HAPPY EASTER from Jonah!

let your light shine

Jonah wanted to play "Sunday School." He grabbed a toy light bulb and came up with this completely on his own. The first time, which I didn't catch on video, he even talked about the Holy Spirit living inside us. He has more light inside him than he thinks. :)

a sweet mercy

I have had a really hard time this week dealing with some of the things Jonah/we aren't getting to do/be a part of because of his EB. I have been bitter and resentful and really struggling. And even though I was being ungrateful and overly dramatic, God gave us a special treat today and I'm so thankful. We went up to Stone Mountain today with my Dad, Maw Maw, and Paw Paw. We went to the falls there (knowing it would be about 15 degrees cooler and bearable for Jonah). Although I had pre-discussed with Jonah that he couldn't get in the water because of his bandages (I had no way to do dressing change if he got wet) and he agreed he would be happy just watching, he got pretty sad once we got there. He, all of a sudden, got a really sad look on his face and when I asked him what was wrong, he said, "I just see all those other kids having fun and I wish I could have fun like that too." So you better believe I grabbed his hand and we headed straight for the water, bandages and all. He got a few extra blisters because of it and his bandages got soaked and filthy, but we just put a towel in his car seat, let him stay soaked for a few hours till I could get home and give him a bath, and the world did not end. So glad we got to experience life in this way. I grew up in the woods and going to the mountains and I have ached for him to have those experiences. Today was his first time ever in the woods! Thanking God tonight for possibly-bacteria-laden creek water, filthy sand-filled bandages, priceless memories, and sweet mercies.

(Don't miss the video. It's the best part.  )

Jonah talks about the box turtle

He didn't really get going till the 45 second mark so feel free to skip to there. My phone started ringing so I missed the part at the end where he emphatically said, "Don't EVER go out in the road to help a turtle. Go inside and call your MOTHER OR FATHER for help!"

jonah talks about the bearded dragon

Jonah had "Creature Teacher" today at school, and she brought a Bearded Dragon for them to see. He learned a lot. As you can see. If you can believe it, it was even cuter the first time he told us, when he wasn't on video. Love this kid.

g's first food!

G had his first real food a couple of days ago. Carrots! They were a raving success. Here we go, into the land of baby food - I can't wait! I'm going to make my own as much as possible, and going as organic as possible, when reasonable. Trying to make some changes around here. Slowly but surely. :)

And here's a cute video of Jonah and his newest rendition of "Twinkle Twinkle Little Star." With a word change, just to keep you interested. "How I wonder WHERE you are." ??? Genius.

praise

Jonah requested to hear this song first thing this morning. Sometimes you just gotta praise, ya know? I fought back tears the entire time and have been praising God all day.



Sometimes He's so close, you can feel Him right beside you. Takes my breath away.

catch!

What we've been up to this weekend. Lots of laughing involved.

Confused about how to work his eyelids independently from his mouth...



Progress!

"i wanna hear 'up in the sky low' song"

He is the COOLEST kid EVER.



Can you even handle it???

home, important info, video cuteness

Hi Friends! We are home! We had a great time, but yesterday was kind of a long day. Our flight was scheduled to leave at 4:30, so we got to the airport around 2:00 to make sure there was no issue with our luggage or getting through security. Jonah had two "medically necessary" bags, his "medically necessary" massage table, and lots of liquids (his g-tube feeds and meds), so we weren't a simple airport case. :) We had a letter from our doctor, so things went pretty smoothly, but we just wanted to allow extra time.

Anyway, things went well, so we were at our gate by around 2:30. Like I said, our flight (United/Continental, if you are wondering) was scheduled for 4:30. Then we looked up and departure was at 5:00. Then, departure was scheduled for 7:00. Then we had to switch gates. Then it was scheduled for 8:00. Then, much to our (pleasant) surprise, it was scheduled for 6:35. Then we had to switch gates again. Then it was back to 8:00. Then 8:30. Then 8:50. We took off around 9:30 or 9:45. Add in about 492 bathroom trips with a toddler, and it made for a long afternoon. But Jonah was amazing and handled the seven hours in an airport better than most adults I know. (I complained about how cold I was a lot and eventually went to buy a $10 pair of fuzzy socks from the news shop.)

Jonah fell asleep on the plane. And then I had to wake him up. Then he fell asleep at baggage claim. Then I had to wake him up. Then he fell asleep waiting on Daddy to bring the car from the long term lot. Then I had to wake him up. Then he fell asleep in the car on the way home. Then we had to wake him up - to put on his night tube and to drain blisters. He went ballistic. NOT PLEASANT.

We got him in bed around 1:00am and we finally got to bed around 2:00am. Needless to say, we didn't make it to church this morning. Shwoo. We had a GREAT time, but we finally got unpacked this afternoon (after all having two hour naps), are settling in (while blogging, doing laundry, working on 5K stuff, answering 5K emails etc.), and are thankful to be home.

I wanted to let y'all know two really important things (stick with me, video cuteness at the end).

1. If you are walking or running on Saturday at Jogging for Jonah, you can get your race packets and t-shirts on Friday night at Omega Sports at the Thruway Shopping Center from 6-9 pm. Or you can pick them up race morning, you'll just need to arrive a little early. 5K sets off at 8:30am. Fun Run at 9:00am.

2. We will be on the Fox 8 10:00 news tomorrow (Monday) night. They will re-air the segment on Tuesday morning and we will be in studio on Tuesday morning at 7:45. If you're interested. I'm currently pretending the in-studio part is not happening because I don't want to vomit... or think about having to contain my three-year-old on live television.

Okay, here's the video cuteness I promised.

This one is of Jonah on the big famous keyboard (the one from the movie "Big") at FAO Schwarz.



And this one is from tonight. Somehow in our youtube pursuits tonight, we stumbled upon this video. It made Jonah CRACK UP. These are the moments that make my day. :)

fight back!

Thanks to my friend (and huge EB advocate), Christie, for this amazing video.

In honor of the (at least) eight children who lost their lives in a short 14 weeks. You are missed and never forgotten. We'll keep fighting.



To register: click HERE.

To donate: click HERE.

the circus!

Last weekend, we decided to go to the circus. Matt and I were out on a date (woohoo!) on Saturday night, realized the last day of the circus was the next day, and I really really wanted to take Jonah. He had a vague concept of what the circus was, but I really wanted him to be able to experience it firsthand. Matt and I talked and talked and stressed and talked about how to make it to church in the morning, do new wraps, get Jonah napped, go to the 5:00 circus and somehow feed him dinner. Finally we figured out the best thing to do would be to do wraps before church, church, early breakfast, early nap, leave at 3:45 for the circus, and then start his tube feed in the car as soon as we got out, around 7:15. It ended up working out well, but it is just crazy what we have to think through to be "spontaneous." :)

Anyway, Jonah did pretty well, but he got restless the last 30 minutes of the first half. There was cool stuff going on but just not loud or big enough to keep his attention. He loved the second half though because that's when the elephants came out and the motorcycle guys. He was a happy boy!

A couple of short videos.

twinkle twinkle little star

jonah's first choir performance

This post is mostly for our family who missed seeing Jonah "sing" in his first preschool choir performance this past Sunday. He was super adorable and completely captivating. Well, to me at least. I suppose that's how all the mommies feel.


The kids (ages 2-5) learned and sang two songs. They sang them at the end of the first service and at the very beginning of second service. We didn't catch it on video but when they first came out the first time, everyone got quiet, Jonah caught my eye, and yelled really loud, while waving, "Hey Mommy!" The whole congregation burst out laughing and it was one of the sweetest moments of my life.


To some, these videos may be boring. But to me they represent dreams I never allowed myself to envision. They represent the hope and joy that is ours because of the good God has brought out of the sorrow. They represent our new dreams. The best kind.


We praise God for this. He has brought us so far.


"Celebrate" (first time)



"Happy Birthday, Jesus" (first time)



Jonah coming out the second time.



"Celebrate" (second time, with a shout out to Nana)



Jonah losing it during "Happy Birthday, Jesus."
(AKA the most pitiful thing you've ever seen)



The little girl screaming her lungs out there in the middle is Maddie, my good friend Monica's daughter. God bless her little heart. This video is going to embarrass the mess out of her someday. It's going to be awesome. :)

jonah sings

These videos are from some time early last week. I really wish I could get him talking on video, and some of his grown up phrases, "I don't know either," "Good job, Guys!," "We did it!," "I can't (don't) want to," "Don't worry. Iss okay," and so on, but those come up in conversation, so it's hard to get on tape.

Here are some of his favorite songs though.

I thought it was "Skidamarinky" and then found out, when looking up how to spell it, that it's actually "Skinamarinky," so please excuse my mutilation of a completely made up term.

"SkiNamarinky"


The only way I could get him to really sing was by turning the camera screen toward him so he could watch himself, which meant I couldn't see where I was filming, so please excuse the shakiness.

"Itsy Bitsy Spider"


"Jesus Loves Me"


"Jesus Loves Me" Outtake (HA HA HA HA HA! - It's like this ALL the time.)

trick-or-treat

I took Kathryn out to dinner tonight for her belated birthday celebration. We went to Ghengis Grill, and it was super delicious.

While I was gone, Matt taught Jonah how to Trick-or-Treat. Although we took him last year, he couldn't walk and doesn't remember it, so he needed a refresher course in proper walk-down-the-street-to-random-houses-and-ask-strangers-to-give-you-candy etiquette.



True, he doesn't eat candy... or much of anything, but we can eat his candy and it's just too cute not to go. You'd give a few pieces up to the parents who made this cutie, wouldn't you?

It's for a good cause.

me complaining with some cute videos at the end

To say that Delilah did a poor job sharing Jonah's story and telling how great Brenner is would be an understatement. We listened to her show for two and a half hours all for her to say the following in about ten seconds:

(the transcript from last night, which is posted on her website today)

We all imagine babies being born with the softest skin,  and swaddling them in soft baby blankets as soon as they come into this world. In my travels and time with the doctors and nurses working with  Children's Hospitals and Together For Kid's, their national organization,  I've come to know it doesn't always work that way.  Take little Jonah for instance;  He was born with portions of his little body  without fully developed skin, let alone soft skin. Doctors at Brenner children's Hospitals went to work immediately  on finding the right proteins to feed Jonah. Now he's two years old and  living at home, with his parents so convicted to care for him and so  grateful that God chose them to be his parents. The support that families receive from Together for Kid's hospitals across  the nation is one of the wonderful things I observe when I visit.  You can support that with a gift of $10 by texting to a certain  number from your cell phone. Write this number down: 8-5-9-4-4 When you text "T and the number four and the word 'Kids', to 8 5 9 4 4,  and reply with the word, 'yes', you make it possible for Jonah and many  other children to receive this kind of miracle treatment. Thank you for doing so! Um, WHAT? The doctors immediately started working on proteins to feed him?  No mention of EB, blisters, bandages, or the great job Brenner did  (and what they really did) to help him. Anyway, it's just frustrating because  I read and approved the great story Brenner put together and submitted. And it  seems like they just didn't even take the time to read it at all. I just feel like  she had an amazing opportunity and a big responsibility to make a difference  and could have really made this story and the other one she told (in which she  called the child, Nathaniel, "Nathan" on the air) very powerful and raised lots of  awareness and money for the children's hospitals. Oh well.  On to other things. Even though I get frustrated with being at home all the time, even though  most of our weeks we only go to church on Sundays, to get my allergy shots  on Thursdays, and an occasional trip to Target or the grocery store if we're  feeling crazy, I'm still thankful to be at home. So I can treasure moments like  these. (jonah watching this video from his birthday last year) (jonah watching an episode of tom and jerry. this one's from today.)

jonah's letter sounds

I'm over due for some video posting. I'll try to do better. :) We've recently fallen in love with sesamestreet.org.



And this one is just some overall Jonah-in-his-sunglasses cuteness.

happy birthday to gabe

This video is turned the wrong direction, but I took it in the car tonight. 


The embedded video is not working for some reason. The link to the video on youtube is HERE.


We've had a good day. There were tough moments, as there are every year, but overall it was a beautiful day. I love taking time out to do specific things to celebrate Gabe's life. Thank you for remembering us and him in your thoughts and prayers. 

for daddy

Daddy, while you were at work today, I learned to sing a new song.



And also, now I've taken over your computer and am watching youtube videos of Tweetsie Railroad trains. I want to go to there.

Love,
Jonah