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. :)

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.

happy birthday, jonah!

My dear, sweet, hilarious, miraculous, tender-hearted Jonah,

Today you turn four years old... and what an amazing four years they've been. Jonah, we didn't know if we'd get even one year with you and God has given us an incredible FOUR! You are probably the most affectionate, compassionate, caring child I have ever known.

When people are hurting or upset, you are hurting and upset with them. When I told you a few weeks ago that your baby brother was sick, you burst into tears and cried, "But babies aren't supposed to be sick!" That's your heart, my sweet boy - constantly thinking of others.

You could dwell on your own pain and boo boos, but you don't. You focus on the fun and joy in life. You pray for others and then ask about them days later, when we're not even talking about them, wondering if they're doing better.

We could not ask for more, Jonah. Of course we pray for your healing and that God would take your pain away. And we will continue to ask and have confidence you will one day be healed. BUT, the struggles you've faced and the pain you know has made you who you are, and we couldn't be happier with who you've become.

You are so sweet and kind, but on top of those things, you have a silly, funny little personality that goes along with a smile that lights up a room. You keep us laughing and we DAILY recount stories to each other of the hilarious things you've done and said. Thank you for being such a bright light in an often dark world!

You love Jesus, Jonah. You talk about Him and ask about Him and credit Him when good things happen and when your boo boos heal. You know that one day we will all go live with Him and you won't have boo boos anymore. And you know that He lives in your heart and takes care of you... of our whole family. Your tender heart and love for Him is the greatest gift I could think of. So even though EB is hard and your "normal" is so much more complicated than most kids your age, you have come through it all with an amazing, resilient little spirit.

When you were born, we were so sad and scared and uncertain of your future. Many days all I could do was live in fear for your future.

Would you live? Would you have friends? Would you get married, have kids? But as time has gone on and we see how amazing you are, how wonderful you are IN THIS MOMENT, it's easier not to worry about your future. Because God is on your side, Jonah. He has called you by name, and you are HIS.

His hands are on you and I am certain a legion of angels still protects you. We are confident of your future, Jonah. Sure that God has a great purpose for your amazing life... knowing that He is not done with you yet.

We stand in awe of your life and what God has done every day. We are so thankful for you - for who you are and who you will become. You have a sweet spirit and an amazing heart, and people who meet you are changed, Sweet Jonah. Don't ever lose sight of what He has done and who you are in Him.

Lord, thank you for giving us Jonah. When I was pregnant you know that I prayed, "Lord, let him live so that he can praise you." And God, his little life sings out your glory every single day. You have answered our prayer. You are faithful and ever present and so clearly obvious in Jonah's life and in our family. We will always give you the glory for who you are and what you've done. Thank you for an amazing four years.

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.

snow!

We finally got snow here last night. I think we had about two inches. That was enough to warrant a work delay for Matt, so we got Jonah up and played in the snow before he left for work. I so wish I could post the photos of G here. It breaks my heart that I can't. Maybe that's why I don't blog much anymore. It's so hard to leave out such a huge part of our lives. Take my word for it, he is the sweetest, cutest, happiest little thing you'll ever meet.

Anyhoo, here are a few (cell phone) pics from today, and a video of Jonah sledding at the end. I know you Northerners are laughing at us right now, but we only get our two inches once a year (if that), and we milk it for all it's worth. :)

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.

halloween

We had a really nice Halloween. On Sunday we carved our pumpkin, and on Wednesday we trick-or-treated at about three houses and then headed to our church for a big carnival thing they were having there. It was extremely well done and amazing, and Jonah had a great time. I so wish I could share Little G's photos too. Just mark my words, he was adorable. Jonah was a fireman and G was his little dalmatian fire dog. But everyone kept saying what a cute cow he was. NOT A COW. I told him to wake up already and start barking.

Without further ado.

He smelled it, gagged, and then went to the other end of the deck until it was completely cleaned out.

Ahhhhh. That's better.

Matt cleans it out. I carve it. Marriage is all about compromise.

Maybe my favorite.

I love all three of my boys so much. I'm actually in Texas (Thurs-Sunday) for a girls' weekend. I'm happy to be here, getting a peaceful, fun, sweet time with my girls and Jesus, but I sure do miss them. Editing all these photos (and all of the ones with G and our whole family) didn't help. :)

cheese!

CHEESE!

playing cars with Jesus

Matt had a bad headache last night, so I told him I would put Jonah to bed myself. We included Daddy and his head in our nightly prayers. At this point, Jonah still chooses to repeat what I pray and hasn't really ventured into praying for himself. He was very concerned about Matt's head though and fervently repeated my prayer that he feel better.

After we finished prayers, we were just lying there talking, and started talking about God and Jesus and Gabe living up in Heaven.

Jonah: I want Gabe to come to my house.
Me: I know, Buddy, but Gabe can't. He lives up in Heaven with God and Jesus. And you know what? Someday we will go live up there too, with them.
Jonah: And God will play cars with me?
Me: I bet He would! Do you think that would be fun?
Jonah: Yeah!
Me: What cars do you think God would like to play with?
Jonah: (kind of starry voiced) Ohhhh, He play with Pretty Car (his Prius) and Recycling Truck and Grampa's Car (a little red car we have).
Me: Wow, Jonah! Those are some of your favorites. You would let God play with those?
Jonah: Sure He can!
Me: And what car is your favorite?
Jonah: Green Van!
Me: Do you think you would let Jesus play with your Green Van?
Jonah: How 'bout Jonah play with it first?
Me: Sure. I bet Jesus would be happy for you to play with it first, but then maybe He could take a turn?
Jonah: Sure!

I don't know what it was, exactly, about the conversation that touched me, but ever since it happened, I just can't stop thinking about the verses in Matthew where Jesus talks about humbling ourselves and becoming like little children - that the Kingdom of Heaven belongs to those of us who change and become like them.

Fast forward to an hour or so later. Jonah was still awake in bed and we had to go up for something. Matt's head was feeling better. When he walked in the room and went to hug Jonah, Jonah asked him if his head was feeling better. When Matt said that it was, Jonah, with excitement and sincerity, squealed, "I PRAYED FOR YOU!"

Matt and I were lying in bed a little later, and I said, "Is there anything sweeter than that? Having your three year old son say that he prayed for you?" Matt agreed that there wasn't.

And I just keep thinking about Jonah's prayers. That even though he's just repeating what I'm saying, coming from his no-ulterior-motive, pure little heart, how powerful they must be. I read in Exodus 33 the other night that God would speak to Moses face to face, "as a man speaks with his friend." And then I think about how Jonah wants to be in Heaven, face to face with God and Jesus so they can play cars together... like he does with his friends.

Oh, that I could get all the "adult" stuff - preconceived notions, my (limited, in-a-box) perception of who God is, selfish ambition, distractions, sinful thoughts, worldy things - out of my head, and just approach God as a child does. As a friend, talking to a friend.

I'm praying today to know God as a friend, for the ability to become like a child and approach Him with a new awe and innocence... and trusting that God, through his Spirit, empowers me to do so... that with the sacrifice of Jesus, we are able to approach God personally, intimately, and be His face-to-face friend.

Matthew 18:3-4 - And He said, "I tell you the truth, unless you change and become like little children, you will never enter the Kingdom of Heaven. Therefore, whoever humbles himself like this child is the greatest in the Kingdom of Heaven."


Matthew 19:14 - Jesus said, "Let the little children come to me, and do not hinder them, for the Kingdom of Heaven belongs to such as these."


Exodus 33:11 - "The Lord would speak to Moses face to face, as a man speaks with this friend."

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

He is the COOLEST kid EVER.



Can you even handle it???

jonah's life lessons

When life gives you forehead boo boos and makes you have to brush your hair straight up to keep it out of the wounds...

Just put on your "Rock" shirt and embrace the 'hawk.

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.)

slices of life, vol. 4

Because I want to remember these days...

Jonah adds an extra "en" in the progressive tense when he uses it. Examples: "Mommy cookening?" or "Car honkening!" etc. The other day he had a particularly bad bloody nose. We were having a hard time getting him to cooperate in tilting his head/pinching the bridge etc. When we were almost done, he said, in a sad crying voice, "All done boogerning!"

We went to the fair yesterday. When we were doing bath and bandages and Jonah would start being uncooperative, we would say, "It's okay, Buddy. We gotta hurry and get all clean so we can go to the fair." So this morning, as soon as I put him on the dressing change table and sat him up to take off his wet towels, he said to his Grandaddy and me, "Let's go, Guys. (Jumbled, incoherent words) go to fair!"

Any time Jonah feels an emotion that makes him whiny (fussy, grumpy, tired, mad, frustrated etc), he says, "I cared!" (I'm scared.)

Any time ANYONE coughs or sneezes around Jonah, he says, "Okay, Mommy?" or "Okay, Aunt Kim?" and so on.

Jonah wants to be just like his Daddy. If Matt is sitting in the floor playing with him, he usually gets a pillow to go behind his back up against the coffee table. Then, Jonah immediately goes and gets a pillow to put behind himself too. Matt wears a Wake Forest hat most all the time. Jonah insists on wearing Daddy's other hat (a Braves hat). Up until today, both have been Daddy's hats and Jonah would say he was wearing "Daddy hat." Today, all of a sudden, Jonah made it very clear that the Braves hat now belongs to him. He said, "Take it hat" when we were about to leave for Community Dinner, and Matt said, "You wanna wear Daddy's hat?" Jonah put his hand on Matt's head/hat and said, "Daddy hat." Then patted his own head with the Braves hat, and said "Jonah hat." Well then.

Jonah is trying to learn how to do a knock-knock joke.
Jonah: Knock Knock.
Other Person: Who's there?
Jonah: Jonah Lillams (Williams)

But it applies to other people too.
Jonah: Knock Knock
Other Person: Who's there?
Jonah: Granny Lillams/Kim Lillams etc.

Apparently Lillams is always the punchline.

checking in

Feeling pretty unmotivated to post tonight, but just thought I'd check in. Matt had a minor surgical procedure on Friday morning, so he's been on strict "don't walk except to get up and pee" rest since. I'm pooped with taking care of Jonah and all Jonah chores (drawing meds, g-tube meals, washing tubes and syringes, setting up for next day's dressing change, dressing change, picking up toys, night time blister draining etc) without a break. Jonah has been an angel but he's thrown up three times in the last two days (after barely throwing up at all in the last two months), so it's been a long couple days. Matt's recovering well though and he has been a good patient. :)

Funny story:

Background - One of the worst things Jonah deals with is itching skin when his wounds are healing. He takes Zyrtec in the mornings and Atarax in the evenings, and I use some creams and stuff to help, but no matter what, he has some days and moments where the itching drives him crazy. I will often times scratch his boo boos (most of the time on his fingers, heels or wrists) in a safe way to give him some relief. He really can't scratch because he only has two fingernails and does more of a dangerous rubbing against something. Anyway, when I scratch for him, you should see the look on his face. He smiles and laughs and says, "Scratch!" like I've given him the best gift in the world. It's really break-your-heart-cause-it's-so-sad-and-adorable-at-the-same-time sweet.

Anyway, I've tried explaining that Daddy can't walk and play right now, telling Jonah that Daddy has boo boo legs, just cause I don't know how to explain why he can't walk around. Anyway, when I first told him, Jonah walked over to Matt, said "Boo boo legs," and started scratching them for him. It was one of the sweetest things I've ever seen. It was the only way he knew to make Daddy feel better. I won't lie. I  teared up a little.

He is such a compassionate, affectionate little kiddo. Any time anyone coughs or sneezes, he'll say "Okay, Daddy?" or "Okay, Nana?" or whoever. When you get your mean voice and scold him, he'll rub your arm and say, "Iss okay, Mommy. Iss alright. I sorry, Mommy. Iss okay." He loves my friend Lindsey's little boy, Mason, who's four, and just hugs all over him every time he sees him. When his occupational therapist comes, after feeding therapy, they play on the floor and he is ALL OVER HER, wanting to sit on her while he plays. I love how sweet and affectionate he is. I really think he is going to have a beautiful tender heart. (But I'm also preparing myself for him to be the weird kid in school who pets his neighbors.)

Anyway, he's been very helpful with Daddy down, helping clean up his toys, helping feed Deac, and helping carry the trash from the bedroom to the kitchen. I'll tell him to go tell Daddy what he did and how he was a helper, and he'll squeal and run to the living room, so proud of himself he can barely stand it. I hope he always wants to help his Mommy.

Switching gears, I made Mongolian Beef last night for dinner, and it was A-MAZ-ING.

I found the recipe on Pinterest (have I mentioned that I love that site?), and it did not disappoint. Click HERE for the recipe. It calls for flank steak, but I used beef tips because that's what I had and it was super delicious. Let me know if you try it!

PS - We are in the western middle part of NC, so we are safe and sound but many of our Greenville friends have lots of damage and power outages, so please keep them in your prayers. Lots of flooding and I know the Northeast is about to get hit badly too. Praying that everyone stays safe. Don't take stupid chances!

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 new shirt

Today was laundry day. Jonah decided to try out Mommy's favorite, first-out-of-the-clean-laundry shirt.

It's WAY cuter on him. Just in case you were wondering.

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. 

jonah and his new train

My computer lasted just long enough for me to get these on a flash drive. Hooray!

He doesn't look this chubby faced in real life, but it's adorable just the same. :)