Before The Morning

in which i decide that dignity is overrated

2012-02-13T14:20:00.001-05:00

I get lots of compliments on my haircut. And I seriously love it. My hair-cutty girl, Shannon, is the bee's knees and does a great job. I love her. If she ever moves salons, I will just have to follow her around town... and pray she doesn't up and move to North Dakota or something. I love good hair, but I love not freezing my butt off even more.

Anyway, my friend Lindsey recently got her hair cut pretty short too and we were at her house the other night discussing our recently shortened hair. We both agreed that it's pretty rockin' but then she asked, "But does yours look CRAZY in the mornings?"

The answer, Friends? A resounding yes. I cannot believe how my hair looks in the morning when I wake up. It's bad every day but if I've put product in it the day before, it is OUT. OF. CONTROL. the next morning. Matt never says anything, but bless his heart, he's got to be holding it back. I don't know how he doesn't just laugh out loud.

Thankfully, on Sunday morning, I woke up and showered before him, so he didn't see me like I was. I woke up, looked in the mirror, and immediately saw this:

And then I immediately grabbed my phone, snapped a photo, and texted it to Lindsey. To which Lindsey replied, "What? I say wear it like that today. Put a little gel and hairspray in that hot mess and head out the door."

Why did I do it? Because honestly, there's nothing better on an early Sunday morning, than laughing at a friend's expense. Or your own.

So there you have it. I have no dignity left. You're welcome.

sciworks

2012-02-10T22:35:00.003-05:00

Yesterday, Jonah and I met Kathryn and the two cuties she nannies for, Juliana and Jasmine, at Sciworks, a children's science museum. It was Jonah's first time and he loved it. A couple weeks ago, I moved bandage changes to the afternoon (around 4:30, after nap) so that we could get out more. I'm excited about getting to go to story time at the library (something else we've never done), run morning errands, and hope to catch some of the cheap kids' movies this summer. Plus, as the weather warms up, the mornings may be the only time we can get out.

Jonah really wants to be active these days. Every morning when he wakes up, he asks, "Who comin' today?" Needless to say, I feel like I'm disappointing him when I say, "It's just you and me today, Buddy." :) So we were both happy to get out on Thursday morning.

(And yes, he finished his steroids Saturday night, his antibiotics today, and seems back to his wonderful, funny, "healthy" self.)

Sadly, all the walking around he did left a big blood blister on his heel and left other little spots on his feet. That was a bummer, but I think he'd still say it was worth it. He never even complained but by the time we were finishing up and headed to Daddy's work, which was nearby, I noticed he was really limping. Such a tough little guy. Just keeps truckin' along, without complaint, all in the name of fun. :)

PS. I really wish I had gotten a photo of the "biguana" (it really was a rather large iguana) that Jonah keeps talking about. He seemed unimpressed at the time, but apparently it made more of an impression than I thought.

Jonah!

2012-02-05T20:22:00.000-05:00

King of the Super Bowl!

christmas photos

2012-02-02T14:53:00.000-05:00

The last of the Christmas photos I never got posted. Yeah, I know it's February. So?

Manic Jonah

2012-02-01T16:08:00.004-05:00

Because Jonah slept late yesterday morning and we had to unexpectedly go to the doctor's office yesterday afternoon, I did not get to do his second dose of Pulmicort and Albuterol until 8:15pm last night. Apparently that, on top of his first dose of Prednisone I gave him at 6:15pm, was a little too much.

Jonah, 10:30 at night, after being in bed (VERY awake) for an hour.

Matt was at the Wake game last night, so for two hours I dealt with Jonah calling my name and wanting/need/exclaiming something every POINT two seconds.

After our normal nighttime routine, Jonah cried and fussed for about 20 minutes before I gave in and went up there for the first time. Mistake. This continued, some of it over the monitor, some with me up in his room, live and in person for two hours.

Jonah: Mommy, SING!
Me: (calmly singing) When peace like a river attendeth my way...
Jonah: Mommy, sing Jesuslovesme!
Me: (calmly singing) Jesus loves me this I know...
Jonah: Mommy! I wanna eat goldfish!

Later...
Jonah: Mommy! I wanna take a picture!
Jonah: Mommy! See that pretty light?
Jonah: Mommy! I wanna go downstairs!
Jonah: Mommy! I wanna play train table.
Jonah: Mommy! Who comin' today?
Jonah: Mommy! Wanna read books?!
Jonah: Mommy! I want my big pillow.
Jonah: Mommy! I need fresh water.
Jonah: Mommy! I went to the doctor!
Jonah: Mommy! I wanna get in the bathtub.

And on and on and on until he finally passed out at 11:30.

Moral of the story: No more Albuterol, Pulmicort, Prednisone combos after 6:00pm.

The End.

jonah update, again

2012-01-31T21:53:00.000-05:00

I just want to thank you all for the prayers and advice. Some of the things you've mentioned, I've tried, some I haven't but I'm always thankful for the tips. What do first time moms without blogs do when they need help? I have my very own advice/support network. :)

Last night was MUCH better. Jonah had one bad coughing episode and coughed on and off throughout the night but nothing like the five or six horrible episodes he'd been having the previous three or so nights. Honestly, I've lost track and it all just runs together. I just know I felt way more rested today than I have been. :) Instead of trying to tube feed him lesser amounts of his high cal/fat/protein stuff I normally give him, I took Owen's mommy's advice and tried some lighter stuff through the tube. So for breakfast and lunch he had a container of baby food granola mixed with a pack of cinnamon applesauce, duocal for calories, and some rice cereal to thicken it up. That made about five ounces, and he held it ALL down at both breakfast and lunch. For dinner, I strained the chicken chunks out of some Cream of Chicken soup and tube fed him six ounces of that. HE HELD DOWN ALL HIS FOOD ALL DAY. Praise God!

Things were really looking up, but around 11:30 this morning, he started looking worse and was running a 100.4 temp under his arm. The temperature scared me, because with all his coughing, especially at night, pneumonia was my first thought. I took him to the doctor at 3:00 and she quickly determined that he has a double ear infection, but no pneumonia. Praise God!

So now we're to continue his breathing treatments until his cough and congestion are better, on ten days of Amoxicillin, and five days of (evil) Prednisone. He's coughed less today, and it seems the neb treatments are definitely working. Praise God!

So except for dreading five days of Meany Head 'Roid Rage Jonah, things are looking up!

Thank you so much for your prayers! As always.

jonah update

2012-01-30T20:40:00.002-05:00

I emailed the doctor last night about the possibility of Jonah having Cough Variant Asthma. She emailed back saying that is what she was treating him for when she sent us home with a nebulizer, albuterol, and pulmicort almost a year ago. I didn't know that's what she was thinking he had... we never called it that. He had a horrible cough at that time but that was when his breathing had gotten so bad. So we came home with the nebulizer for that.

But I still have the nebulizer and I AM AN IDIOT for not starting breathing treatments days ago. I don't know why I didn't think about it except that I AM AN IDIOT. When we did breathing treatments last time, they were more for his horrible breathing, so I just didn't think about it for the cough. Grrr. I'm so incredibly frustrated with myself. I shouldn't have been so stubborn and arrogant and should have called the doctor earlier. Pre-nebulizer though, all they did was suggest Benadryl (which doesn't work for him) and I would just get so aggravated. Being humbled sucks sometimes.

Anyway, I started breathing treatments today (and LOTS of Mucinex). We worked three in and I'll work in a fourth if he wakes up enough tonight to cooperate. So far I can't tell much of a difference, but hopefully tonight will be better. He managed to hold down the four ounces I fed him for breakfast (I usually give him 6 to 8) but threw up all of the 5 oz (I usually give him 7 to 8) I fed him at lunch. I fed him another 5 oz at dinner, and so far so good. I thought he was doing some better this morning, but then he threw up his lunch and coughed ALL the way through nap. It was horrible.

He acts okay except for having moments of exhausted. I don't even think he knows what "hungry" feels like or is. I don't know how he's not starving though. He is worn out though and all he wants to do at nap and bedtime is just lie in his crib. He won't let me hold him upright and rock him to sleep and he won't sleep with me in bed so I can keep him propped up. And I try to prop him in his bed but he just wriggles his way back down to where he's lying flat. Poor thing just wants to be comfortable and sleep. His cough is so violent and he has bad spells of 10 to 20 minutes where he can just hardly catch his breath. And if he has anything on his stomach, he throws up. He hasn't thrown up at in his crib at bedtime yet (he did at nap time on Friday) though, because he's been throwing it up before he even makes it there. So if he can continue to hold down dinner, he may throw it up in bed, which would probably mean middle of the night bath/dressing change. So I'm just praying he can hold it down and the coughing subsides tonight. Nap was not encouraging though.

This is a photo I took with my phone right before lunch today. He was so tired, he had just rubbed his eyes like crazy. And then he couldn't sleep when it was time for all the coughing. It just breaks my heart.

And then he had this huge blister at dressing change time. (The white one is one from yesterday... the white is Desitin.)

So it was just an "EB sucks" sort of day.

Usually I don't get mad at God, but I'm having a hard time with this one. Being able to eat and sleep just seem like things you should be able to do. I don't know why it has to be such a struggle. I'm just so sad for him.

prayers for Jonah

2012-01-29T10:07:00.005-05:00

Will y'all please keep Jonah in your prayers? He's had a cough (no other symptoms, just a cough) for about two weeks now. It's gotten more persistent in the last week, and he hasn't been able to sleep well at nap or bedtime for the last four or five days/nights. Worse than that, he's thrown up every bit of food we've given him since Thursday morning. He just can't hold down his feeds when he's coughing. Thankfully he's drinking a lot of water and we're running Pedialyte overnight, so he's not dehydrated yet, but he's definitely not getting the nutrition he needs for his skin, or for anything, really. (And not the important part, but we sure are having a hard time keeping him clean/his bandages clean with all this throwing up.)

He had thrown up four times by 9:00 this morning. We've tried Delsym, Triaminic, some kind of all nautral honey based cough syrup from Whole Foods, and Hyland's Nighttime Cold 'n Cough for Kids. Nothing is even TOUCHING it.

struggling

2012-01-27T15:01:00.000-05:00

Struggling to know what to blog. Still so sad for Courtney and her aching heart. Just don't know what I could write here that's any more important than that. Everything else just seems so silly. Not ready for life to move on quite yet...

saying goodbye to tripp

2012-01-19T22:08:00.002-05:00

Well, I'm back home after one of the most difficult yet beautiful trips I've ever taken. Matt took me to the airport at 5:30 yesterday morning. I asked Matt to pray for me before I left. So he did.

And then I burst into tears.

I only had to wait a little while at my first gate, and so I caught up on Google Reader. I read this post by my friend Jen.

And then I burst into tears.

My flights were both on time and getting my rental car was fast and easy. I hadn't checked any luggage because I knew I wouldn't have time to wait on it, so I was out of the airport pretty quickly. I got my car and hit the highway. And immediately got stuck in stand still traffic. Instead of panicking, I called my sister and let her distract me. Thankfully it was just a right lane closure, so the slow down only lasted a couple miles and I was on my way. It was a 45 minute drive to Ponchatoula, and as soon as I got to town, I started seeing red balloons and ribbons on all the store fronts.

And then I burst into tears.

I got to the church at about 11:45 Louisiana time, reapplied my makeup, and went in. Lots of people knew me, even if I didn't know them, so I never felt awkward or alone. Except when some of them said it was like they were meeting a celebrity and that I was an inspiration. Then I felt awkward. And extremely humbled and undeserving. (Am I really still dooping you guys after all this time?) Courtney's Aunt Linda was one of the first people I met, and she immediately busted me through the (very long) line to meet Courtney.

And I finally got to hug my Best Friend I Had Never Met.

And then I burst into tears.

Y'all. Courtney is amazing. She is everything you would imagine her to be and a million times more. She is the most loving, sacrificial, caring, and courageous person I've ever met. She is exactly who I've known she was all along. And I hugged her a hundred times and told her how many people had asked me to love on her on their behalf.

She got up and spoke at the funeral and it was one of the most amazing, raw, vulnerable, honest, loving things I've ever had the privilege to hear. She was amazing.

And then I burst into tears.

The church was packed, and the mass lasted about an hour. We then drove to the cemetery. Along the way, there were folks dotted along the streets, wearing red and holding signs for Tripp.

And then I burst into tears.

They laid Tripp to rest in the local cemetery.

We prayed together and then headed over to the Knights of Columbus building for a reception (sounds like the wrong word). Anyway, I got to sit beside Courtney and really got to talk to her, Stephen, her sister, Tim, and some others in Courtney's family. The Delgados got to come too, so I got to meet Vanessa's husband and daughter for the first time, and I got to spend some short but sweet time with Vanessa. I've really really missed her.

She and her husband have their court date on February 2nd to adopt a little boy with EB. We hope he'll be home by late February or early March. I also finally got to meet Sam Sheridan, another EB friend, and her mom Marybeth. The whole trip was just so bittersweet. I'm so thankful to have gotten to spend time with so many wonderful people, but of course it was a sad reason to be together.

After the reception, I went and checked into my hotel and changed clothes and then went and spent the rest of the evening with Courtney and her family. I will treasure those hours forever. They meant more to me than I could possibly say. Courtney has such an amazing network of family and friends loving and supporting her, and I was so thankful to get to meet them all in person. I finally tore myself away around 9:30, went to the hotel, spent about 30 minutes with the front desk lady trying to figure out my door lock malfunction (don't ask), and finally got into bed. I woke up at 4:00 this morning, left my hotel at 5:00, and made my 7:00 flight no problem.

As a surprise to me, Jonah came with Daddy to get me at the airport (I thought he was going to stay at the house with Granny). I can't really describe how it felt to have him waiting there for me, yelling "Mommy!" to me as I came down the escalator. He hugged me so tight and said, "MOMMY! You're home!" I'm so thankful for his little life, but I don't understand why some kids live and some kids die. Some kids do alright, and some kids suffer so much. I don't know that it's guilt I feel, but it's just hard, if that makes any sense. I just ACHE for Courtney.

I was SO tired. Between the grieving, not sleeping well for a couple nights before I left, getting up at 4 something both mornings, crying all day yesterday, and traveling on four planes in 24 hours, I was worn out. I came home, fed Jonah lunch, let him play with his "surprise" I bought for him at the airport, and then we both took a two hour nap.

I am so so so very thankful to have gotten to go and thankful to Matt (who had to take off work) and his mom for taking such good care of Jonah. I love my people. Please keep praying for Courtney and Anita (her mom) and all of the friends and family who loved Tripp so very much. This is a long, hard road.

And thank you all for the prayers you said for me. I felt every. single. one.

going to Louisiana

2012-01-17T10:14:00.000-05:00

I will be flying into New Orleans in the morning to be there for Tripp's service. I tried to find a flight for tonight and was going to come home tomorrow after the service, but there were no affordable flights available to get me home tomorrow night. So instead, I'm flying out in the morning and will come back Thursday morning.

I have a small prayer request if you don't mind. My flight lands at 10:23, I have to take time to get my rental car, and the service starts at 1:00. The church is 45 minutes away from the airport with no traffic. Will y'all please pray for smooth flights, no delays, and no traffic jams? I would be heartbroken to miss the celebration of Tripp's life, and if anything goes wrong (as things are wont to do in the airline industry), I will be pushing it. I do have an hour layover in Charlotte so there is a tiny window there if my first flight is running late. I've never flown on my own (Matt is the pro in our family), never rented a car, and never been to New Orleans, so this should be interesting. I'm so happy I get to go.

On the one hand, I want to be there RIGHT NOW, am desperate to give Courtney a hug, and the next 24 hours can't go fast enough. On the other I'm anxious about leaving my family, being so far from Jonah, and sad about the circumstances under which we're finally getting to meet.

Everything in me aches for Courtney. Losing Gabe was hard. Losing Jonah after almost three years of knowing and loving him, of him being my LIFE, would be INFINITELY more difficult. I just cannot imagine. Will you please continue holding her up in prayer? I know she is glad that Tripp is not suffering and knows his life made a difference. But at this moment, I can imagine that those thoughts are not that much comfort after having just lost your life and breath.

I love you, Courtney. Continuously holding you in my heart, thoughts, and prayers.

a song for when it hurts

2012-01-16T07:44:00.001-05:00

This is my friend, Katelyn, and her husband, Derek. They go to my church.

It's a song for this very moment. Even when we're heartbroken, suffocating from the sorrow and grief, we still have a safe place. Hold fast. HE is there.

Sweet Tripp

2012-01-14T21:37:00.000-05:00

Tripp went home to be with Jesus earlier today. Please continue to be in prayer for Courtney and the rest of his family.

tripp

2012-01-13T09:41:00.002-05:00

In case you haven't read Courtney's latest post, Tripp has taken a turn for the worse and they think it won't be long now until he goes home to meet Jesus.

Will you please pray? For peace for Tripp, his parents, grandparents, and all who love him? And for comfort for sweet Tripp that he will be in as little pain as possible during these last days?

Courtney and I have had some sort of God-given connection from the beginning, and I feel like a piece of my heart is always with them, although we've never actually met. She texted me the other day and said she dreamed that we finally got to meet for the first time, and we hugged for 15 straight minutes. I'm pretty sure that's how it's going to go when we do finally meet face to face. I don't know why I included that part, except to say that I just love them so much, and my heart aches so much for the pain and suffering they are experiencing.

Tripp, you've changed my life for the better. You have taught us all so much about faith, courage, strength, and having a fighting spirit. I love you, Sweet Boy.

i got sucked in

2012-01-09T08:28:00.001-05:00

Just finished the third book last night. Now I can have my not-nearly-as-exciting life back. I felt the end was kind of abrupt and not nearly as developed as I would have liked. I have other thoughts but won't say them for those who haven't read. In a lot of ways I was frustrated with how it all wrapped up. Not that there weren't good parts, but it just felt incomplete somehow. Maybe I just wasn't ready to say goodbye to all my new friends. I always have a couple days of sad after I finish a good book series. Is that weird?

Other People:

Hey Patrice...
Have you heard that new song... ?
Did you read so and so's blog...?
Didn't you see I tweeted that...?
Have you watched the most recent episode of...?
Did you see such and such on the news...?
Did you run this or that errand...?
Did you put on makeup today...?
You haven't blogged in a while...

Me:
See, what had happened was I downloaded "The Hunger Games" on our Kindle. The End.

(And just this morning I found out that there are two more books. Dang it.)

AUCTION TIME!

2012-01-04T20:20:00.001-05:00

Hey y'all!

So it's time to start planning the third annual Jonah's EB Auction to raise money for DebRA (for patient advocacy and to fund research for a cure.) The auction will run February 24th - February 27th.

Katie posted this last night on Jonah's EB Auction Facebook page:

"To the generous ladies and gentlemen out there interested in making a donation for this year's auction: please contact me at jonahsebauction(at)gmail(dot)com. I will be collecting donations throughout January to prepare for the THIRD annual auction (February 24-27). I'm SO excited to see what this year holds. :)

If you'd like to help, but aren't sure what kind of items we are looking for, gift cards are always great because they sell and they cost next to nothing to ship. If you make jewelry, sew, or are an otherwise crafty person, we'd love to include your items! If you're still unsure, just email me at the auction address (jonahsebauction@gmail.com)."

We're afraid the Facebook updates aren't showing up on people's news feeds, even if you've "liked" the page, due to some of Facebook's new "improvements." So if you aren't getting updates, try going to the FB page, and liking and commenting on some stuff, and hopefully that will make it start showing up in your feed again. Also, if you go to your feed and sort by most recent stories, it may show up that way. And if you haven't "liked" the auction Facebook page, make sure you do! That's where we get the quickest updates, most communication, and play fun games all leading up to the auction.

Also, you can follow the auction (Katie) on Twitter (@jonahsebauction) to get updates that way too. (There will be a giveaway in the future and being a Twitter follower gets you an automatic entry! More to come on that soon!)

I CANNOT WAIT!

(Oh, and you don't have to be crafty or own your own business to donate. You can donate gift cards to restaurants, gas cards, grocery cards, popular DVD's, new children's toys/clothes, really anything that is new and reasonable to ship.)

Once again, thank all of you from the bottom of my heart (and Katie's) for making this annual tradition one of the most fun and most meaningful experiences I've ever been a part of.

LET'S DO THIS THING!

resolved, maybe?

2012-01-03T20:36:00.004-05:00

Did you guys make any resolutions?

Although I would claim not to believe in them, I do have a lot of things I want to accomplish this year. I've been wanting to accomplish them for a long time, but I'm feeling a revitalized need to force myself to be motivated. Is that ambiguous enough for you?

So here are the things I would like to get done soon(ish):
- spend 30 min to an hour a day studying the Word deeply (not counting my 15-20 minutes of daily reading I do before bed); be in communion with God; learn more and more who He really is, therefore discerning his will and lining up my heart with His (just bought a study bible and concordance with gift cards from Christmas. Super excited!)
- finish reading the "bible in a year" (I'm in November... almost done! Have loved it - I'm just slow. :) )
- get up every morning (except Sundays) to do a workout video or go for a run
- get a healthy amount of sleep (at least 7 hours a night, for me)
- organize my photos (there are thousands) and put them into iphoto; delete ones I don't need (hard for me)
- send in our wedding photo negatives to get digitized (if that's the right word)
- order, frame, and hang photos up our stairwell
- figure out what I want to do for the walls in our bedroom, Jonah's bedroom and living room (we've rearranged furniture and there are lots of bare spots); need cheap solutions
- get myself on more of a schedule, plan times for rest and naps (so I don't feel guilty when I need them)
- simplify, avoid over extending, slow down and enjoy the life God's given us
- finish our licensing stuff for adoption through foster care (almost there... dragging my feet)
- learn to play the guitar (I started last summer but have let it slip)
- make relationships a priority
- potty train Jonah (really really really dreading it)

So anyway, that's a lot of stuff. I actually made a daily schedule for myself to help me feel more motivated and to help with my depression. I've been on an antidepressant since November a year ago (not an easy decision but a prayerful one and one of the best I've ever made), and it has definitely helped me, but I feel like it's kind of wearing off. I figure a lot of that has to do with the fact that the days are getting colder, it's darker so soon, I'm not making time with God a priority (not feeding my soul), have horrible eating/health habits, and I've stopped running. Anyway, I work hard in the mornings feeding Jonah, mixing his meals, doing bath, and changing his bandages, but then I just feel like I crash and don't do much of real substance for the rest of the day. Some days I feel like that's okay, but my personality requires that I be somewhat productive to feel content. Right or wrong, that's just what I know about myself.

So the schedule I'm trying (not that you care, but I need to record it) is:
6:30-7:30 Workout
7:30-8:15 shower, get dressed/make-up, prep Jonah's breakfast
8:30-9:00 sit down and eat with Jonah (Jonah finishes at 9:30)
9:00-10:00 unload/reload dishwasher, fix meals thru next day breakfast, draw up meds for the day
10:00-11:30 bathe Jonah, do bandage changes
11:30-1:00 let Jonah play, actively play with him, chores, phone calls etc.
1:00-1:20 sit down and eat with Jonah (Jonah finishes at 2:00)
2:30-3:30 get in the word, study, pray (Jonah napping)
3:30-4:30 chores, projects, answer emails, nap if needed (Jonah napping)
4:30 get Jonah up, go for a walk if not too cold
5:00 start dinner; fold dressing change laundry load
6:30 eat dinner

So anyway, that may be a little insane, but it's what I need right now, and today it worked really well. Except that I DID take a nap and I slept longer than I meant to so I'll probably be up till 2 am... which is totally going to mess up my 6:30 am workout (which I (un)affectionately refer to as "Death by Jillian").

I'd be interested to hear what y'alls goals are and your plan to not punk out. I'm a major punker outer.

I read Ann Voskamp's blog every day, and her post yesterday was amazing. I hope you can go read it if you have the time.

But as I thought about my "New Year's non-resolutions," I really appreciated this part:
"Contentment isn’t a state of organization, a weight on the scale, a state of better:better kids, better marriage, better health, better house. Contentment is never a matter of circumstances; contentment is always a state of communion — a daily embracing of God. A thankfulness for all the gifts – and moments and life, just as He gives it. Trying harder may only bring harder trials and contentment, it won’t be be found in the resolutions, but in the revolutions – in the turning round to God."

No matter what goals I have and what does and does not get accomplished, God is number one. And it's the continuing to turn back to him that is MOST important. Praying that I keep that in mind when the freshness of the New Year and renewed aspirations wears off and I'm left with the same old same old reality. God lives there too. And my contentment can be found right there, with Him.

slices of life, vol. 5

2011-12-29T18:45:00.001-05:00

Several months ago I put some crackers out on the ottoman for Jonah. When I wasn't looking, Deac put his front paws up on the ottoman and started eating them. I said, “No Deac. Gross!” Jonah started yelling at Deac, going “Deac. Gwoss!” “Gwoss Deac.” I cleaned up the dog eaten crackers and put new crackers out for Jonah. I turned away and when I turned back Jonah was knocking them off one by one while Deac ate them off the floor. As Jonah fed them to Deac he was saying, “18, 15, 20, Good job!”

Matt was singing and Jonah said, “No, Daddy. No sing!” I got on to him for being rude to Daddy and explained that he could sing if he wanted to. Then I made Jonah apologize. Ever since, when Matt or I sing and he doesn’t want us to, he just starts saying, over and over again, “I sorry, Mommy/Daddy. I sorry. I sorry.”

I was unintentionally ignoring Jonah the other day, thinking about something else. Becoming increasingly frustrated, Jonah says, “Mom! Mom! Mom! Bitrice!”

Jonah: Hey Mom. How you?
Me: I’m great, Jonah. How are you?

Jonah: GRAPES!

Nativity Updates:

12/2 We just read the Christmas story from Luke 2 out of Jonah's "Jesus Storybook Bible." We then got out his Little People nativity set and tried to act out the story. First he tried to put "Baby J" up on top of the stable where the angel goes, sang Rock a Bye Baby to him, and one of the wise men and then angel Gabriel himself broke out into an adorable rendition of "Itsy Bitsy Spider." Also, Gabriel makes a growling sort of airplane sound when he flies. Just FYI.

12/3 The Nativity Scene lasted less than 24 hours. Man down! (Well, actually it's woman down. The Virgin Mary is MIA.)

12/8 We found the Virgin Mary today!!! (cues Hallelujah chorus)

12/11 Joseph made out with a Wise Man and Mary, who he thinks has a towel on her head, has gone to "dry hair."

12/15 After picking up the donkey and kissing him on the nose 10-12 times, Jonah exclaims, "I KISS A DONKEY!"

Jonah, playing basketball on his little hoop, “I dunkening!”

Background: When Jonah has bad boos boos and open wounds, I always tell him I'll put a patch (an extra bandage layer with Polysporin and Desitin on it) and it will make it feel better.

Aunt Sarah brought her rather large dog, Charlie, for a visit over Christmas break. We gated him and Deac in my bedroom and Charlie started whining.

Jonah: Chahlie crying. Don’t woowy, Chahlie. I give you a patch.

Jonah, petting a very sleepy Charlie: Good night, Chahlie! Sleep types.

When eating Christmas dinner with my mom and sisters, Jonah was practicing coughing into his arm. He finally did it right and we all clapped. Jonah looks up, smiles, and says, “Thank you errybody.”

long day

2011-12-28T21:00:00.003-05:00

Today was a long but good day overall. My youngest sister, Shaina, has had a cyst in her throat for a couple years (although it only came back a few months ago) that she had to have surgery to remove today. She was intubated and the surgery lasted over an hour and a half, but things seem to have gone well. Thankfully it was an outpatient procedure, so after several hours in a room, she was able to come home.

She's tired, weak, and in some pain, but drugs are good, and we think she's going to make it!

I got to the hospital around 9:30 with Jonah (got up at 5:30 to shower, got him up at 6:15 to do new wraps and breakfast tube feed) and spent the whole day (until 3:30) chasing an almost three year old around busy waiting rooms. That's not true. I did take a 45 minute break to tube feed him in his stroller (that was sarcasm). He did well, but was FULL THROTTLE and never would settle down to watch shows or read books. Finally, at 3:30 he had reached his limit and we had to leave because he was being too loud and I felt like Shaina couldn't rest with us there. He was asleep in the car by 3:43. We got home a little after 4:00 and I let the car idle for almost an hour and a half, while we both slept in the driveway. Worn. Plum. Out.

Needless to say, I didn't want to cook dinner, so after Matt suggested frozen pizza, I suggested chinese food delivered. Because frankly, the walking to the basement freezer to get the pizza, getting out a pizza pan, preheating the oven, sticking it in, cutting it, and cleaning the pan were just too much. I told Matt that carbs delivered were the perfect fix to a long day. (And let me state here that I would never ever ever abandon my first love of Mexican food as my preferred carb loading sustenance, but alas, they do not deliver.)

Thankful Shaina is okay, and also thankful to have gotten to spend my Mom's entire birthday with her, even if it was in a hospital. Happy Birthday Mom/Nana! We love you!

christmas morning

2011-12-28T09:00:00.001-05:00

It worked out this year for us to have Christmas morning at home, so we had a slow, lazy day that was pretty perfect. Jonah's reaction to his train table was priceless and something I'll never forget.

"CHOO CHOO!"

And just in case you missed it the first time. Priceless.

He was not at all interested in his stocking after discovering the train table, so that had to wait until we sat him down for breakfast.

After a lazy day at home, Mom, Sarah, and Shaina came over that night for a dinner of steak, baked potatoes, roasted green beans, and sauteed mushrooms and onions. It was a good day. :)

christmas eve at mom's

2011-12-27T09:00:00.001-05:00

After we finished "new wraps" on Saturday morning, we headed over to my mom's house for Christmas Eve goodness.

After our delicious lunch, I wanted to read the kids the story of Jesus birth from Jonah's "Jesus Storybook Bible." I only include this photo to show you how much Jonah liked that idea. He went to the toy room and never looked back. Oh well. He let me read it to him that night.

Asher and Ainsley, my brother's kids, were super into it though.

If you don't have the "Jesus Storybook Bible," you need to go buy it RIGHT NOW. It is so so good.

Afterwards, we had some "Happy Birthday Jesus" carrot cake. Bought from scratch. Maybe I'll make my own next year. Maybe not.

Jonah being his sweet, cooperative, involved self. Ahem.

Waiting to open presents, playing with the train at Nana's house.

I was really excited about this gift for Mom.

A canvas of the four kids from our camping trip over the summer.

Jonah got lots of fun goodies.

We ate leftovers at Mom's for dinner and then headed home to set out cookies for Santa...

... and let Jonah open the couple gifts we had for him (two books and a Hallmark red caboose ornament). We had to save his new PJs for the morning, since he always wakes up soaking wet.

Little Red Caboose lasted about 15 minutes on the tree before Jonah decided he needed to take it up to bed with him.

Santa spent a LONG TIME later that night putting together train track. He and Mrs. Claus are not very spatial people, it would seem. Anyway, it was so worth it to see his amazing Christmas morning response. I just want to bottle this age up and keep it forever. I love the wonder and innocence.

christmas at dad's

2011-12-26T13:45:00.000-05:00

Around here, we don't ever have one day of Christmas. I like to think of it as more of a week long Christmas extravaganza. We had our first Christmas at my dad's on the 23rd, were at Mom's on the 24th, and had Santa on the 25th at our house (with Mom and sisters for steak dinner). Matt's folks arrive on the 29th and we'll have Christmas with them, and then another Christmas with Matt's grandparents and Aunt Melanie on the 30th. Yep, we like to stretch it out for as long as possible.

You know what that means. An inordinate number of Christmas photos. Please bear with me.

Without further ado, I present to you, Christmas at my Dad's.

She's up to something...

Nothing like jumping on Pop's belly right after a huge lunch.

Seeing my Paw Paw love on his great grandkids is about as good as it gets.

Sharing an orange (or six).

We weren't planning on putting Jonah down for a nap, but he woke up with a cold Friday morning, and decided he'd just put himself to sleep.

Sarah and her dog, Charlie. (Or Chahlie, as Jonah says.) One of the sweetest and most obedient dogs in history. Until he gets hold of a dog toy, and then he's ruthless. It's rather alarming, actually.

Opening gifts.

Um...

Jonah apparently decided to share his cold with Daddy and me for Christmas, so we're all a little snotty and tired around here today. Just trying to take it easy and rest. I don't mind it (the resting part, I mean. I could do without the cold).

Hope you all had a very merry Christmas!

jonah gets his train table!

2011-12-25T09:52:00.000-05:00

praise!

2011-12-25T01:16:00.000-05:00

Make sure you watch until the end. It's worth the wait.

O Night Divine when Christ was born! I tear up when I think of what this night was so many years ago. Praise be to God that He saw fit to humble himself to come for me, the scum of the Earth, a filthy sinner, so he could understand, empathize, redeem, save, and have victory over death.

The story never gets old.

Merry Christmas.

merry christmas!

2011-12-24T10:08:00.002-05:00

O Come, O Come Emmanuel

2011-12-22T08:55:00.001-05:00

God put this lady, my friend Terre, singing this song on my heart this morning. This video was filmed December 24th, 2009, while Terre was deep in her battle with terminal cancer. She went home in early September of the following year.

I encourage you to listen. So pure and beautiful. Terre was that way.

Praising God for beautiful Terre's life and her unfailing love for Jesus. And praising Him that she is celebrating Christmas with the Savior himself. Miss you, Terre.

the christmas parade

2011-12-18T23:23:00.000-05:00

The first weekend of December (I'm behind), we went to the Christmas parade in downtown Kernersville. My mom lives right on the parade route, so it's awesome to watch from there. Katie and Nathan were able to come with their two girls, and it was great to spend some time with them. And thankfully, the weather was MUCH warmer than it was last year. Still, Jonah got bored and caught Santa through Nana's window. :)

Jonah's reaction to Thomas!

oh christmas tree

2011-12-17T23:35:00.000-05:00

the Christmas story, revisited

2011-12-15T21:40:00.000-05:00

Y'ALL - I'm listening to some sermons that are completely revolutionizing the Christmas story for me. The Bible, for the first time ever for me, is coming to life and I'm seeing how God paved the way for the coming Jesus LONG BEFORE he ever came. It all pointed to Him. Always.

Beth Moore is doing a series on Living Proof on A Fresh Advent, which is amazing. You can listen to those here: http://www.oneplace.com/ministries/living-proof-with-beth-moore/
(The first one is great and the next one comes out on Monday.)

And one of our ministers posted a link to this one about who the Wise Men (Magi) really were, which was INCREDIBLE. Long, but so worth it.
http://www.gty.org/resources/sermons/2182/who-were-the-wise-men
(And I plan to go back and find the rest in that series.)

Sorry, I'm geeking here. God is so amazing.

twinkle twinkle little star

2011-12-13T21:13:00.000-05:00

new blog design and photos!

2011-12-12T20:24:00.004-05:00

(If you're reading in Google Reader, make sure you click on through to see the new blog design!)

Do you guys love it? I really really really really love it. My friend Colleen did it, bless her heart, and she claims she enjoyed it though I know I was a pain at times. I'm a little OCD. :) She's still tweaking some things here and there, but you're getting the basic idea. If you refresh a few times, you should see three different headers. I LOVE IT SO MUCH, Colleen. Thank you so very much!

And remember when you guys voted on Jenn's photo so I... err, Latrice could get her Christmas photos guilt free? Well, she won (woohoo!) and I, err... oh forget it... got some great photos minus the self-imposed guilt. So thank you guys for that. You're the best.

I thought I'd share a few (um, 20) of my favorites.

And this last one for kicks and giggles...

Jenn is amazing, so if you're relatively local to the Winston-Salem area and are looking for a good photographer, I highly recommend her.

Click HERE for more information and HERE if you'd like to see the rest of our photos.
Thank you, Colleen and Jenn, for this beautiful gift. I can't thank you enough!

family movie night

2011-12-11T21:43:00.002-05:00

The other night our advent calendar activity was to have a family movie night.

We had never had a movie night before, but it was so great. We put aside pulling up meds, mixing meals, taking out trash, laundry, setting up for dressing change, and a hundred other little things we could have been doing, and we sat down as a family and watched a movie. We don't do that enough. Rest. Relax. Love on each other.

Jonah did pretty well. He got down on the floor and played more than sat on the couch but he definitely watched as he played. We picked "Polar Express"since it has a train. And Matt and I hadn't seen it yet, so it held our attention too.

Such a good night.

jonah helps

2011-12-08T21:45:00.001-05:00

Last week, we put up our Christmas tree. Jonah decided to "help."

jonah's first choir performance

2011-12-06T21:29:00.003-05:00

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 and the nativity

2011-12-04T21:56:00.001-05:00

My statuses from the last couple days:

"We just read the Christmas story from Luke 2 out of Jonah's "Jesus Storybook Bible." We then got out his Little People nativity set and tried to act out the story. First he tried to put "Baby J" up on top of the stable where the angel goes, sang Rock a Bye Baby to him, and one of the wise men and then Gabriel himself broke out into an adorable rendition of "Itsy Bitsy Spider." Also, Gabriel makes a growling sort of airplane sound when he flies. Just FYI."

"The Nativity Scene lasted less than 24 hours. Man down! (Well, actually it's woman down. The Virgin Mary is MIA.)"

And then a friend directed me to this hilarious post about boys and nativity scenes. (The comments are worth reading too.)

The Wise Men in their underwear?

Baby Jesus as an action figure?

Mary as a weapon of self defense?

The whole holy crew stuffed in the back of a big rig?

Apparently I have many many years of interesting nativity drama in my future.

And pray for our sweet plastic Virgin Mary, folks. Who knows where she's ended up...

our advent calendar

2011-12-01T17:23:00.003-05:00

Last year, Kristy, over at Waiting for Happy, wrote this post about her awesome advent calendar. I thought it was a great idea. Hmmm, a Christmas season focusing on others and Jesus rather than ourselves and materialism. What a concept. I loved her calendar and loved reading her December posts about how God was working through their advent activities. He was certainly faithful to show up and I thought, nay, vowed, that this year, since Jonah is old enough to start getting it, I would do something similar.

Thus, I commissioned my friend Jen to "help" me create an advent calendar. Our conversation went something along the lines of, "Hey crafty, ever-so-talented, knows-how-to-sew, beautiful Jen, wouldn't it be AWESOME if "we" made advent calendars for our boys by next December?" She was all like, "Yes! Love the idea." But I know she knew that she would be doing all the work and I would be a slackpot full of big ideas and no help. But I also think she liked that I called her beautiful.

I'd also like to say that IF SHE HADN'T UP AND MOVED TO TEXAS (stupid Texas), I would have totally helped her, but we all know that's probably not true. Seriously, I had to add the dowel bar and ribbon and about had a coronary.

And without further ado, I'd like to present to you, the beautiful, magnificent, awesome Advent Calendar, that Beautiful Jen made for our family.

I know, right?

Instead of trinkets or candy, each pocket holds an act of family togetherness or service to others. One a day for 25 days. We worked on the ideas together, but Jen then went back and added a verse to go with each activity. She's an overachiever like that. Did I mention she's beautiful?

For example(s):

I'll put our master list down below in case you are looking for some ideas for things you can do this season to serve others. Whether it's a calendar or something else you choose to do, I pray we can all focus on Christ and what He taught and represented and not get so caught up in the "gimmes". And remember, God will always be faithful to show up. Always.

Master List:

Set out the family nativity scene and read the beginning of the Christmas story from Luke.
Make a snack together and have a family Christmas movie night.
Make and deliver a baked good for someone who isn't around their family for the holidays
Make dinner for a neighbor. Knock on their door and surprise them!
Every member of the family find three things (toys, clothes, etc.) in good condition to give away
Have a Skype date (with friends who may or may not have UP AND MOVED TO TEXAS).
Visit a nursing home, maybe take cookies and sing carols
Make handmade cards for your neighbors or loved ones you’ve lost contact with or shut-ins. Pray for them as you're making the card.
Have breakfast for dinner. By candlelight?
Put on a play of the Christmas story for Daddy and/or family and friends.
Invite someone over for dinner and/or hot chocolate and dessert.
Make a family traditional dessert and call the person you got the recipe from.
Drive around to look at lights and pray for your city.
Write a letter of encouragement/draw a picture for someone who may be having a particularly hard time this holiday season.
Babysit for a single mom or a couple who really needs a night out.
Discuss and start a family giving box. (http://www.familieswithpurpose.com/givingboxsuggestions.html)
Pick up trash/clean up as a family at a local park or in your neighborhood.
Make a donation (and take it in person!) to the Ronald McDonald house. Love on some hurting parents while you’re there.
Fill a bag or backpack with basic hygiene goods and a few snacks and give it to a homeless person in your community.
Go through your books and collect some to give to a reading program for needy children.
Give some money (even if only $10) to someone in need. A neighbor, homeless person, or just a friend in need. Or pay for someone’s meal anonymously.
Do a random act of kindness for someone you don’t know.
Have a birthday party for Jesus.
Send your used shoes to Reuse-A-Shoe. (http://www.nikereuseashoe.com/get-involved)
Make scripture bookmarks. Hand them out at your local supermarket or book store as people come out. Or put on car windshields.
Tell the story of St. Nicholas (or watch the Veggie Tales movie!)
Recognize your church staff in a small, tangible way.
Make crescent rolls for dinner. On a small sheet of paper, have each person write something they are thankful for about their family. Put it in the crescent roll before you bake it. Share with each other before you eat
Leave a gift or sweet note in your mailbox for your mail carrier.
Post something you no longer need/use on Craig’s List or Ebay. Let your child pick a charity they want, and donate the money.
Write scripture or inspirational thoughts/quotes on post it notes. Randomly leave them places around your community where they will be found/on windshields of parked cars.
Vow for one day to only say positive things. No negativity allowed.
At the beginning of the month, start and post a “grateful” list. Everyone in the family can add to it all month long.
Help an older person carry/load their groceries.
Call a friend and ask them one thing you could do to help them out today.
Donate your extra coats/blankets to a homeless shelter.
Do a fun craft project together.
Make some chicken soup and take to a friend, church member, or neighbor who is sick.
Send flowers to your local NICU with a note thanking the nurses and doctors for all they do. (Or go tell them in person.)
Find a way to cheer up someone who is hurting, even if it’s only a phone call.
Have a Daddy-Son date or a Mommy-Son date, whichever is needed most at the time.
Fulfill a wish on wishuponahero.com

Now you'll have to excuse me. I must go listen to Christmas music and decorate. The calendar deems it so. :) (And also, I'm going to make some chili because I just got a craving.)

taking it down

2011-11-30T10:16:00.000-05:00

Yesterday afternoon I hung our stockings. All four of them.

This morning I woke up and felt like it was time to take Gabriel's down.

I don't know why. I don't know why I've needed it up the last two years. I don't know why God is saying it's time to put it away now.

I cried as I took it down. It doesn't feel right, not having it hanging there with the rest of our family's.

But I know it's the right thing for us. So I put it in his box, with all the other cards, treasures, memories of him that I'll cherish forever.

Remembering Gabe is important. But finding joy in the right now and experiencing it fully are LIFE.

So I'll cling to the joy of now and to the hope of the future. Like Matt said this morning as we were emailing back and forth about this, "We have another life to spend with Gabe." Eventually we'll all be together. Although there is an enormous part of me that can't wait for that day, there is a very real and important part of me that has to find complete contentment and joy in what God has given me in this very moment.

"I have come that they may have life, and have it to the full." John 10:10

Thanks for listening. It's been a surprisingly emotional morning. Funny how it hits in spurts and waves, unexpected, unstoppable, painful, but still desperately needed, beautiful. Like God allows us to have these moments of intense mourning, just when we're afraid we might be forgetting somehow. I miss that kid.

thanksgiving, part two

2011-11-28T11:05:00.001-05:00

Thanksgiving started out kind of rough. My little sister, Shaina, had to be taken to the hospital by an ambulance (Mom couldn't get her into the car) with severe back pain. Turns out it was a kidney stone, which she apparently passed shortly after getting to the hospital. She was in excruciating pain, and finally, after a CT scan and two doses of morphine, was feeling better and was released from the ER. I helped Mom get her back home so by the time I got to Thanksgiving dinner, there was no time for photos of food or otherwise. I went straight to stuffing my face. Apologies.

We spent Thanksgiving day with Matt's mom's side of the family in High Point. There were 14 kids in all, so we were all glad it was a nice day and they could spend some time outside. Matt's cousins, Heather and Tiffany, had come up with an outdoor exercise scavenger hunt, and it was a great way to kill some time and get some of their energy out. :)

Thirteen of the fourteen kiddos. Baby Amelia was inside gettin' lots of lovin'.

On Saturday night, we all went to the Tanglewood Festival of Lights. Aunt Patsy had reserved a hay ride through the lights. We got in before all the traffic started, and it was so fun. We sang Christmas carols, and Jonah had a ball! He especially loved the old train they had all lit up with lights, and every archway we went under was a "tunnel!"

Afterwards, we went back to Aunt Patsy's house for our annual Dirty Santa christmas ornament swap. Jonah was lucky number 7.

Checking out the ceiling fan (hecitopter) with Grandaddy.

After the game we had dessert and tube fed Jonah. Not sure what I did hear to tick off His Majesty, but he was not happy with me.

We had a really nice Thanksgiving, but I started getting a sore throat last night and am feeling crappy today. Hope I'm not getting sick. I had big Christmas decorating plans for this week.

Uh oh. Gotta run. His Majesty beckons.

thanksgiving, part one

2011-11-20T21:14:00.001-05:00

Yesterday we went up to my Maw Maw and Paw Paw's house to celebrate an early Thanksgiving with them, my dad, and his wife, Janet. Aunt Sarah and Aunt Shaina came too, so Jonah was pretty much in Heaven. Pop tried to take an after lunch nap, but Jonah wouldn't allow it.

We had a rough week last week. Something was off with Jonah and he was a PILL. Thankfully, Friday morning he woke up and was back to his normal self. It was a good thing. I'm not known for my patience. He didn't act sick or anything but since Friday, he's been a lot more hoarse than usual (indicates swelling or blistering around his voice box), so maybe he was and I just didn't know it. So far his breathing is still okay, so unless that becomes an issue, I'm not too worried.

I'm sorry I'm not blogging as much. I just really feel strongly about not blogging just for blogging sake, so I'm sure that's going to mean times of lots of blogging and sometimes blogging breaks. We're having a really nice Fall so far, and all of Matt's family will be arriving on Wednesday, staying through Sunday, for the Thanksgiving holiday.

Every day I'm so thankful for so many things, but I love having a designated time to celebrate thankfulness (and carb loading). Hope you all have a great Thanksgiving week!

Here are some photos from yesterday. I love Paw Paw's farm. It is so peaceful there, and I'm a farm girl at heart, so it lets me live vicariously through them. :)

This next photo is my I have a 35mm lens on my wish list. Sarah is in this photo too but I couldn't back up enough to get her in it. Stupid walls.

I love them so much.

Ha ha ha ha! :)

I will treasure this photo forever.

guest post for TMOM

2011-11-16T08:06:00.001-05:00

I did another guest post for Triad Moms On Main today.

You can read it HERE.

Hope you have a chance to stop by!

Giveaway has ended... Kindle Fire Reminder (proceeds to Anton's fund)

2011-11-15T13:11:00.004-05:00

The giveaway has ended. Congratulations Tony D. we will be contacting you by email.

We were able to raise $1145!!! Thank you so much to everyone who donated and spread the word about the giveaway!
-------------------

Reposting about the Kindle Fire Giveaway being held to raise money for Anton's adoption. Remember, an entry is only $5.00 or you can share it on FB, your blog or Twitter (make sure you leave a comment if you do any of those so you will be entered). You have until the 18th (FRIDAY) to enter!

We are giving-away a KINDLE FIRE!

Participate in this fun ‘givaway’ for a Kindle Fire and help bring Anton home!!

Don’t need a Kindle for yourself? Participate anyway, and consider this as a wonderful Christmas gift for a loved one!! Think about how far a $5.00 donation can go… one less Starbuck’s coffee, one less happy meal, that is it!!!!

WHAT IS A KINDLE FIRE?
Coming November 15, 2011.

Details (from Amazon):
Full color 7'' multi-touch display, with wi-fi

18 million movies, TV shows, songs, magazines, and books
Thousands of popular apps and games
Ultra-fast web browsing - Amazon Silk

Free cloud storage for all your Amazon content
Vibrant color touchscreen with extra-wide viewing angle
Fast, powerful dual-core processor

A video demo!

(For more product information, click HERE!)

HOW TO ENTER:

- For every $5.00 you donate, your name will be entered. ($20 = 4 chances)

- All proceeds to Anton's adoption fund!

- Tweet about the giveaway (make sure you leave a comment letting us know you did this)

-Share the giveaway on FB (make sure you leave a comment to let us know you did this)

-Post a blog about the giveaway (make sure you leave a comment to let us know you did this)

- The winner will be chosen by Random.org. The winner will be contacted through their PayPal email address. If the winner does not respond within THREE days, a new winner will be chosen.

- You may submit entries until November 18, 2011.

- You must be a United States resident to be eligible for the Kindle Fire.

Don’t Miss Out On This Opportunity! Spread the Word- FACEBOOK IT! TWEET IT! BLOG IT!
Or any other way you can spread the word for Anton!!! Thank you so much for your help!

Remember, you have until November 18th!

shwoo

2011-11-13T13:49:00.000-05:00

I love our Sunday morning worship times. Our preacher, Jon, uses so much scripture and is so transparent, authentic, powerfully to-the-point and challenging. Every Sunday, coming away, I always have a lot to chew on and am inspired to love Jesus and others better.

This morning, our sermon was on living faithfully, especially during times of trial, praying and trusting in God's power to do the unbelievable, and living in the hope that comes from that. A reminder that if our faith is in Jesus, we can look beyond circumstances and trials, and live in hope anyway, even when it seems impossible.

Among a few other illustrations, Jon read this post I had written when Jonah was only a few days old.

can i get a woo woo?

Patrice, why on earth are you up writing a post at 4 am?

Why, you ask?

Because we just called the hospital to check on Jonah during my early morning pumping session and the nurse - beautiful, wonderful, heroic, ever-striving-forward Sabrina - reported to us that Jonah ate like a champ his last feeding. She estimates that he took AND SWALLOWED about 4 of the 5 cc's that she gave him tonight. One suck was so loud, she heard it outside of his isolette. Wow! God continues to answer very specific prayers, doesn't He? Are we surprised??? (that was rehtorrical of course)

... could be the Zantac.
... could be he's figured it out.
... could be just a one time thing.
... could be my Awesome Savior, Jesus Christ of Nazareth.

I choose number four. Yes, that's my final answer.

Thank you sweet Jesus for this ~~small~~ huge victory in little Jonah's life. You continue to give him so much strength and will to survive. Maybe it's only a one time thing. Maybe it's a breakthrough. Either way, it's great news for one happy, happy set of parents. Thank you for your grace and your sweet mercies. They are new EVERY morning, even at 4 am.

Praise be to Yaweh Jireh - MY God, HE provides.

And then they showed this video I posted a couple of weeks ago.

(insert ugly Mommy sobbing here)

And then, at the end of the sermon, they played this song...

... which made me imagine praising God in His very presence, with a beautifully healed Jonah and a very alive Gabe by my side.

(insert more ugly Mommy sobbing)

God is so good. He has brought us so far. We have so much to be thankful for. And I'm especially thankful for that reminder this morning.

thankful

2011-11-06T23:27:00.000-05:00

I prayed for this child,

and the LORD has granted me

what I asked of Him.

a pathetic story of a pathetic girl, but it's not me

2011-11-04T22:41:00.001-04:00

Once upon a time, there was a girl who was pathetic. Her name was P... B... D... Latrice.

She wanted her friend, Jenn, to take beautiful photos of her family for her Christm... Thanksg... Hanukkah cards.

Her friend, Jenn, said that she wanted to do it and that she didn't want to charge Latrice. But her friend, Jenn is also way too nice, works way too hard, and is often overwhelmed with work, in this case, work she wouldn't be getting paid for.

Latrice wanted to "pay" her but didn't really have the money anyway. What was a desperate girl (with a smashing new *hypothetical* hair cut, perfect for Ch... Hanukkah photos) to do?

Well...

Latrice found out that Jenn had entered this picture in a calendar contest for Truliant Federal Credit Union.

And if Jenn could get the most "likes" for her photo on Facebook, she'd win the cover spot and $500. So P... Latrice decided to try to get her lots of votes, so she could win that prize.

And then Latrice wouldn't feel so bad about taking advantage of her super photographer friend.

So if you'd like to help me Latrice out, feel free to click HERE and "like" Jenn's photo so she can win and get some income for her spectacular talents, and her poor, pathetic, desperate friend can rest easier.

I mean, if you want to. Whatever. What do I care? I don't even know the girl.

jonah sings

2011-11-03T20:12:00.001-04:00

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.)

our halloween pics

2011-11-01T09:17:00.001-04:00

Jonah was into trick-or-treating this year after he warmed up. Matt didn't stay out long with him though, because he wanted to walk, then immediately wanted to be held, then immediately wanted to get down and so on and so forth. Maybe by next year he'll be carrying more of his own weight. :)

He enjoyed the at-home part too, though, squealing in delight when Trick-or-Treaters would approach the house. We had 73 total, which is pretty typical for us. Crazy though.

Matt said, "‎364 days a year, it sucks that my kid doesn't eat. On Halloween, it has its benefits."

My sweet tooth would have to agree.

(Deac, not a fan of Trick-or-Treaters.)

happy halloween

2011-10-31T19:27:00.000-04:00

Happy Halloween!

Love,

Jonah

trick-or-treat

2011-10-30T22:54:00.000-04:00

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.

i miss my sweet baby gabe

2011-10-28T15:05:00.001-04:00

Thanks to my EB Friend, Sara, for such a beautiful tribute.

To Bella, Leah, Garrett, Gabriel and all the other EB Sweeties we've lost.

Text "BELLA" or "TRIPP" to 50555 to donate $10 to research for a cure.

Fundraiser for DebRA tomorrow!

2011-10-26T13:29:00.000-04:00

WINSTON SALEM PEEPS:

Tomorrow (Thursday) from 11am to 8 pm, a local restaurant, Blue Smoke BBQ, is donating 10% of their sales to DebRA! They're located at 1527 S MLK Jr Drive, about a mile from WSSU. The offer is valid for dine-in and take-out. You can find their menu in the photos on their Facebook page. They have barbecue, chicken, burgers, salads etc.

Matt, Jonah, and I hope to be there for dinner around 6:30. Would love it if you could join us! Please, please, tell your friends and post about it on your Facebook pages. 10% is a lot if we can get a good turn-out!

Hope to see you!

the eb reality

2011-10-24T15:01:00.004-04:00

This week is EB Awareness week. As you may recall, last year I wrote this letter about EB and stuffed about 100 of them in neighbors mailbox flags. This year I just thought I might write a few things that might enlighten some of you (or your friends, neighbors, people you know) to the realities of EB.

First off, if you want to send people to a comprehensive, easy to understand, accurate description of what EB is, send them HERE.

Our reality:
- a child who doesn't eat anything but a few (I really mean a few, three) bites a day. That means we can't get out very much and have to do tube feedings wherever we are, if we HAVE to be gone during meal time.
- daily two hour bath/dressing changes
- constantly fearing that Jonah will fall
- cleaning up blood, draining blisters, bandaging boo boos on the spot, even when we're at weddings, parties etc because he's a little boy, wants to run, and most always falls at some point.
- constant blistering of Jonah's face and hands, with no way to protect him AND allow his face and hands to be free. draining blisters two to three times a day.
- severe fragility of Jonah's skin, even the bandaged parts. Today I unbandaged him and he had a HUGE blister on his left knee and a huge wrap around blister on his lower left arm. new blisters every day.
- stares and questions (sometimes rude, sometimes not) every single time we go out in public
- having only two babysitters that know how to do g-tube feeds and can keep Jonah if we ever need/want to get out of the house together
- LOTS of money spent on over the counter products (formula, cloth diapers, disposable diapers (to cut elastic off of), flaxseed oil, avocado, Desitin, diaper salve, seamless socks, iron-on grippers for seamless socks, etc) that we only have to use because of the effects of EB. things you'd never think of.
- eleven medicine doses a day
- constantly figuring out a blended diet. blending TONS of mixed veggies, broccoli and cheese, avocado, and blueberries. trying, for the love of all things nutritional, to figure out how to stuff the calories he needs into seven oz servings while still allowing him to experience hunger in the hopes that he might eat by mouth.
- making and blending meals every morning
- a kid who screams in agony every time he has to poop his diaper
- hardly getting outside at all from the months of May through September
- having to run a water pump overnight because he also won't drink anything but a few sips of water every day. gags on milk, juice, or any other liquid that has a taste.
- severe acid reflux and throwing up
- thinning hair
- weekly feeding therapy
- monthly nutritional and developmental therapies
- teeth that have very little enamel and anticipating many future dental surgeries/probable false teeth. like by the time he's a teenager.
- marital stress. feeling guilty that you can be normal and do normal things when your only child cannot.
- watching your child suffer and being able to do very little about it.
- always coming at your child with a needle or suture scissors to "clip clip" one more "boo boo". a child who knows the sound of the sterile gauze packet opening and screams in fear before you've even touched him.
- causing a corneal abrasion if you accidentally poke your kid in the eye, ripping his ear lobes or taking the skin off his chin if you take off his shirt the wrong way, giving him huge wrap around arm and leg blisters if you lift him the wrong way etc.
- between three g-tube meals a day, two hour bandage changes, and nap time, there are about two hours of the day we can leave the house, given it's not too hot.
- having to avoid large crowds, knowing that your kid wants to walk and run around like everyone else, but that if he gets bumped or knocked over, it's bad news.
- wondering if the next time he gets a normal cold or virus, THIS will be the time he ends up in the hospital with his breathing issues
- having a child that refuses to wear anything but regular crocs, because he's afraid of other shoes because of the pain. no tie-ups. no boots, and now a refusal to wear his NB sneakers because when his feet were so torn up (for almost three months) they made him hurt.
- wondering if your child will have a hard time making friends, get made fun of at school, ever have a girlfriend, get married, have sex, or get to have kids of his own. wondering if he'll live long enough to even get the answers.
- wondering how in the world to explain to him that God really does love him and made him special. praying desperately that he'll not use EB as a reason to turn his back on or hate God.

Other EB Sufferers' Reality:
- battling infections every day
- becoming immune to oral and, often times, IV antibiotics
- seemingly constant hospital visits and doctors' appointments
- having esophageal dilatations two or more times a year because of strictures (scarring) in the throat
- tracheotomies (due to scarring in the trachea)
- struggling to eat
- sloughing of intestines
- struggling to breathe
- disfigurement of hands, feet etc because of deep scarring
- six hour bandage changes
- agonizing baths because of open wounds that just won't heal
- getting nutrition through a g-tube or having a liquid diet through a straw. not being able to open your mouth wide enough to bite into a hamburger or chew up a steak.
- constant stares, questions, and ridicule
- corneal abrasions
- loss of eye sight because of scar tissue
- severe malnutrition. never being able to gain weight. being undersized. having limited mobility.
- severe swelling/side effects of having to be on constant steroids
- having to use a wheelchair, because it's just too painful to walk
- never being able to play sports or even an instrument
- dying in infancy from infection and/or malnutrition
- dying in your twenties from skin cancer

I know it's easy to look at Jonah and see him thriving, and believe me, I'm thankful for that every single day. But there are so many kids out there who have it SO MUCH worse than he does. And his certainly isn't a walk in the park. We desperately need a cure.

THERE ARE SO MANY.

What you can do:
- pray
- share about EB, educate others
- follow @EBResource on Twitter today and retweet their EB tidbits for the next 24 hours and earn $1 for DebRA, for every tweet, up to $2,500. include #ebfund in your tweets today because that earns money too.
- text BELLA (in remembrance of Bella) or TRIPP (in honor of Tripp) to 50555 to give $10 to PUCK (Pioneering Unique Cures for Kids) to further fund the research for the bone marrow transplants, our closest hope of a cure. see puckfund.org.
- pray (some more)

Thanks for loving our kids!

pumpkin patch!

2011-10-20T21:29:00.001-04:00

On Saturday we met my brother, Amy, and their kiddos and went to J. Razz and Tazz Farm. We all had a great time, and it's so cool now that Jonah can walk. I feel like he can participate so much more. It was warm but windy, so it felt good. And I remembered the sunscreen this time! Point - Mommy!

We went to the same place two years ago (here and here). If you live near the Gibsonville area, you should check it out.

Giveaway has ended... Kindle Fire Giveaway for Anton!

2011-10-18T12:11:00.007-04:00

Participate in this fun ‘givaway’ for a Kindle Fire and help bring Anton home!!

WHAT IS A KINDLE FIRE?
Coming November 15, 2011.

Details (from Amazon):
Full color 7'' multi-touch display, with wi-fi

18 million movies, TV shows, songs, magazines, and books
Thousands of popular apps and games
Ultra-fast web browsing - Amazon Silk

Free cloud storage for all your Amazon content
Vibrant color touchscreen with extra-wide viewing angle
Fast, powerful dual-core processor

A video demo!

(For more product information, click HERE!)

HOW TO ENTER:
- Use THIS BUTTON to make your donation to enter (or click this link).

- For every $5.00 you donate, your name will be entered. ($20 = 4 chances)

- All proceeds to Anton's adoption fund!

- Tweet about the giveaway (make sure you leave a comment letting us know you did this)

-Share the giveaway on FB (make sure you leave a comment to let us know you did this)

-Post a blog about the giveaway (make sure you leave a comment to let us know you did this)

- The winner will be chosen by Random.org. The winner will be contacted through their PayPal email address. If the winner does not respond within THREE days, a new winner will be chosen.

- You may submit entries until November 18, 2011.

- You must be a United States resident to be eligible for the Kindle Fire.

get your serve on, month one

2011-10-15T09:00:00.006-04:00

Well, today is the day! And you know what? Even though I had a "project" in my mind (that, unfortunately, didn't come to pass), I was blessed by so much this month. God is so good and showed me so much about love, humility, and a true serving heart

It was important to me, more than a project, to be in relationship with others. Thank God for Anthony's Plot! I wrote about it first HERE if you want the details. We are loving our Monday night community dinners, prayer time, and getting to know new friends in our community. I really can't tell you enough how much God has shown us as we've stepped out of our comfort zones and into a God-focused, intentional community. Pray that God will open the doors, and He will!

And this was more about me than others, but I did get to run my first 5K this month and over $10,000 was raised for the Second Harvest Food Bank. Hooray!

Me, showing them how fast I'm going to run at the next one. Being overly dramatic. Looking ridiculous. It is what it is.

Okay, I want to hear about your month. What has God shown you?

Link up here if you've blogged about it.

Or join the Facebook group HERE, create a photo album, and tell your story in the captions of the photos! Thanks for coming on this journey with me. I'm thankful to have such good company.

get your serve on! two more days...

2011-10-13T12:00:00.000-04:00

I'm reposting here what I posted last month about the service proposal. Please take a chance to read if you missed it. Anyway, this weekend is the time to post how God's been working in the lives of you and your community. My post will go up Saturday (morning, I hope) and you can link up on that post to your blog or you can join the Facebook group (link at the bottom of this post), create a photo album in the group, and tell your story through your photo captions. I would love to know if you plan on linking up. Even if only a couple people do it, we can hopefully get some ideas and inspiration as to how to practically be Jesus to those around us.

I'm not sure how to start this post. I've been thinking a lot over the last couple of weeks (I know, I know), and I have ideas, but I just feel like they're not going to come out like I want them to. So bear with me, okay?

I went over to my neighbors' house the other night to hang out. We somehow got into a semi-political discussion (this post is not political), and I made the comment about how so many people and Christians specifically want smaller government (this post is not political). But in my opinion (this post is not political), programs or services have to be in place for those who need help, and until the Church picks up that call (like, in a revolutionary, save-the-world sort of way), the government will have to be involved (this post is not political).

So that just got me thinking. Matt and I are reading through the Bible this year, and have just finished reading Radical. And although the Church does many good things (and I'm in no way speaking against any congregation or church specifically, just more the American Church as a whole), we miss the point. A lot. When I read that the first Christians sold all they had and gave to each other as each had need, and I hear Jesus say not to store up earthly treasures, and I read that I'm commanded (commanded, not called) to sacrifice everything to live and love like Jesus and to help those in need, I wonder how we got here. How we got to this place of planning beach retirements, huge life insurance policies, cushy retirement accounts, working like dogs to one day be able to do whatever WE want (or nothing at all), and to live for ourselves. All of this while people starve in the streets, thousands don't have the medical care they need (even in our own country), millions of people live on less than $2 a day etc. There are so many needs.

And we just turn our heads. Either we depend on someone else to take care of it, we've become immune, or we don't even care enough to think about it. Or maybe we do think about it, but we just wonder, "Who am I to do anything about this?"

Um, we are the children of God, claimed by the Father, rescued by the Son, empowered by the Holy Spirit, commanded to die to ourselves and sacrifice everything to help, serve, and save as many people as we can, in the name of Jesus, giving the glory to God.

So there.

But what does this look like? In the real world, in this I-can't-go-to-Africa-and-feed-the-poor and I-have little-kids and my-mission-is-to-mother-my-children world, what does that look like? That question haunts me all the time. Where do we start? What do we do? How do we make a difference in the lives of our mourning, hurting, lost, sick, and broken neighbors?

We take a step. That's it. We take a step. Putting aside excuses. Stepping out of our comfort zones. Clinging to the faith that saves us. Trusting the God who says, "I've got this." Taking the commands of Jesus seriously. And we do it.

So here's what I'm proposing. What if we chose one project or area of service each month to meet a need in our communities (or anywhere, really). I'm talking about a real-sacrifice, make-a-difference, lettin'-our-lights-shine-for-Jesus sort of project.

But my kid(s) is/are so little. I know. That's what I've been saying for the last 2 1/2 years. But then I got to thinking. Even if Jonah doesn't get it now, even if it will be more "inconvenient" for him to tag along or participate, wouldn't be cool if he grew up never remembering a time when we didn't sacrifice for and serve others. What if, when questioned, he answered, "Huh. We've just always done this. We just love people. That's all." Isn't that really the most important thing? Even over piano lessons, gymnastics, healthy lunches, sporting events, play dates, dinner on the table every night and an organized house?

I've really had to reexamine some things. How much of the things in my life that I see as have-to's are really from God? It's not a comfortable question to answer.

So, back to the proposal. I'm thinking we all choose a way to help those in need this month. We do it, chronicle it with photos (if appropriate), and on October 15th, we blog about it. Not to brag or show off our holiness (I hope you're not reading this that way), but to show how God is working in our lives and the lives of those we are forming relationships with. And also to share ideas with each other, ways we can serve others right here in the old USA. Maybe we could really make a difference?

Maybe we could change the world?

I'm not sure. I don't know. But I've been thinking about this for weeks now, and I just can't shake the idea. And dang it, this morning, our lesson was on God giving us all certain gifts and that we are commanded (not called, commanded) to use for a purpose. So here I am. Wrestling with this idea. Doubting how it will go. Afraid of ridicule or rejection. Not sure of my words.

But it's in my head. It's from God. So here it is.

I will be posting a linky thing here on my blog on OCTOBER 15th. I'm hoping you'll take the challenge, and plan to link your post up here on that day. I know that we would all be blessed to see how God is working, and it would be great to share ideas. Maybe we could even make this a monthly thing? (UPDATE: I just made a Facebook group for those of you who want to participate but don't have a blog. You can join it HERE. It's called "Get Your Serve On." Don't judge. Matt came up with the name.)

Let's get out of the boat. Want to?

(If you have no idea where to start, this post had some good ideas.)

I'd love it if you'd leave me a comment here if you'd like to participate. I think this could be amazing. To God be the glory!

at the fair

2011-10-11T13:10:00.002-04:00

Matt's sister and her family were in town this weekend for her high school reunion. They live in NY now, and the kids had never been to a real (big) fair. So on Sunday, we went and I think they had a great time. The Dixie Classic Fair is so good, and any other fair I've ever been to (which are just dinky county fairs) don't even compare. AND Jonah got to see the train that brings the fair to town, which according to his Real Trains For Kids video is the last carnival train in America.

Jonah got spoiled ROTTEN this weekend having family in town, and Grandaddy was definitely the main culprit. Jonah loves him some Grandaddy (but not as much as Granny, of course. Ahem.).

It was way hotter than it was supposed to be and Jonah got sun burnt. Yep, Mother of the Year award right here. I felt so bad, but it's already faded a lot, so I think it looked worse than it was. Still, sun burn in October? I didn't even think about it!

Waiting on the pig races to start.

Uncle Andrew thought this was hilarious and was definitely the highlight of his day. Man, those things really run for the Oreos. This big guy blew them all away!

Then it was off to the big kid rides, so Grant, Abby, and Will could have some fun.

Jonah had SO MUCH fun. I think our Tweetsie and Day Out with Thomas trips made him eager to ride. He rode four rides, and loved every single one! For a kid who cries when the Crock Pot is out on the counter, that's pretty huge.

Deep fried butter, deep fried Twinkies, deep fried bacon etc and so and so forth. Only in the South, Folks.

It was a really fun day. And as much as I'd love to write more about it, I just found a surprise stash of Hershey Kisses in my pantry. I love it when my In-Laws come and leave behind their chocolate. They know me well. I'm truly loved.

Here are our fair posts from 2009 and 2010 if you want to see them. Jonah has changed so much!

slices of life, vol. 4

2011-10-10T21:06:00.001-04:00

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.

my first 5K!

2011-10-08T22:02:00.000-04:00

I had so much fun at my 5K today! Well, maybe not so much fun when I was actually running it, but felt GREAT afterwards. I ran it in a little over 35 minutes, which was an 11:19 mile. And that is really good for me. I never stopped running, which was my own personal goal, so overall, I feel really happy about it.

And over $10,000 was raised for the Second Harvest Food Bank! Hooray!

Before-run potty break.

The Fun Run!

Getting Ready!

There was this...

And then, all of a sudden, the gun sounded.

And we were off.

And then we finished.

And it was awesome!

this and that

2011-10-05T23:02:00.000-04:00

Things are going pretty well around here. Jonah is over his cold and is holding his food down again. This weekend Matt's family is coming into town. Granny and Grandaddy up from SC and Kim, Andrew, and the kids down from NY. Kim's 20th high school reunion is Saturday, but lucky for us, we get to spend the whole weekend hanging out with them. We're heading to the fair this weekend too! I can't wait. I love the fair, and I think Jonah will really enjoy it this year. (And I'm running my first 5K on Saturday morning!!!)

Jonah went straight into class tonight with not so much as a glance back at us! No crying, no throwing up. Nothing. He's still struggling on Sunday mornings because we haven't been able to be as consistent on Sundays, but lots of progress!

I haven't gotten a recent update but Matt's Aunt Katherine is still in the hospital, so please keep praying. I know she is desperate to get home to her family.

And I don't really have any new photos of Jonah, but here is one I tried to take of us at our neighborhood block party Saturday.

Loving the cool weather! Loving fall! Loving life!

prayer request for katherine

2011-10-01T13:07:00.000-04:00

Hi, Friends. I know many of you read Matt's Aunt Katherine's blog, and I just wanted to post a prayer request for her that I just posted on her blog. I'm just going to copy and paste what I wrote there.

I just wanted to let you know that Katherine isn't doing very well. She was taken by ambulance to the hospital last night and readmitted with very high blood pressure and severe headaches. Her blood pressure has come down some with medication, but the terrible headaches are still very present. They did a CT scan, and everything looks okay. So right now they don't know if the headaches are still related to her blood pressure or the stress of all that's going on. She has dealt with terrible migraines for a long time.

Please be in prayer for Katherine, that they can continue to regulate her blood pressure, that they can find the cause of her headaches and/or she can get some relief, and that she will be able to return home soon. Please be in prayer for Grayson as he figures out the logistics as far as care for Amelia and the boys. We're not sure how long she will be in the hospital.

Thanks so much.

a few eb things

2011-09-29T13:31:00.001-04:00

I just wanted to blog a piece of info, a prayer request, and a sweet video, all related to EB.

I got the following email from Karyn a couple of days ago. I thought it might apply to some of you.
There is a program called the Combined Federal Campaign that is open to all federal employees; each year they have a booklet of various charities that you can donate to via a one-time donation or a recurring monthly contribution over the course of a year. DebRA is one of the organizations that is available to donate to, the charity code is 11990.

I would also ask that you go over and meet nine year old Nicholas. He has EB and is day +193 after his bone marrow transplant. He is not doing well. His mom's latest journal entry:
Here's the update as of this week.... Nicholas has yeast infection in his lungs (and fungal pneunomia) and CMV infection in his lungs (CMV pneumonia) plus the yeast infection in his blood. The massive steriod dose that was started (to attack GVHD) suppressed his immune system which most likely started the lung and infection issues. We had no choice but to stop treating GVHD and try to get all the infections under control. He is still in the PICU and intubated. At 1:00am each morning an x-ray is taken and we've seen alittle change but nothing significant. The next fews days will hopefully tell us something.

He could really use your prayers. You can visit his Caringbridge HERE if you'd like to read more and offer his parents some prayers and words of hope.

Also, I don't know if you remember me posting about a one month old baby, Lucas, who passed away over the summer from EB. His dad wrote this song and created this beautiful video in memory of Sweet Lucas, and I wanted to share it with you.

The song is called “Butterfly Child” by Rob Duskey and Friends and it is now on iTunes and Amazon mp3 with all the money brought in going to DebRA.

Hug your family tightly, and don't forget what's really important. We are doing a Beth Moore study at church, and she was talking last night on the video about how we so often turn "irritation" into "tribulation" and complain and act like the world is falling apart and life's not fair and so on and so forth. And the world isn't fair and certainly there is plenty of negative you could choose to focus on, but don't turn your daily irritation into tribulation. Satan is prowling the Earth trying to steal your joy (and your soul). Don't let him win. Your God is Greater and Mighty to save.

catching up

2011-09-27T14:53:00.001-04:00

We have been really busy lately, which is good I suppose, but leaves little time for documenting the busyness. Things are going well, although Jonah woke up with a cold on Sunday morning, so he can't hold any food down right now because the congestion makes him throw up. Frustrating for all of us. This was my Facebook status around this time yesterday:

God has gone before us in all things. I especially know this when I have to clean up 8 oz of green puke off my living room rug. Thanking God that He saw to it that I bought a rug of the same color long before Mr. J came into the picture.

Lots of puke. Lots and lots of puke. But hopefully he'll be over the congestion in the next couple days and we can get back to (our version of) normal. He's staying in class on Sunday morning and Wednesday nights now, although he still cries and often vomits when we first leave him (congestion or no). No way to get his anxiety level down but to keep pushing through. And so we push on.

On Thursday Jonah had a dentist appointment with our awesome EB dentist in Chapel Hill. His teeth are small and don't have much enamel. They will never be normal sized, and once he has his permanent teeth, he will have to have surgery to crown them or cap them or something and may lose his teeth and have to have implants later in life. But for now, they're only baby teeth, and so far, thanks to God, he hasn't had any infection, cavities, or abscesses. So we keep doing what we're doing, and pray that the little teeth he does have stay healthy.

Jonah and Daddy waiting to see Dr. W.

On Saturday we went to the transportation museum because they were having a Day Out with Thomas! Jonah constantly watches Day Out with Thomas videos on youtube, so although it was $19 a person (WHAT?), we knew we had to do it. All of my photos are phone photos because it was supposed to rain all day, and I didn't want to have my nice camera out in the crappy weather. Thankfully it didn't rain, but still, camera photos it is.

On the way!!! He was so excited. I think this is the first time we've been able to talk about something or taking him somewhere ahead of time and he really gets what we're talking about. It was fun to see him anticipating it and getting really excited!

They had lots of cool model train tables set up, which Jonah (and I) loved.

Jonah's favorite thing to do was play at the train tables (although we had some slight sharing breakdowns), and he cried every time we'd pull him away to see the next thing.

He wasn't sure AT ALL about the giant engines everywhere, but we forced him to get a photo with one anyway. (Because we're excellent parents like that.)

Then it was time to take our 4:30 ride on Thomas!

He only cried a tiny bit when I carried him on the train but was in Train Heaven by the time we got to our seats.

We didn't get a photo of Jonah with Thomas because the lines were long and we had to get him home for a tube feed (we had already let him skip lunch), but it was a great day overall. He really had a good time.

And then he woke up the next day sick. Bummer.

Sorry to those of you who follow me on Twitter, because I know these are photos you've already seen but I just haven't taken many on my other camera lately.

How are things coming along with your monthly service opportunities? Are you going to be ready to blog or Facebook them on October 15th? I can't wait to hear how God has been moving!!!

and we have a miracle!

2011-09-22T21:36:00.002-04:00

Email I got earlier today from my sister in law:

Hi Friends,

I am THRILLED to report this update from a friend at the hospital via a text she just sent out:

Please keep praying, lots of recovery but pretty good news...
Per Melanie from the dr...
Apparently the stroke Hallie had destroyed the tumor remaining on the damaged area of her brain. They couldn't find the tumor bits but they took a bit of the damaged area to test for cancer but could not see any cancer. Said that this operation was as easy as the first time was difficult. :) Now she is still under and getting a feeding tube in her belly and the portacath in her chest for possible chemotherapy in the future. She is known as the miracle baby here :) !!!!

Is our God amazing or what? I'll try to keep you updated on Hallie's continued progress, but thank you so much for praying! I know her family is so thankful. Thank you, God!

And on another, not-at-all-important-in-the-scheme-of-things, note -

I finally got my hair cut today like I've wanted to have it cut (but chickened out every time) for the last 12 (yes, TWELVE) years.

I done gone and done it. And I love it! (But maybe ask me tomorrow once I've had to wash and style it myself. It will not involve a round brush, flat iron, and molding paste like it did tonight. I can tell you that right now.)

prayer request

2011-09-21T22:04:00.001-04:00

Hey Friends.

I have a prayer request for you tonight.

My brother and his wife are good friends with a couple in their town. The couple's daughter, Hallie, not yet two years old, was in seemingly good health, besides what they thought to be chronic ear infections. On August 28th, Hallie had a seizure. They rushed her to the hospital, where it was found she has a brain tumor.

She has been in the hospital ever since. She immediately had surgery, followed by keeping her in a coma to let her brain rest. She's had ups and downs in the hospital, including an infection and the possibility of some brain damage. She is doing well as of late. Her MRI results were good, showing very little damage to her brain and her spinal fluid came back with no signs of cancer in her spine! All of that being said, her second surgery to hopefully remove the rest of the tumor is tomorrow at 7:30am EST. It will last about four hours.

I would love it if between 7:30 and 12:30 (you know they always run late), when you think of her, you could say a prayer for her. My sister in law set up a google document HERE if you'd like to sign up for a 15 minute slot, but feel free to just pray on your own too!

Thank you all so much. I know the prayers for Hallie and her family are sustaining them all.

girls' weekend, part one

2011-09-19T22:56:00.000-04:00

I'm sorry I have been slack in posting lately. I have been trying to go to bed earlier in order to get up earlier and spend some time with Jesus. Otherwise, it doesn't happen. I've also just kind of been lazy and unmotivated in the evenings for the last few weeks. Not exactly sure what the deal is but hoping I snap out of it soon.

This past weekend I went on a Girls' Trip to the mountains of Virginia. I don't have much time to write about it now, but I thought I would share some of my favorite photos (I took a ton). I cannot tell you how blessed I am to have such great girlfriends, a loving husband who will take care of Jonah all weekend so I can go, a Mom who will come over and help with dressing change, and on and on and on. It was a respite trip for my soul. And Jen, you know, the one who moved to Texas, flew up here to be with us. We haven't seen her in ten months. I miss her so much I ache. She is so beautiful. I love my girls!

anthony's plot

2011-09-13T14:58:00.000-04:00

We approach the house with uncertainty and maybe even some fear. Upon arrival, we know no one.

A community house, started by some friends of friends. An emergency shelter for those in immediate need. A more long term residence while those who were once-homeless get job training and pursue more permanent housing. A place of community. People who live together, guests, friends, believers, those struggling with faith. Those with hope. Those struggling to have some. A place to live and love, to garden, to work, to cook, to form relationships.

Anthony's plot. Started by a group of Jesus-lovers. To narrow the gap between the church and the disenfranchised of the community. A place for growth of community, cultural enhancement, skill development, social ministry and activism for the poor.

And here we are. We prayed and God said, Here you go. We did not know about this place until Sunday. And Monday night, here we are for the weekly community dinner.

Out of our comfort zones? To say the least.

Greeted by a hug. Talked to like we've been friends forever. Her name is Alegra, and her spirit is beautiful. And we meet Jamie and Eric and their two beautiful daughters. And Billy with the bus that gives out clothes to the community. And Bernard and Harold and Sweet Linda. And the beautiful women who've made our wonderful meal. Fried chicken, stewed potatoes, pinto beans, asparagus, salad, rice and gravy and on and on and on.

We contribute nothing. Nothing but our presence.

And after dinner, worship. A group of unlikely friends, misfits, if you will, but brothers and sisters in our Sweet Savior. We sing, we pray, we share our hearts.

And Jonah dances in the middle of the floor, shaking a maraca.

And I think to myself, I want to be a part of this. The closest thing to the New Testament church I've seen. God will use them. The unlikely. The looked-down-upon. The "lowly" of society.

Oh, do they know? Do they know the work He can do through them? Do they know that they are the Chosen? Fishermen. With nothing. Saying, Here I am, Lord.

I look up to them. Human beings. With so many struggles. Still pressing on. Clinging to hope and to the only One who can fill all of their holes. And they are so honest. So open with their struggles, so free in revealing their gaps, tears, the ugliness in their lives. And I envy that.

This is what it's all about. Sharing. Confessing. Bearing one another's burdens.

And I know that God has put us here. We've found our place.

And this. This is not a service project.

This is just love.

kyle!

2011-09-13T13:29:00.000-04:00

Kyle did great through transplant and went home yesterday. Please keep him in your prayers. I can't wait to see the results of BMT. Praying for a very very very bright future!