Beck and I are excited today because we get to volunteer and be a part of Angel Flight and pickup someone from the airport and drive them to Duke for medical care. We are now a part of the ground transportation team in our area. It’s great to be able to give back to those in need, especially when we have the compassion and understanding for their situation. The pilots who fly people do so for free and take people with medical needs who may not be able to afford it to places like Duke, UNC, John Hopkins and others for their medical care. If you want to know more about angel flight and what they do click here.
Compassion
This next week is going to be busy.
Monday: appointment for Lauren with peds neurosurgery, OT appointment for Lauren, work at the church in the afternoon, meeting with Copeland to get speakers back, drop drum set off to Justin Teseniar, and work on service for refuge Wednesday.
Tuesday: Work on service for refuge & setup the worship area. Be home by 3PM so the nurse can leave. Stay with Lauren until the nurse comes at 11PM while attempting to work from home. Watch lots of Mickey Mouse Clubhouse. Fallout 3 Game of the Year Edition drops. Cook Dinner.
Wednesday: Up early for nurse to leave, finish service details/setup for refuge, pickup the outlaws I mean in-laws from the airport (I might have lunch with them if I am lucky), nurse leaves at 4 when my sweet wife gets home (she will be happy to see her parents). refuge at 6PM, freak out because I don’t have someone to lead music, then remember that my computer can handle it.
Thursday: Lauren’s surgery. We love visitors but Duke is not allowing ANYONE to visit other then immediate family members and no one under 18. Clergy are an exception, which covers just about all the people I know! However please call my cell before coming to see us. Lauren will spend at least the first day/night in the PICU of her 5 day stay and no one but us can be in there with her.
Friday: Stay with Lauren in hospital, hopefully on step down, pending how she recovers. Work on service stuff for Sunday. Push lauren around Duke in her stroller for 12 hours (pending how she’s doing). You laugh but last time we walked around Duke that much with her. We saw the fish tank (her favorite thing at Duke) every few minutes.
Saturday: Stay with Lauren in hospital.
Sunday: Morning service & movie night at church, stay with Lauren in hospital.
I read these words over at my friend bush’s blog.
“May God grant me the grace and the ability to show August what it means to be a Godly man…who risks everything he has for the sake of the Kingdom and Glory of God.”
The whole line has hit me when it comes to my daughter, her life now brings people hope. Will it in the future? Will my wife and I raise her to be a Godly woman? Will she choose to live her life that way? See ultimately it’s her choice, no matter what she chooses or how she lives we will love her, encourage her, and support her. I pray too like Bush, that God would grant me the grace an ability to show Lauren what it means to live a Godly life.
Now the last part really hits me as a father/pastor/christian/whatever you want to call me “…who risks everything he has for the sake of the Kingdom and Glory of God.” Man, I don’t think I’m there, this has been something I’ve really been struggling with lately, and if I’m not there how can I as a father/pastor/christian live that out for my daughter or the people I minister too week in and week out?
Lets face it though, most of us sitting in front of our computers, in the air conditioned office/home/coffee shop where your reading this are with me. We talk big and it’s just big talk. If God told you or I to drop everything and move your family to who knows where, with no place yet to live, a mortgage to pay where your at now, no job, no whatever, we would not do it. We always want a plan, and always have a plan ‘B” in the wings. We don’t really just “risk everything for the sake of the Kingdom and Glory of God” do we?
My God, when you bring these moments into my life may I be willing to risk it all like Bush is talking about, for the sake of your Kingdom and your Glory, for the sake of my daughter to be a Godly example to her and to speak into her life on your behalf, and for the sake of those who you will bring into my life, that they might see you in my brokenness.
This is how life roles when you can’t get a break in life. The first house we had under contract has fallen through and we lost some money, granted it was not a large amount to most people, but to us it was. We where able to get the rest of our money back, thank God. The more our agent dug into things the more fishy it became. I’ll post details later. We want to put an offer on another house but can’t until at least Monday when we are officially pulled out of the current one. If this too falls through we will be stuck in a rental for at least another year. We are really tired of having to move, especially with Lauren’s medical condition, it makes it that much more difficult. We never did fully move into our apartment as some of you who have seen it can attest.
Lauren is doing well, taking first steps and signing more, I will work on getting some photos up of her doing this. She is after all growing like a weed. We see the plastic surgeon in July to get on with the next leg of surgery and hopefully in 6-9 months or more removing her trach, but we are done holding our breath for that to happen (pun intended).
I miss posting photos for Photography Friday and hope to get back at that soon, there is so much to shoot here in the triangle. Finding time is a whole other road I’m not going to travel down.
I was actually going to take a sabbatical from blogging but well… I did for a few weeks. Hope all is well in everyone else’s world.
As a side note, we have raised between $700-$1,000 for the Ronald McDonald House of Durham, If you would like to help out please click the link in the right column to donate.
So Lauren is going into surgery tomorrow to biopsy a mass in her nasal area to see if it’s tumor or just scar tissue from a previous surgery. They are also going to look at the tube in her left ear, downsize her trach, and do some other stuff. Please keep her in your prayers.
The tentative plan is to keep the trach until after the plastic surgeon does his work to repair her palate which will be some time after July of this year. So we are looking at least another 9 months (we think) or so of her having the trach, we where hoping to get it out within the next month or two but that is no longer the plan.
She is going very slow with the eating by mouth thing and is not taking in enough to even do a swallowing study so we are a long way (at least 2 years) off from getting that taken out unless she decides to make a drastic change. Every time we make some progress forward we go backward because of a surgery or something.
We are very thankful of the people who work with us here, they are some of the best in their fields and do an amazing job.
We are also making an offer on a house in our area and there are a lot of variables so please pray that if it’s God’s plan it would work out.
***If you have not done so and would like to donate to the Ronald McDonald House of Durham you can do so by clicking the link in the right column of my blog.***
I want to thank you all for your support and prayer for Lauren, she is now a whole 1 year old and we could not be more amazed with this child God has blessed us with. It has been far from easy as many of you know, but this is the life God has blessed us with and we continue to live it one day at a time. I have to say someone asked me if we could go back and change everything would we? The answer is no, we would not change a thing, Lauren is Lauren and we have grown into who we are because of this last year. We where told recently that we treat our child like a baby not like her illness/disease/diagnosis or whatever you want to call it, that made us feel good. We desire to be parents first.
So on that note I wanted to share that we raised $632 for The Ronald McDonald House of Durham at Lauren’s Birthday Party and people are still calling the church about donating. This does not include any online giving which some of you have said you have done. I hope to find that out soon to give you a more exact figure. I want to thank you all for your support in this. Rebecca and I are looking forward to taking Lauren and the money we raised on her birthday to the Ronald McDonald House of Durham later this week. If you would like to donate you can still do so online at any time, I’m going to post a link to do so on the right column of my blog later this week, but for now you can click here.
So here is the video I showed at her party of her 1st year of life, it’s not the best quality since we don’t own a mamajama video camera but I think you will enjoy it just the same.
[youtube=http://www.youtube.com/watch?v=8s348MdqdJU&hl=en&fs=1]
February 27th 2009 seemed a distant dream when I took this picture, such a long time away, and now it’s around the corner. Remember they gave Lauren a 10% chance to make it to her first birthday so we are wanting to do something huge. Not for us, but for others, to celebrate Lauren’s life.
We are going to be having a birthday party for Lauren but instead of giving her gifts we are asking for people to donate money in her name to the Ronald McDonald House of Durham, NC. who so graciously provide a place for us to live for a good while and does so for many families. We are going to take up donations online as well as at her Birthday Party, please remember to put in honor of Lauren Browne in the tribute section of the link below so they can track how much we raise. Our goal for this money is to help others who are in need. We really feel God leading us to help those who are facing the unknown as we have over the last year. We could not have made it this far without God and help from individuals and churches alike. We are asking that you share this with others, churches, and businesses, with anyone you like to.
You are invited to a PINK PARTY in honor of
Lauren Browne’s 1st Birthday
Saturday February 28th, 2009
Farrington Road Baptist Church
Chapel Hill, NC
2PM-4PM
Don’t forget to wear PINK!!!
To know more about the Ronald McDonald House of Durham CLICK HERE
To read Lauren’s story and see pictures CLICK HERE
Well 9 years post that is. Some of you might remember that line, some of you will not. To those who know this you may also recall the meaning of the universe, which is in fact the number 42.
Really this new year brings new things. I truly want to journal through the entire Bible. This will in fact take a long time. We will see how it works out.
I also want to be more aggressive with our student ministry in regards to reaching the lost and hurting students in our community. I want us to move from this youth group mentality to a youth or student ministry mentality. My desire is and always has been for us to minister to each other and those that are around us and I want to see that develop in our students as well as our adults. Could imagine if this poured over into our church or your church? Really. Jesus came for the sick and we need to too. I hate it when we play church a couple hours a week and basically screw people out of what it truly means to follow God because we stink as Christians. (No conviction there…)
I want to be a better husband and I have no clue how to do that. I think sometimes that I suck at it. I try my darnedest by what I think is good and not what my wife thinks is good. So many times we as men see it from our own eyes and fail to see it from the eyes of our wife.
Subject:: The Family
Camera:: Canon EOS Digital Rebel XTi
Aperture:: f4.5
Shutter:: 1/50
ISO:: 200
Focal Length:: 100mm
We had a wonderful Tuesday last week. Lauren had to get stuck nine times to get in IV in her. It was for her MRI with contrast. Which went fine after they got the IV. The great news? Dr. Grant does not think the tumor has grown! This is awesome. We have been very upset since the other doctor who will be removing the tumor from her palate on Friday said that it has. They went over the previous scans and showed us that like last time, gravity has caused it to drop down more. The part they are going to leave in her cavernous sinus has not grown either. Lauren will go in first thing Friday morning to have the tumor on her palate removed. They will not be fixing the palate at this time, that will be done over the course of a few surgeries in the distant future. She will still have the trach until the spring and the feeding tube until such time as she can eat by mouth which could be a few years.
I didn’t mention Monday. It was spent with the eye doctor checking out Lauren’s corneal abrasion (scratch) on her eye. We go back first thing in the morning to have it checked again. We are hoping she does not have the herpes simplex virus (think that’s right) in her eye. The plus side is that she has no corneal sensation in that eye so she can’t feel a thing otherwise she would be screaming bloody murder.
I’m sure there is more but well… I just can’t think of it.
We continue to have problems with our apartment. We have an issue every week. Really, every week. The heat went out last week on top of everything else and we where told it would be a week until it’s fixed. It’s hitting between the 20’s-30’s here every night. We told them to have it fixed same day or let us out of our lease. It’s fixed. What we where told would take a week took 2 hours. We have also been having almost daily issues with our toilets since moving in. They have fix them, I have fixed them, etc… well the new ones finally came and they didn’t fit. So they said they had ordered ones that would. That was a month ago. They lied. They never ordered them. So I will say this, we are moving as soon as our lease is up. All we want in life is a place to live that everything functions right. You would think that is easy to get but I tell you it’s not. Something as simple as toilets or heat truly makes our lives better in the midsts of everything else. I have had to fix towel bars that have come off the wall, shelves that have fallen (both because some idiot cut corners and didn’t use drywall mounts), there is a shelf that is about 6″ to short in the kitchen that things fall behind all the time, and I could go on. We have had to have the carpet replaced in our closet because it smelled of who knows what. There was a water leak in the apartment above us that stained and molded our celling… still not fixed, they forgot about it and we won’t let them spray stuff in the apartment because of Lauren’s medical stuff. I’ve been sitting here listening to the rain and noticed that water is leaking down our fireplace which is new since they where working on the roof a few days ago. Mold is bad for Lauren, with the trach she has no way to keep it out like we do with our noses. Did I mention the gates to our “gated community” have been broken for over 3 months and it looks like they are no going to repair them? They never fixed the celling above the water heater after the flood above us, it’s still hanging there. Some wire box for the AC had loose wires which melted and smelled really bad. They just bypassed.
Well thanks for allowing me to vent and if you read all that I’m truly sorry. I just needed to get it off my chest. I’ll go on later when I have more rant energy.
You might ask me if it’s aggravating and I would tell you yes, but I would also tell you that it’s just simply life. God’s the poker dealer and we are the players. We just simply have to work with the cards he deals us. I do think he deals them to us for reasons unknown to us, sometimes we get a pair or two, maybe a full house, or if we are lucky a royal flush. Other times we just keep folding and loosing our chips. It’s life and after this comes an eternity of love that will be unmatched.
Well, she is yet again in the hospital. This time for her flu shot, which she had a major reaction to. We are talking severe, hives, rash, fever, respiratory distress, some pain I think (by the way she acts), heart rate that is between 170-230. She has not been a happy girl. They admitted her yesterday for observation and to make sure she does not go into any type of shock or whatever. She is doing well and will likely come home today. She is still experiencing all of the above (minus going into shock) but they think she will be fine. The rash, fever, and hives come and go and will do so for about a week. As I always say, it’s never a dull moment in our house.
Also note the heat went out Sunday night so it was a bit chilly in the house. They did fix it in the morning but it’s just one more thing that has gone wrong and continues to go wrong with our apartment. We are on the verge of breaking our lease and moving, we are just sick and tired of all the issues. All we want is some normalcy out of a place we live, not to have problems every week. It’s not the staff as much as it is the apartment itself.
Lauren’s next surgery to remove the tumor (which has grown) that is on her palate is now scheduled for the 5th of December. Please continue to pray.