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!!!!!!

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!

More pics from HRSP

More pictures from our day at the river. I love going but I have no envy for the campers! I like to be able to come home to my cool & clean house. I'm an outdoor girl but not one for camping! Too many bugs & skeeters! I can stay outside all day but I want to know I can come home to a clean shower and a/c! Today the mosquitoes were so bad we had to go and buy spray and the little store. I really don't like spraying chemicals all over us but it beat the alternative! But it was beautiful today so it was worth it. We got a good hour hike in, thank goodness for the jogging stroller, it can go over everything. Sam loves for us to walk him, he sang/hummed a little song to us today so sweet!

Hillsborough River State Park trip 4/8/10

We had lunch then we went to the HRSP. This year we bought a year pass to the Florida State Parks and since HRSP is only about 10 miles from our house, it comes in handy. It's only about 4 miles from the prison so Jon can go and walk there during his lunch break. Most of the trails are very shady and cool, well as cool as it can get in Florida. We saw a big alligator today and some turtles. I'd love to be out there at night with a flashlight, I bet you'd be see alot of red eyes in the River. Red eyes are the alligator's reflection. We used to live on a lake and it was something at night to count the alligators! I like HRSP, it actually has a small rapids, that you can walk to. It's so pretty & peaceful!

Pics from our Easter Lunch and the new chairs for the church!

Sunday was fun and worked great in the new hall. It was so nice to have lunch in a cool clean new fellowship hall! I loved the big serving areas and we had hookups for crock pots and warmers! Yeah! Fun!

Today the new chairs are in the back of the sanctuary until we can get the pews out. Hoepfully we can sell them on Craigslist!

Easter 2010

Easter was great! Sam & the other boys loved their Easter baskets. For the first time Sam to some small extent, hunted Easter Eggs. He held his basket and would pick up an egg when Sam would take him to it. He was laughing alot. We had a great lunch at the church in the new fellowship hall and then we went over to some friends home and the boys played in the pool. Shad was so cold he turned blue but he wouldn't stay out of the pool.

The night before Easter Shad decided the barber had not done a good enough job on his hair so he cut it for himself! He has 3 huge chunks missing!!! I didn't mind so much that he did it but he would not tell the truth for the longest time. That really bothered me. There was black hair all over the bathroom counter & floor and eh was standing there with chunks out of his hair telling me he didn't do nothing...I sent him to bed and didn't let hi help with the Easter eggs for the egg hunt. I hope he learned to tell the truth!

We have new chairs for our church given to us by another church in this area! Yeah They are burgany & match the carpet better than the old pews did. I'm trying to sell the old pews on craigslist. If they don't sell soon, off to the dump or Habit for Humanity they go!!! When all the remodelling is done in the church, we'll have green chairs and these will go in the fellowship hall. It all worked out well. It's exciting to see things happen around here!!

By the end of this month, the work should begin on the parsonage roof and hopefully next month on the church. It's exciting to see our dream/vision for this church's facilities come to pass!!!