Summer....

I make a goal to write more on my blog then LIFE gets busy...

We had a wonderful vacation in North Carolina. A man my husband works with offered us his cabin in Murphy NC- the very most western corner of NC. We had a blast! We left out the day after school was out. the first full day there we visited 4 falls about an hour away. How beautiful that was! On Saturday we went to Cherokee NC and the edge of the Great Smokey Mountain Park. Jon & I had been there years before without kids so it was neat to go back. We even stopped and fed the bears in Cherokee. Jon got mauled by a little bear, it was sorta funny. I did ask if the bears had had their rabies shots and they had:) On Sunday we visited the Assembly of God church in Murphy. The folks were so sweet & welcoming. I know people say things like that about churches but this one REALLY was! The pastor preached a good solid sermon and we all went out to eat afterwards and someone even picked up our lunch:) They sang a melody of songs that reminded me of when we used to go street witnessing back at SEC. Kinda warrior type 80's songs. I hadn't heard them in years but remembered every word once we started singing. Steve (who makes fun of MY music) said during the service, "those sound like Petra songs" The pastor's wife sat with Sam in the nursery & he stayed with her the whole time! Glory1 That was a first:) That afternoon we drove to Hawisa Dam and also to Field of the Woods where there is the biggest 10 commandments. We walked up all the steps to the top. Dear Lord I thougth I was gonna die!!!! By mistake on the way there we drove into Tennessee and drove through Ducktown & Turtletown...what funny names!!!

On Monday we had to have our brakes fixed. Evidently we were riding them too much! They may have had some issues before but anyhow a guy from the church fixed them and basically just charged us for the parts! I'm telling ya NC folks are great! Then we drove to CHIMNEY ROCK my FAVORITE mountain!! I actually went there as a kid with my aunts (40 yrs ago this JUne...funny...) and Jon and I had been there a few times years ago so it was great to take my kids there. We walked all the trails including EXCLAMATION POINT! I do NOT remember it being so hard 20 years ago hahah! But it was beautiful and we had a blast. Jon carried Sam in a backpack we rented. I do NOT know how he made it up the mountain with him. I could barely get myself up!!!

On Tuesday we rode the Great Smokey MT Railroad. The kids loved it. I got a bit of motion sickness. It was beautiful and a new experience for the kids, they had never been on a train. We splurged and bought tickets in the a/c car. So glad we did! It was a hot day. The boys were all over the train and Sam loved the motion of the train. It was a fun day capped off by a TCBY (y'all remember them -This Can't be Yogurt) On Wednesday Jon & Steve went whitewater rafting! They had so much fun a real dad& son thing to do. I stayed at the cabin with the little boys. On Thursday we stayed in the Murphy area and hit all their thrift shops. I bought a nice dressy denim jacket for $2 and an afghan for $3:) We drove to the Folk School in the area and looked at their gardens and went through the village of Brasstown.

We drove home on Friday..what a wonderful fun time we had. The vacation was dubbed "the biggest loser vacation" cause we walked so much up & down mountains and to falls....I hope we lost some weight. I thought I ws in good shape since I walk a few miles almost everyday day...Well here's a bulletin for you...walking in Florida and waling in mountains are TWO ENTIRE DIFFERENT THINGS!!!!!! There was more heavy panting going on and my heart was pounding out of my chest...I didn't even care what other people thought either. When we'd met folks on the mountain, they were all dying too! We'd just weakly nod at each other & keep going!

So thankful for that time with my family. Often you hear the phases "God will give you the desire of our heart." Well it truly was the desire of my heart to take the kids to the mountains this summer. I thought about it last year and thought this would be the perfect year to do it. And God worked it out! the guy who doesn't know us real well ( maybe if he had he might not have offered..LOL) offered Jon out of the blue the use of his cabin! We could have never afforded to do it otherwise! It was a wonderful time of making memories together and having fun!!!!! I'm adding some pictures from our trip- hope you enjoy them!

Perseverance...finishing strong!

Tonight I was looking at maps, reading a book about North Carolina, planning our upcoming vacation when Jon turned on the tv. Now as a disclaimer, I hate christian tv for the most part. There are a few people on that I know personally, like Arthlean Ripply (she has a local show), a friend of our's does a night show I'm told although I've never stayed up late enough to watch him, and I actually rather like Jim Bakker...so sue me....

But anyhow Jon turned it on TBN that I will normally only watch with him IF he is rubbing my back and I have a good book to read:) but there was a young man on from Steve Hill school(remember the Pensacola Revival) who was preaching! And it was truth....I told my husband we needed to play that Sunday morning1 The guy was basically saying QUIT saying you are a christian and you still living like the world..living with your baby's mama, smoking a little weed...etc....It was RIGHT ON! Then Steve Hill got up to share. Steve has been dealing with cancer for a few years now. He shared that with the audience and he shared realistically about what was going on. BUT his purpose is sharing was to talk about perseverance! He said he wanted to be remembered as a man who was faithful to God through the good times AND through the bad times! He shared how God uses him when he is at MD Anderson weekly, how he ministers to other patients and their families. He didn't give no big faith talk as in "I'm believing God for my healing" NO he radiated TRUST in God. He know he is in God's hand, what ever happens!!

Oh how the church needs to hear that message!!!!!!!!

Recently I knew a man, who had cancer. He desperately wanted to be healed. I do not blame him in anyway what so ever. He was only in his 40's, had a family, a ministry...plus he was going through terrible pain with the cancer. I read his blogs. While my heart went out to him in what he was going through...I felt troubled by his writings. there was alot of anger, even directed at God, there seemed to be alot of begging and going here and there for someone to pray for him for him to be healed. I even wondered how or if he was preparing his family, teens to deal with his possible death....There seemed to be little trust. I don't blame that man for all he was feeling and I'm sure God didn't either. I feel the blame lies with preachers, pastors, tv evangelists who focus so much on this earth and living here that we forget that we all are gonna die!

I look back at my own life. When I lost the twins, I felt like God had broke a promise to me! Now where on earth did I get that idea???? If you would have asked me straight out, I would have been shocked by that questions. I had great theology. I had a degree from Southeastern college in Bible. I wan't some flake, some "name it claim it" But in my heart, I felt like God owed me. Here I'd serve God all my life since I was a child. We were serving God on the mission field, in the inner city of NYC, and I should have been "covered by the Blood" & "under God's protection". Why not? I was "in the middle of God's will- the safest place to be" and yet, my children died, I almost died ...and I began to believe God had tricked me! He'd broke His promises...I became increasing bitter at God, the whole world....I had NO trust in God. I began to walk away from God, baby steps at first, then I began running away from God as hard as I cold all the while shaking my fist at God.....

So where did this idea come from that God owed me? From many ministers over the years who probably didn't examine their sermons very well. They wanted to excite people. They began to make all kinds of promises that God didn't make! You know what I mean..."come to Jesus, your life will never be the same..." In subtle ways, the message cam across, if you're living for God nothing bad is really ever going to happen to you...No they didn't come out and say that -at least most of them didn't - but it was there. It was there even in some of the newer Christian songs...It was there in the Christian circles "hey how are you? "I'm blessed and highly favored of the Lord" Well heck if you're blessed & highly favored of the Lord life is gonna be great right????

Well according to the Bible that is just NOT true. You can look in the OT at JOb! Or David, read the Psalms what outpouring of feelings....And since God allowed the Psalms to be in the Bible, He must be ok with people making negative confessions....Whew David is more real than I have ever been!! I just opened my Bible to Psalms 102 3-7 "For my days are consumed like smoke and my bones and burned like a hearth. My heart is stricken and withered like grass so that I forget to eat my bread because of the sound of my groaning my bones cling to my skin. I am like a pelican of the wilderness I am like an owl of the desert I lie awake and am like a sparrow alone on the housetop" WOW that is pretty rough huh??? But it is in the Bible!

Ok you can say that's the OT we live in NT times...ok...

My favorite verse in the bible, the one that is NEVER in the little "Bible Promise Books"...John 16:33...in this world you WILL have trouble....some versions read tribulations....There it is, Jesus said...You WILL have trouble in this world...but we are looking towards the world to come or shouldn't we be????? Look at Paul in 2 corthinians 11:23-29 Are they ministers of Christ I speak as a fool I am more in labors, more abundant, in stripes above measure, in prisons more frequently ...3 times shipwrecks...in perils of waters, of robbers, in the city , among false brethren, often in hunger and thirst...besides the other things that come on me daily..." I think this is the scripture Steve Hill used tonight....

I don't hear that message very often do you? We share it, with our church...life is hard but God will walk with you even through "the valley of the shadow of death" Everyone wants to be delivered out of that valley but that's not how it works!

I want to be strong! I want to persevere to the end. I want to be faithful to God despite the trials that come my way. I want to live my life so that others can see that you can walk with God through the hard times. You can totally TRUST even when you don't get the answer you want. God is still on the throne although our world may fall apart....

So how did I turn around? It took a long time, years...hard times....but I began seeing God in a whole new light. so now I try to share that with others. god doesn't promise if you come to him, you get a shield that will protect you from every bad thing , every germ, every accident, every downsizing at work...but He will be your shield as you walk through life and He will give you the grace you need to face each day. It rains on the just & the unjust, we all live in a fallen world but the difference is this world is not our home, we are only passing through! We know who hold tomorrow and who will give us the grace we need.

You can trust God even when the tears are streaming down your face, I know cause I have tears alot but I know that God is with us! He can be with you too!

Discrimination!

For the first time in his life, Sam was a victim of discrimination....

I took the boys to get their hair cut yesterday at a shop. I had signed all three of them in and Shad was already in a chair. Sam was chirping, really excited cuz he loves to have his hair cut especially the razor part. Steve, Sam and me were sitting waiting and the next stylist walked over and asked for Steve. He was on the list next, but I had put them down in random order. I told her it's ok take Sam so he doesn't get antsy. She began to argue with me and tell me that Steve was next on the list. I said it's ok they are all my kids take Sam...then I caught on to what she meant. I looked up in her face and she had a look of total disgust on her face while looking at Sam! Then she asked me if he'd set still and I said yes, I'll hold him. But at this point I was staring daggers at her. Even Steve caught on to the fact this lady didn't want ot touch Sam. Then she very prissy said "well if he moves, I'll have to stop, that's store policy" She said it like she wanted to intimidate me. Well she picked the wrong mama! I told her that is fine, we will go somewheres eles, I don't want you to touch my son. She was a VERY put together person, every hair in place....thought she was too good to work on my disabled child! It was so clear what she thought of Sam.

I told her to go on we'd be leaving when Shad was done. Then I saw her in the mirror saying something to the manager and laughing. Well at that point I was ready to wipe the floor with her! But the manager came over and asked me what was wrong. I told her what happened and she apologized to me and offered to cut Sam's hair. She said the woman had given her another story but didn't tell me what that story was. She told me her brother was almost blind and had cornea problems. She sent the lady on a break and then began to talk more freely. She seemed intimidated by her staff. She handed me the lady's name and encouraged me to call their corporate office (which I was planning to do so anyhow) I did as soon as I got home and they are starting an investigation.

I know the words don't seem so bad, but the look on her face and in her eyes was so mean! She looked as if Sam just totally disgusted her! I mean yes Sam has eye problems and makes funny noises but he's the size of a 2 year old!!! It's not like he's a 6 ft drooling man who might grab her or something!!! Sam is a baby. He's the size of a toddler. He is so cute, how could someone act like that???

I almost cried after it was all over with and it hit me! What a total jerk this woman was! I wish I'd been alot more outspoken with her but I think I was so shocked by her reaction that it caught me off guard. I thought later when I was telling Jon about it it...that lady was like Miss Perfect but you know that can change in an instant. she could get sick or have a car wreak and become disabled. I wonder how she'd feel then? Would she want folks to show her compassion or disgust?

The bible even teaches if we show compassion then compassion is showed to us....wonder if she ever thougth about that????? I have no compassion for that lady ( and don't nobody tell me I should!!!!!!!!!!! and I mean that !!!!!!) But even before Sam, I had compassion for handicapped people. It made me sad not disgusted to see kids who through no fault of their own had issues. I can't even stand to see an animal suffer....I dont'know how someone like that can even work around other people. Surely that wasn't the first time her true colors came through and won't be the last!

One good thing, I am more saved than I think I am! I have to admit, talking about it, my first response would be to cuss her out or even hit her. That's what I feel like! But I did neither. I actually was very calm although my heart was racing! I'm thankful that my God responds took over and m=not my flesh cause I might be writing thias from the county lock up!!!!

I love Sam and am so proud to be his mommy! I'm so glad God gave him to us just the way he is!!!!When he makes all his sweet noises and hugs me, nothing could be more priceless to me!

In Christ Alone

Keith & Kristyn Getty "In Christ Alone"

Healing Faith etc......

Here we go again...

Today we had a couple visit our church. Nice couple..always glad to see new faces....BUT...my husband and I get socked with a whole rant of "word of faith" teaching on healing....

What is up with people who think they have all the answers to sickness/disease? Why MUST they bother us? Go find some children's hospital ward and clean it out if you have so much faith ....I get so tired of people (especially people who are NOT in full time ministry) who want to "share" with us scriptures about healing! Does my dear son bother you that much? I LOVE MY SON JUST THE WAY HE IS!!!!! I'd love to see your numbers on how many blind, brain damaged children you "healed" I imagine your numbers are about where mine and every one's else is at! ZERO!

Through this journey with Sam, I have had such a simple sweet trust in God to bring us through. I do not blame God nor do I question Him. God is good, even when times are rough. God has revealed Himself in such a sweet way as we've trusted HIM. So that part of my journey has been wonderful!

The part of the journey that totally SUCKS is when things happen like they did today. People who don't really have a leg to stand on bibiically, want to take scriptures and turn them into some type of silly formula that supposedly brings forth healing. I'm so glad my relationship and understanding of God is so much deeper and fuller than that. I believe God can heal, but it's not up to me who He heals. I'd love to be able to bring healing to everyone but that doesn't seem to be God's plan. Not everyone gets healed, in fact few people get a physical healing on this earth. Now I'm not talking about the time God healed your headache, or your toe nail...I mean true life changing healings...cancer, aids...etc....I think alot of what we call "healings" are nothing more than the body behaving as God intended for it to do and the headache goes away. I get so tired of people telling me how God healed their headache....Look in the Bible for bibically healing...no medical intervention, a total healing...Alot of times someone will say they've been healed of something, say cancer, but in fact they had surgery, chemo etc...that's not a bibical healing. Not to say that one shouldn't be thankful and grateful to God for any help but let's not degrade the term healing. Someone told me that Sam had received a healing for his eyesight when he had the implants. Now I am so grateful to God for the doctors and the wisdom they've learned BUT that is not a healing! I think God could do alot better than have me do 30 eyedrops a day if He healed Sam!

So WHY do people feel they have to share this "inside knowledge" with us? I've had some crazy things said to me over the years and I'm sure some people I know have wanted to say more but they stop because they KNOW not to go there with me!

Today was a great Sunday, everything was a go and so I speak to a new couple, we have a mutual friend and almost from the beginning of the conversation, I start to feel uncomfortable. I try to steer the conversation back to other things and to speak matter of factly about my son but the conversation keeps getting steered back into uncomfortable waters...I mean do I really what to have a theological debate a few minutes before church is to start? Anyhow I walk away and just try to forget the bad parts ...good service...we have a short prayer for Sam since he is having surgery this week (evidently Jon did not pray the prayer of faith for Sam)..Jon preached a good uplifting message...then after church, unbeknown to me, the husband gives a list of scriptures to Jon about healing etc and begins to lecture Jon...Jon let the guy know he had read Kenneth Hagin too (and was so passed all of that!)....It really made my husband mad too...Here you've never met us before and you begin to show how more "spiritual " you are to us. You don't live our life! You have no idea what we've walked through!

You know it looks so foolish to me and to the watching world...all the silly Christians who run around like chickens with their heads cut off claiming this and that, taking authority over this or that when they have no more authority or spiritual growth than the man in the moon! I'm so glad that my relationship with God is not one of a frantic little human who has to repeat a mantra over and over again until God takes pity on me! I trust God even when I don't understand, even when the winds are blowing...and I treasure the fact that I can trust God through it all! It's taken time for me to get anywhere near that point and it's only through his grace that I'm able to do so!

Anyhow I just had to vent...

This is from Sam's caringbridge page...for Mother's Day....





Happy Mother's Day!
I love being a mom & I love being a mom to my Sam! Being a mom to Stephen was always so easy, never any real problems, from his birth on he's been "Even Stephen". We always felt God gave us Steve to ease us into parenthood. He was such an easy baby/toddler/preschooler/ elementary now middle school kid- soon to be HIGH school. But being a mom to Sam has taught me so much! I feel like I grew up and put on "big girl panties" with Sam. The responsibilities from the pregnancy on have been mind blowing. I feel like I've had the responsibility of his very life in my hands and that is a heavy load. I am thankful that God has been beside me all the way, cause I don't know how I would have handled things without Him!

You get use to all the meds, doctor trips, machines...you're the mom. I've seen it with other families who deal with mucy harder issues than we do, you do whatever you have to do in order to take care of your child! It just become a part of the "new" normal" for your life!

I'm so thankful that God entrusted us with Sam, every day is a gift, every laugh, every snuggle...sometimes I just hold him close to me and kiss him on the top of his head and my heart overflows with gratitude to God who gave me such a wonderful blessing! It's not been the easiest path, but I wouldn't trade it for a million dollars! There are parts, I'm glad I don't have to relive-you couldn't pay me to go through his first year again! That was rough but I wouldn't trade it!!!

May 19th Sam has an EUA (exam under anesthesia) scheduled in Miami. It's not really a surgery, Sam is just put under for an hour or two at the most for various eye exams. It's the only way to take a picture of the optic nerve and we have to constantly compare the picture, from the previous picture to make sure there are no glaucoma issues causing damage to the nerve. With an EUA it is possible to examine every little part of his eye and make sure all is well. It is necessary but I HATE it!!!!!!!!


It's scary for anyone to go under anesthesia but with Sam there are so many issues. It's always a stressful time for me and I make it stressful for everyone involved! He has to get in early so he doesn't go too long without eating/drink cause of his hypoglycemia. And sometimes being under anesthesia messes him up no matter how perfect the timing is. The last time he was under in August, he ended up back in the hospital when we got back home for 3 days. Miami Bascom Palmer is great but they are a teaching hospital and sometimes, try to use NON board certified anesthesiologists on him. Once I stopped them as they were taking him into surgery and insisted on a board certified doctor. (non board certified don't mean they are not doctors, just that they haven't taken their boards yet) As you can imagine, I'm not the most popular mommy that comes in!!!!! The head of anesthesiology once wrote in an email (that I accidentally read) that I was neurotic!!!!! Let me tell you, we had a "come to Jesus" meeting !!!!! Sometimes when a doctor deals with non life threatening health issues, they don't always look at the BIG picture so God has placed me there to help them at least in Sam's case!!!! I'm not saying that they are bad doctors, JUST that 99% of their patients have no other issues....so it's easy to think of things as routine when they are not! I had shared that email with our favorite doctor down there and he was laughing and saying how he felt sorry for the guy when I got ahold of him! It was pretty bad. Jon still laughs about it and says I FINALLY have a diagnosis for myself, I'm neurotic!!!!!! I've had to do CPR on my son, hook him to a machine evey night and watch him have seizures...I have EVERY right to be neurotic!!!!!!!!!!

So there is a lump in my tummy thinking about the EUA in a week and a half! Good news is that there is finally a decent hotel near the hospital. In the past 6 years, for the most part we have stayed at we lovingly call "the Roach Inn'. Because of traffic and where the hospital is at, it is so much easier to stay by it! Bascom Palmer (BP) in on the University of Miami's medical campus. There are about 20 large hospitals on the large campus. Everything from Jackson Memorial, to a mental hospital, a Parkinson's hospital Cancer, Ceder's Sinai....etc......The whole campus is in the HOOD!! It borders Little Havana to the East and Liberty City to the south. It's in the corner of I-95 and the Dolphin "Expressway" and the bridges to take you across to the beach. A few times we've stayed over at the beach but it's just too far in the mornings and a couple times we've stayed by the airport which is only a few exits to the west but if there is bad traffic, it would be impossible to be there on time plus on the day of surgery, it's a pain to have to pack up your room and get to BP by 6 or 7 am...But now there is a Harriot Suite within walking distance (not that you'd want to walk cuz there are some rough folks out there!) I remember the first time we went down knowing how often we'd be going (they told us to count on coming at least once a month) and I cried cause I just didn't think I could do it!!!!! It is not the Miami of Miami Beach!!!!!!!!!!!!! Anyhow I'm so thankful to have a safe nice new hotel to stay in. It even has shuttle service for the 3/10 of a mile so I could leave the hotel room with Sam and they can pack up the room and then come and join me at the hospital (y'all know you have to gt there so much earlier than when the surgery actually begins) And it's only $109 a night- the Roach Inn was $80 a night and I can't tell you how rough it was! Even tho most of the customers were people associated with one of the hospitals, not everyone was....we'd just check in and go stay in our room after we thoroughly sprayed it with Lysol!!! Anyhow this takes alot of stress off me!!!!! I could even go by myself if I had to. I did go one time for some appointments by myself (and Steve) a few years ago but it was unnerving. And y'all know I'm NO wimp!!!!!!!! It is a rough place for a hospital!!!!!!

So that's what up with us! I'll let you know how his EUA went. Please keep him in your prayers that all is well. We only have one eye that is functional now and it wuld break my heart if soemthing went wrong with it! That's why we faithfully do 30 eye drops a day. When I get frustrated by trying to get them all done, I remind myself, how blessed we are to have the option to take care of his sight! What if nothing couldhave been doen and he was completely blind???? I'm thankful for the sight he has!!!!!!