Sam said STEVE!!!!

Tonight we were getting ready to leave my father in law's house and Sam was all excited, he'd been playing on the floor with Steve. We were saying how much Sam loves Steve and I said, "Does Sam want Steve and Sam said STEVE!!!!!!! There was no doubt in our minds that he said it. Then just a couple of minutes later, Jon picked him up and he tried to slide down Jon's front and clearly said Steve again as if he was wanting Steve to pick him up instead of Jon. Since we've been home he has said STEVE a few more times!!!!

This is a huge breakthrough for Sam. We are in AWE of this!!!!

Having said that, there are times when Sam learns something, a new skill and he forgets it for awhile, but he does come back to it so even if this is a one day thing, he has it in his mind now! He has learned then forgotten several things like clapping his hands on cue, somersaulting, but the skills always come back some months later....

So we are a happy bunch tonight! Sam knew I needed some encouragement!!!!

A Day in the life of a Special Needs Mom!

I haven't been writing much on my blog. Between Facebook and Sam's caringbridge page, I write a bit so I kinda get the bug out of my system but I'd like to be more regular in my writings....

So alot is going on in my life right now, the regular stuff with the family, I'm starting a garden and learning how to be more self sufficient(aka GREEN) and now our church has started the renovations it so badly needs. Everything is good and exciting but it can get a bit overwhelming!

I thought being a stay at home mom would be easy and I guess it would with a regular child but Sam....We have teachers who come every day so my house has to be straighten up. Sam can't be "left to his own devices" at all so I'm always closely supervision and interacting with him. My other boys were very easy in this aspect as they could play for hours on their own. Sam can play on his own some but think about a 1 yr old...that's about where he is so there has to be much more supervision than with a regular 6 yr old. He walks some but outside the home, I have to carry him alot and work with him as he gets easily upset/distracted/bothered. Just going to pick up the other boys from school is an ordeal. First I have to change him out of his zip up pj's . He wears them cause that is the only way I can keep him from having poop parties! Then I have to fight him to get him in shoes, make him walk to the van then put him in cause he can't climb up. As soon as he is in he is fighting to get his shoes off. The ride is fine but he gets upset waiting in the pick up area. If the car is not moving Sam is upset, same way in traffic, at red lights....I'm overwhelmed by the time I get the boys! I'm so thankful for Steve. He gets Sam out at home and usually swings him on his swing which calms him so I can get some things done!

It's hard in a way I could never imagine or really explain properly, it's like living GROUNDHOG DAY over and over...Sam has not progressed in years and probably won't progress beyond this point. Which is fine with us we adore him but it is alot of work! I have no one besides Steve and Jon to help me with Sam. I've looked into respite care but I'm not sure I could leave him with a stranger. Plus I wouldn't trust them with his eye meds...I love being with Sam and most of the time, really ENJOY it but I wish he could show a little progress! When I think of the future it is so scary to me, Will he always be a toddler? When he's 20 and I'm 60 ??? Thank God he's a midget!!!!!! Sometimes I get mad when I get the impression from people that I do nothing but stay home all day! Listen, I used to be a probation officer supervisor and not have the responsibility I do now!! It's a different type of responsibility but it's more heavy than anything I've ever dealt with before!

Everything is an ordeal because we have to think about how Sam might react. There are some restaurants we don't go to because he cant handle the noise/echo factor. He flips out in Cracker Barrels, Sonny's, any place that echos...and he can't deal with waiting in line for anything. We don't like him to be in any crowed place because of germs. When we go out to eat, I take my trusty Lysol or Clorox wipes and wipe down the highchair and table because of the germs. And we always set him between us because it takes both of us to feed him and keep him occupied.

On Fridays we try and schedule appointments and do errands so Sam doesn't have to go because it's such an ordeal. Next week I have a doctor's appointment and Jon can't get off, so I have to take Sam. I'm sure that's gonna be a pretty picture! Poor doc will probably go crazy. Sam doens' do good in doctor's offices, high ceilings, waits...it's rough! He's so little people just think I have a cranky baby but sometimes he gets so wound up it is embarrassing! We have a relative who is going through some health issues and others don't understand why we can't be there more....well it frustrates me because I feel no one understands our life! No one has any idea of what we have to do in order to make it through, just day to day life! One time somebody told em that I make it look so easy to deal with a special needs child...I just looked at the person and thought "you have no idea of what it takes "

Since Sam is 6 years old, I have learned do's and don'ts and I live by HIS way because it just makes life easier not to try and fit him in a mold. We don't make him perform, we flex with him so it's easier for all of us. We do most of the things we used to do, we just do them differently...When we go out to eat, we go somewheres he can handle and if there is a wait, one of us walks him in his stroller until his food is on the table. And it doesn't matter who we have with us, Sam comes first. Often we have guest speakers that we take out to eat, but we do it on Sam's rules:) We still go on vacation, we just gear it around Sam's needs. He can't get his head wet so we don't do water parks as a family anymore, nor do we do anything that requires waiting in line. Thankfully the theme parks have handicapped lines and that's what we are planning to try next month when we go to Disney. If we go to the beach, after a while one of us has to bring Sam back into the room so we stay right on the beach and keep everything close.

We take his snacks and drinks. I just learned to take straws with me as Sam can't drink from a cup and not every wheres has straws anymore! I learned that at Hillsborough State Park at the snack area. I had to give him sips out of the round top of the juice bottle I bought for him.

So I don't mean to whine, so many others have it so much harder than we do and Sam's such a roly-poly joy but there are times when I feel the pressures around me and wonder HOW can I do everything that I need to do? I can't be as involved in the boys' school as I'd like. I JUST had a real conversation with Shad's teacher and half the year is over!!! I was much more involved in Steve's school when we just had Steve and I worked full time!!! I feel guilty about not being there for them as much as I'd like to. Steve was in 3rd grade before he went on a field trip alone! Now those two do all of their stuff without us. With Jon working two jobs and me with Sam....We did make it to most of Steve's basketball games although there were a few, that Sam just couldn't handle and me and him sat outside but at least we were there!!!

I'm not involved in the church as much as I'd like to be. Either Steve or I have to be out with Sam after the singing. He can't stay in service unless he falls asleep, plus there is his eyedrops which usually got out of whack on Sundays anyhow! Even doing simple things like Ladies Ministry is often more than I can handle. And also sometimes I feel so raw, that I don't feel like being all positive and uplifting!

Life is very complicated for us. It's worth it to have our little Sam but it's not easy. I've always had to have my ME time just to read or walk around the mall, or whatever and that's pretty much gone. When I do go out even if it's to get groceries, I feel guilty and anxious because I've left Sam. Now that Steve is 14 yrs old and so responsible, we do let him keep the little boys while I run to the store while Jon is at work but I'm calling every few minutes. It is easier than having to take them all with me or waiting until Jon is home from work.

Anyhow I've whined my limit...I try not to whine much as I see so many other familes going thorugh things and I realize in many ways we have it easy...but sometimes I need to vent!

Church Renovations

Here are some pics of the work that is going on here at Grace Church. Our old Sunday School rooms/church kitchen has been gutted to make a big new Fellowship Hall and new church kitchen! WooHOO!!!! It's gonna be green and cream to match the church (when it is redone) The tile is in and some of the cabinets. I've picked out some green carpet and can't wait until it's laid:) The big room will be used for children's church on Sunday mornings and the Teen's service on Sunday night. Of course when all the work is being done on the main building, we may have our services in there for a month or so. It's exciting to see things happen around here!!

When we came here four years ago it was so disheartening to see all the junk and decay. But people have pulled together and done alot although there is alot to do. I should have taken pictures from day one but I just couldn't bring myself to do so. But when all the junk was taken away it was better. We have done alot of cleaning out and throwing away.

Looking forward to getting the work done on the church!

Square Foot Gardens

I'm so excited this week we put in 2 Square Foot Gardens. They are raised beds that are 4 ft by 4 ft. So it's equal to 16 square feet. I put in dividers and have 16 little sections in each garden. We're gonna put in one more next week. It was alot of work but it looks neat and pretty. supposedly now all the work is done except for watering and harvesting:) Let us hope so as I was barely able to roll out of bed this morning. However 3 advils, 3 aspirins, a hot shower, heating pad and a Pepsi has got me back to normal!

I love having these done. It was a goal I had for this year so we'd eat healthier and learn about being self sufficient!

Well I've cleared out our house of anything we don't use or need and cleaned out all our storage stuff. This weekend I'm going to have a yardsale for us and for our church. I'm selling just a few of the kid's toys to make money to buy Sam some expensive therapy toys but everything else is going to the church's remodeling campaign!

I've also taken alot of my clothes/shoes/household stuff I no longer use or want to a consignment shop. I made $17 lst month and I only had stuff in for a few days:) So it's fun to get all this stuff done:) I feel so on top of things and organized.

Last weekend we built a grill with concert blocks. It was fun and the boys really liked doing it. Then we cooked out on it that night. They are so proud of their grill and it worked great!

So we are on our way to being a country family:)

Emergency Preparation----Living Green

Ok I'll start this blog by saying ..."I am NOT a KOOK". that being said....

Emergency Preparation, living self-sustaining...whatever you want to call it...

I have felt in the past couple of years that we should be more self sufficient as a family. There are so many things going on in the world, politically, natural disasters, threats of terrorism and pandemics, that it pays to be prepared. Ultimately no one can prepare for everything that could happen and our lives are in God's hands but you can make wise decisions that can benefit your family.

So I've started reading books, looking on the Internet and watching some TV shows about being self substantiable and more green. It's interesting to me that so many different kinds of people are saying the same thing. You got people who are FAR left and FAR right as well as people in the middle saying "Be Prepared" We all saw the lesson of Hurricane Katrina where thousands of folks, did nothing to prepare and trusted the government to meet all their needs, and the government couldn't right away. I remember when the first hurricane of '04 was turning towards us and how it went from a small category 2 hurricane to a category 4 in a matter of minutes and how it changed course! I felt true fear as I rushed out to get a few things and there were only a few stores opened and they had nothing. I was unprepared. I don't want to be like that ever again.

So I've been going through all our stuff, to remove clutter. With 3 kids, there is plenty of clutter. I've cleaned out all the rooms, closets and drawers. Why? to make room for provisions for our family. I've still got to go through our storage stuff and I'm gonna have a personal yard sale or just donate our stuff to the church and have a church yard sale.

I've been making a list of things we need in case of an emergency situation that would last for a month or so...What if there was a disruption in trucking and the stores didn't have anything on the shelves? Or the grid was down and the electricity failed for a few weeks? We lived without electricity for 8 days with the last hurricane of '04 and it was hard. We didn't have any in our home nor could you get gas, the pumps didn't work, the stores were closed down...it was rough!

So I have a list and now have space to put the new stuff. So I'm planning to use some of our tax return to stock up on canned goods and supplies. In the next few days,I have an appointment with a company to put a hand pump on our well so if the electricity is out, we can still have water. I have a lady coming to help me set up 2 box gardens for fresh veggies and fruit. They will be 4 ft by 4 ft and have 16 boxes each. In each box I can plant a different vegetable or fruit. One garden should be able to feed a family of 4 for a year. So I'm doubling up. I'm also looking into some fruit trees. I've thought about getting some chickens but....I have an extra month's supply of Sam's meds and I'm going to stock up on at least a month's supply of Pedisure!

Ultimately I trust God to provide but I've felt this stirring inside for awhile now, to be prepared. Having 3 children makes you think more responsibly also! It's important to be able to meet their basic needs. It's funny, but I've meet all kinds of people who are doing the same thing, they feel uneasy and realize they need to be prepared for a disaster.

I'd love to have a "green" home with solar power and all that good stuff but I can't afford that. So I'm doing what I can to be self sufficent!

Rainy Day thoughts on Contentment

Listening to music, lots of thoughts just drifting around in my mind. Rainy days are comforting to me, makes me feel cozy.

Life is funny, the way different places/people come back into your life. I've had that experience several times. It's funny to me that we are pastoring this church that I attended as a student at SEC. I would have never chosen this, I saw us as working in the urban setting. Funny how having kids can change life. For years Jon and I felt restless, we didn't want to put down roots. Never wanted to buy a house, it would be too much trouble if we moved. We were always looking at different opportunities. I think we thought we might end up back in New York or working in a large city with Teen Challenge. We interviewed different places but nothing seemed right. Then God opened the door to this little church. And Jon was able to transfer to the prison here in town as the chaplain. It's just nice. Recently we were offered a possibility and both of us had no desire to interview for it. It just wasn't something we felt to look into.

Why, because we are content with life right now. We never want to be stuck in the mud, or unable to change but being content is a good feeling. Knowing you are right where God wants you to be at this juncture of life. I always look at life as an adventure, not a destination and time could change us, move us but NOW is nice. The Bible teaches us to be content "in whatever state we find ourselves in". We used to laugh when we traveled so much over that scripture:) But it is so true. I know people who are not content with their job. home. spouse, etc...and those are some unhappy people.

So be content where God has placed you. If you are in the wrong place in life, whether that is geographically or spiritually, find your way back to where God wants you to be.

All the way, My Savior leads....

http://www.youtube.com/watch?v=IttW3GRRGXI


All the way my Savior leads me
Who have I to ask beside
How could I doubt His tender mercy
Who through life has been my guide

all the way my Savior leads me
Cheers each winding path I tread'
gives me grace for every trial
Feeds me with the living Bread

You lead me and keep me freom falling
You carry me close to Your heart
And surely Your goodness and mercy witll follow me

All the way my Savior leads me
O the fullness of His love
O the sureness of His promise
In the triumph of His blood
And when my spirit clothed immortal
Wings its flight to realms of day
This my song through endless ages
Jesus led me all the way
Jesus led me all the way...

What else needs to be said...????