Thursday, July 2, 2015

Putting it all together!

Well I'm a liar!  I thought having wonderful FIOS internet connection would mean I was on line more but I've not been.  We are still busy on the little things you do when you move.  It seems we've had lots of little things to do.  Me being the weirdo that I am find it hard to relax with things undone. 

The kids are doing good, Sam is finding his way around and Sarah went down the hallway on her bottom the other day.  She was looking for me.  Selah seems to love her room and her sleep has been great.  She used to wake up every night around 3am but has been sleeping most nights from 9pm-6am which is perfect.  Selah is able to have showers daily!  Before we only gave her a shower weekly as it was hard and dangerous to get her down the narrow hall and into the bathroom..  She would get so stressed out and it was scary getting her in.  She had to be carried sideways which was dangerous for her and for her nurse or Steve.  Now she can be wheeled from her bed, in her bath chair right into the shower.  She loves it.  The nurses love it too.  We also got her a Hoyer lift, something we will need as she grows to move her safely.  Her room is so spacious and airy, she can sit in her chair at the window and seems to enjoy it.   It is so wonderful for her to have all these conveniences and for that I am so very thankful.  . 

The big kids are doing great too!  They love the house and the WIFI, of course.  Even tho they have their own rooms, they tend to play video games or watch tv in Steve's room until it's time for Shad to go to bed.  I love that they like being together even when they don't have to be:)

We're busy.  Our church gave us a housewarming shower last Friday.  Man we were so blessed!!!  A dear friend bought us rockers for our front porch!  Now it looks like home!  Everyone was so generous.  We outfitted Selah's room with a microwave, fridge, coffee pot, a tv ( a nurse brought in) and wifi.  Our nurses are happy.  They worked for 2.5 years in a small room, having to share a bath with the whole family.   Now they are able to have some comforts too. 

I'm so tired every day it is pathetic.  I tend to wake up early as our room has blinds and faces the east.  Once I'm awake I can't go back to sleep because I think of all I have left to do.. Then I stay up late....   All my aches and pains are back with a vengeance.   Somehow in the move, my "bird finger" aka middle finger got hurt and has stayed swollen.  My husband says it's poetic justice because I 've used it too much over the years.

But the house is great.  We are just getting used to it.  It seems more like a resort at this point than our home.  After we'd gotten everything out of our old house, I went back and had a good cry.  Almost a decade of memories were in those small walls.  Some sad times but mostly happy times with my favorite people on earth.  It's been renovated because we have someone moving into it. 

Today we took Sam to Neumour's Children's.  We decided to try an eye specialist there.  Our doctor in NY would like us to have someone near us to follow Sam.  We'd tried an adult ophthalmologist but he seemed too overwhelmed with all the "extras" that is Sam's eyes.  We were pleased with this young doctor that we saw today.  She seemed to be willing to work with Dr A and actually knew of him.  She tried checking Sam's eye pressures but with an implant it is next to impossible.  But if she was right, his pressure is around 23 which is too high.  Dr A tends to check his pressure just by feeling the eye and by comparing the optic nerve to pictures he'd taken before of it.  He'd warned me not to ever get too excited about a reading that someone else does who is not familiar with corneal implants.  So I'm trying not to.....She is going to call Dr A and see what he thinks.  We were planning to go to NY in Sept or October but may have to go sooner if there is really an issue going on.  The pressure measures how the glaucoma is doing.  A reading of 14 is good....19 is worrisome....above not good.    So we wait and see what is decided.   We did love to watch Sam play with the toys for the first time ever. 




Here's some pictures of my/our work. 
From White to.....

Doesn't it look so much better?
I painted them first time ever for me.  I need to add a second coat but I will wait till next week

Someone gave me these bar stools, the kittens like them as you can see!
Walmart special.  Looks pretty good!

I FINALLY got my books out of storage.  I felt like kissing them!!!
So with the second hand (actually third hand couch), table and chairs from Salvation Army, second hand bar stools and 4 bookcases from Walmart...I spent about $350 on the whole living room and it looks great. 
So along with FIOS we have CABLE TV.  Don't laugh at me!  I've lived with satellite tv for  over 11 years.  Nothing like satellite for going off during bad weather.   AND we have NETFLIX which I still do not quite understand nor do I know how to work it but thanks to Shad he takes care of it for me.   I realize that we are just coming into this century.....and for all you folks who live in a big city DON"T laugh at me!    There was a time that you'd never heard of high speed internet or Netflix may have been ten years ago but still.......LOL
So things are good, just still busy.  We are hoping for some "down" time this weekend.  Maybe I'll figure out the remotes :)



Friday, June 26, 2015


The Bible is what defines Marriage to me.

Genesis 2:24  "Therefore shall a man leave his father and mother and shall cleave unto his wife and they shall be one flesh." 

And in Mathew 19:4 Jesus shares this verse and truth again. 
And He answered and said to them, “Have you not read that He who made them at the beginning made them male and female, and said, ‘For this reason a man shall leave his father and mother and be joined to his wife, and the two shall become one flesh’?  So then, they are no longer two but one flesh. Therefore what God has joined together, let not man separate.”

That settles it for me.

I'm going to believe what the Creator of this world and all that is within and not what five people in black robes say. 

Thursday, June 25, 2015

What a change a week makes!

We went almost a week without internet or tv.  Basically I got my news off of my phone from FB.  Of course we heard about the terrible shooting in Charleston and the amazing response by the church and the victims of this horrific tragedy.  God bless them.  They have shown the world how to react to tragedy as Christians.  They've shown forgiveness- I don't know if I could do what they've done.  I pray God is with them every day and that He will continue to give them the strength to go on. 

Then after all that news I start seeing absolutely crazy posts about people going nuts about the Confederate flag.  I didn't know how the shooting and the Confederate flag played in together until a friend told me that the shooter was pictured with the Confederate flag in the background or holding it.  And the news kept coming....soon their were calls to change the name of streets, schools and monuments....even the Dukes of Hazard because they had some relation to the South's past......

My great great grandfather fought in the War on the South's side.  He was no slave owner.  He lived as a small farmer near the banks of the Steinhatchee River in Dixie county.  From what I understand of our family's history, his parents or grand parents were probably indentured servants themselves.  He lived well into my grandmother's and great aunt's life time and talked about the War to them.  From every story I was told ( and believe me they didn't try to tidy up anything) he fought for state's rights.  He had no dream of owning slaves.  I'm not saying that slavery was not a part of the War but it was not the only part at all.

I have no great love for a Confederate flag, don't think we have one.  I don't really care if it flies at a state capital or not.  But I do care about the rewriting  or sanitizing of history

What came to my mind immediately upon hearing all this crazed rabid talk, was that we are living in a country that is becoming like communistic China.  Our history is being rewritten and erased.....that is exactly what happens in other countries.  Are we going to let it happen here?  That worries me. 

So Wal-mart and other companies are no longer selling  Confederate flags or things that have that image on it.  But yet they sell nasty music and other things?  Come on.....this is nuts!

The CF has never represented to me slavery or racism.  I've seen black people wear clothes with CF flag symbols on them.   When I think of the CF (which I don't too often) it just symbolizes the South. 

You know everyone has differences.  Southern folks are different from Northern folks.   I have more in common with a Southern black person than I do with a Northern  white city person.  That's the truth.  I lived up north in NYC for about 5 years, I really know there is a difference.  It's not that one kind of person is better, just different. 

Now I do think about my friends who are black, I don't want to see anyone hurt by anything but I don't really think this was a real issue. 

It amazes me how something gets all blown up in the media!

What the media SHOULD be focusing on is the love and forgiveness that the church and family of the victims are showing. 

A flag did not cause this shooting.  I've seen a picture of the shooter holding a burning  American Flag.  Does that mean that we attack the American Flag next?  I've seen it called for already.....

And don't blame the gun....There are millions of gun owners in America who will never use a gun for a wrong purpose. 

We have several security plans in place for our church.  I'm not going to discuss them here but we are prepared if we ever have to deal with something like this.  It could happen.  We had something happen a few months ago that made us all more cognitive of the need to be prepared. 

Did you know there was ANOTHER church shooting last weekend? A black man killed five people in a black church.  I just caught a snippet of a news piece about it.  Isn't that interesting?  A black on black crime is not widely reported by the media.....

When a Muslim extremist does something we are told that the person(s) are not acting for the whole group.  Yet when something like this happens, the media goes nuts.  And every talking head or politician is busy trying to out do each other. 

Folks we live in crazy times. 

Wednesday, June 24, 2015

New House!!!!!!

We have moved!  We had the House dedication on Wednesday afternoon.  It was roasting hot!  But a beautiful ceremony.  We estimate about 200 people came to the dedication, or came later.  We got to see some friends we haven't seen in years and meet some new friends. 

Thursday we were up early ( 4:30 am I woke up)  We'd packed two of our vans before our friends got there to help.  Then once the whole gang, about 15 people helping) we got the big truck packed and several trailers and we were off!  To be honest, our friends helped keep me focused.  it was a huge job and I found myself jumping from one thing to another.  By Thursday night we had our beds over and spent the night here!  We were not expecting to spend the night till Friday.  We brought Sam and Sarah's twin beds and their cribs but by the time we got ready for bed, we were too tired to put the cribs back together so we put them in their beds....both of them went right to sleep:)   So we are a crib-less family!!  They've both done fine.  Sam will put himself to bed.  He climbs right up in and pulls his blanket up. 

Friday we had help again thankfully!   We moved Selah's room.  Two of our nurses took her out for a while and everything got moved and put back together for her.  She was a little stressed that night but she soon understood that she was ok and not in a hospital and she has done excellent since.  She is actually sleeping better.

Saturday we with the help of the H Family (who had been helping daily) got almost all the boxes unpacked (expect for the books and DVDs) 

Sunday we went to church and did a little work on the house.

Monday one of my best friends came and helped me hang some of our pictures & rearrange some knick knacks.  Her home is very "clean" and that's how I want to do ours.  I've never had too many things up on walls but I could be tempted here to get a little too much things up if I'm not careful. 

Tuesday we settled in more and I got two crock pots going for Sarah.  I made her beef stew and chicken noodle soup.  Then I pureed it all and she now is back in business with "her" baby food brand.  She was tired of the canned soups of the last few days.  I make her own 'baby food" and I make it thick and with a lot of ingredients to try and ensure she gets her full nutrition.  She also drinks some Pedisure shakes that I add fruit too.  Sometimes she can eat our meals if they are kinds that will puree.  It just depends so I like to have plenty on hand for her. 

Today we got our internet & cable up!  HAPPY Day!  We have REAL internet!  NO more satellite!  YEAH!  Now I have no excuse not to blog. 

So it's been a wild few days!  I just really want to thank everyone who helped us move!!  We couldn't have done it without all the help we got.  It was a huge job-the biggest move that we've ever tried but it went smoothly thanks to all the willing helpers we had!

Habitat for Humanity outdid themselves on this house.  Every little thing was thought out for our family.  The house is absolutely wonderful.  Selah's room is amazing and our nurses are so happy.  Their job is so much easier now.  It's been great to see their expression and happiness. 

Sam and Sarah have done much better than I thought they would.  Sam is starting to explore the house some.  He has figured out where the front porch and the swing is for sure.  Last night I asked him if he wanted to go swing and he led the way.  So I sat with him and rocked him while we listened & watched the rain. 

Sarah has adjusted.  The hardest thing for her is that I've been so busy and she wants me to hold her.  We've had a wonderful young lady helping us with the two little ones and that has helped her a lot.  She likes her various toys that roll, she has plenty of room to scoot around. 

So here's some pictures.....

The long road to our house.....

I love living off dirt roads.
HH planted Confederate Jasmine  for me!!!!!!  It's growing like crazy in front.

Front porch swing
We've not got a lot of chance to enjoy the backyard yet.  It's literally almost 100 degrees daily with high humidity.  Then by the late afternoon the thunderstorms start. 
I LOVE the pines trees so we put the kids playground back there.  The pine smell is my favorite.  There is just something about the smell of pine needles that brings me back to my childhood.  The town I'm from Perry Florida is THE Pine tree capital so I guess I get my love for pines naturally.  The big pines in the backyard is what made me fall in love with this property the first time I saw it. 



The storage room is full

Selah's suite!
this is her bathroom.  the shower is fantastic.  She used to get a shower once a week and a bed bath every day.  Now she can get a shower daily.  In our old house, it was very hard to get her into the bathroom, but not here!

this is today:)  Selah is enjoying the big chair.
the cat's area


Sam's and the other kids' bathroom

the laundry room which has been in great use as always

Shad's room
obviously we have not done all the decorating.  Shad has Star War pictures to go up

our room with our own bath

Sarah's room

Sam's room
Steve's room




My plan is to sand and repaint the dining room chair and table with black trim instead of white.  I've got everything bought but I'm a little afraid to do it but the white just doesn't do it! 

see the little half door?  That's to keep Sam out of the kitchen and safe!
So I hope you've enjoyed all the pictures.  We feel so blessed by all that was done for us.  If you are wondering Habitat for Humanity helps families but the houses are not free.  We still have a mortgage, insurance and taxes.  But there is no way we could have afforded a home that was handicapped accessible for our kids without Habitat's help.  We had looked at homes on the market and what we could afford, was about the same size of the home we already were living in.  And none of the homes had anything that was handicapped accessible, we would have had to have them all remodeled.  But with some much labor, materials and even the land donated, this home became something we could afford for our family.  We are truly grateful to everyone who had a part in this.  It makes life so much sweeter and easier for our kids, especially our little ones. 
 (article about dedication)



Sunday, June 14, 2015

Most Improved!

A quick update on my friend, Robby was downgraded from ICU to a regular room and is off oxygen.  His wife was told that the only reason he made it was because of his age.  he was extremely sick but thank God he is on the road to recovery!  Thanks for your prayers for him and my girl friend  

Well we have been busy packing!  I know I say that all the time but it is amazing how much there is to do in a move with this many people.  I actually had to repack the kitchen as I packed it when we thought we were moving in April..... since then I'd been taking things out as needed.  We will move things on Thursday, Friday and Saturday.  I'm not sure how everything will work out right now but I HAVE A PLAN!   Luckily I've been able to pack some things into the church's various rooms/buildings.  So those things will go first and be unpacked before we start on what is in the house.  We are planning on doing Selah's room on Saturday and hopefully doing it all in a couple of hours so she can be moved in with no stress to her!  Her and her nurse will go to the movies for a few hours until it is all moved out of her old room and unpacked in her new room. 

Hopefully I have someone to watch Sam and Sarah!  Their normal babysitter is sick along with her whole family so I don't know how things will go.  I can only keep my fingers crossed.  Otherwise, Jon will have to stay home with them.  The kids can't be up in al of it!  And  I have to be able to tell folks where to put things because I have it all in my brain LOL.  He doesn't know how I want things.  My husband is NOT one of those husbands who get involved or is interested in decorating or doing house stuff LOL   He likes it once it is all done, but he doesn't have any big preferences other than NO pink (for him) and it has to be comfortable. 

This whole moving thing is exhausting!  The logistics of moving 7 people are overwhelming.  We are trying to be precise & thoughtful.

When I worked, I tried to have an idea of "Touch it ONCE"  That meant I could only touch a piece of paper one time without doing to it what ever was needed.  If it needed to be filed, it should be filed the first time I touched it instead of putting it into a pile of filing.  If I needed to return a call, I'd return it then instead of putting the paper in a pile of other calls....Now I know I did not always live up to that but I tried to and that's what I'm trying to do in this move!

We also took time to go and see the new movie Jurassic World.  I loved it, we all did.  I love going to movies with my family.  We had to take Sam and Sarah and Sarah liked the theater seats.  I usually hold her or keep her in her wheelchair but she was antsy (probably the loud noise) and she wanted her own seat, that she proceeded to rock the rest of the movie.  It was cute.  I think she wants her own theater seat.

Friday night we also went to Shad's award ceremony.  He received the Most Improved Award for 5th grade.  His teacher shared how Shad never has struggled academically but he has struggled with telling the truth and doing things the way he was told to do them.  It was a little funny to me, being the sarcastic person I am.... in fact I felt my husband shaking with silent laughter too, and that almost did me in.  Luckily the room was dark and just the stage was lite up or we might would have embarrassed ourselves.  I guess there is just no easy way to give someone the Most Improved without sharing how or why they needed to improve!   Shad was quite happy about the award.  He also had straight A's for the year and did 90 school books.  He finished 5th grade, by being firmly into 7th grade work.   Wonder how far he will go next year?

This is a picture of our giant steroid kittens nursing.  Ladies this is what YOU look like when you are nursing your four year old LOL!!!!  Gladys is quite tired of them and stays outside most of the time.  She'd rather deal with the dog than the kittens LOL  The kittens are just over 3 months old!  Are they huge or what???

Just three months ago!!!!!
Yesterday I opened the gate and looked beside me and JUMPED!  Look at who was looking at me!   Guess he likes the honeysuckle bush too.  Don't worry he was not harmed, just a little garden snake.

Well I don't know how often I'll have a chance to update this week but I will when I can with lots of pictures!!!   Wish us luck on the move ....I'm just praying I will not get too stressed out or drop a box on my toe....Especially with half the church helping us LOL!~!!!!  They might not think I'm a good PW!

Wednesday, June 10, 2015

School's Out!

School is out for the summer....FINALLY!  So today we are at the library as a major thunderstorm swirls  around us.  Shad is reading a new "Goosebumps" book, Sam is working on his GeminIIa program, Steve's working on some of his paperwork for college and Sarah is playing on the floor.  We have been a little lax with Sam's GeminIIa speech program because we could not down load the next session to his I pad and didn't have the time to come to the library.  So we are downloading everything we can so he'll have it for the next couple of weeks.  We can't wait to have high speed internet!  If you don't live in the country you have no idea in this fast paced world of how hard it is to do things!  If you remember dial up....that's about what we have. 

So we have only one week to go before the dedication of our new home!  The dedication will be next
Wednesday afternoon.  We plan on moving Thursday-Saturday. Since we have so much of our things packed up already and in our church's fellowship hall, those things will go first.  then we will work on the church office and nursery which are also filled with boxes.  We plan on doing that on Thursday.  Friday we'll move everything left out of our house and all the furniture.  Then Saturday morning we are moving Selah's room.  Two of her nurses are coming to help us and keep her as calm as possible.  So I have it all worked out in my mind how it will go.  I'm a pretty good mover and rather organized most of the time, I've just never moved with 5 kids and all kinds of medical equipment.  Thankfully we will have lots of help. 

The next Friday night our church and some friends are throwing us a housewarming shower.  So many things to look forward to :)

Sarah is just growing and growing.  It's so great to see her have a growth spurt.  Selah has had one too and we've gone through Selah's closet and Sarah has gotten a lot of hand me downs.  She is looking so cute in one of Selah's sun dresses today.  Since Sarah doesn't understand modesty (which means she twirls and lets her clothes go wherever they want to go LOL)  she wears bicycle shorts or shorts that are called "playground shorts" under her dresses.  Actually the bike shorts are nicer and longer.   It's important to me when people to see my little ones and they know that we care about them and how they look.  Sometimes when we are at a specialists we will see other children who are like Selah or Sam or Sarah (meaning the child depends on the parent completely to be clean and dressed) and the child is so dirty and they have on dirty clothes.  Not that an accident can't happen or something be spilled but that's not usually the case with some of these precious kids. You can tell they aren't kept clean.   I get so upset as do my nurses if one is with me.  To me it is disrespectful to the child to not take good care of them in all areas.  The clothes don't have to be new or expensive, Sarah has a cute dress on today that Selah has worn for two years, that I got from a thrift store I probably didn't pay more than $2 for it or it may have been given to me from someone else and now both girls have worn it!  So I'm not saying someone has to spend a hundred dollars on a child's outfit but they can be clean and decent looking.  Every time we've taken Selah to a doctor, we are complimented on how clean she is, not just her body but her mouth and gtube & trach  area etc....  Of course with Selah I have the nurses to thank for the great care she gets and that is what I tell our doctors every time.  Mouth care is a huge thing for a handicapped child.  Selah tends to keep her mouth open and gets dried gook on her tongue that has to be cleaned off carefully.  Both Sam and Sarah have to have their teeth brushed for them and it is quite a procedure since neither know how to spit.  We do all their personal care because we love them but sometimes it is quite a chore.  Sarah is very hard to dress, it's like she doesn't get the reason why her arms or legs are being moved. I'm so glad when it is warm weather and she wears shorts and short sleeved shirts.  It makes life much easier.   Sam helps us dress him and that is a huge help!  When we move, we are putting a bar up in Sarah's room like a ballerina bar in hopes that she can learn to hold on to it and help us dress her, by lifting a foot to put in her pants leg and things like that.  Her therapist recommended it. 

Here is Sarah in her thrice worn thrift store hand me down dress.  Cute huh?

Can I ask you a favor?  Two of my childhood friends are really going through some major health issues.  My best friend that I had growing up, has gotten a  thyroid cancer diagnosis and has had surgery for its removal.  She is now waiting to learn the next step.  Please pray for my precious friend who made my life so happy as a kid/teen.  She means the world to me.  We don't see each other but like once a year now but when we do, it's great!  Pray that every cell of cancer is gone and that she has a perfect recovery.   My other friend is a guy who grew up going to church with me- I've known him all my life.  He and his wife graduated from high school with me.  He has a very rare form of  pneumonia.  His wife has been told that he will get much worse before he gets better and will have to go on a respirator.  They don't want to have to do that of course!  Both of my friends need God's help in their physical bodies as well as peace.  Please pray for my friends.  Thank you!

Tuesday, June 9, 2015

FB Rant

You either love or hate FaceBook.  I love it for the most part because it makes me feel close to far away friends on a daily basis.  I love seeing pictures from one of my best friends who lives in Idaho and being able to "talk" to her instantly.  I love hearing stories from friends living overseas.   I love keeping up to date with many friends who live all over the US, friends I went to high school, college, worked in ministry with, or just knew from different points in my life. 

I even love the debates.  I have an interesting atheist friend.  He keeps me on my toes.  I have Christian friends who are really deep that inspire me.  I LOVE to hear the adoption stories...

BUT I HATE HATE HATE the silly Christian sayings that are forever all over FB.  "God's got that"  "Go Jesus"  "Praise God I got a parking space"   They really make me cringe inside.  And don't even get me started on the pictures that say "share if you love Jesus". 

Oh no I'm going to get hated on....but it's true, I find myself cringing and rolling my eyes. 


Because it lowers who God is.  It makes God just the "man upstairs", your "good buddy"

Yes God is our friend.

But He is also the  God of the Universe not just your bud.

And for someone who may be going through a dark valley, asking for and needing a miracle, your cute little silly" thank you Jesus for a parking space" can grate on someone's nerves! 

Do I think God could orchestra a free parking space for someone who needed it?  Yes I do BUT do I think He is going to do that just because you did not want to walk a few steps...No I don't! 

If I were not a believer, every single day on FB I would be so turned off by silly stupid remarks people say and "miracles" they attribute to Jesus that I'd run the other way as fast as I could. 

Think about things, give God glory- but do it respectfully.  Remember every instance in the Bible that a man saw God the man would fall down.  That is the kind of awesome God we serve, One who is all powerful.  He parted the Red Sea not the Walmart parking lot!