and danced around the room, declaring, “I feel so beautiful! And magical.”

Then she tried to freeze her sister because, well, duh, that’s what Elsa did. Though Elsa’s freezing of Anna was accidental, I quickly reminded Olivia. She giggled and went back to spinning.

Later, after O’s Gram had left and Alyssa peeled herself off the floor to which she’d fallen, bereft that Gram had to leave at all, I helped Olivia out of her beautiful dress and into her pajamas. She settled in to bed, waiting to be tucked in. I leaned in to kiss her and she looked dreamily into my eyes.

She then said, “I feel so loved.”

Awww, my heart might have burst into a million pieces right there.

I told her, “You are very loved. I’m so glad you can feel it.”

“I do,” she nodded. “I know I am loved because I have a Gram who makes me beautiful dresses and a mom who reads to me and a dad who feeds me breakfast every day.”

That girl. She surprises me every single day. She is so loved, adored, cherished. I’m so, so glad she feels it and can articulate those feelings.