a few eb things

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

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!

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

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

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

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!

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!

photos

This first one is from today. We took Jonah to the mall for a couple hours this morning to walk around. We let him ride the little train that goes around the upper level and ate lunch at the food court. We thought about going to the air show, but are very thankful we didn't. Our friends who went said it was very hot (asphalt and no trees) and they're all sun burnt. So it would have been really bad for Jonah and we would have spent a lot of money and would have had to leave.

On the other hand, we paid $6.00 for the two of us to ride the train while Daddy stayed with the stroller and had a nice peaceful morning (plus a 35% off sale on everything -even clearance- at the GAP!).

Good times!

The rest of these are from the last several weeks. I'm just behind on loading them.

Jonah and Aunt Shaina

Jonah and Pop

Jonah and Aunt Sarah

From last weekend: Jonah and Daddy and Little Critter :)

nothing much

Nothing much to report today. Jonah has been a P-I-L-L today. Constant fussing and crying, screamed all through Target. I really hope he's not getting sick. It's really unlike him to be so difficult. He seems to be resting okay tonight, so we'll see how tomorrow goes. Maybe he's just had a pissy day. We're all entitled to them every now and again. :)

While he screamed in Target,  I went to the candy aisle and bought two of the biggest bags of Sour Patch Kids I could find. And now I'm eating them. Remember that time I had lost seven pounds?

On Week 8 (again) of Couch to 5K. Can't run 28 minutes on my own, but if I run with a friend, we can rock it. We go slow, but we can run about 2.5 miles. Pretty awesome seeing as how I could barely run the 60 second intervals in Week 1. Slowly but surely.

Still trying to narrow down what we want to do to Get our Serve On. We're looking into spending time at the homeless shelter here in town and there is also a friend of a friend who has started an urban ministry here in town (very close to us) that I want to check out. I really want us to do something relational if at all possible. If you're interested in participating, make sure you join our Get Your Serve On group on Facebook. A really cool community forming over there.

Hope you all have a great weekend!

the proposal

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!

all caps

JONAH MADE IT THROUGH THE ENTIRE SERVICE IN THE NURSERY. MATT AND I JUST WORSHIPED TOGETHER FOR THE FIRST TIME IN TWO AND A HALF YEARS. WORTHY OF ALL CAPS. (Thanks to all of you who've been praying specifically for that.)

good day

It was my Maw Maw's birthday today. I can't remember the last time I saw her and Paw Paw, so I was so thankful to be able to meet them and my Dad at K&W for lunch with Jonah, and then for them to be able to come back to the house for a little bit. Jonah has changed so much since they last saw him, but that Maw Maw, bless her heart, she hasn't changed a bit.

I love that lady.

I am in love with all of these. I couldn't narrow it down anymore.

Happy Birthday, Maw Maw! We love you!