Our Oregon Vacation Post #1

Sadie and I are enjoying our annual Attilie's-birthday-4th-of-July-beat-the-heat Oregon vacation. We're in Eugene and it's been rainy and in the 60s...which has been a HUGE relief from the 115 I've heard it is at home!

Monday morning we got up REEEEEAALLLLY early and headed to the airport. The thing I always appreciate about Sadie is that no matter what time I wake her up, she is always happy to be awake! So, when I grabbed her at 4:45am and put her in the car, she just smiled as big as she could and was happy about whatever was going on!

The airport was a mess. We flew out of a tiny airport in Mesa, and apparently, so did everyone else. We arrived at 5:50 and I don't think we got through the line and off to security until almost 7:15! It was insane! But we made it, and they let Brian come to the gate with us because we have a disabled child. Since they were so busy (although not busy AT ALL at the gate...because people who got there 2 hours before their flight were just barely getting through and getting on the plane!) they told us that they don't usually let a helper through unless the person flying is disabled. whew!

Our plane ride was uneventful. Because we were so rushed, I forgot to fill up my water bottle. I didn't realize that if I was thirsty on the plane, it was $2 for a bottle of water!! Just water! But the lady next to me must have pitied me and my disabled child, and she bought me some water. She was very nice, even when Sadie dropped a load in her shorts and we had to smell it for the last half hour of the flight, she didn't complain or make a face at all!

We immediately had visitors, which we enjoyed. Sadie was happy and cooperative. She even took an hour long nap when we got home!! I think this is going to be a good trip!

The next morning we walked to a bakery from my sister-in-law's mother's house. It was my first time meeting my new nephew, Theo, and it was so good to see Attilie and her other cousins interact with Sadie. They are really too young to understand that Sadie's different, so they just treat her like a baby. And Maddie (who's 3) and Attilie (who's 2) have both told me they love her. Attilie even called her "my Sadie." Sadie also obviously loves them. Attilie also loves hanging out with Grammy (she calls her "GAmmy").

Later that evening, I joined my best friend, Anna, and her family for dinner. She has 3 boys who are 1, 3, and 5...and they love Sadie too. The littlest one got down on the floor and laid next to her, the oldest sang her songs and played peek-a-boo with her. I had NO IDEA, though, that boys could be so rowdy and loud!! Neither did Sadie, it upset her a little at first, but then I think she liked it! She really likes being around other kids. I wish we had more kids to be around at home like we do here.

We have more fun planned while we're here!! Church Wednesday night, Build-A-Bear Thursday for Attilie's birthday, swimming on Friday and a birthday party on Saturday! Then I'll still have another week before I leave! I dreaded coming since Sadie has been so screamy for so long. But so far she has been happy and calm. So far I'm really enjoying the vacation, and so far, so are the people we've spent time with, because they've been able to enjoy Sadie and not feel sorry for me as I continually try to calm a screamy child. I'm actually looking forward to the rest of our days here!

I'm back, but my post is lame.

I had this idea that I could tie my hatred for libertarian economic political theory to the advent of our societies wish to refudiate social programs in the name of "budgets". I can't decide if my post was more about my sadness of societal decisions, or the love of my daughter and the potential diminished services she is facing as she ages. Either way, it isn't in the theme of this blog.

So instead of a politically abrasive blog, I'll post a picture of my daughter near our banana tree!




And quickly talk about my favorite new event: when screamy, and that's often, in order to subdue her tirade of whaaa! I'll take her outside. She never complains over temperature, she just enjoys the sunshine and the change in surroundings. Screaming ceases. As our sun is blazing and bright in the summer, we'll often bask under our Banana Tree in the partial shade. Sadie, true to form, loves to hear the rustle of the leaves as they gently sway in a arid summer breeze.

What a strange night!

Brian went to Seattle this week for some sort of training. It hasn't been so bad being alone with Sadie because 1. I'm not working, and 2. we've been giving her ativan at night to help her calm down and go to sleep (and it's working). But last night the power went out and it was scary.

It was about 9:30pm and everything went dark and quiet. Then I heard sirens. Sadie was still awake, but laying in her bed, and without the sound machine blowing, I could hear her hiccuping in there. I looked out the window and the whole neighborhood was black. I guessed that someone must have gotten in an accident and hit a pole that caused all our power to turn off. I didn't dare go outside, that would mean having to turn off the alarm! So, instead I called my mom.

We talked a little bit, and when I felt a little more calmed down and had found a flashlight, I went to go sleep with Sadie. That was a bust. She wanted to kick and yell and complain about how tired she was, but she didn't want to sleep. And her bed is uncomfortable. So, instead, I brought her back to my room.

It was hot. It was probably over 90 degrees outside and we had no air conditioning, no fans, and we were cuddled up next to each other on the Tempurpedic bed (in case you've never experienced it, that memory foam is HOT!). But she finally fell asleep, and so did I, and we struggled a little, but we slept okay.

At 4:00am, I decided I didn't want her in my bed anymore. The sun would soon be coming up, the cats usually want to come in around 4:30-5:00, and Sadie had not been plugged in to her feeding pump all night, so she was probably hungry. So, I took her back to her room and I'm not sure she even woke up. I plugged her in, turned on the sound machine, and she slept there until 7:30 or so.

It was definitely a strange night!

The Poop-splosion

Last night we sort of celebrated Father's Day by going out to dinner with Brian's parents. I say sort of because even if it hadn't been Father's Day, we still would have gone out to dinner with them. You see, they only live in Phoenix for part of the year (the good part), then in the summer they travel and spend time at their other houses. We haven't seen them since April and we probably won't see them again until after Christmas. They were just driving through.

We haven't taken Sadie out to a restaurant in a long time, so I suggested we go somewhere sit down, but not fancy...we ended up at Pita Jungle. It was perfect. Not too crowded, not real formal, kind of loud, but not overstimulating. Unfortunately, Sadie just wanted to be held and to suck suck suck on her pacifier. That seems like all she wants to do lately because of those teeth. So, naturally, I started, and when I got tired I handed her off to Brian...where she took the liberty of dropping a deuce.

Brian insisted that I change her NOW! Nevermind that I was halfway through my hummus and tabouli. NOW! So, I took her in the bathroom and soon learned that she didn't just poop her pants, she had a poop-spolsion. It was EVERYWHERE! I am surprised it wasn't on me! Luckily I was able to wipe the tiny bit off of her shirt otherwise we would have come out of that bathroom in just a diaper! As it was, Sadie was pantless...which, thankfully is okay for babies.

After that we had no more significant events. Grammy and Karl came back to our house for some cake and cuddles before they had to go. We'll miss them for the next 6 months, but it was good to see them last night!

Sadie's favorite Daddy

When I got pregnant and we started planning for a baby there was so much I thought I knew, but Brian was just clueless about all of it, and he wasn't afraid to admit it. And when I went into labor, he was the only man in the room, and the only one who had never been through labor, and he was wise enough to keep his mouth SHUT! He did a great job during our homebirth reminding me to breathe, encouraging me, and getting me everything I needed. But we had practiced that part of it!!

When Sadie was born, we were so unprepared for the turn of events, it could have easily cracked either of us, or our marriage. The reason it didn't is because my husband is so strong. He has turned into the best Daddy I could ever imagine, and the best Daddy for Sadie.

So, in honor of Father's Day, here are the top 10 reasons Brian is such a good Dad:

10. He goes to as many doctor's appointments as he can.

9. Even though it may be a little more work, he always encourages me to use cloth diapers and feed her homemade food because it's better for her.

8. He uses the word, "ouchies" even when it's NOT Sadie that hurts.

7. Sadie and Daddy walk to the mailbox everyday to get the mail.

6. He is the best at reading The Hungry Caterpillar.

5. He can't keep his hands or his lips off of her, because he just loves her so much.

4. When he gets her from the tub each night, before he puts a diaper on her, he makes sure he squeezes those little cheeks. (I hope this ritual ends before she's 11)

3. He helps put her to bed.

2. I can go out for the evening and he can remember to give her medicines, make sure her feeds start on time, and get her in bed asleep all by himself.

1. He gets up and goes to sleep with Sadie when she wakes up in the night.

I hope that your children also have awesome Daddy's and I encourage you to celebrate them today. Even if it's the little things that they do that you appreciate so much, let Dad know. Chances are, if he's like Brian, he doesn't do it because he has to, but because he LIKES to.

Happy Father's Day!

The Fast Forward Button

I've been reading a book about brain plasticity called The Brain that Changes Itself, and it is amazing. But I don't want to talk about the book (I'll save that for another post, after I've finished the book), I want to talk about the way it makes me feel.

Not only does this book talk about all the fascinating things science has learned about the brain and how it rewires its neurons, but it's full of success stories. Most of the stories involve either stroke victims or people with Cerebral Palsy. And, while it's encouraging to hear stories about children who were a lot like Sadie at her age that grow up to play sports with other kids and become independent little people, it also makes me eager and impatient.

Sadie will be 17 months tomorrow, she is a full-on toddler, her body looks like a little kid's, her voice is that of a little girl, and seeing all those teeth when she smiles always reminds me of how big she is. But she's still so much like an infant. She can hardly roll over, she can't sit, she still doesn't grab things with her hands consistently, and being on her tummy gets really frustrating for her after a few minutes. In so many ways it's really sad. But when I read these stories, it just makes me want a fast forward button. I KNOW Sadie will crawl and walk and eventually learn to talk. I KNOW Sadie will learn to go to sleep on her own, and I KNOW that she'll eventually get this eating thing down. And someday she'll have all her teeth and Brian and I will dance a little jig! But I want her to do these things NOOOOWWWWW!! (that's me whining)

When progress is in such tiny little increments, it's hard to get excited about it. A couple of weeks ago, we realized that Sadie can balance herself front to back when in sitting position (or being held), which is a HUGE deal! But 2 weeks later, that's all we're still talking about. There hasn't been anything else to get excited about since then.

I can't wait to tell our story about how Sadie was almost dead, the doctors told us she'd be a vegetable, they let us take her home because she was supposed to die. And now she does all these things that normal kids her age do. But we're not there yet, so far we only have the first part of the story...and it's an amazing part. But I want to know how it ends, because I have a longing in my heart like I've never felt before for my kid to dance with me to the baby beluga song, for my kid to walk to the mailbox with Daddy instead of being carried, to sing songs together in the car, all the things most parents take for granted. It's really hard to be patient when I can't wait to baby proof the house, to help her with her math homework, and then to hear her talk on the phone to her friends about boys.

Being a parent is so strange (in a good way), especially when your child has special needs. I have feelings and longings and desires for my child that I never thought I could ever feel so intensely. But, if I've learned nothing else, I HAVE learned that the brain is an amazing thing, made by God, that has the ability to shock and amaze even those who call themselves experts. And Sadie's brain is the most amazing I've ever loved.

The Harp Lady

This morning Sadie and I had a visit from "the harp lady" as we so affectionately call her. Her name is really Jocelyn and she works for Hospice of the Valley. She comes to play for us and do music therapy with Sadie via a grant that Hospice of the Valley got. She's been coming for months, and even if she didn't play her beautiful harp and sing songs, I'd still love her visits because she is one of those people that just lights up the room when she walks in, and instantly you feel better when you see her!

She's been here 5 or 6 times, but today was the first time Sadie wasn't screaming. The first couple of times she came, Sadie just screamed the whole time while Jocelyn played. I think the music was more for Brian and I at that point!! Then we had some marginally screamy visits, ones where as long as I was bouncing or rocking her, she'd be okay. But, this morning was different.

Jocelyn came over and played her harp for about a half hour. In the past, she's only played really soothing music, but today she sang itsy-bitsy spider and twinkle little star to Sadie. I was in the other room on the phone, but I swear I also heard how much is that doggie in the window!! What a fun song! Then she got down on the floor with Sadie, who was sitting in her blue Tumbleform chair and gave her bells and a maraca and they sang songs "together"!! She had bells she put around Sadie's ankle, then she got Sadie to actually hold the hand bells, and she helped Sadie shake while they sang Jingle Bells (I know...it's June, but whatever!)

You could tell Sadie was stimulated and really enjoyed it. She loves music so much. And I love Jocelyn. Lucky for us, she gets to come back again in a few months!