Friday, August 17, 2018

Summer's Over

Well Summer 2018 is in the books.  It was a great summer and went by way too quick.  From Haiti, Miami,  New York, Canada, El Salvador and camp..... movies, late nights, friends over...  It was good lots of memories.  

Today we took Steve back to college for his Senior semester.  He will graduate in December a semester early.  His roommate of three years is getting married in December so he moved off campus and Steve is living with new roommates but old friends.  One of his friends is the Student Body President so we called their room, the President's Suite LOL   As our usual tradition we ate at Olive Garden (the same one that was the site of mine and Jon's first date) then we followed him to school, walked around a bit and I bought a new SEU t-shirt.  

This was a snap from College Days back in 2014  it cracks me up

Monday Shad will start up his 10th grade year.  We are also looking at Dual enrollment for him at our local college for January.  

I love being on a schedule again but I sure hate to see the summer end.  
Thanks for the memories Summer 2018!

Wednesday, August 15, 2018

Six Years Later-Selah

Six years have gone by since that fateful day that changed our lives.  There is so much I can say but this post I wrote on FB three years ago really says it all...

Three years ago the accident that changed our lives forever happened. Looking back I see God's faithful hand in our lives. He never left us, He never forsook us. He was there when we were alone. He worked every detail out for us on so many different levels Beforehand I knew God was faithful NOW I KNOW GOD is Faithful! There's not a devil in hell or anyone on this earth that could make me doubt God or His faithfulness. The last three years have been difficult but we've made it. We're still a close family, we've weathered so many things that brought us closer together rather than apart. I'm grateful. I can remember hardly being able to breath & wondering HOW we could deal with everything but we did by the Grace of God! So whatever you are going through I can promise you that God is able to walk you through it!!!! Just put your trust in Him, don't look to anyone else. What He's done for us He can do for you. You may not have the easiest path but you can have peace!

God has been faithful to us   In many ways we lost our daughter that day.  Just being real here, I've thought if Selah had died we would have found healing from that loss by now.  But every day the pain is there and it's raw.  Don't get me wrong we love our daughter and are completely committed to her care and well being but it has been a difficult road to walk.  There have been no signposts along the way and it's been a very lonely road.  BUT GOD..... He has been with us every minute and every step of the way and I'm forever grateful for that realization  Even as I type this I can think of the many ways God has helped us and strengthened us.  People tell me to write a book but honestly it's more than a book would hold.

I could not have made it this far without God.  Even with Him it's been so difficult.  But I've learned a few things, the number one thing I've learned (besides the faithfulness of God) is every day is a CHOICE!  Every day I chose to trust God.  I remember doctors and social workers telling us that our lives were basically over if we brought Selah home from the hospital.  They said it would ruin our family.... their words scared me but I determined in my heart that OUR HOME WOULD NOT BE A HOUSE OF MOURNING!  And quite honestly, that depended on mine and my husband's daily choices.  We could lay down and live in sorrow but we chose not to do that!  We had four other little people watching our lives and how we dealt with this awful tragedy.  And our lives were very public so there was a watching world looking to see if we were going to honor God even through this....and that was the choice we made.

To be honest, I made that choice for various reasons and even selfish reasons....  let me tell you I knew what it was like to separate my life from God because of heartache.  I'd done that when we lost our twins and that was an awful way to live!  I did not want to experience that bitterness again.   I also did not want to lose my family through sadness and bitterness.  Things like that happen all the time when tragedy strikes.  I knew if I trusted God He would see us through.  And He has!!

Recently I had a long talk with our oldest son about the whole thing and other tragic situations we know of and he told me about how he felt about the whole thing.  It really touched my heart the things he said to me about how Jon and I handled the accident and the 6 months afterwards while Selah was in the hospital and rehab before she was transferred home.  He said he knew everything was going to be ok because he saw we were calm and peaceful (most of the time)  He never doubted us and our ability to mange the situation.  Wow.... that was God helping us!  But even as we went through the very first traumatic day, I somehow kept things together enough to reach out to my other kids and reassure them while being truthful and honest.  My son acknowledged to me that he realizes that we chose to trust God's faithfulness.  That meant so much to me.  While it was all so raw, one of my prayers was that the boys would see this and know that God could also carry them through any situation in life by seeing our example.  I knew they were watching.

Please know I'm not prideful in myself, I could have never ever handled one day of this, let alone 6 years, without God's grace and empowering Spirit.  I have literally thrown myself on the mercy of God time after time.  It's all God but I made a choice to trust God.

Over the years we have had people at our church or people we have met that I call "God accusers".  They tell us stories of how they've felt God has failed them in various areas of their lives because of tragedies.  These folks are bitter and they blame God because life was not perfect.   Recently Jon had someone begin to recount how she felt God failed her and he stopped her and began recounting stories of folks who have walked through the valley but have trusted God.

You know what?  I'm going to trust God. I'm not an optimist or a pessimist...I'm a REALIST!  So to some folks I sound like I'm Miss Sunshine and to others I sound like Miss Gloomy but I tend to be very pragmatic about things.  Life can be extremely hard.  But even in the hard places there is beauty.

We live out our life and commitment to our family day to day.  The future sometimes scares the Hell out of me!  And it drives me to prayer.  I balance so many different things and responsibility but God has given me the strength thus far and I believe He will continue to do so.

 I encourage you to make a choice to trust God in your situation.  CHOOSE daily to depend on Him.  Don't live in defeat no matter what you are going through.  I'm not a person who makes silly statements in a glib way and I realize the realities of life.  Many times I've had to say "God I truest you" through tears knowing that things were not going to go the way I wanted them to go.  I can't change the fact that my daughter was in a near drowning and is living in the aftermath of it but I can CHOOSE to not wallow in grief.

Why anyone, especially a Christian would want to live their life wallowing in grief?  It's not going to change a thing and it robs you of your joy.  I'm not saying we don't grieve-I still grieve the loss of my twins, I still grieve the accident.  As I type this, the clock is nearing the time of when it happened 6 years ago today and my heart just pounds thinking about it and wondering "what if"......   But I make the choice to look towards that day when God Himself will wipe away every tear from our eyes and make all things new.  That's what I'm headed towards....the other stuff is in the past.  I can't wait till the day Selah is heal and whole.  It will be glorious.  The bible says we (Christians) don't grieve as those who have no hope.  It doesn't say we don't grieve, just that we don't grieve in the same way as those who have no hope 

In the story of King David's life, there is the time when his infant son lay dying.  David wept, prayed and fasted.  When the baby died he got up, washed himself and went and worshiped at the temple.   He said the baby can not come back but one day I will go to him.  Well I get that, for any situation.  What has happened, has happened, it's time to quit grieving and get up and go towards God.  That sounds so simple but it's true.  So let me encourage you to trust God through every circumstance of your life.  I can absolutely promise you that He will be faithful to you if you entrust your life to Him. ========================================================================

Selah turned 14 years old yesterday so until next month I have three 14 year olds (Selah, Sam and Shad!)    Recently she's gotten all kinds of new things as she outgrew everything.  She got a new mattress and gel pad for her bed.  She got a new stander and wheelchair, and new hand braces and leg braces.  I'm so grateful for her two insurances that cover almost everything.  I know families in other countries that have such problems getting any type of equipment for their kids.   We are blessed.  Even with two insurances we sometimes have some out of pocket but I'm thankful that we are able to get her and the other kids the things they need.  We are waiting for her new slings for her Hoyer Lift.   She also is getting a new seat for her bath chair.  Someone gave me her nice huge bath chair/bed.  It has a blue cover on it but it's getting frayed so we are ordering a rose pink one! It's going to be so nice!  I pass on all her old equipment to others so it blesses them too.

I want you to notice Selah's head.  she is doing all the moving on her own and she was quite annoyed with us LOL

I love Selah and I'm honored to be her mom.  I'm thankful for all the things she has that makes her life comfortable and helps the nurses care for her.  Selah is usually happy and content.  I'll always ask for prayers for her, I'd love to see her healed this side of heaven....but we are committed to her no matter what happens.

Saturday, August 11, 2018

Face to Face

Yesterday was a busy church day for me.  My friend and I cleaned the church and hall and it was a job!  Usually it's easy but it was more than usual.  then after eating a late lunch I had to run and buy softball equipment because we are starting a church softball tradition.  I get back home in time to get everyone out the door, then we gave Sam and Sarah a bit of a break because it was still so hot at 5:30. pm.  We left a little later, drove by , got the pizza order from the team and went got pizza .  We got back just in time for everyone to eat before it got too dark.  The mosquitoes began attacking us so we cleaned up and headed for the church fellowship hall till 10 pm!  That was a late night for us and for the little kids. 

After we got home, and got the little kids to bed, we stayed up with the boys and one of Steve's friends who was spending the night.  He is the Student Body Class president of their college and recently was at a symposium for young Conservative leaders in Washington DC.  He had an amazing experience and was even surprised by having President Trump "crash" a  seminar at the White House.  We stayed up talking till after 1am and would have probably stayed up later but Steve and Shad were going on a kayak trip today with some other college friends. 

I recounted ALL of that just to make the point of how good it is to have FUN with people without technology being involved!   Honestly I was a doubting Thomas about how the whole softball game was going to go over with the teens and young adults in our church but everyone (including me) had a great time.  It's so good just to connect with people face to face.  I like technology and I confess I'm always checking my phone especially if I'm bored just for something to look at.  But I can put it down for hours if I'm with others. 

We didn't allow our oldest son an cell phone until he was 15.5 years old and going on a missions trip!  His phone was only call/text.  He didn't get a phone with internet access until he was 17!  Shad is 14 and doesn't have a phone much to the shock of everyone.  He may get a cell phone with texting only for his 15th birthday or he may not LOL  Personally we feel kids need to stay kids-the internet is a dangerous place for many reasons but our main reason for greatly restricting their on line time is more for their mental health than anything else.  It is just not normal to see kids addicted to phones, tablets, computers, TV, video games.....  And let me tell you it is a challenge to say the least.  We're not against any of that stuff if it's used in balance but it seems the younger a child is, the harder for them to find balance  I'd say that 95% of the arguments with our kids have had something to do with electronics.   It saps the common sense out of them and gives them an attitude.  We continue to fight to keep a standard in our home of not being addicted to electronics and sometimes it feels like it is a losing battle but other times I can see how they have been able to separate themselves from it.  .

My biggest advice for parents of younger kids is to restrict time on electronics and keep them from "owning" any of it.  We never let our oldest have a tv with cable in his room until he was college age.  he did have a tv that played DVD'''s and he could play video games on it.  Our biggest regret is we allowed him to have video games.  His first system was given to him, he bought the next one and we seldom bought him games or accessories but he collected so much stuff.  That was always an argument with both boys!  Thankfully he out grew it and realized he could sell it all and buy a really good video camera so he did that a few years ago.  Of course Shad mourned the loss for a couple of days because he knows we will never allow that back in our home.  Not because it's particularly sinful or ungodly but because it sucks the life out of kids! 

I grew up being outside all day or playing dolls, reading, if I couldn't get outside.  I was busy.  When I was in junior high, a neighborhood friend and I would meet every day after school to skate on a street in our neighborhood.  We'd skate till it was dark out and I had to run home.  I didn't know then what a good childhood I was having!  That was the life!

It's important to lead your children even in areas like this. Electronics are enjoyable, we still occasionally have a family movie night.  Just this past week we watched "White House Down" a suspenseful drama but we are not big TV watchers.  Jon and I watch a few things on FOX news and we have discovered a few great TV stations, like MeTV, Decades, and a few others that show old shows but if I don't DVR something, I can't stand to watch commercials LOL or I forget to watch it.  Personally I'd rather read a book any day than watch TV.

So this last weekend of the summer for us, we are being busy, outside, enjoying Florida.  Next week Steve has a "gig" that he working for a company then he leaves for college, his last semester!  Shad will be starting 0th grade work and starting the paperwork to do dual enrollment in college.  What  a fast summer this has been for us!  Back in May we had so many trips and things scheduled for the summer, it seemed it would be so long, but it went by very quickly   That always makes me sad.  But I'm thankful for every memory made with my family.  

Thursday, August 9, 2018

Walking Can Be Hazardous To Your Health!

As you know I have a Fitbit and am addicted to getting at least 10,000 steps a day.  My real goal is 15,000 but I'm happy with 10,000 if  I'm busy.  It doesn't do any good I'm still fat LOL but I figure it is good for my health.

Since I got so sick almost 2 weeks ago, I haven't met my bottom goal.  I felt breathless for days, like I couldn't get a good deep breath.  But that all cleared up and yesterday I decided to get up and go walking this morning.  Great healthy idea right?  WRONG!

So I woke up about 5:30 am and laid there, thinking about walking.....I finally got up about 630 am and headed out.  It was an absolute gorgeous Florida morning.  There was just a tinge of coolness (that means it was only about 80 degrees and the sun wasn't up yet LOL)  I have three different ways I go so I decided to go my favorite way this morning..  As I'm walking I'm thinking happy thoughts...glad the house was cleaned this week, glad I was going to have respite care today so I could get a few things done.... AND THEN......

I hear a growling on my right side, I look over towards the sound and these two gigantic Rottweilers like this picture are charging straight for me!
 Image may contain: dog and outdoor

Almost every time I've walked down that street those two dogs charge at the fence.  They are gorgeous and well taken care of.  Their fence is high and the gate is closed (except for today)  And I can not tell you how many times I've been thankful for that fence and gate....  BUT today the gate was wide open!

They charged across the road at me.  I was backing up and seriously thinking I was about to die!  I'm not kidding.  Not alot of animals really scare me-I was raised in the county but these dogs scared me.  As I'm backing up not knowing what in the world I was going to do, the garbag pickup truck came rolling up.  The driver saw what was going on and he already had his door open to help me!  But the sound of the large truck scared the dogs and they went back up their driveway a little.  He and I just looked at each other and he said "Run!"  So I turned around and headed for home as he watched the dogs and kept his loud truck parked at the end of their driveway until I got down to the corner.

God bless him!  I truly feel like he saved my life or at least saved me from a mauling!!!  I tracked him down today to thank him and I got in touch with his supervisor to tell him what his driver had done for me!!!  His supervisor said he would pass it along to upper management.  I truly hope he gets rewarded for helping me.  He certainly went above and beyond his job duties today!!!!!

Also I called our local animal control to report this.  Although I think the owners usually take good care of their dogs, this mistake today could have been a disaster.  When you own such large and threatening dogs, you have to be very careful all the time.  These dogs were not coming up to me for me to pet them on the head.  They were charging at me to hurt me.  And they would have hurt me, no doubt if my guardian angel had not been there!  If it had been a child, they could easily kill a child.  That's one of the bad things about living in the country is that everyone has dogs, and some dogs are more aggressive than others.  These were probably the most aggressive dogs I've ever had come at me.  It was terrifying.

So walking may not be good for your health after all!  Although I'm sure my heart rate got up there to the fat burning numbers LOL!!!!!

Wednesday, August 8, 2018

Genetics Appointment!

We got some very interesting information at Genetics today!   To explain it all I need to give some background.

The University of Wisconsin has had an ongoing DNA study for kids with vision issues particularly kids with Peter's Anomaly.  Sam has been in the study for years.  As DNA testing and gene sequencing has improved we have gotten more and more information.  We placed Sarah in the study about 4 years ago.  They both had a microarray DNA study done a few years ago when it became available.

We had already found that Sam had a deletion in chromosome 4 at the 35qt marker-a very large one.  I did a lot of research on it and found the ONE doctor (at the time) who was doing research on that particular gene.  The part of the deletion we were concerned about was the deletion of a liver tumor inhibitor.  Most people have two liver tumor inhibitors in chromosome 4- Sam only had one.  We were concerned that made him at higher risk for liver cancer.  The researcher does not think that is so based on his research with mice.  Jon and I were both tested and we have both markers so his deletion was just a random thing that happened at conception. Even though the doctor reassured us, we started being alot more careful of what Sam eats.  Thankfully Sam absolutely hates sweets and craves BEANS and PEAS!  He loves guacamole and all kinds of healthy food.  But if you give him something sweet he will spit it out and act like he has been given poison   We've never discovered the cause of his lack of sweet tooth. LOL

So today we went over the results of DNA sequencing type testing that has come back from the U of W.  We may have a deeper answer on Sarah than just Peter's Anomaly.  The research has found that she has a deletion in chromosome 2 which is called SOX2.  It is characterized by anophthalm (no eye) and/or microphthalmia  (very small eye) that is usually bilateral.  Other common findings include brain malformations, esophageal atresia, hypogonadotropic hypogonadism and/or pituitary hypoplasia.  There can also be deafness or early onset seizures involved. It seems all children have intellectual disabilities   Thankfully for Sarah she has none of the problems except for the small eyes/no eye and the intellectual disability  I'm sure if she were a newborn we'd be devastated by this but we kinda already knew this and absolutely love her!  We are just thankful she doesn't have any other hard thing that is associated with this.   She had to be tested for it so that she could be medically diagnosed.  There is a difference with researchers saying she has something and actually being diagnosed by a medical doctor.  So we won't know for a few weeks for 100%.  But I think it's pretty sure.

The one way this may impact her in the future, is she may never reach puberty.  The "hypogonadotropic hypogondism and/or pituitary hypoplasia" basically means ovaries/uterus  may never grow with or without involvement of her pituitary gland.  So she could have normal levels and she stil might not mature or she could have abnormal levels and still not mature.   If this is confirmed, we would have to watch her bone density closely.   Hitting puberty for boys and girls causes the bones to harden and become more dense.  Other than that, there is no real issue for her since she would not be planning on getting married and starting a family.  Honestly it was a relief for me to hear this because obviously I was not looking forward to her hitting puberty and all that involves.   It's funny, I have always thought she might have something along these lines, don't ask me why but I have had a feeling about this. 

We have pursued genetic testing for our kids for several reasons.  Obviously since Sam and Steve are biological brothers, we want to know if Steve is a carrier of anything.  He is not -all of Sam's DNA issues are non genetic so far (more about that later.)  We also want them tested to make sure there is nothing lurking that we don't know about in time.  Often when a child has one issue, there are other issues out there.

Sam got back some research that was a little murkier.  He had a hit come back on something, that I also tested positive for-it also has to do with small eyes.  Luckily Steve was with us today and was able to be tested for it.  Steve has normal size eyes while I have small eyes.  I can remember when i was a little girl my great aunts telling me that when they first saw me I had such very small eyes.  It always made an impression on them but no one seemed to put it together with my vision issues.
Anyhow if Steve tests positive for this-then it's nothing-just a funny piece of DNA since he has regular size eyes.  If he tests negative, it will lead them to do a deeper study on this to see if this is a new marker for eye issues.  The doctor wants me to try and contact some of my biological family for testing....awkward....  While I am so interested to know more, I don't have much of a relationship with my immediate birth family since I was not raised with them.

So despite all the new info, both of my kids are still considered to have Peter's Anomaly-which is rare.  This is just a deeper explanation of the DNA in both of them that gives even more details and obviously even more rare!  They are each one in a billion!

We plan on taking Selah over there soon.  I had scheduled an appointment for her that was for a few weeks after the accident happened:(  With everything else, genetics did not seem very important.  But we'd like to see if we could get a diagnosis that will give us more insight into her.

This was long and involved and I doubt seriously if I explained everything correctly but its very interesting to me.

*One cool thing was we were in Orlando near where I did ministry at a soup kitchen for the homeless when I was in college.  We also worked with prostitutes and drug addicts.  I was able to find the building and saw it was still in use.  That area of Orlando (Orange Blossom Trail)  has been cleaned ups some but it's still a pretty rough area.  It's only about 2 miles from the kids' doctor's office and a large children's hospital.  That ministry defined my life and pointed me in a direction I probably would have never gone on my own.  I'm not sure how many lives I changed but it certainly changed my life.  I'll have to write about some of my experiences on OBT one day

Monday, August 6, 2018

Busy Week

This week is dedicated to all the end of summer chores.  I do this every year and every year my kids hate it LOL  Today we deep cleaned the back half of our house.  Then the boys' pressured washed the drive through garage area.  They couldn't do the whole house because it is just way too wet and the last thing we need to do is to add more water around the house.  Then after supper, they water sealed the front porch.  Tomorrow we deep clean the front half of the house, good Lord willing! Deep Cleaning involves alot more than regular cleaning for me and makes me happy  It doesn't necessarily make anyone else in the family happy!!  LOL!
 Selah has a Nutritionist appointment-Jon will take her.   Wednesday Sam and Sarah have genetic appointments.  Thursday Steve has meetings at his college regarding the football season- he's the producer for football.  Friday I'm cleaning the church with a friend and we have a big church softball game that night.  Saturday a group of college friends are going with Steve and Shad kayaking.... Usually that means we have sleep over guests.  I got smart and bought camp cots now we have beds for everyone and anyone.  They fold up pretty small and are quite comfortable.  Air mattresses were always a pain and would end up collapsing  during the night.  The camp cots were one of the best decisions I've ever made!

Last Friday I did have fun with a couple of my friends.  That doesn't happen all the time either but it makes me happy when it does!  My college roommate and life long friend and I try to be artistic together.  We have tried various things with varying degrees of success.  But I have to say we absolutely love Rock Painting!   This beats some of the other projects we have tried!  We also watched some old home videos and laughed till our faces hurt.  The funniest one  was about 7 years ago some neighbors of ours robbed a bank and had a shoot out with cops.  Well I'd known these folks for decades so all of the press came knocking on our door asking about them.  We were on several TV interviews for the local news.  BUT then as the manhunt went national- all the networks came knocking too!  We ended up being on a LIVE  national news talk show on FOX.  It was all fun and games until I heard in ear piece "Mr and Mrs Clanton we have about 3 million viewers tonight.  You are on in 3,2,1.... I FROZE!   Some friends taped it.....and gave it to us.  I basically look like Morticia from The Addams Family!!!!  It is absolutely hysterical to watch and rather painful too.  I hadn't watched it in years so the tears were running down my face.  At least I can laugh at myself!  You know the old saying "If you can't laugh at yourself, come see me.  I can laugh at you"  Oh and our former neighbors were captured unharmed and are in prison probably for the rest of their lives (which is sad)   All I can say is I have an interesting life.

My rocks are to the right side.

Oh my gosh we look like twins!  Straight hair, bangs, glasses, sleeveless shirts and fitbits!!!  I'm laughing at us!  We've been together for a long time!  We say we are going to be roomies in the nursing home one day!  Nothing better than life long friends who can laugh with you and at you!!!!!

Then that night I got to go out to eat with my other BFF!  What a treat!  All in ONE day!  I was a happy girl.  I don't' have many days like that!

Hope your week is going good!

Sunday, August 5, 2018

Travel Video

Hope you all are having a great weekend!  I've included a short video Steve made of his summer trips.  The opening footage is shot in Haiti.  Then it goes to northern Canada and back to Niagara Falls and Fort George.  He was able to get on the Ferris wheel as the fireworks started over the falls and got great shots.  I thought you'd enjoy a glimpse of our summer.  Hope you have a good week!

Thanks for all the comments!  I love hearing from folks.