Scary September

After the birthday party, I have very few pictures for the rest of the month of September. The month took a turn when I had some complications two weekends in a row and pretty much was told to spend most of my time in bed or on the couch.

Emma - reading Clifford, watching Baby Einstein, sitting in a box. :-)

James -  who went through a "who needs pants" phase!

Thankfully, since the scares of September, I've had no further complications and as I write these words the baby is kicking away to remind me to get caught up on the blog because he intends to have a significant presence on here in about four weeks!

James Starts Preschool

"Just one day a week . . . it's just one day."

This was my chant as I took James to his first day of Mom's Morning Out.

He needs it. I need it.

That doesn't mean I have to like it.

Thankfully, he loves it!

James Turns 2

Yes, if you note the date you'll see the awful truth...I'm 6 months behind.

What can I say?

It's been a busy 6 months!

So . . . .

We had a brunch for James' 2nd birthday with family and friends that are family - grandparents, aunts, uncles, cousins and godcousins (is that even a real word?). Anyway.

Sandra had broken her ankle and was in a wheelchair, but that didn't stop her from mopping my floors and fixing the tenderloin. Mom was on biscuit duty. Somehow it all got done. The weather was fabulous and after you eat a tenderloin breakfast, do you really need to eat the rest of the day?



Anna, Ashlyn, Ethan & James



Not sure if they planned to match or if Clemson was playing!



James loved all his presents and loved all the attention! Emma loved the party hats - she takes her party hats seriously!

This is what James thought of the First Day of School

Where is my Emma?

First Day of School

I realized the other day that this is our sixth first day of school. Emma started preschool the day after she turned 3 in February of 2006. Then we had K-3, K-4, K-5 and 1st grade.

This year is 1st grade again. We are repeating 1st grade and I am thrilled about it. I don't see any sense in rushing through elementary school! We'll stay as long as we can!

This is also our 4th new school. Hopefully, it will be the last for a while. Nothing would make me happier than for us to stay in one elementary school until they kick us out and send us to middle school! We have quite a few friends who have kids at Bethel and my hope is that they will get to know Emma, and she them, and begin to build some friendships.

My friend Jessica sent me a message today that they had seen Emma on their way in this morning and she had pointed her out to her daughter Caroline. When Caroline got home, she reported that she had seen Emma in the hall and had said Hi to her. I could have cried! I told Jessica to be sure to thank Caroline and to assure her that while Emma may not say Hi back, she does hear it and notice it and appreciate it. I'm hoping this is just the first of many new friends for Emma!

I was doing OK when I dropped her off until it was time for me to head out. Emma gave me this look that, to me, said "I'm trying to be brave . . . but I don't know about this, Mommy." I almost lost it. But, her teacher reported that she had a great first day, she seemed happy as a clam getting off the bus, and has had a good afternoon.

These are the days when having a child who can't - not just is reluctant to - not just that it's like pulling teeth to get the info - but that cannot tell me about her day could drive me insane. Or maybe to order a peppermint mocha (which I totally did a few hours after I dropped her off!).

I would give anything to know what she is thinking, feeling and wondering. Does she understand that school is back in for the year? Does she understand that she's going back tomorrow and the next day and the next? Does she wonder where her teachers from the last two years are and why the classroom is different? Did she enjoy her day? Was everyone nice to her? What was her favorite part of the day? Her least favorite?

These are the questions that I never get answers to. So I take them to One who knows the answers. And I beg Him to communicate with her little heart and ease any anxiety she may be feeling. And to give me wisdom to know things I couldn't otherwise know. To show me when to intervene and to give me the good sense to stay out of the way when she's got it under control (as she usually does!).

It helps me to remember that He loves her more than I do.

And that He is holding her safely in His arms.

Jordan Lake

Emma - she liked the view from
the front of the boat

But she really liked watching
the wake from the back!

We went to Mom and Dad's a few weeks ago and they've got the pontoon boat in working order. So we headed to Jordan Lake - it's about a 30 minutes drive from their house. We were fairly certain Emma would enjoy the boat, but not as sure about James. He was quite displeased about the lifejacket requirements, but he settled after a few minutes (not that he had a choice).

James was out cold!

Emma wanted to go faster - and faster - and faster. Brian commented that she could be on speed boat and it wouldn't be fast enough for her. She liked looking over the back of the boat at the wake.

Taking it easy!

Brian and Emma in the lake

Checking on the shoreline
with Papa.

Swimming with Nana!

James was worn out (we had been traveling for several days before we got to mom and dad's) and he fell sound asleep. He slept through most of our adventure. I don't have any pictures of Jennifer, but she was with us!

RTS Conference 2010

Me & Emma at the Aquarium -
She loved the penguins!

We've been home less than 48 hours. I may never get caught up on the laundry or my sleep.

And it is totally worth it!

We had a great time in Covington/Cincinnati, meeting other RTS families, hearing new ideas on how best to communicate with and advocate for Emma both now, and in the years to come.

Having never met another RTS family in person, this past weekend was a delightful experience. Imagine having never been around anyone who just knows - really knows - and to find yourself surrounded by, oh, a hundred or so families who get it.

Emma and Caden (Tena's little man)

Tena & Me

Typical conversations included questions about diagnosis, school settings, medical issues, speech, toilet training and social interactions. But not once did anyone have to explain a behavior or deal with the look you're used to getting when you tell someone your pint-sized peanut is, in fact, 7 years old. 

There was an instant camaraderie - a sense of family - from the first night. There was no childcare available Friday evening and entire families congregated to hear the opening remarks from the organizers and the address from Mrs. Michigan, Stephanie Hunt, who happens to be an RTS mom herself and a vocal advocate for all children with rare diseases.

Brian, me and Cindy

The room was so loud, it was hard to hear the speakers. Now, this might have been an annoyance to some, but Brian and I kept looking at each other and laughing, because underneath the noise there was an omnipresent hum - the exact same hum that Emma has. It's hard to describe, but if you've heard it, you know what I'm talking about. Imagine lots of RTS sweeties, all humming at the same time in a confined space. It was noisy, but it was fabulous! We didn't realize that Emma's hum was characteristic of RTS, but it must be, because we heard it frequently.

Emma and Natalie (Cindy's little one)

I had a great time putting faces to names. Meeting Tena, Cindy, Kristi, Terri and others who I've "known" for years through the RTS listserve but had never spoken to before this past weekend. Even more fun was meeting their children - Caden, Natalie, Noah, Addie, and others of all ages.

Brian and James on the Duck Boat

Of course, we also enjoyed the Cincinnati area, particularly Newport on the Levee. We went to the Aquarium and had some Graeter's ice cream on Friday - Brian is now officially addicted. On Saturday, we took a Duck Boat ride and Emma & I got completely soaked when the boat hit the water. It didn't bother Emma though - she kept telling us she wanted to go on the "special ride" again. Sandra & I went to lunch on Sunday and had some yummy pizza (and more Graeter's) and then we all took a snooze before heading to the pool.

Emma on the Duck Boat -

Before the Soaking!

Emma and James had a great time swimming while I got to talk to some other RTS moms and Brian got to talk to some RTS dads and the whole pool was overtaken by RTS munchkins! It was fabulous!

Brian and I went back to Newport on the Levee, drove around some of the historic and ritzy houses on the Kentucky side of the river, enjoyed the view and got more Graeter's (Brian did - I didn't!).

Emma and Me on the Duck Boat -
After the Soaking!

Monday morning we went on a tour of the new Dept. of Developmental and Behavioral Pediatrics at Cincinnati Children's. The therapy rooms were enough to make me drool, and I'm not even a therapist. They were huge, open and just cool! We visited the Rubinstein library and toy lending library and got to meet a few people who helped to make the conference a success.

When we left, we headed back to Graeter's (I am not making this up!) to purchase some ice cream which they packed in dry ice - guaranteed to stay frozen for 36 hours. The fine folks at Graeter's sent us to the Mt. Adams Bar & Grill - legal since 1941! - and we had a lovely lunch and headed home.

The kids traveled beautifully and Sandra was a HUGE help! I had expected the weekend to be beneficial and informative. I hadn't expected to have so much fun!

Brian and his new love!

Feeling lonely?

I usually try to keep the posts on this blog fairly lighthearted, but I thought some of my fellow RTS moms might be able to relate to this . . .

So, if you're having a tough day and feeling overwhelmed and under-appreciated, please join me on my other blog, Out of the Boat.

And, just for those of you who know and love Emma, please know that as I was putting the finishing touches on my blog post, Emma went downstairs. Which wouldn't have been a problem except for the fact that I had failed to lock the back door. I found her outside in a t-shirt and a diaper, bare foot and carrying her brother's Easter basket.

I try not to dwell on what my neighbors must think!

Modern Art

Sometimes people ask what my life is like.

Today would not be a good day to use as an example.

It isn't always like this. But sometimes it feels like it is!

We got home from therapy and I put James down for his nap. Therapy days are hard on the little man - he gets his afternoon nap so late that sometimes he doesn't take it at all.

But he was quiet, and Emma was watching a DVD downstairs.

I thought I'd take a few moments to finish up a blog post on my personal blog, Out of the Boat.

Here we have "E as Emma sees it" in eye liner.

BIG MISTAKE!

Actually, the big mistake was not double-checking to be sure all the doors were closed. Because while I was posting the blog and checking my email, Emma was doing this. In case you are wondering, Emma decided to use mascara, eye pencil and lipstick as her mediums today.

When you use makeup as a medium, some of the makeup is destroyed in the process. 

While I went to get the camera to document the art work, Emma decided to adorn my Bible. With lipstick. The sad irony - I've been looking for that lipstick - it's my favorite. It is now in the trashcan. These pages are permanently pink now.

Of course, all of Emma's screaming (she did not appreciate being sent to her room) woke up James. So he's in a foul mood now.

Fun times!

I don't know what's going on with Emma this week, but I have a theory. We tend to talk around Emma as if she doesn't understand what we are saying. Kind of the same way we talk around James. So she's heard us talking about me heading to Vandy for Jennifer's graduation. And she's heard us talking about me going off to a writer's conference on Sunday. I know Emma understands far more than she gets credit for, but sometimes it's easy to forget.

My theory? My little Picaso knows mommy will be traveling for the next week. She doesn't understand it all. But she knows. And she's not too happy about it.

Sigh.

In case you're worried, I happen to know from experience that Mr. Clean Magic Erasers will remove mascara from walls.

Gone Fishin'

Emma received a fishing pole for Christmas, and we took her for her first fishing excursion Friday night. We were at a little farm pond and Emma managed to catch a fish on her very first cast. She caught her 2nd brim just a few minutes later. And that was good, because she was done fishing and more interested in wandering around in the woods and exploring the logs and the nearby tree stand.

Mom, Dad, Sandra and I all fished for another twenty or thirty minutes. None of us caught anything.

I have some great video, which I will attempt to add later. For now, here are the pictures!

James "helping" Papa fish.

Emma called the bobber a "ball".

Reeling in the big one!

"Petting" the fish. Big one #1.

Nana helped her catch Big One #2!

The Keys Make the Man

We had such a great time at Mom & Dad's this weekend. Dad made James his very own set of keys. If you look closely at these pictures, you'll see they are attached to his pajamas!

Easter Pictures

Happy Easter! The Lord is Risen! He is risen indeed!

Dancing Queen

We went to Huntin' Camp BBQ & Grill for dinner tonight for Thursday night out with the family.

They frequently have live music and there were three guys playing tonight. Emma totally ignored them. Totally. Until, suddenly, she wasn't ignoring them anymore. She was dancing! She has never done anything quite like this before.

Happy 7th Birthday Emma!

Seven years ago today, Emma changed our world forever!!

If you don't know our story, the short version is this: Emma was born early and spent 32 days in the NICU. It was 2 years later that we received a definitive diagnosis of Rubinstein-Taybi Syndrome.

Now, that was SHORT! Aren't you impressed? You didn't think I could do it, did you?

So, while life is not what we expected and there are days we would like to find the HR department and tender our resignations, effective IMMEDIATELY (see my post on the Witching Hour if you don't believe me) we know that God, through His wisdom, and possibly His sense of humor, knew before the foundations of the world that Emma would be uniquely gifted to fulfill  HIS purposes for her and that we were the parents she needed to help her fulfill that purpose.

RTS is believed to be caused by a misspelling on a chromosome somewhere - but I disagree.

God has NEVER misspelled anything. Certainly not a chromosome. Her DNA may not look like everyone else's, but it is exactly the DNA God planned for her. She is who HE made her to be, knitted together in the womb. And my God NEVER makes mistakes.

Being her mother has been the hardest job of my life. But also the most fulfilling and life changing. I know my Heavenly Father better today than I did 7 years ago. I rest in His Arms much more quickly than I did 7 years ago. I trust Him more than I did 7 years ago.

I have a bit of a self-sufficient streak (thanks, Dad!) and being Emma's mom keeps me on my knees. Sometimes my face, as I beg for wisdom and strength to do something I simply cannot do on my own.

I also have a bit of a competitive streak (thanks, Mom!) and being Emma's mom helps me see that just running, or walking, or crawling the race is more important than who finishes first.

So Happy 7th Birthday, Pumpkin. Mommy loves you more than you will ever be able to comprehend. I'm so glad God picked me to be your Mommy. I'm the luckiest Mom in the world!

Jesus Loves Me

After my last post, I decided it would be a good idea to post something showing the "sweeter" side of Emma. And, let me just say, you are never too old to sing Jesus Loves Me.

Jesus loves me, this I know.

For the Bible tells me so.
Little ones to Him belong.
They are weak but He is strong.

And here's a pictures of James . . . isn't he a little stinker?!

The Witching Hour

Every parent knows what this is. It starts around 5PM and continues until at least 6PM . . . on a bad day, it doesn't end. You just give up and put the kids in bed at 7PM.

Then, around 9PM, you go in to check on them and they look so angelic in their repose, you can almost forget about the fact that 3 hours earlier you were seriously thinking about setting them out on the curb with a sign reading "Free to Good Home."

So, for your amusement and entertainment, I give you the witching hour, Blackburn home, Wednesday, December 9th, in a series of emails I sent to Brian.

Sent at 4:47PM - Since my last communication...here's what's been happening... While I was upstairs doing laundry, thinking that Emma was watching Word Girl, she was, in point of fact, UNDECORATING the tree. Every ornament she could reach while standing on the ottoman was in one of the two chairs.

Sent at 5:21PM - Since my last communication.... While I was upstairs, Emma pulled the ottoman into the kitchen and was eating the cheerios and other forms of gluten-y goodness that were still sitting on the tray to James' high chair, which is currently located in the kitchen sink. Can you say GROSS? In case you are wondering - I've given up on all upstairs activies and have brought the laptop to the kitchen counter. It's the only way I'll survive.

Sent at 5:44PM - When I went to get James up from his nap - keep in mind I was only upstairs for 2 minutes - I returned to find all the couch cushions on the floor and Emma jumping up and down on the now cushion-less couch. I think I'll need to go out tonight.

Sent at 5:51PM - She just managed to remove the backing from a stocking holder. And she has a dirty diaper. Again. Definitely going out.

Sent at 6:06PM - She just defaced the snowman that plays the piano - colored all over it with an ink pen - while I stood 10 feet away in the kitchen. I don't know where she found the pen. I still haven't managed to get supper in the oven. I will try again. How late did you say you were working?

Items I did NOT email him about, because, really, I didn't have time:

• Emma went outside. She went straight for the muddiest part of the yard. Her pants were soaked, her white shoes? Brown.
• She unwrapped all the Hershey Nuggets with Toffee & Almonds. I don't think she ate any (she's allergic to practically everything in them). I, however, did eat them. All of them. Can you blame me?
• When I ran - literally - upstairs to get the powercord for the laptop, I came into the kitchen to find Emma with the oven door open and a fork in hand, getting ready to get into the pan of chicken. The oven was on. At 350. Scared me to death. I screamed her name in panic. She backed away from the stove and I spent the next 5 minutes trying to get both her and James to stop crying. My scream scared them both. I'll be buying an oven lock while I'm out tonight.
• On more times than I could count, I had to tell Emma to "GET DOWN" - from the ottoman, the coffee table, the sofa table, the dining room table, the top of the recliner, the arm of the couch . . .
• I also frequently said things like "Emma Kalyn, do not kick your brother" and "Emma, WHAT are you doing?"
• I also had to convince Emma that the Christmas stockings are not socks and that "No, you cannot wear them around the house".

So, I'm off - for a little Christmas shopping/retail therapy. I leave you with this and the knowledge that when I get home and peek into their rooms, I will remember how much I love being their mom.

There He Goes...

We've had a few close calls...the 'sorta' step, which is really more of a foot movement prior to falling...but tonight, we found the proper form of motivation.

The remote control! James got so excited and walked for it! He actually did it several times, but this was the first time and the only one we got on video.

Duck...duck...Goose!

Emma had a field trip to Stewart Farms last week. The weather was perfect! We went through the corn maze, then had lunch. While we were waiting for our tractor ride to the pumpkin patch, Emma's wonderful teacher, Ms. Vigh (the beautiful blonde in the video) sat the kids down to play Duck, Duck, Goose!

I think you'll enjoy Emma's version. She's totally got the whole "duck, duck, goose" and then run. The part she doesn't have is that she should run around the circle...