Tuesday, January 22, 2019

A Day in my Real Life

Last Thursday will be one for the book....

To start off we had Horse Therapy.  That means getting the kids up and dressed and fed and out of the house by 9 am.  It's not too bad but it takes a bit of effort.  It's almost an hour drive there then about two hours there and then an hour drive home.  Well I was dying for a drink so we stopped for a Big Gulp!  It was a good one.....

As we are driving down the road, I notice the tire light was on..... then Shad said he thought he heard a pop as we were leaving the convenience store...   I stop at another convenience store-this time to check the air pressure- only 15 pounds!!  We fill the tire up and head for Walmart.  I'm praying that the tire doesn't go flat on us and leave us on the side of the road. 

We make it to Walmart.  I called Jon to meet us because Shad had to go to work  He comes and picks him up.   The nice man fixing my car said it would only be a few minutes so I decided to stay with the kids.  Well it took a bit longer than a few minutes.  We tried sitting in the automotive waiting area but it was small and Sam kept lightly touching an older lady who was sitting by us.  She did not like it.  So I thought I'd put them in buggies and walk them.  Thankfully our respite care worker was with me or I would have never gotten them into the buggies 





See those Big Gulps.... they cost alot of money!









Of course I had to get a new tire and had no warranty left on that particular tire.  So while we were waiting, I walked through the toy section  It made me think I seldom take the kids with me to the store.  With Sam I'm paranoid about germs and with both of them, particularly Sarah people stare at her too much. I'm not an anti Walmart person but I've had some of my worst moments in Walmart with people staring at my kids.  It's not good for me-I'm afraid one day I will really get into it with someone.  When people stare at my kids, I usually get a bit obnoxious.  Other people say to use such moments as a 'teaching moment ' for the folks who stare- I do - I teach them NOT to stare-believe me they remember my "teaching moments"   So in light of the fact it's not a good thing for a pastor's wife to end up in jail I just don't take the kids there.  Believe me they don't care!  It's probably been a year or more since they went with me to a store. 

Anyhow I handed Sam a toy as you can see him holding.  I've done that before, no biggie.....until I tried to take it back!  Sam decided he liked it!!!!  It was so funny and so good developmentally that he understands when something is taken away.  I almost bought it for him UNTIL he took one of those expensive Big Gulps and smashed it.... yep.... I had to clean it up.  He did not get that toy!! 
Sarah only likes certain types of toys so she pushed away everything I handed her. 

Anyway my cheap little Big Gulps cost me alot that day! 

We finally got home around 3 pm.  I gave them a late lunch and baths.  That's another thing I'm very particular about how they look when we go out in public.  I've always been about all my kids but for my little ones, they are completely dependent on us to help them be clean and presentable.  They had helmet hair, Sarah had horse poop on a shoe....they looked pretty grubby! 

That afternoon, Sam kept gagging himself.  He would put his hand in his mouth, he even stuck his straw down his throat.  Years ago he swallowed something tiny so I started thinking he'd swallowed something.  By that evening I was convinced something was wrong so I took him to the ER.  Jon stayed with Sarah and Shad came with me. 

So with Sam's immunity issues (never got a real diagnosis but we all know to be super careful) I didn't want to take him into the ER.  So I went in and filled out the paperwork.  The staff was very obliging.  Then I went out to wait with Sam.  When he was called for triage, he began throwing up terribly so I figured he probably was sick and was trying to tell us.  The staff were so kind to us, they didn't want us to wait outside, it was cool but quite comfortable, so they found us a private area to wiat until we went back.   I couldn't get over the kindness of our local hospital.  But as they were taking us back to the small private room, I saw the sign on the outside said Bereavement Room!  I literally balked and came to a dead (no pun intended) stop! Honestly I had rather wait outside but they were so kind and I felt it would be rude.  So we sat down and waited in there. 

Other than being in the Bereavement room It was one of those rare amazing ER visits where you get the best doctor and nurse and staff in the world.  The doctor did X-ray him and saw nothing.  Sam was so good, the nurse did an IV and he just sat there.  She looked at me very doubtfully when I told her he'd let her do it.  Afterwards she was full of praise, she said he was her best patient of the night including grown ups!!!  So it was just a little fluke I guess.  He has basically seemed fine every since.  Maybe that's his new way to tell us his tummy hurts.  Although he will gag himself if he gets mad so it's hard to tell!

That was a long day!!!

Sam did have surgery scheduled to have his adenoids removed to see if it would help his apneas.  After discussing it with the specialist we have decided to see yet another doctor first.  The ENT didn't think it would help enough to risk a surgery and we did not have a peace about it.  He is on a pulse/ox machine at night that alarms if his oxygen level or pulse go too low.  A few nights ago he had a really bad time.  His heart rate kept dipping into the 40's for about an hour.  We just kept waking him up and re positioning him.  The ENT actually talked about doing a trach on Sam in order to put him on oxygen.  I don't know what to think about that!  I'm not even sure why she'd say that- his oxygen levels are great except for when he is asleep and then they can go in the low 80's with the apneas
There is alot of concern about him being on a CPAP machine because if he took it out of his nose and put it up t his eye, he could literally tear out the cornea implant because of the high rate of oxygen flow.  Sam puts everything up to his eye.  So we have to figure out what to do! 




We had some family time last weekend-got together and went out to eat. 



 Jon and his brothers and Shad:)









Steve is dating the sweetest girl!  We all love her and think she is a Keeper! 




Last weekend Shad went to the annual PK (preacher's kids) retreat.  He had a great time.  They stayed in Orlando and went to Universal one day.    He has a group of friends that are PKs too.  They are 4 other boys- 2 sets of brothers.  One set lives in the northern part of our state and the other lives in near Miami.  He gets to see these guys for all the activities in our district.  They go to PK , youth convention, youth camp and missions trips together.  It's really neat for him to have these guys that can relate to him. 

Today was a busy day for me.  Tomorrow looks even busier.  Sam and Sarah have Occupational therapy and Speech therapy.  Thankfully it's at home.  Then Sam has a fitting for gloves.  Occasionally he has to wear gloves on his hands/lower arms because he will bite himself.  He'd done so good for so long but the other day I had to put them on him.  He actually welcomes them and calms right down.  But it had been so long they were too small for him!  I just ordered him some "chewerly" it's wearable bracelets and necklaces that he can chew on if he needs to.  Sarah doesn't do it.  Selah did some before the accident.  We will see if he will use them. 

We have had a little "winter" her in Florida but it's supposed to warm back up.  It's been great.  The kids were out today for several hours on the swings. 

Hope you are having a good week and no crazy days!


Wednesday, January 16, 2019

Happy New Year!

Well I hope everyone had a Merry Christmas and a Happy New Year!  December was a whirlwind for me with everything going on and I have to admit I am glad the holidays are over.  Just call me Scrooge but I like things back to normal. 


Here are some pictures from Christmas and New Years

Look at Sarah standing!




We took some pictures before church during music practice. 
















The weather was not good enough for Selah to be at our Christmas Eve service




New Christmas PJ's on Christmas Eve






Selah with some of her Christmas presents





Steve & Shad Christmas morning



Sam and Daddy



Sarah with new toys





New Year's Eve service and Selah came in her new gold dress








People probably wonder why we always take pictures at church.  One reason is it's such a part of our life and the other reason is everyone is together and dressed nice LOL









To be honest Sam enjoys the "fake horse" more.  His issues are very different than Sarah as he has CP and stiffness.  They work with his on stretching exercises. 



Always trying to get his legs straight


Sarah petting her horse! I hope you can get it to play





Steve has started his Master's program and is working as a Graduate Assistant.  Everything is going good but he's still a bit nervous about the classes he is taking.  He is doing a lot of writing.  Shad will be starting college in the second spring semester in March.  He is finishing  10th grade work on line now. 

My husband is starting his 22nd year as a chaplain and has also become what is called a home missionary in our denomination.  All it means for him is increased paperwork but more access to curriculum and things for the inmates that is paid for by our denomination.  We were appointed as home missionaries in the 1990's when we worked in the inner city of NYC. It was not my more favorite memory.....I'll leave it at that LOL

Moving on...I've got a new goal of 11,000 steps a day.  So far I've been on track- most days I do more than 11,000 but some days I don't -so far it's evened out LOL   The idea is if a person does 11,000 steps a year- it's basically 2019 miles.  I love things like that:)  I've also discovered skinny jeans.... that's a story in itself but how did all my friends know about skinny jeans but me?  I bought a few pairs and gave away all my old regular jeans.  They are like magic jeans :) :) :)   I was testifying to all my friends and they were all like "yeah we know"...They knew but didn't tell me????   Then I tried to remember the last time I'd bought jeans and it was 6 years ago when we were stuck in NY for all those months after the accident.   I'm more a skort/shorts type of girl.   I live in Florida-I seldom wear long pants!!!  But now I'm prepared which is a good thing because it seems like our two weeks of regular winter is happening now!  But the skinny jeans can only work so much magic!  I did buy Jon a couple of pairs for Christmas. But he's an old Levi's boy and was not too thrilled with them. 


Well I hope your year is off to a good start.  New Years are a fresh start for me (I also like Mondays-I'm a freak what can I say?)  But as I get older new years are also frightening for me because we don't know what the year may bring.  I guess I've lived through enough now to have some fear of the future.  At the end of last year, I felt some anxiety about welcoming in a new year but there's nothing I can do about it except trust the Lord who has brought us through all the other years to bring us through this year safely.   

Thursday, December 20, 2018

Graduation 2018



HE DID IT!!!!!



I love this shot!  It's on the football field-Steve produced the football games for the last two years. 



this was from the weekend before at his roommate's wedding in north Florida. 





Nick and Steve- he was a great roommate for Steve.  Both pastor's sons but they didn't get into trouble (or at least not too much lol)  God bless him and his new wife!




It begins....





Diploma in hand!




Leaving the building














Steve's aunt and uncle were able to come too



Another one of  Steve's suite mates.  Pablo is student class president and I expect to vote for him as president of the US one day lol! 














Graduation was held at Victory Church.  Ironically this is where Steve started preschool and attended their private school up to 3rd grade.  He graduated from kindergarten here too:) 


We had a graduation party Sunday

































As you can imagine we are just a little proud:)   It was an incredible feeling sitting in the graduation service and reflecting on everything.  Twenty seven  Decembers ago Jon graduated from Southeastern in a small ceremony at the chapel on campus.  I had to go look for this picture. 





In April it will be 30 years since I graduated from college.  It doesn't seem real to me!  We are so glad that Steve was able to have a similar experience as we did going to Southeastern.  Of course back in our day (lol) things were way more strict.  Steve made friends that will be life long friends just as we did.  College is a great experience.   

In January Steve will begin as a Graduate Assistant working on campus in the studio and working on his Master's in Human Services.  The advantage to him being a GA is he gets more hands on experience and his tuition for his MA is paid!  He'll be living with some pastor friends of ours so that will be a huge help also.  





In other news guess who started his first job?





Shad has wanted to work at our favorite home town restaurant for years.  He enjoys it and I love getting pictures when friends go in and see him working.  He is a busboy and helps the wait staff out too  He is saving money for his mission trips this summer.  All the reports we get have been extremely positive 




Sarah got caught smiling.  she smiles all the time until I try and take a picture!!!




Tomorrow she turns 12!  I love my girl so much!!!!


Friday, November 30, 2018

October and November update

Well it's been awhile!  Of course we have been busy as always,  Here are some of our highlights.




Steve has an interesting job working for SEU   Recently they had Geraldo Rivera as a guest speaker and Steve worked the conference doing several things including camera work.  He later got to meet Geraldo and got a signed book by him. 









Living in Florida we've had nice weather!  The kids are back outside on the swings and look what we found in our hedge!  A cotton mouth moccasin.  Shad shot it dead then cut off it's head to make sure it was dead.  Yes he was wearing snake boots but he took them off even though i was fussing at him WHILE I was taking the picture so no snide messages please!  He put them back on to go in the woods and bury it so none of the animals would get ahold of it.  ..  for the record we do not kill non poisonous snakes in our yard and we can usually tell the difference.  We also don't kill poisonous snakes we see in the woods.  But this one was right by our front door and it was firmly in place.  Our dog and cat were actually both flanking it.  The two of them worked together to keep it in one place-it was like a Disney movie.  We had to remove the animals first before we could deal with the snake.  After we got them moved-we decided it was best to kill it because it was too close to the house and we were not about to try and relocate it or let it slither off and maybe into one of our doors (yes that happens I've found two in our church before!)  I really do't like killing things but I'm more concerned about my family than I am a snake!  Shad was very brave -he shot it then separated it's head with an ax.  I can't say I was as brave this time as I've been in the past with snakes LOL









Then the kids could go out and play after we checked the yard out!










Some random horse riding pictures.  Sarah absolutely has found her love!  She would probably ride all day long if she could LOL 

I promise to put up some videos of her walking.  It's improving weekly!









Sam enjoys it too



Sam really likes the "fake horse" because it comes with lots of muscle therapy.  He loves massages and stretches.  The few times we've put Sarah on the fake horse she has had an absolute melt down.  She is never like that but she was so not happy.  




Sam is learning to use a cup and he loves black coffee.  My strange little boy.  He kept wanting to try Jon's so Jon gave him some despite my protests and he loves it!  Black no sugar!!  How funny he is.  We let him have a small cup a day.

He is on a pulse/oxygen machine at night to let us know if he has a bad apnea.  It doesn't pick up the smaller ones.  He has had some severe drops but the alarm generally is enough to bring him out of the deep sleep and take some breathes.  It looks like he will be having his adenoids removed  January 3.  I'm already stressing!
We've decided to try the surgery.  We are not going to do a CPAP machine because of his eyes.  The CPAP delivers oxygen at a high force into the nose.  IF the machine got pointed towards his eye.....which could happen by accident or by him taking it out and looking at it, it could damage his corneal implant.  We are having to weight the benefits and risks on this and it's not easy.   His corneal implant KPRO is just sewed in the eye.  While he has been lucky some folks have had issues with stitches and with the implant becoming dry.  We feel comfortable that we are making the best decision for this situation-we do not want to risk him losing his sight!!!  So after he has surgery he will have another sleep study to see if it's been helped by the adenoid removal.  





Look at Selah's lower feet.  I got her a new attachment rather than leg holders.  I'm so happy with it Her legs are different lengths so we've always had issues with her and it looked so uncomfortable.   This is not the best picture at all of her.  She has been so engaged but she was about to nap.





In October we had Homecoming at our Alma Mater  Southeastern University (where Steve attends) 



A group of us from the 80's! 




It worked out that that weekend was also Steve's 23rd birthday :)  How do we have a boy that old???











Confession-none of our family are sports fans but Steve was the producer for their football program for the last two years.  We enjoyed watching him direct the game.  This is what he loves.  







Our Church



My beautiful girl!!!




Shad has started the process to become a dual enrolled student at our community college!  He is now almost two years ahead in his school.  He has finished 10th grade work except for math.  So he will be starting college the 2nd spring semester!  Currently he does an on line college prep curriculum.  We are excited for him.  If he continues to do good he should have his AA by time he graduates high school!!  He will be doing classes on line.



And speaking of college.....this is a picture of Steve leaving to go back to college after Thanksgiving.  We have a tradition of walking him out and waving-sometimes following him out to the road LOL
Unless something unplanned happens this is the last time he'll leave home as a college student!  He graduates in two weeks!!!  He did it in 7 semesters and saved us and him some money!  Today he just got his cap and gown so it's getting real!







Steve has also officially been offered a GA (graduate assistant) position.  This position will pay for his tuition as he continues on to get his Master's in Human Services!  He will be living with some dear friends of ours so that will help him him tremulously financially.   Through some provision his grandfather made and many grants and scholarships that he worked hard for, our help and his help too he is graduating with just one small loan about $3,000.  We could not be any more happier about that and proud of him!  It's a huge accomplishment for him and for us too LOL  

God has really helped us through various ways throughout his whole education process starting from pre-school on.  We determined waaaay back then that for our family, we chose to never be involved in the public school system  (of course we did some home bound services for our little kids but that was done in our home)  Back when we made that decision I did not have any idea how we would be able to do it and we only had one child LOL  I would have fainted if I knew what was ahead of us!!!!


But we made it, we gave up some things so we could afford to send him to private school (and later on Shad too)   We used to joke that he and then later the other kids are our hobbies   Shad was eligible for a scholarship but Steve was not due to when he was enrolled. But we made it through.  Then after the accident we began to homeschool because of the transportion issues and our various issues that arose.  So his last two years were homeschooled.  Shad went back to school for a few more years then we decided to homeschool him too.  

I'm thankful that God helped us to work things out to keep him (and the others too) in a Christian environment.  Many people will make fun of that and that's fine with me.  It's something we feel strongly about for our family.  Ain't no body else our responsibility but these five kids are and we know what we want for their lives.  

People say you can't always shelter your kids and that's only partly true, on the other hand an adult can handle themselves in situations that a 12 year old can not.  I fear we put young children in adult situations and expect them to have the maturity to handle the situation like an adult.  They don't have the experience an adult has to filter things.   Our kids have experienced so much real life and they've seen so much I've never worried about them being unprepared to deal with life.  

I don't say this to condemn anyone-it's just an encouragement to younger parents.  Truly we can say this has been one of the best parenting decisions we've made.  I don't regret a penny, an extra mile or an extra convenience that our choice caused us.  

"If you send your kids to Caesar for their education, don't be surprised when they come back as Romans".