Tuesday, March 30, 2010

marvelously mundane


A long overdue

Emma haircut.

I just sat her in the bathtub and chopped it off ... which wasn't as big a risk once I realized how darn cute she looks in hats! :)

And Charlie is loving the fact that he can be outside playing catch with Daddy

Other than that ...

Emma is still pretty on and off about her sleep. She does have good nights where she sleeps through, but then occassionally there are the those 4 hour parties. It's getting easier not to worry about it too much and get some rest either way.

She's also having some GI issues and we're having trouble finding answers, but nothing too serious.

But tonight was really good :)

I wished I had my camera: we got a new fire pit and had our first backyard fire. Josh and Charlie informed me that breaking up sticks and finding pine cones was "man work," so Emma and I sat and watched. She LOVED it. She even crawled around the grass for awhile and cruised around the chairs. Very happy Emma evening.
Then, when we had given the "5 minute warning," Charlie climbed up in my lap with me and Emma. We sat and sang some songs and Emma and Charlie played with each others' hands and Charlie let Emma check out his nose for awhile and then he told her he loved her.
Happy happy happy spring evening!

Wednesday, March 24, 2010

brotherly love

We had our first "Emma knocked over my tower" tears today.

Charlie was building a racetrack for Lightning McQueen with his blocks this morning and Emma apparently wanted to play, too.

I was actually really glad. I'm glad she's stepping on his turf and challenging him and forcing him to share his toys. That's one of the reasons you have more than one kid, right? :)

But what REALLY makes me happy is that Charlie is still taking his big-brother responsibilities toward his sister VERY seriously!

If I put her down to go to the bathroom and she gets frustrated with something, Charlie can be heard almost immediately saying, "It's ok, Emma, I'm here!"

And today I was finding a sweatshirt for going outside and he was putting his socks on and Emma suddenly looked around and no one was there. She fussed, and I came back and said, "Oh, Emma Bear, why are you sad?" Charlie immediately explained to me that it was because HE wasn't there.

Even his BOY-ness is starting to include her. He's in the stage now where an empty paper-towel roll is perfect for "getting the bad guys," and after the bad guys have been, apparently, defeated, he'll come back to where Emma and I are sitting and say, "it's ok Emma, I got them for you" and then turn to me and sigh and say, very dramatically, "Mommy, I was so BRAVE!"

Oh, little boy, don't grow up too fast on me ...

But it did make me think of this video a saw a couple of weeks ago. I know I'm proud of Charlie, I can't imagine how proud this boy's parents would have been of him:

Soeren Palumbo's Graduation Speech

I am so blessed to watch how much my Charlie loves my Emma! Yes, he has his (perfectly normal) moments of wanting his space, and he has absolutely noticed that he doesn't get Mommy's undivided attention very often any more, but in general, I'm so so blessed.

Monday, March 22, 2010

Snapshots from the weekend.

Josh and my brother fixing ... something ... in my car (they knew what they were doing so it's ok that I don't!). Charlie sitting on a (closed) garbage can with his little plastic tools reaching into the engine HELPING.

Josh and his father and Charlie going to the Twins Open House in their new outdoor stadium. Charlie got a new Twins hat, which means Emma gets his old one.

Emma and Grandma rolling around on the floor giggling.

Mommy, Emma, and Grandma shopping. Charlie's next winter coat - $7.99. A pair of jeans for Mommy - $5.99. Enjoying time with the mother-in-law and a precious little girl - priceless.

Emma in a boaster seat next to Mommy with Grandma across the table at a Mexican restaurant, all eating chips.

Josh and his father planning how many baseball games they are going to attend this year, many of them with Charlie. I turn to my mother-in-law: "well, it's a good thing we like each other!" I am blessed.

Emma sitting at the table at home trying to lift her sippy cup enough to get water. Frustrated, she emphatically signs the clearest version of "help" we've seen yet. It's now distinguishable from "more" and "again," which are still not distinguishable from each other.

Charlie and Daddy playing lots of catch in the backyard with Charlie's new baseball.

Charlie and Mommy going on a bike ride.

Emma getting a hair cut.

Actual pictures and video to follow; my camera and computer are currently not on speaking terms. Suffice it to say for now, however, we had a really GREAT weekend!

Tuesday, March 16, 2010

just another day

And today was actually a really good day!

We went to our library's preschool story hour this morning and Charlie picked out a book about construction vehicles to bring home.

So of course we had to get out all his Tonka trucks! :)

I have a bag of beans he will occasionally play with. Never before on quite this large a scale, though ...

We had a great time! BEANS EVERYWHERE! :)

And seriously, my little dude is GREAT at cleaning up. I whine about his 3-year-old-ness sometimes, but he really is VERY well-behaved. Obedient and tenderhearted, he'll even get out a brush and dust pan and clean up each and very bean :)

Ahhhh, good days ...

And how's Emma?
Well, her night-time parties don't seem to be phasing her one bit. We did notice that perhaps a tooth is coming in, so we gave her some Tylenol last night. She didn't wake up. Now, we gave her the medicine at 8 pm and she'd been waking up at 4, so I'm not sure it really made a difference ... we'll see.

Yes, this is Emma sitting in Charlie's bed signing MAMA while I take a picture of her. After naptime, Charlie often asks to play with Emma in his bed ... I think he likes it more than she does :)

And someone explain this to me: Why do her little pink socks from NICU still fit ...

... but her pigtails have gotten RIDICULOUSLY long?

And when Josh got home from work, the kids were so excited to see him, they just climbed all over him ... literally :)

Emma in particular had a great time with Daddy tonight.

I don't really know how to describe this game. It was a little bit peek-a-boo, but mostly just silly. Isn't it amazing what parents will do for hours on end just because their child laughs at it? :)

In this video, I promise I am NOT ignoring my son. I'm rolling a car back and forth with him in the kitchen ... it just SOUNDS like I'm ignoring him :)

We really had a great day today. Thanks for your kind comments on my last post. I hope that Christ is glorified in our WHOLE story, and so I'll keep telling it as long as you keep reading :)

I hope it may be said of us

"Our mouths are filled with laughter, our tongues with songs of joy. Then it was said among the nations, 'The Lord has done great things for them.' The Lord has done great things for us and we are filled with joy." - Psalm 126:2-3

Not every moment is HAPPINESS, but when we rest in the Lord we find JOY.

Monday, March 15, 2010

just is

i'm tired right now

i'm not really sure how to find balance in a lot of areas ... emma time, charlie time, emma and charlie time, josh time, family time ...

i'm not sure how to balance the fact that i feel i owe it to emma to show those around me that life does go on and joy didn't disappear, but at the same time the reality of the situation is that sometimes it sucks.

i don't know how to balance my days. sometimes kids need days with NOTHING on the calendar but we don't get many of those, so what on earth do i say no to?

and i don't know about balance in my blogging sometimes. i want to tell the amazing stories of blessing that God gives us to tell, but i feel a pull that sometimes i need to just tell the other stories, too.


so here's two "other stories":

Charlie and Emma were in the church nursery this morning for the childcare provided for our Mom's Bible study. I always tell Charlie when Emma will be in with him that he needs to "help with Emma and be a good big brother"

I think our Children's Pastor (who was in there) was telling a story and Charlie was sitting with him. I think, also, that maybe Emma got fussy where she was so Charlie asked if Emma could come sit by him?

Pastor Jeff said yes, so Charlie went over to Emma and picked her up and carried her over to where he was.

Pastor Jeff then asked Charlie if he was allowed to do that. The real answer is "only when a grown-up is there to help you," so i can understand the gray area Charlie found himself in ...

Apparently it was a bit of a "rough dismount" :) But everyone's ok.

So I struggle with this. Emma is little but not fragile. Someday I may WANT Charlie to be allowed to help her. And he'll get bigger much faster than she will, so it won't be out of the question soon ... not today, though.


And finally, I'm struggling a bit with Emma's sleeping. She usually sleeps really well, but this past week she's been having what we call "parties in Emma's crib"

She goes to sleep just fine and most nights sleeps through the night.

But on these nights, she wakes up at around 4 am and sits and plays and "talks" for an hour or two and then goes back to sleep on her own just fine.

But I can't sleep through it.

And I can't get the fact out of my head that I KNOW that some CdLS kids have sleep issues. Emma might grow out of this or it might get worse. It might be that she has discovered her voice more lately and wants to practice using it, or it might be that she will grow into a teenager that just plain DOESN'T sleep. And there may very well be behaviors that go along with that ...

And contemplating this at 4 am ... well, I don't reason with myself well at 4 am.

Yes, there's nothing I can do about tomorrow today.

Most of the time I live in the moment really well. I have learned, through the grace of God in Emma's situation, to truly follow Christ's advice of "don't worry about tomorrow" ... usually ...

But at 4 am, I worry.

So today, I'm tired.

Wednesday, March 10, 2010


I just wanted to post a link for those who want to learn signs, whether to use with Emma (several of my family members asked:)) or for your own kids. We did this with Charlie and it was awesome to see him communicate instead of whining! :)

Here's a link to a website where you can click on different words and a video will pop up of the sign.


I started with Mommy :)

God bless!

Monday, March 8, 2010

just a thought

i'm going to clarify right away that i'm NOT having a bad day, even though i can see how this post might make it sound like i am. :)

it's just, in Christian circles, i often hear this phrase, "God never gives us more than we can handle."

i'm pretty sure that's not true.

the verse that i believe many are thinking of when they say this is the one about temptation that says that "God won't let us be tempted beyond what we can bear"

but i don't think that's the same thing. at least it's not what most people mean when they say this.

God REPEATEDLY gives His children more than they can handle.

Doesn't he send Gideon or someone into battle with embarrassingly few men just to show that it is GOD's victory and not men's?

And doesn't he tell His children to walk around in the desert for 40 years even though there was no food just so they would learn to depend on his manna from heaven?

my point is that if you're feeling today like God has given you more than you can handle, maybe He is?

and maybe it's to remind us that we can't handle ANYTHING without Him?

just my thought for today.

God bless you!

Friday, March 5, 2010

Wanna see something else cool?

I waited a couple days to post this to see if it was for real. It is. She signs MAMA!!!!

a good, lazy morning

you know those days when there is nothing on the calendar?

they are few and far between around here, but they do occassionally happen :)

they are those days when the world gets smaller, your focus only big enough to encompass those around you.

you're secretly wondering what your escape plan is going to be if the wheels fall off the wagon ... is there anything we might possibly need to purchase at Target?

but then you blink and it's 11:00.

i had that kind of morning this morning.

emma laughed easily

charlie loved freely

we played lots of baseball in the basement with a fabric ball and a plastic bat we got at chuck e cheese over a year ago.

we discovered that the blue monster truck, when rolled, lands more easily on it's wheels than the red monster truck.

i concluded that the pink baby lotion makes her smell better than the green.

charlie poured a "cup of tea" for emma with the little tea set my grandmother gave me.

really really important stuff happened around here today.

i'm not being sarcastic. honestly. REALLY REALLY important stuff :)

God bless you this weekend!

Wednesday, March 3, 2010

good day/bad day

Emma is behind on her shots (yes, we vaccinate. we space them out a bit, but we do them all)

So I took her in yesterday, but before we did the shots I asked our pediatrician to look at the strange red dots/rash-looking thing that has appeared on her upper arms. I wanted to make sure she wasn't sick before we did the shots.

Dr R quickly ruled out infection and then got kind of quiet and poker-faced. She said, "Do you or your husband play rough games with her where you grab her arms?"

Having been a mandatory reporter myself in my previous career, I knew exactly where she was going with this and felt my face flush as I said "no"

She said, "Because those are broken blood vessels from intense pressure on her skin."

Crap ... ok ...

Next she asked about the big bruise on the inside of Emma's elbow. I told her about the AWFUL failed blood draw experience, which was over 2 weeks ago now.

Dr R's face instantly cleared and she asked if we had had to hold Emma down for a long time. I said yes, and she said that those broken blood vessels will heal, but it's similar to the "rash" new mothers will sometimes have on their faces because of pushing so hard during delivery. She assurred me that Emma would be fine and we went ahead with the shots.

Ok! Good to have an answer about that rash, but I HATE that I did that to her!!!! :(

But on a more heart-warming note:

Emma is learning her signs! I taught her "Mommy" yesterday, but it's a little similar to "eat," so I think she's getting them mixed up, but she's trying them both and gets a BIG smile on her face when I praise her for getting one right!

Yesterday, Emma and I were looking at a picture book and I was showing her animal signs and Charlie came over to see what we were up to.

I signed to Emma that her big "brother" had come to say hi.

Charlie asked what the sign was for "sister," so I taught it to him.

Next he asked, "What's the sign for LOVE?"

Ahhhh! That's better! Leave it to Charlie to pull you back up when you're down! :) I thank Jesus for my kids!

Monday, March 1, 2010

Two posts in one day - that's how proud I am!

She's slowly but surely learning her signs. This means "eat" or "hungry." Sometimes it's a request, but more often it's an observation. This one just started last week and we're helping her zero in on what it means, but I'm so proud of her! :)

I realized that I haven't done just a general "Emma update" post in awhile ...

Emma is sleeping well at night (most of the time) and takes one good nap during the day. I feel like if I pushed it I could have her take 2 naps still, but we're on the go a lot and one nap is just easier to work around with all of her other appointments ... not to mention Charlie's social calendar :)

Emma still enjoys eating, but doesn't eat nearly enough to decrease tube feedings yet. She takes 90 ml four times a day during the day and 350 ml slowly overnight. During her daytime tube feeds, she sits at the table with the rest of us and takes bites of food. A typical lunch might be 5 puffs, 3 bites of applesauce, and several sips of water or juice from her sippy cup. She enjoys it, it's not a struggle, but after that amount, she's done and she doesn't understand that if she keeps going it will satisfy her hunger.

To be honest, the fact that she'll sit at the table and "socially" eat with us is HUGE. I have said to several people that, while I'm super motivated to keep trying new foods and helping her learn to eat, if it never got any better than this, that would be ok.

As for her blood draw adventures, we still haven't figured out how to test her for gluten sensitivities yet. So our pediatrician suggested perhaps we should just start feeding her foods with gluten and see how it goes. We're going to try the blood test again in a couple of months, but this way we not only have "clinical" data as well, plus the test will be most conclusive if she actually has gluten in her system.

Let's see, what else? She's crawling and pulling to stand and cruising. Her motor skills explosion from after getting tubes in her ears has kind of plateaued for a bit, so I'm hopeful that we'll start to see some growth in another area of development now :)

We have an appointment this week to get her some behind-the-ear hearing aids. I was dissappointed about that, since her hearing got SO much better after the tubes, we were really hopeful that it would be 100%, but it's not to be. That's ok. I need glasses, she needs hearing aids, not a crisis.

Other than that, she and Charlie LOVE each other and I'm loving them :)


I heard a great sermon this weekend about hope.

Here's the Scripture:
Let us draw near to God with a sincere heart in full assurance of faith ... let us hold unswervingly to the hope we profess, for he who promised is faithful. Heb 10: 22, 23

It made me think about the future. And Emma.

It made me think about how it's easy to look at Emma's future and think about the possibilities for her behavior and potential and get depressed.

Or at the very least, it's easy to think about this phase of Emma's development as my "honeymoon" with Emma. It's easy to think about tomorrow being worse than today.

But in Christ we have every reason to hope for the best. And in Christ we are prepared for the worst.

I keep thinking about that MRI test I had when I was pregnant. I got claustrophobic. I DIDN'T want to be wheeled into that tube!! I panicked and they let me come out for a minute. I remember sitting on the bench, trying not to cry, saying under my breath "I can't do this"

And then I looked down the tube.

It's like in the movies, you've seen it. Off-white plastic walls and white light at the end.

And I felt God say to me, "I'm in there"

He was in the MRI tube. He was with Emma in surgery. He was with us when we got her diagnosis. He was there when we couldn't get a needle in her arm. He's there every time we change her button.

So He'll be there tomorrow, too.

And on a more worldly level, you could spend your life dreading the future if you wanted to. Whether your child is typical or not. Why not dread the two-year-old behaviors when you have a sweet newborn in your arms? Why not dread sending them to school when they are two and want to sit on your lap and read a book? Why not dread the teenage years? Why not dread their college rebellion? Yes, it's different with an Emma, but NONE of us can do this parenting journey without the sense that there is a reason to HOPE.

I don't know what the future looks like, but I have felt the arms of Christ surrounding my family as we've made it this far, so WHATEVER happens, I have reason to look toward the future with joy, peace, and HOPE.