Wednesday, January 27, 2016

A Family in Crisis!

We recently learned of a couple of ministries in the Philippines.  We've been able to help out both ministries through our church and another ministry that helped us send some CARE packages to these ministries.  It's been great to be involved in this and to see our church get behind this and bring in boxes of supplies and give offerings too. 

I became friends with a couple of the missionaries who oversee these ministries.  I learned from one of them about a family.  The father had died last year and the mother was very sick with TB.  There are 6 children.  They are so very poor.  We were able to send some Pedisure to them as the children were malnourished and the mother even more so.  I think there seemed to be some hope that she would recover....but she passed away last night. 

Our friends who have worked in ministry there for decades, have committed to raise the children.  They've already raised their children and they are now starting a new adventure.  The Philippines doesn't have the social programs we have in the United States so our friends will not receive any help from the government.  They will be raising 5 of the children, one of the teens lives on his own and has some drug issues already.  He needs prayer, he has been through so much already.  Our friends are willing to take him too, but it seems the teen wants to be on his own. 

This woman's death has affected me.  Just think about it, her husband died last year, they were so poor, she was so very sick, she knew she was dying despite receiving some medical attention and there were six children to think about!  That just makes my heart hurt! 

My biggest fears is dying and leaving my little ones.  Of course I love Steve & Shad but they have each other, Steve's grown and Shad's going to be soon.  The little ones will always need a caregiver.  It's like having small children forever.  It's a big responsibility. 

I'm so thankful that some months ago, the children's future was set in case she did not make it.  The missionary couple assured her that they will raise the children.  I'm so glad that she had that peace knowing her kids would be ok when she was gone.  She was only 46 years old. 


This just makes my heart hurt for all of them.
Today our friends took the younger three out while the older teen girls made arrangements at the funeral home and other errands they needed to do. 


So I'm coming to y'all to ask you to think about giving to this family. 

I know what it takes to raise 5 kids!  They have a habit of eating!  They grow out of clothes & shoes- quickly!!  They need supplies for school.  My friends don't have anything for them and the children are not bringing much with them. 

Our friends are not super heroes or super Christians , they are doing just doing what the Bible tells us to do. The Bible commands Christians to take care of widows and orphans.  It should be something everyone who calls themselves a Christian should be doing.  If the Church (all denominations) did what it should do, there would be little need for social programs. 

Well you have a chance to do something!  I want to raise some money as a one time gift and I also want to help them on a monthly basis.  We are going to be sharing this at our church also.  If you'd like to be a part of this you can send a check or money order to :


Please mark Philippines Family  on the check and every single penny will go directly to them.  There will be no fees or anything taken out of it. 

The children are:
Amalia 16 years old
Melody 15 years old
Denver 10  years old
Angelo and Angel 7 years old twins. 

If you'd like to send any new clothes/shoes, socks underwear etc....  you are welcomed to do that too, even toys!  The children are small for their ages so any pants should probably be the kind that have the buttons on the inside of the waistband that can be tightened to fit.  I'm pretty sure the clothes should be summer clothes, I don't think it gets very cold where they are!  I can send them a box of supplies/clothes. 

My heart is touched thinking of this family.  If you read this and you feel something, please say a prayer for all of them but do something too if you possibly can!  I'm committing to give to this family.  You can send in for them through the month of February.  There's no problem getting a check to our friends at any time through a stateside bank and there is no fees!!!  That helps a lot!  I'll wait to the end of February to send out a box.

Thank you all!  No gift is too small if we all participate.  We're not wealthy by any means (LOL) but we have so much more than most of this world has because we have running water, electricity, food on our table, working toilets and showers, easy access to medical care...even two vehicles. Even our poorest in America have more than so many in 2nd and 3rd world nations.  I've seen abject poverty and it is heartbreaking.  There are no safety nets in many countries like we have in the US and other western nations.  I can not help but feel we have a responsibility to do something with what we have.  Thank you for joining with me to make a difference for this little family. 


Today we got back the results of Sarah's DNA testing.  She had the most up to date microarray testing and they found NO abnormalities.  Her MRI is also normal......   NOTHING to explain all her delays and disabilities!

The funny thing is although she presents clinically with Peter's Anomaly- she does not have the marker for it.  NEITHER does Sam and he has even more characteristics  of Peter's than Sarah does.  She is 9 and already taller than Sam who will soon be 12.  So as with Sam, they will be further testing her DNA to see if there is another marker that has not yet been discovered for Peter's.  Sam has a very large deletion in Chromosome 4Q 35 and there has been questions about that.  In fact when we went with Sam and Sarah last year, they also took both our blood to see if there could be anything discovered  pointing to another marker for Peter's.  They are enrolled in a study through the University of Wisconsin but we go to a Geneticist in Orlando.  It's all very interesting to me- it's like a mystery.  Just since Sam was born, genetic testing has come so far.  His deletion did not show up on the testing we had done when he was a baby.  It only showed up as DNA testing got more advance.  In a few years, we might end up with an answer to Sarah's issues too. 

When we were having our blood taken for Sam's testing the geneticist's nurse asked if she should draw two vials, one for each child.  We had to remind her that Sarah is adopted.  She thought they were twins:)

Sarah and Vermont taking a nap after lunch today.  She's not a big fan of animals but she didn't mind Vermont.  Sarah loves that chair.  I found it at a thrift shop for $40 it has been well worth it!  I thought it was going to be my chair....NOT!   Well she will share it with me if I sit and hold her :)  Love my baby girl. 

Tuesday, January 26, 2016

Home School!

Well I did it!  After over 9 years of battling with local school administrations (they changed frequently)  I decided to home school Sam, Sarah and Selah.   We had seriously considered it this past August but we thought with the move & our oldest leaving for college that it was just too much change.  Then I thought about doing it starting in January but I had the whole breast cancer scare & surgery to deal with so I put it off till I knew whether I would have to have any follow up treatments. 

You may not realize but the three little ones were already on "hospital homebound" which meant that the teachers/therapists came to our home.  They didn't attend a school.

I fought so hard for so long to get the kind of services I felt Sam and then later the girls needed.  I've written on this blog some of the issues I've had over the years.  We've had some great teachers & a few crazy ones, enough crazies that I would never ever allow them to go to school, along with their medical/emotional needs!  When you have children who are non verbal, it's hard to trust people, especially if you'd had issues in your own home with teachers over the years.  I've dealt with crazy administrations, one lady who would talk to me in a certain accent.  Believe me she was not from the country she pretended to be from!  She had failed at her job and was given a position to work with special needs kids rather than being fired as she should have been. I've had ample reason to pull the kid(s) out in the past but I continued fighting on. 

Currently we were very satisfied with our teachers, however both girls' IEPs were out of compliance because they had had two therapist quit.  And the administration talked me out of Orientation & Mobility so they wouldn't be out of compliance in that area.  But it was ok overall.  I just didn't feel their needs were being met.

What convinced me to do this, was several things.  We needed order in our home.  Our kids usually do really good on a strict schedule and that was hard to maintain when teachers were absent or had other meetings that they had to go to.  We had very few weeks when all of their teachers were able to follow their schedule (not always their fault).  My goal is to potty train Sam or at least try and I could not do that around people's schedules who may or may not come.  Then throw in the holidays, teacher work days gets too crazy.

Also over Christmas break Sam did so good, but the day his teachers came back, he started biting himself on his arms.   Sam is very well behaved normally and in all kinds of social settings but we weren't seeing that with school.  When a child is upset, you listen to what they are saying- especially if they are non verbal.  He would be upset all day long & often into that night.  That is just not right.  Sam has always had a hard time expressing frustration and trying to get attention, we've gone through some times when he would throw toys down the hall.  One time I took every hard toy out of the house for months until he learned not to throw.  He likes to squeal loudly, sometimes it's a happy sound but lately it was not a happy sound.  Now I'm not saying to let a child- any child dictate things but parents also must take into account everything when dealing with their kids.

But the biggest thing to me was that their goals were not always realistic or helpful.  I would bring this up at every IEP meeting explaining that they needed to learn life skills such as eating on their own, getting in and out of a car, potty training, etc.....   There had been some more practical changes this past year (thanks to the teachers!) but for the most part I wasn't seeing any progress that transitioned to REAL life.  The teachers were not able to write goals like that due to their guidelines. 

Obviously we work with them constantly anyhow.  We do the same things over & over for years, and sometimes we see progress.  For example, we really wanted help with teaching Sam to get in & out of the van.  I asked for it many times a few years ago ( he had Orientation & Mobility as well as Physical Therapy at the time. )  Only once did someone work with him and they were basically ticked off the whole time.  So we continued to work with him and now he can do it by himself.  I was concerned because I was afraid we'd hurt our backs or drop him trying to get him in! 

I've seen that most of what our kids do, they learn from us.

With our little ones, we realize that they do not have the ability to read, or color or do a lot of things that will be building blocks towards more regular education.  That does not bother me to say it.  I know where my kids IQ's are and I realize that there is only so much "regular things" that they will successfully accomplish.  In other words, I'm not expecting them to have the same life as my other boys.  That in no way diminishes  them or their need to learn life skills that will help them (and their caregivers) function better.  I'm  just very realistic in my outlook. Sam and Sarah are unique in that they have lower IQs and are visually impaired but yet are mobile. 

I'm sure I'll get messages & comments that will say "if only you believe- they can do anything"  Well that's just not true.  If a person does not have the ability to do a certain task like reading a book, they can be in class 24/7 and they will never be able to do it.  BUT there are many things they can learn to do, it might take a longer time, for example Sam was about 3 when he started walking, he had the ability he just needed more time.  Sarah, well we nor anyone we've taken her to, really knows if she'll walk given her age and where she is right now.  (When I say WALK I mean walk well enough she could go from place A to place B out side the home with little assistance)  She will walk somewhat if we hold her hands or with a walker & she has started taking a step towards us if you drop your hands and tell her to "come"  But in some cases the ability to do certain things is just not there no matter how much therapy or instruction is given.   It's important to always try things, give a child every chance and opportunity but be realistic & don't push a child beyond his/her ability.  Challenge them-YES but don't frustrate them. 

I feel with homeschooling them myself I'm able to focus on THEM and work with them from the time they get up, till they go to bed. Before I would rush getting them ready in the morning so everything was done before the teachers came & then sometimes the teacher couldn't come or would be late.....  In doing that, I missed out on life skill learning!  One of my goals is for Sarah to learn to help us dress her.  She tries and she'll throw one arm one way and get her hand caught in the's challenging to dress her.  In the mornings I need time to work with her on that. 

We are keeping our private therapist for the girls and I'm looking into therapy for Sam as well as feeding therapy for Sarah (who only eats pureed foods)  These are things that are needful but that we weren't really getting with the school system. 

Last night I was thinking I have homeschooled Steve & Shad at different times.  When we first began to pastor at our church, we lived in another town and Steve went to a Christian school in still another town!  It was an intense time for us!  I homeschooled him from January- June using his old school's curriculum.  Then in August he started 5th grade here.  Then when the accident happened I homeschooled Shad and Steve while we were in NY   That was Shad's 2nd grade year and Steve's 11th grade year.  We ordered their school curriculum so it was not too hard for me.   Steve ended up being homeschooled his senior year because of where he was in the curriculum, he only needed a few more books to graduate so it was cheaper than him going back to the school once we were home.  Plus he finished up in January of his senior year.  Steve & Shad have always gone to Christian school, not because we are snobs or rich but because we like them being taught by teachers who have a Christian world view. Our school is very open to families, even those who have no faith, & I like that.  And by the way, most of the kids there are there on McKay & Step Up For Students scholarships.  We have a school choice program in Florida that is awesome!

So for now my "curriculum" will be Life Skills along with their regular private therapies.  I applied for a grant   for a Personal Learning Scholarship Account
if we receive that, I can use it to buy various things like curriculum, therapy, adaptive learning devices etc.  We have many things/toys that teachers use with them - I have quite the collection and they are things we've work with all the time.   The goal is to help them be as self sufficient  as possible. 

I'm looking forward to this.  I believe this will be a good thing for them.

Tuesday, January 19, 2016

Results & Pictures of Ukraine War

The pathology report is in an there is no sign of cancer or even atypical cells!  I'm incredibly thankful & relieved.  God gave me much grace in the past almost two months.  I was able to not focus on this too much and just leave it in God's hands regardless of the outcome. God helped me to focus on Him and my family, I wanted us to enjoy Christmas break, without this hanging over our heads and God helped us to do that!   I want to encourage all of you Ladies  to get your yearly mammograms &  paps.  Stick to whatever schedule your doctor gives you on other tests also. Better to catch something early and deal with it if possible.  Even tho this was stressful, I'm glad I had it taken out, in five years or so it could have changed and become something serious.  The doctor and staff I dealt with were just fantastic and helped me in many ways.  I am glad to say this saga is over!!!!!  Thank you for your kind thoughts. prayers and messages!

Well we have wonderful news, this past weekend we got to meet Steve's girlfriend Lauren!  Steve has guarded his heart in several situations and we feel like God has rewarded him with the perfect girlfriend.  She fit right into our crazy family, bless her heart.  Who knows what the future might hold for them, we are excited to see!  (Isn't' she absolutely gorgeous??)

Look at my sleepy Minion last night.  

Recently we heard some sad news from our beloved Ukraine!  The WWII monument celebrating the largest tank battle of the war has been destroyed by Pro Russian forces.  It's a shame, it celebrated both the Russian and Ukraine victory over the Nazi's that was a real turning point in the war on the Eastern Front.  We saw how proud Ukrainians were of their victory over the Nazis.  This monument was about an hour's drive from the girls' orphanage and we went there one day with our driver (who spoke no English) We loved him-somehow we communicated.  It was a lovely spring day and we knew our time in Ukraine was drawing to an end and our girls would soon be released to us.  It was just a perfect day.....

It was HUGE~

Here we are on the feet of it

this was on the back side
During WWII that huge plain was a battle field. 
Unfortunately it has become a battle field again

I like this picture of Steve on a tank

this monument reminded me of the one in DC for the Vietnam Vets- it had all the names of the men who were killed in this battle. 

This is now.....

So very sad

Right where we walked-now there are soldiers 

 Our heart will always love Ukraine, the country that was so hospitable to us, the country that gave us our girls.   

Thursday, January 14, 2016

Surgery & 10 year anniversaries

Surgery is over and we are just waiting for the results.  Thank you for your prayers, it was a very easy experience.

Sometime on Monday, a peace settled over me.  I was still a bit apprehensive, but I slept fine that night, had to be there at 6:30 am Tuesday on the coldest morning of the season for Florida LOL.  After much thought I had  decided to go with Florida Hospital of Wesley Chapel, a new hospital and used a surgeon from our medical group.  I had debated about what to do since I do think it matters where you have medical procedures done.  One of my college friends had had the same type of surgery last year and used the same surgeon and same hospital and had a really good experience.  That gave me confidence. 

I had decided against a biopsy because an interducatl Papillion usually is surgically removed just in case it could turn into cancer so regardless of what a biopsy might say now, in a couple of years, it could change.  PLUS, I've done some reading about biopsies and I'm not comfortable with them if they can be avoided.  Some studies are showing that in the case of cancers, there is sometimes a "needle track"  of tumors.  I don't ever want to take the advice of the internet but some real cancer hospitals like Sloan-Kettering are doing studies to look at the safety of this common procedure.  I'd rather error on the side of caution. 

Since the tumor could not be seen or felt, I had to first have a thin wire inserted to mark it.  Generally the wire is inserted into the tumor but I asked if it could be placed to the side or on top of it without penetrating the tumor.  The radiologist cheerfully accommodated  my request without being upset or making me feel like I was crazy.  I really appreciated that!   He was able to loop it around the tumor so it was marked for the surgeon, but the tumor was not penetrated.  That procedure was the worst part, but it was not too bad.  There were about five people in the room and one of the staff held onto my feet and started rubbing them!  I just concentrated on that and it helped me.  I don't know if they offer that service for all patients but I sure did appreciate it!   Of course I was numbed up, but honestly that only helped somewhat.  But I've experienced much worst pain that that before hitting my foot on a toy.  It was just the idea of a wire being inserted in to  my boob!  LOL  The radiologist did tell me that it looked like an typical Papillion so that helped to take away some of the fear.

Then I was taken back for the surgery.  The surgeon was able to take the tumor out in one piece and said it was soft, which I've been told is a good sign.  Of course it has to be examined by pathology because sometimes there are atypical or cancer cells inside it.  We are very happy that the tumor was taken out with out it being ruptured in any way.  In case there are any bad cells inside, the idea is they stayed inside! 

The pain has not been bad at all.  I'm surprised at how easy it's been.  The staff told me to keep an ice pack on and believe me I have done that!  I haven't even taken an Advil in over 24 hours.   They also told me to keep a bra on all the time.  I was bummed, I thought I'd have an excuse NOT to wear one for a week or so LOL.  Today I took my first real shower and realized how hugely swollen I am, it was a shocker, lots of bruising too.  I hurried right up and put that sucker back on since it's supposed to help keep the swelling down.  The bandages are still on, and no I've not looked LOL.  I'm not good with incisions, I'm basically doing what I did when I had the C-section and let things come off when they fall off ( that was the staff's advice too) I had learned when I had the C-section to use a blow dryer to dry the air (set on a very low speed and heat) I did the same thing today.  I recovered so quickly from the C-section so I'm hopeful this will be the same. 

All in all, it's been much easier than what I anticipated.   Jon's taking the week off so I don't have to pick up the kids and a friend is going to help me next week.  Steve delayed his return to college and stayed with the kids for the surgery.  His classes didn't start till the next day but it's fun to get back early and see all your friends.  So I appreciate him staying over. 

I'm not too worried about the results, I think everything will be ok but of course I will be glad to know for sure.

Today I had to get a pelvic ultrasound, I actually drove myself so we didn't have to take the little ones.  The ultrasound was fine, driving home was rough!  That was the last test of all the things I had to do regarding all the stomach issues I've had.  The doctors have concluded I just have really bad IBS, with some active colitis.  I just have to take better care of myself and go back in 2 years for another colonoscopy.   This had been going on since October....the breast tumor was the surprise!  I thought I had something really wrong with my stomach.... then I just went to my yearly mammogram thinking nothing was amiss.....SURPRISE!  It's a bit ironic to me. 


BEFORE all of that we had our 10 year anniversary party last Sunday as pastor of our church.    We had the actual party/celebration at Hillsborough River State Park.  We rented the hall there and cooked out.  Several folks brought their kayaks and canoes so all the kids had a chance to go on the river.  We also had folks fishing and walking the trails.  It was a very relaxed time for us and just our type of celebration!

Ok you can tell it was very casual!



Saturday was our actual 10 years exactly and that was also 10 years to the day that I got Shad!
So while Jon was here in the US with Steve and Sam, getting ready for his first week as pastor of Grace Church, I left that Friday to fly to China and get Shad.  It was hard going on my own but at that time it was the best decision.  So Jon's first Sunday at the church was January 8th and as he was finishing his Sunday night sermon, I was meeting Shad for the first time in the orphanage (about 8 am China time- 12 hours ahead).  What a big day for our family!!!!  It does not seem possible that we adopted Shad 10 years ago, actually it seems like he was always with us, always our son.  We went to Chick Fil A on Saturday so he could celebrate with the food he loves, he got a 30 piece chicken nugget box!   He was meant to be our boy!


Sarah and me after her bath. 

Tuesday after surgery we had to drop Steve off for his second semester of college.  I didn't know if I'd be able to go but I was fine.  Jon said I'd gone if I just had gotten up from open heart surgery LOL

BTW, that sweat shirt is my oldest piece of clothing I own, somehow it has missed all the times I've cleaned out my clothes closet.  I actually wore it the day we brought Steve home from the hospital!  I also wore it the day we brought Sam home!!!!  No kidding!  I've got my money worth from that sweat shirt!

Bye Bye!

We had to go to Chick Fil A to console ourselves.  Shad fed Sarah for me, I couldn't do it no matter how hard I tried, I kept getting soup all over her. 

We had to say goodbye but not for long- we had to drop something off to him the next day LOL and he is coming home Friday for the weekend.  The beautiful girl he is dating is coming too to meet us.......we can't wait....poor little girl RUN!  LOL  she has no idea.....

Thank you again for all your thoughts and prayers, I'm sure they've helped! 

Tuesday, January 5, 2016

Happy New Year!

This new year didn't come with any big resolutions for me......I just want to get through the next month or so!  To be honest, Jon and I couldn't even stay up to welcome the new year in.  Our boys thought we were total wimps but we'd been watching a nice dry WWII documentary and the narrator was an Englishman, it was better than any sleeping pill. 

Having our boy home from college has been so helpful.  I've gotten some time with my girlfriends, Jon and I got to go out with some close friends and I've gotten a lot of work done around the house.  We STILL had stuff in the church's storage sheds so thanks to Steve, we got all that to our new house.  It was all plastic boxes of memories..... 

THEN I sat out in the garage and went through each box.  I found that even though I'm so NOT a hoarder, I had some junk stuck in there so I got 20 boxes down to about 10.  I also found so many little outfits of the children's so I washed all of them and put them in my empty hope chest.  I had Steve and Sam's "coming home from the hospital" outfits.  Both of the boys wore preemie outfits home.  It's really hard to believe looking at Steve now!  I had the outfit that the orphanage on Shad when they handed him over to me....all FIVE layers!  I thought I had a fat little Chinese baby until I went to change him!!!   I have the beautiful matching dresses that I was able to change Selah and Sarah into before we walked out of the orphanage with them.  Just writing about those little pieces of cloths make tears well up in my eyes.  What great memories. 

I also found some awfully embarrassing teen age stuff LOL- one of my BFF told me I HAD to keep it so she could see all the pictures and notes!  I was laughing so hard at my teen aged self!  Then I found some articles I'd written for our college newspaper including a long one about a trip to Chicago over Christmas in 1986.  We did a mission trip to the inner city.  I have to admit I cleaned up the real story quite a bit!  It was a hard trip, we stayed in a tenement building and it was so cold.  The apartment had NO water pressure and very little hot water.  But it's a great look back on! 

I'm in the far right.  Funny thing, on the bottom picture that was about a sock hop- my roommate was in that picture in the striped sweater! 

Then I found the picture we had made for our "official picture" when we were missionaries to NYC

Who were those babies???????????  And WHY hasn't perms come back in style?????

Anyhow I'm happy I've been trying to get that one job done for about a year LOL!!!!  I got to see all our memories and clean out all the roach droppings!  Fun times!

We've had some wonderful weather down here in Sunny Florida.  Some folks complained about it but it's been great, even now although it's colder, it's still great.  I love Florida- I could be a PR person for Florida.  We've gotten a lot of time outside with the kids. 


Some pictures from Sunday

I'll be honest I usually dress my kiddos up for church.  I think it teaches them that Sunday is a day set apart- not for legalistic reasons.  But this past week, I was just not ironing anything!!!!!
 Shad and Sam are just 4 months apart in age, Shad has already turned 12 and Sam will next month.  Shad is NOT a giant, he's average size for an Asian but on the small size on the "American" scale.  Sam is the size of a 4 or 5 year old.  He is a bit rounder, so I have to buy size 8 and hem everything.  I'm so glad we live in Florida so he can wear shorts most of the time!!!!  No one can ever believe Sam is as old as he is.  It's part of the whole Peter's Anomaly/ Peter's Plus.  Sarah also has that but she is not as small as Sam is despite her years of malnutrition.  She has caught up in an amazing way!  In fact the little outfit she was wearing Sunday...that was it's last time LOL!  I could barely squeeze her into it. 
Well just a little catch up....
We have a BIG week- This Friday January 8th will be 10 years since I was given our sweet baby Shad in a cold orphanage in Chengdu China.  It was also my husband's first Sunday at our church!  BIG day for the Clantons on January 8, 2006 on absolute opposite ends of the earth!   I want to write about that experience this weekend.   This Sunday our church is having a big celebration to mark our 10 year anniversary.  We are looking forward to it!