Monday, June 24, 2013

sisterly love...

Not only did Ray and I welcome a second child two years ago, but our older daughter, Lola, learned quickly what it meant to be a big sister.

She loved Amelia from the very start.

She always was worried about her, whether she had a dirty diaper, whether she needed a bottle, whether she needed to be hugged and kissed and cuddled.

Not much has changed. Lola continues to be her sister's biggest cheerleader and her protector, always checking to make sure her fragile little knees are covered in case she falls outside on the concrete, checking to be sure her shoes are still Velcro-ed, checking to be sure the gate is up at the staircase.

When it came to planning for Millie's second birthday, Lola was involved in most everything, other than actually picking out the gifts (mainly because I ordered Lola's at the same time). She helped me pick out the wrapping paper and later, she helped me wrap the gifts, too (though I still didn't let her see what we got).

Midway through the wrapping session, though, she looked at me and asked where her gift was. I explained that it was Millie's birthday; Lola will have her birthday soon enough.

But that's not what she meant, she insisted. Where is the gift from Lola, to give to Millie?

Darn. Why didn't I think of that? I stammered something about the gifts really being from all of us, avoiding the very obvious fact that Lola didn't even know what the gifts were so she obviously had had no say in what we bought.

But my near-5-year-old had her own plans and rejected my lame explanation.

"I'm going to give 'Milia a present from me," she announced. She thought hard. "I'll give her one of my own toys."

And off she went, not-so-secretly retreating to her bedroom to wrap a plush My Little Pony that, up until Saturday, she still slept with at night.

She even offered Millie a sneek-peek of what was to come...

I'll do a whole birthday post tomorrow perhaps, but when we did open gifts the next evening, once Ray was home, the gifts from us parents were a complete disappointment - Millie did not like them - but it was Lola's gift that saved the day.

We didn't capture a smile on camera, but that night, when I put her to bed and offered her favorite Elmo plush toy, she quickly rejected it, reaching, instead, for the My Little Pony from Lola.

And she has continued to sleep with it firmly in hand ever since.

Sisterly love.

Love it.

Love them.

- Bethany :)

Thursday, June 20, 2013

Dear Amelia...

 (Photos courtesy Alison Lea Photography, a very dear friend and incredibly gifted artist. You can find her here or on Facebook.)

Dear Amelia,

A week ago, Karen asked me what it means when you cross your arms over your chest.

You were home with Karen that day, mostly all alone at the time, the older kids all playing outside in the sunshine. She said you were walking across the living room when you paused, crossed your arms on your chest, and looked at her expectantly.

She didn't know what you wanted.

And neither did I.

The next night, I was rushing through your bedtime routine. A single mom for the week (Daddy was out of town for work), I was running behind. Your sister was hungry. The dog needed to go out. The laundry had been sitting in the washing machine too long and, as luck would have it, the basement got more than a wee bit damp the day before so I had some downstairs cleaning to do as well.

I'd planned to quickly put you down and start my to-do list.

So I turned off the lights, turned on the noise machine and gently laid you in your crib.

As I turned to leave you smiled at me.

And then, very pointedly, crossed your arms.

Patiently waiting.

A few beats later, I still wasn't sure what you wanted.

And then it dawned on me.

I quietly started singing "Twinkle Twinkle Little Star" and you grinned, pulling your "cuddles" up to your chin and listening, watching my face and almost imperceptibly moving your fingers along with the words, tiny mirror images of the hand signals we do during the daytime.

I finished singing and you instantly signed for "more."

Twice through, that's our deal.

Every night.

You constantly teach me, remind me, to slow down.

To stop racing.

To just be.

To enjoy.


Here we are, days away from your second birthday. You're now walking, toddling around in Lola's wake, chasing after Mustang or Lucy, and out to find some mischief.

You got your first pair of skinned knees this past weekend, thanks to playtime in the back yard. You fell a couple of times trying to walk around the driveway. Mommy tried to get you to hold her hand but you insisted on doing it yourself, which is great.

Even when you fell down, you whimpered for a second or two, but then you were right back up, trying again.

You are so determined.

But not in an ultra-serious way.

Really, you're never all that serious. You're our Silly Millie, always wanting to share a giggle or belly laugh with someone. You play peek-a-boo with the dog when you think no one is looking. You like to pull his tail just to watch him spin in circles, laughing as he tries - always unsuccessfully - to catch it himself.

You purposely push people's buttons just to see them react. You're not mean; there isn't a mean bone in your body. You're just goofy, the jokester of the family. You poke Lola in the arm, just to watch her squirm. You jump on Daddy when he's not watching, just to catch him off guard. You throw remote controls, toys and socks behind the couch just because you can.

Before you were born, Daddy, Mommy and Lola were sitting around the dinner table as Daddy and Mommy were talking about maybe having a new baby. Daddy said he knew it was time because he felt like someone was missing.

That someone was you.

I thought of that again the other day, all of us gathered around the dinner table for pizza. Lola was picking off all the "ickies" (the veggies, of course) while you were taking them and not-so-discreetly throwing them on the floor. I'm not sure if you were trying to feed the puppy or just make a mess.

I caught your eye, and you knew you'd been caught.

You just held up your outstretched hands in a "What did I do?" shrug of sorts.

Then you grinned.

And we shared a laugh.

Soon, Daddy and Lola were laughing too.

That's what you do, Millie. You bring all of us together.

You were our missing piece. And we're so glad to now be whole.

So happy (early) birthday, Princess.

Mommy, Daddy and Lola all love you so very, very, very much.

Our little Angel girl.

Mommy :)

Tuesday, June 18, 2013

Father's Day

 Such a good dad...

We had a nice weekend, just hanging out at home, playing outside, getting some sunshine, doing some yard work.

Life slows down on the weekends yet time somehow seems to go so much faster...

Ray was gone, again, long before we all woke up Monday morning.

Surprisingly, though, he was back Monday evening. And now he gets to stay home for about 24 hours or so.

Bonus family time.

I love surprises.
- Bethany :)

Friday, June 14, 2013

officially a toddler?

So it's been two weeks since Millie started doing this.

How is she doing today?

Great! Especially since you have to consider that she got new shoe inserts/braces about a week afterward, so she's been adjusting to those as well.

She is not 100 percent walking now. But she's getting so much more confident in her abilities.

She now is basically walking as long as she starts upright; she's yet to figure out how to get from the floor to standing, unless she has something to pull on.

For isntance, if she's near a couch, she will pull herself to standing and walk across the room.

But if she falls in the middle of the room, she'll just crawl or knee-walk to another piece of furniture, or a wall, so she can stand and walk some more.

She's changing directions and even getting a little speed into her walking.

We even play a modified game of chase, where she walks from one side of the room, where I'm at, to the other, where Lola is at. But then, just as Millie is about to reach her, Lola runs to another side just as she's about to reach her. So then Millie has to go get her.

They both laugh and laugh and laugh.

It's great to see.

We're so very proud of her.

 I'm standing directly in front of the swing, as Lola is swinging, so she's telling me to 
"watch out" at the end of the video so I don't get kicked in the rear (though some days I might deserve it I suppose).


We're fortunate to have such fun kiddos.

They really are sweethearts.

Happy weekend.
- Bethany :)

Tuesday, June 11, 2013


This is going to be a tough summer as Ray will be out of town six days a week (Mondays through Saturdays) for about two months or so.

So this past weekend, we had what will probably be our last Saturday all together for a while.

So we made the most of it, playing outside and enjoying the sunshine.

Saturday marked Lola's first time in a bounce house, you know those inflatable air things? Well, this was a tunnel, complete with a little climbing wall and slide, put in place at our local waterfront in tandem with a fishing contest, and Lola for the first time ever actually went inside! OK, I had to go with her twice before she had the guts to go alone, but, hey, I'll take it!

Having conquered the tunnel, she was game to go - on her own! - in a bounce house maze. She loved it. She did it about ten times and even helped a younger girl, maybe 2?, who was a wee bit afraid to go inside on her own. Lola the helper!

The afternoon was spent in our own backyard, as Ray had to mow and the kids had to burn off some energy.

I was on a mission to find a toy that would get the two girls playing together outside and keep Millie from wanting to climb up and down the porch steps (above the concrete driveway) repeatedly. 

Anyhow, I broke out the water table toy for the first time of the season and the girls loved it.

 Mustang loved it too.  * smile *

Lola planting her flowers in her garden playhouse. It's a rite of spring for us. She plants her flowers, I plant mine (in more traditional pots).

It was a super fun day. Good times.


On another topic, I've run into a new problem with Miss Millie, who has entered a very opinionated and independent phase.

She is refusing to take her medication.

Since we believe that medication is keeping her from seizing, that's not good.

After a few days of fighting with her, basically forcing her to take them, I finally realized the problem: Lola doesn't take them.

Millie is now insisting that she do everything the same as her big sister. Eat the same foods. Play with the same toys. Go to the same places (you should see Millie throw a fit when it's only her that the therapists want to bring back to the playroom at the hospital and not Lola too...).

The other night I tried an experiment. Wanting to avoid a battle with Millie, I asked Lola to take a few syringe-fulls of plain ol' water. She agreed, thinking it was kind of fun and different.

After two squirts for Lola, Millie began whining, whimpering and reaching for the syringe and signing for "mine."

Yep, she took her medications with a big ol' smile that night.

And the next morning, and the next evening...

Small victories, people, small victories...

Now if only I could figure out how to get Lola to actually go to sleep at bedtime instead of playing quietly in her bedroom until 11 p.m. Really, she's so quiet you'd think she is sleeping but then you find freshly colored pictures scattered throughout her bedroom floor the next morning...

- Bethany :)

Thursday, June 6, 2013

Millie updates

Lola asked to paint a week or so ago, and of course I let her; the girl loves to paint.

We even had a little more fun with it, letting her finger-paint and make a little bit of a big mess.

Toward the end of the session, I got the idea that we could do a family "portrait" with all of our hand prints.

Lola went first. Then me, and then Ray.

But Millie was still napping, so we had to wait her out.

By the time she woke up, the skies had cleared and Lola desperately wanted to play outside.

So we went outside.

Much later, when it was time for bed, I walked by our work, the paint now dry and the paper partially covered with our three hand prints.

I felt sad that I forgot to get Amelia's print on there as well.

So I very quickly painted Millie's palm and added it to our family art project.

She loved it. She stayed absolutely still as I painted her hand - bright red - and she grinned as she pulled it away from the paper, leaving her mark on the page.

Afterward, she kept pointing to her palm and singing enthusiastically for "more" - but it was too long past bedtime already. So I put her down for the night, feeling mighty guilty that I didn't let her really explore the paints at all.

But I pledged to make it up to her.

On Sunday morning, as Ray slept in, I let her have at it.

She had a great time.


In other news, Millie got her "braces" on Tuesday - which are not really braces at all. The orthotics are simply shoe inserts. You can't see them outside of the shoe.

They should improve her positioning. And give her some more confidence moving forward.

She is adjusting. But it's going pretty well thus far.


On the medical front, we haven't had much new news.

I will go down to the Cities later this month (June 27) to meet with the neurologist and, hopefully, the geneticist as well, to go over next steps. I don't expect any grand reveals or dramatic tests to be scheduled, though we do know she has another followup exam in the fall due to decreased kidney function (but nothing to worry about at this point, we are told...).
Really, things are just ... normal ... for us now, in regards to Millie. She is doing so very well with her signing, speech, eating and physical development. We are so very pleased.

She has, however, hit the Terrible 2s in the last couple of weeks and we're adjusting to having a very opinionated and not-so-easy-going kiddo. One who, very loudly, lets you know her preferences.

Fun times. For real.

Don't get me wrong, it's annoying at times to have her throw herself on the floor in a heap of sadness and frustration, wailing oh-so-pathetically about whatever misfortune has befallen her (i.e. Mommy has to move her away from the oven because she needs to open it to make dinner and I don't want the her to burn herself).

But as trying tantrums can be, they're also a sign that she's getting older.

So I love them.

OK, I don't love them; it's more like I tolerate them.

But I do appreciate them.

Fortunately, they're extremely rare.

More often than not, this is what life is like for us.

Lots of smiles.

- Bethany :)

Tuesday, June 4, 2013

new tricks

It was a moment I wish I could bottle, just to open it up and re-live it yet again.

Friday evening. We were done working, done eating, done shopping.

So we all went outside to play, as families do.

Soon, Lola's best neighborhood pal came over, zipping around on his new big-guy bicycle (sans training wheels).

Lola watched him in awe.

Soon, she approached Ray.

Daddy, she said, do you think I could try my blue bike (the one that doesn't have training wheels)?

And so it began.

Thanks to a new-found toughness, or perhaps just determination, she powered through her lessons despite a few falls along the way.

So here I was, standing in the middle of our back driveway, looking toward the backyard.

Watching Lola, on my left, as she learned to ride a two-wheeled bike.

Watching, too, Millie, on my right, who was taking tentative steps on her own, trying to walk from the four-wheeler to the playset.

Lola learning to bike, Millie learning to walk.

It was just a ... moment.

An incredible moment.
- Bethany :)