Thursday, May 27, 2010

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!

Sunday, May 16, 2010

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...

Wednesday, May 12, 2010

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!!!!!!

Sunday, May 2, 2010

Change- the Tea party






Wow there is so many different things on my mind...I have a friend and she & I say we could solve all the world's problems if we could just rule it for a day...hahaha but sometimes I just want to fix things! I can think of several people's lives I wish I could change for them and set them on the right road in different areas....I wish I could change my country for sure!!!! Oh but I can do that! It takes one person at a time combined with others to see TRUE change in this country. My brother recently sent me an email with the heading "Three things to thank Obama for" Well my brother is taking chemo right now so I thought maybe his dosage had been upped and was messing with his brain cuz he is a STRONG conservative!!! But when I opened it and read it...one thing stuck out to me, Obama's time as president has brought together the people in this country in away I've never seen before!

The Tea party movement and the 9/12 project! This movement, only a year old, has made an impact already on this country. I know some of my religious spiritual friends say "well I'm just gonna pray for our country" It is good to pray BUT I can promise you that our Founding Fathers did ALOT more than just pray!!! They took the action they deemed necessary to throw the English out of this country! Some people take the position that God puts into authority those He wants....I'm not sure that a democracy -where people with FREE WILL - vote is exactly what the Bible is talking about. I know that God knew Obama would be elected but I can't imagine that that would be God's "perfect " will. God allowed Hitler to reign in Germany but that does not mean that was God's will....And it took the USA to bring about a change! I think sometimes we get our Christianity and politics a little screwed up!!!!

America is standing at a crossroads today like never before. It's been coming for a long time since the 60's but this is the shinning hour for the left. They hate our form of government. They want our lives from the cradle to the grave, controlled by the government! But that is not America! I have friends from other countries who barely can grasp the freedoms we have in the USA for health care, decisions for our children, etc...I don't want the government telling me what to do! It's as simple as that. Our founding fathers did not want the government to tell them what to do either.

It's time for us to stand up and let our voice be heard WHILE we still can!!!! So if you are wondering what you should do, get involved...find your area Tea Party, 9/12 project (usually they are combined) look on line, that's what we did. Make your voice heard. Take back this country. I don't want our health care, our fiances, our speech, controlled by the government and I'm sure you don't either!!!

I'm excited about the change that is coming. I love the fact that the old politicians on the left & right are worried about their positions...Let there be change, get rid of all the old politicians who have been there for decades! Term limits!!!!!

Come be a part of history!!!!

Disney




Some pictures from Disney, the kids loved it. Shad had never been so he even like the parade. He really liked all the roller coasters. He's a brave kid for 6 years old, or too stupid to be scared:) Shad & Steve did alot of running around together. Folks I'm telling you have one kid early on and then wait 10 years and have the others:) It works out so well to have a built in baby sitter! Hey maybe the Duggers have it right!!! Going on the roller coasters really hurt Steve's back I ended up having to take him to the doctor for it.

We had some issues with Sam's handicaped status!!! Just because he is so little, I don't think people understand all his limitations. It was a mess. They offered us another dsy, free and I wrote an email to the head dept of Disney. I was so upset by the treatment we got, I hope no one else would have the same thing happen to them! But other than that the day was fine. Espicially for Steve & Shad!