Walking CF Into the Ground

No, the cystic fibrosis walk wasn't a hoax that put your money into my bank account - we really did do the walk. THANK YOU to all who donated. Our tiny little team was able to raise almost $800 in 3 days, and I was in awe at the caring and generosity of many. We are all really grateful for what modern medicine is already doing for Madeline, and feel very hopeful that advances will continue to be made. Thanks again for helping to provide some funds to keep those improvements coming! Here's how things went at the big walk.

Team Maddie before the big walk. Me, Josh, Noah (only forehead showing), Gary, Hannah, Sarah, Dave, and Madeline. I took the walking notion very seriously. I dressed to really just walk the disease right away, but learned it wasn't a totally necessary dress code. That's okay, I was serious about really licking CF. This fox is the mascot for the local minor league basketball team, and Josh was absolutely fascinated as it walked around pumping everyone up to cure cystic fibrosis. The team is the Flash, thus making this the Flash Fox, and every few moments Josh would ecstatically squeal, "The Flash Fox, mom, the Flash Fox!" When it was his time to shine and get his picture with the fox, Josh was too full of awe to smile. Hard to beat a basketball playing fox.

But when it was time, we slapped his favorite hat on him and he was ready to stroll for the cause.

Noah was also pumped to be proactively strolling in behalf of his cousin.

And we were off. This is what it looks like to walk for cystic fibrosis, folks.

Had to stop for hydration, of course. (It looks extreme to see me downing Vitamin Water for the cause.)

Dave and Madeline half-way through. Don't want to intrude upon their moment by further commentary.

This is Madeline's reaction to everyone rallying around her.

Josh likes her.

I need to stop posting pictures of myself looking awful, but I really love this after-walk moment. Turns out there was a barbeque afterwards, which was a great bonus. My favorite part of this picture is Noah's reaction towards the apple.

After all of that, we went swimming, and had a great time. It was my last chance to ride the waterslides while my pregnancy was still discreet enough that the teenage lifeguards didn't dare say anything about it. THEN we had cheesesteaks, which I mention because Gary and I loved it and I need to remember them. What a day . . . cystic fibrosis doesn't stand a chance after that.

Enchiladas With Plaff

I am indescribably exhausted. I was hoping for a second trimester boost, but recently I've just felt like a zombie walking around. I try to exercise to get some energy (so glad I can return to the gym now), I eat reasonably well, I get a reasonable amount of sleep . . . but wow, I feel tired just typing. What have I added to my schedule? Well, the gym, as mentioned, and I now teach dance lessons to little girls twice a week. Just twice a week, shouldn't be making an impact.

So exactly how tired am I? Last night I climbed in bed (not too late, either), and Josh made some crazy sound in his sleep. The thought that came to my mind was, "That child sounds like an enchilada." What?! Yet that was my first thought, one that didn't seem strange until this morning.

This thought of mine reminds me of my dear son Joshua, who is constantly making up words whenever he doesn't have one. Here are a few he's come up with recently:

-Josh was playing in his room and Gary asked him what he was doing. "Playing with the duckgums," was Josh's reply. (They were Triominoes.)
-He is constantly drawing something he calls "penshuns." No, he's never heard us talking about "pensions," as far as he knows he made that up. He draws penshuns for everyone. "Mom, I found Noah's penshun on the floor!" he'll say.
-We were getting shelves built in our house (hooray for that, more later), and there were little scraps of wood all over. Josh picked some up and proclaimed he was playing with fees.
- At dinner Gary asked me what recipe I used. Josh said, "I have a recipe. It has sugar and plaff."

I know there's more that I'm forgetting, like I said, he does this often. The crazy thing is, he remembers the words he made up. A couple of days later, he cleaned up the duckgums, and called them the same thing. Similar story with the other words. Funny boy. As for Noah, he's getting a lot of attention by sweetly saying, "Hi, hi," to everyone he sees. Aaaah. Writing happy things just gave me an energy boost. Maybe I have the strength to go buy more plaff . . .

One Year of Noah

Dear Noah,

I worry that you might struggle a little with being a big brother so young. I know that you won't remember being the baby, and hopefully you and your new brother will grow up being great friends, like I was with my sister, but still . . . I want you to know that you're not just one of a crowd of kids or a bunch of babies, you are my one and only Noah. Maybe someday if you struggle I'll be able to pull out this blog entry, and you'll know my sincere feelings around the time you turned one.

Although your first year has passed by very quickly, I feel like you've been a part of our family for a long time. I remember the first time the doctor laid you on my chest, I looked at you and gasped because you were so beautiful. You were nearly clean (thanks to being overdue), and you had wavy dark hair and big brown eyes . . . I just stroked your head and cheeks in wonder. That night I was trying to sleep, I mean, I should have been tired, getting you here wasn't exactly easy, but I couldn't really sleep. All I could think was, "I have a really cute baby, and I can't wait to see him."

I tried to get the perfect photo of you those first few weeks, but my camera wasn't fancy enough to snap one before you made a funny face. I love the funny face photos, but trust me, your preciousness in person was over the top. Now, I still love your big eyes and your brown hair . . . which is usually all over the place because you style it with food at every meal. I love your giggle, your snuggly hugs (especially when you pat me on the back), and your cheeks. Oh, man, I love those cheeks, I just kiss and kiss them. It's actually bringing tears to my eyes thinking about you growing up and not having those cheeks and that snuggle.

When I thought about having a new baby, one of the reasons why it sounded good is because you have been such a great baby. When I watch you and Josh playing together or with your dad, how can I help but think babies are great?

Oh, Noah, I really love you. I might have other babies, but I'll never have another baby Noah.

Love,
Mom

So, yes . . . my baby had a birthday a couple of weeks ago! I hope you can excuse that I chose to write that here instead of my journal, but this is where it ended up. Hope it doesn't sound like my baby is superior, but he is my baby. My prayer would be that every baby could have a mommy that feels this way about him or her, if not in all of those exact words. Anyway, we did have birthday festivities, and I have no brilliant segues, so here is some of Noah's recent life.

Noah got his first haircut at the beginning of May. Doesn't he look excited to get a new look? (Yes, Gary's the barber around here, and I think we did this pretty early in the morning.)

Noah loves playing with hats all of the sudden.

For his birthday, we celebrated hard at Chuck E. Cheese. Normally we wouldn't have a one-year-old's party there, but my niece was having a birthday at the same time, and my family had another event in the area anyway, so . . . lucky everyone! Noah is cheap there, because he loves the cars, etc. whether or not there's a token making it go. Here he is with his cousin Braden, just delighted to be sitting on the ride.

Noah and I took a little safari together and Gary captured this face . . . "Why is all of the attention suddenly on me?" He wondered. But once the song is over, it didn't take Noah long to find the "business end" of the candle. (Quote by my dad.)

There was no question how he felt about eating the cake . . .

(Two side notes: Why don't I have an adorable photo of both children with their cakes, which were actually on the same table as the song was sung? I don't know, crazy night, wish I did. Sophie looked cute and 2, though. Also, I thought I would save time by buying canned frosting instead of making colored frosting and putting it in the bag to pipe words on the cakes. Big mistake . . . the frosting comes out of those cans at 120 miles per hour, and is impossible to control. So it looks ghetto, but the toys on top were all Noah and Sophie cared about, so whatever.)

Present time . . . he loves this car from grandma. I'm pretty sure his initial reaction of sucking on this shirt meant he loved it, too.

Our visit to the doctor revealed that he's still tall, but not as chubby as you think. He's 31 inches tall, 90th percentile, and 23 lbs. 6 oz., 50th percentile. Another scale said he's 24 lbs, 6 oz., but when I weigh myself I always go with the lowest number, so I guess I can do that for my son.

He also has become quite talkative lately. He loves talking on the phone, whether it's a real phone and a real person, or a calculator, a remote, a spoon, some goggles . . . usually it's a bunch of, "Be, ba, ba, be? Ba da bee de!" However, lately he's been trying to say other things. Adding to his "mom,mom", "dad,dad," and "uh, oh" are "dog," "ball," "night,night," "thank you," and "Jo" (Josh). No, none of them are perfect, but it's fun to see him try new things out. Also, once he said, "bath" as clear as day, but Gary and I think he must have gotten lucky.

He's really got a little personality, loving to dance, clap, listen to music, play games like peek-a-boo and tickle, torment Josh by running around with his binky, color with sidewalk chalk in between bites . . . all the good kid stuff. This is a really long post, but turning one deserves it. How often does one go from totally helpless to full of fun in one year? Love you, Noah!

Help Team Maddie If You Can

My family and I have recently joined Great Strides, an organization associated with the Cystic Fibrosis Foundation. Basic deal is we walk for the cause, try to get people to donate to the cause, and millions of dollars later the disease is cured. Hooray!

If you have a dollar or two or a million (doesn't hurt to ask, I mean, some people have a million) that could go towards cystic fibrosis research, there is a handy widget on the top right side of my blog. You just click, donate, then feel good all over. (If you donate, don't scoff at my low goals . . . I am afraid of fundraising.) The walk for this year is on Saturday, so we're getting into this late in the game, but at least I'll donate, so it should be fantastic! I'll leave you with a little inspiration:

I Finally Get Back To The Gym And . . .

- During the first class I attended, I realized I smelled very strongly of bacon. Yes, I am dedicated to health!

- During the second class I attended (this morning), the instructor told me I should suck in my belly so my belly button is going in toward my spine . . . I have a feeling my belly button and spine won't be seeing much of each other for a while.

- I did not die!

Oh, why has it been so long? Because the gym won't accept babies under 1, which I did not know when I signed up while pregnant with Noah. The fact I told the owner when signing up that the daycare was my sole reason for choosing his gym, and he knew I was pregnant, does not phase him. I must pay, pay, pay, so now that Noah is 1, I must also work out.

Not Just Another Post

Depending on how you look at it, sometime this fall our home will feature something like one of these:

Confused? Got a lot of questions? There are three posts I have been hiding for months that should answer anything you wonder. You can find the first one here, the second one here, and the third one here.

"Getting Free"

Look, it's a boy! A little baby Josh, who burst on the scene unexpectedly early 3 years ago. Josh likes to talk a lot lately about when he was born. I told him about how the first time I held him he stared right at me. He seriously stared right into my soul, like he was sizing me up. I felt like he was determining if I was a good enough person. Ever since I told him that story a couple of weeks ago, Josh will say, "Remember when I was a baby and I looked at you like this?" And he'll look right at me, but it's funny with his little grin attached.Then suddenly he was one, loving his birthday party, but shy to be the center of attention once the cake came out.

The second birthday really made an impression, because he has talked about this cake ever since then. He was so excited to get a new bike he kept saying, "Thank you, dad, thank you," over and over.

The second birthday was such a big deal to him he has been planning on the third birthday for months. He sung the birthday song, had us all practice blowing out candles, and told me quite often, "Right now I'm 2, but on my birthday I'm getting free (3)." I'm pretty sure he expected to literally be bigger on his birthday.

Well, the big day arrived, and even though it was low-key, I don't think it was a disappointment to him. I love little kids! My mom invited us to her house for his birthday so we could all celebrate together. There's nothing better than cousins to make Josh happy, so it all worked out. It all started out with a waffle breakfast made by my dad. In this breakfast picture I said, "Smile like it's Josh's birthday!" and this was the result. (Sorry, Tate.)

Josh played with his cousins outside all day, so much so that he got blisters on his nose from sunburn. Oops. Josh and Tate decided drinking water from bowls would be a great activity to keep the party going right.

So this year's cake wasn't as adorable as last year's Elmo, but it looks like he still loves it, right?

Finally, the dream coming true . . . (Was it mean to spread the candles out so, or did it just keep the dream alive longer?)

He was excited about this gift from grandma (Gary's mom). He's been building with it ever since.

Gary and I gave Josh these trucks. When he opened up the package he said, "Holy cow!" and then he saw that it came with a hard hat and said, "Oh, a hat, too!" He knows how to make his parents feel like a million bucks. (He also loves his jacket, shirt, and swimming pool from grandmas, by the way.)

Oh, Joshy, I love you so much. You make me laugh and smile every day. I hope that when you sized me up that day 3 years ago I seemed up to the standard of being your mom, because you are a precious gift to me.

Bonus Josh stories from the day:

We took Josh to a community baseball game because my brother in law in on the team, and Josh loves baseball. He loved pretending to bat while the real batters where hitting. A lady saw him and thought it was cute and asked, "How old are you?" Josh looked up at me like he was trying to make sure it was okay to say what he was planning to. I gave a smile and he proudly said, "THREE!"

I took Josh (and myself) to the bathroom at the game. The bathroom door was bolted open, and I foolishly chose the stall that opens right in front of it. The door locked, so no big deal, right? Well, when it was my turn Josh unlocked and opened the door wide open. I was panicked, "Josh shut the door or everyone will see me going pee!" And I slammed it. As soon as I let go Josh opened the door and yelled, "Hey, everybody, don't watch my mom going pee!" Gary said, "Oh, man, that's the oldest trick in the book." Thanks, guys.

Arizona Knows How to Party

While trying to title this post, for some reason a certain Tupac song (um, the only one I know) kept running through my head. Trying singing it - Arizona has the same number of syllables as California, so it's a perfect head-running classic . . . um, yeah, so we went to Arizona last week! Gary's brother Christian and wife Candacy live there with "Josh's cousins," and have for two years, so we finally snuck an opportunity to go down and see them. I had never been to Arizona beyond driving through the corners, so it was fun for me to see what it's all about. Surprisingly, I did not hate the heat. There's plenty to do to beat it, and swimming to avoid the heat is fun, much better than going to McDonald's playland to avoid the cold, so I say hooray, Arizona!

Anyway, as for the visit . . . we went swimming at the pool and in the back yard, went out to dinner, got to see our nieces in their end-of-school shows (cute, for real), visited the "ice-cream store" (that's Josh lingo for Coldstone), celebrated Mother's Day (two Dads are better than one when giving Moms a break), went to "the movie place and ate popcorn and soda in the dark" (quote by guess-who), and got to talk lots with our awesome and very welcoming hosts. Oh, and bonus: Got to watch Deadliest Catch, which we have been missing due to my axing of most of our channels. (Gary might think watching the Laker games was more of a bonus- ESPN got axed, too- but Gary has yet to get me to care about the Lakers, sorry hon . . . and go Jazz.)

Here is Josh with Sydney in their princess pool. Sydney is so good with Josh, he really adores her, and does not at all mind that the pool is princess-emblazoned. Sydney even listened to Josh when he starting going off about the time he went to a basketball game with Dave . . . thanks, Syd. This contraption in their back yard was Noah's dream come true. Yeah, we got a list of ideas to get for our kids now . . .

Here's Jill and Josh at the splash pad. Besides sharing a common first-letter, they also share a love of silliness, so they get along. He still talks about how Jill misses him.

Noah loved the splash pad, too, and did not mind getting in the water one bit.

This tunnel was Josh's favorite feature at the splash pad. He said when he runs through it "it is so awesome." He didn't know the names for the other water features, so in classic Josh fashion he made one up. Me: Josh, what were you doing just now? Josh: Running with Jill in those pazizms.

Josh and Leah loved riding on these plasma cars together. Leah also loved playing with Noah, and Noah thought following her around was a hoot. Click here to see how Leah likes to pretend she's Noah now. (Oh, yeah, Noah walked more than 3 steps for the first time on Mother's Day. I think it was about 10, but now he's starting to really go.)

On the way home we drove over a very small piece of the Grand Canyon. It was a first in all of our lives, so we stopped to view the beauty. I look nutty in this picture but Noah is funny and the scenery is great. The sacrifices I make.

Gary and his boys enjoying a rest at Navajo Bridge. Very pretty stop.

And then we made it home safe and sound, the end.

The Easter Blessing

This is my niece Madeline with my parents on her blessing day. Isn't she adorable? She was blessed on Easter Sunday, so our festivities were spent with my family. I posted earlier about how there were concerns about Madeline's health, but never followed up on that. She has now been officially diagnosed with Cystic Fibrosis, and I want to get out some of my thoughts about it, but first a little bit about the Easter frivolities. All the cousins on Easter, looking great in their Easter best, except Gary and Emily's kids . . . it seems they were given new shirts from San Diego by their grandmother, and couldn't wait to wear them. Oh well, I still think they're cute, and I am amused that Josh is the gorilla amongst the church-goers.

A little egg-dying action. (Nope, can't wear a shirt for that.)

Noah celebrated Easter by crawling around trying to get people to feed him. Everyone obliged, so it was a great day for Noah.

The Big Egg Hunt.

Easter was a very sunny day, but even so Sophie and Josh found a puddle of water to play in. It was hilarious to me because the puddle was so small but they were determined to take advantage of it.

I was there, too! Here's Josh's bounty, and also his face while saying, "Cheeeese." I'm trying to think of a word that will bring about a different expression. Then again, I like this face.

Now a small digression. Madeline was officially diagnosed with Cystic Fibrosis about 3 weeks ago. When my sister called to tell me, I started out by trying to list all of the positive things I could think of, but then just stopped and said, "This really stinks, though, go ahead and cry." So she did. And I did. I cried on the phone with Sarah and afterwards, because my poor little niece has a lot to deal with in life, and because my poor little sister was crying about her baby. I was able to dry my tears and have a fine evening, but then woke up with a start in the middle of the night. Josh has had a lot of digestive issues in his life. I have a 50% chance of being a CF carrier . . . could Josh have CF, too? I was gripped with panic. I shot out of my bed and ran to Josh's room to lick his forehead. (One of the symptoms of CF is that they taste salty. Licking the child's forehead is something parents are actually told to do when CF is in question.) Josh passed his 3 a.m. lick test, which should have made the whole thing amusing to me, but it wasn't. I was sad to hear about my niece having the disease, but the thought of my own child having it was a dagger to the heart. I realized at that moment that not only is my sister going through more than I can imagine, but that none of us can really know what others are going through unless we experience their sadnesses ourselves. To that degree, I want to be a better listener, a better helper, and extend more sympathy towards others.

Which brings me back to Easter. Although we didn't know exactly what was wrong with her at the time, we knew there was something. And as she was blessed that Easter Sunday, I felt a special significance in the occasion. Madeline's body has a lot to deal with right now, but it won't forever. Easter is about the resurrection of Jesus Christ, which makes it possible for everyone to have their body forever someday, free of problems. So in the long run Madeline's body will be as perfect as her little spirit. My sister and her husband are doing much better with this whole thing now, and we know that Madeline will have a great life, pretty close to normal. But whenever there are problems, we can be comforted by the promise that has been extended to all, that we celebrated on the day of her blessing. Someday all of the physical ailments will be gone and death will no longer separate us from loved ones, because Jesus Christ was resurrected. That is a reason to celebrate!