Denail Letter

We got a certified letter from the Florida Department of Management Services State Group Insurance denying our Level II appeal on Blue Cross's denial of Selah's nursing. since my husband works for the state, the appeal went to the FDMSSGI for the appeal.  The reason they cite   "is because the care Selah gets at home, can be performed by family members and is not medically necessary to have a licensed nursing professional to care for her." 

Again we are appalled....even tho every doctor involved in her care wrote letters stating the great need for nursing care for this child, some NON medical person makes a decision that she does not need nursing.....  However the interesting thing is Medicaid has approved her for 24/7 nursing care.... so one state agency says she needs NO nursing care and another one says she needs 24/7 care BASED on the doctors orders. 

We strongly believe that Blue Cross/Blue Shield is aware we qualify for Medicaid and they rather that Medicaid pick up the cost of her nursing care.  We believe this is fraud.  Obviously the Florida Dept of Management Services that oversees the State Workers would tend to also go with Blue Cross's decision as it is cheaper to have Medicaid pay for her nursing than to have BC do it. 

The Department of Justice has filed a lawsuit against the state of Florida for not having home health care available so children can stay in their homes and not go to a nursing home.  You can read about it here....    http://www.justice.gov/opa/pr/2013/July/13-crt-823.html   or here...   http://www.tampabay.com/news/courts/justice-department-files-lawsuit-against-florida-over-medical-care-for/2132566


Our situation is not quite the same but I feel that our private insurance -which is STILL a state insurance (since Jon is a state worker) is trying to push Selah's care over onto Medicaid. 

I have contacted the Department of Justice, and will contact both the Governor's office and the Insurance Commissioner tomorrow.   I have also contacted some friends in the media and we will be really pushing this publically.  If you have any contacts with any news organizations, please contact them for us, tell them our story and this new struggle and ask them to contact us.  ABC Action News  will be doing a story on this on Monday.  I've contacted a friend at FOX Tampa Bay and will be contacting the other local folks tomorrow. 

We now will file a petition for a formal hearing.  I have 21 days from today to file it.  In the mean while I will be contacting everyone who could help us on this.  If you can help in any way, please let me know.

--------------------------------------------------------------------------------------------------------------------------

This afternoon our new friends from the Bahamas came for lunch and a playdate:)  We had three little kids with Peter's Anomaly in the house!  Our friends have taken their son all over the world for various treatments and it was just amazing to see how well he does.  We had a good time, lots of laughs, we "spoke the same language"  They understand many of the things we have been through because they also have gone through it with their child.  It was a blessing to be able to spend some time with them!!!!  We are so encouraged by the help he has received at the HBOT (Hypobaric Oxygen Therapy). 

__________________________________________________________________________________

 https://www.facebook.com/selahclanton  here is the Facebook link for Selah.  Please join and pray and fast something for her while she is in treatment next week.  I am so encouraged by all the messages I've gotten from folks who are going to be involved in some way.  If you  can't do a Daniel Fast, or a regular fast, even fasting a soda or something you crave and saying a prayer for Selah would be a blessing.  I've never done a Daniel Fast and I hope I am not so grumpy that I invalidate the whole prayer and fasting LOL  That is why I'm still going to drink tea and coffee:)     You know I'd love for her just to be healed and NOT need nursing care at all anymore!!!!  That would be the biggest blessing!!!!

Thank you all for all you do, you all have prayed many prayers for Selah and have never forgotten her or our family!  Thank you for that!!!!

Daniel Fast Challenge.... August 26- Sept 15

Today I got up early and WORKED on paperwork....ours , the churches. all kinds of little annoying things and bills too LOL  I'm finally feeling more organized after being home 7 months home.  Then I met one of my BFF's Kandi for lunch.  As we were eating and discussing LIFE....we started talking about Selah's upcoming therapy treatment.  Starting this coming Monday August 26th she will be having Hyperbaric Oxygen Therapy at 10:45M and 3:35 pm for 20 straight days (including weekends)  It takes 15 minutes to get her "down" and 15 minutes to bring her "up" 

Here is some info on HBOT  http://en.wikipedia.org/wiki/Hyperbaric_medicine

My friend brought up fasting for Selah...giving up a meal, or something and praying that God will use this oxygen therapy to bring healing to Selah.  She suggested a Daniel Fast

Here is some info about the Daniel Fast if you've never heard of it  http://danielfast.wordpress.com/daniel-fast-food-list/  that is the best web site I've found. 




I've never done a Daniel Fast.  To be honest, I've never fasted much, in recent years.  Now I am a person who can go without eating if I am busy but I've not dedicated much to fasting for a spiritual reason in recent years.

She suggested that I share this on my blog and ask for all of you to pray and to fast at some point during these 20 days  I plan to go through the 21st day on Sunday Sept 15th. ...  I know some folks can not fast food altogether because of health reasons but the Daniel Fast is a fast of meats, sweets and alcohol.


So the Fast would start August 26 - Sept 15...



This is from the above web site

Foods to include in your diet during the Daniel Fast

All fruits. These can be fresh, frozen, dried, juiced or canned. Fruits include but are not limited to apples, apricots, bananas, blackberries, blueberries, boysenberries, cantaloupe, cherries, cranberries, figs, grapefruit, grapes, guava, honeydew melon, kiwi, lemons, limes, mangoes, nectarines, oranges, papayas, peaches, pears, pineapples, plums, prunes, raisins, raspberries, strawberries, tangelos, tangerines, watermelon

All vegetables. These can be fresh, frozen, dried, juiced or canned. Vegetables include but are not limited to artichokes, asparagus, beets, broccoli, Brussels sprouts, cabbage, carrots, cauliflower, celery, chili peppers, collard greens, corn, cucumbers, eggplant, garlic, ginger root, kale, leeks, lettuce, mushrooms, mustard greens, okra, onions, parsley, potatoes, radishes, rutabagas, scallions, spinach, sprouts, squashes, sweet potatoes, tomatoes, turnips, watercress, yams, zucchini, veggie burgers are an option if you are not allergic to soy.

All whole grains, including but not limited to whole wheat, brown rice, millet, quinoa, oats, barley, grits, whole wheat pasta, whole wheat tortillas, rice cakes and popcorn.

All nuts and seeds, including but not limited to sunflower seeds, cashews, peanuts, sesame. Also nut butters including peanut butter.

All legumes. These can be canned or dried. Legumes include but are not limited to dried beans, pinto beans, split peas, lentils, black eyed peas, kidney beans, black beans, cannellini beans, white beans.

All quality oils including but not limited to olive, canola, grape seed, peanut, and sesame.

Beverages: spring water, distilled water or other pure waters.

Other: tofu, soy products, vinegar, seasonings, salt, herbs and spices.

 

Foods to avoid on the Daniel Fast

All meat and animal products including but not limited to beef, lamb, pork, poultry, and fish.

All dairy products including but not limited to milk, cheese, cream, butter, and eggs.

All sweeteners including but not limited to sugar, raw sugar, honey, syrups, molasses, and cane juice.

All leavened bread including Ezekiel Bread (it contains yeast and honey) and baked goods.

All refined and processed food products including but not limited to artificial flavorings, food additives, chemicals, white rice, white flour, and foods that contain artificial preservatives.

All deep fried foods including but not limited to potato chips, French fries, corn chips.

All solid fats including shortening, margarine, lard and foods high in fat.

Beverages including but not limited to coffee, tea, herbal teas, carbonated beverages, energy drinks, and alcohol.

 

 

_______________________________________________________________________________________

 

I have to be quite honest...I probably will still drink coffee and tea...I do have FIVE kids to take care of LOL  But this is my plan... 

 

I'd be so grateful if you wish to join us!  If you wish to do a traditional fast, even if it is for one meal for Selah's healing...I would so appreciate it!

 

I don't believe that God is someone who requires us to do something to move His hand, but I also do not understand all the spiritual ramifications either.  Fasting is in scripture, Jesus himself fasted fo r 40 days....so there is something to be said for it. 

 

If you plan on fasting or praying for Selah during this time, please let me know.  Either on here, or by email at  theclanton5@aol.com

 

Thank you!  I feel there is some hope once again in my heart for Selah's recovery!!!!!!

I started a Facebook page...please join....
 

 Fasting For Selah Clanton 

 

 

 

A God Moment!

Most amazing experience today....I felt strongly to go back to the Hyperbaric Oxygen Clinic and talk to them about letting Selah start the therapy (and she is next week) but the amazing thing was there was the sweetest little guy was there and walked past me with no shoes on, and then turned and grabbed me around the neck....he immediately reminded me of Sam. (the way he hugs and the NO shoes!) ...He was there for therapy, I started talking to his dad and found out that he has Peter's Anomaly too! The family is from the Bahamas and have just traveled all over to get their son all the help he has needed. His mom and I started talking, they had never met another child with Peter's (it is so rare!) We have traveled to many of the same doctors and have the same opinion on some of them LOL (not GOOD opinions!!) So you know how tiny our little town is? Do you know how rare PA is??? For two families to meet like this.....it is unusual to say the least! This family traveled from the Bahamas for their son's therapy and we could have so easily missed each other.....really if that sweet little boy hadn't grabbed me like he did, we probably wouldn't have started talking.   Being a mom of special needs kids, I don't stare at other families, or act curious, Lord knows how I hate that!   I am so thankful for that little guy's hugs and that his family and I started talking...it was a real God moment!   I've never quite had such a moment when I knew I was right where I was supposed to be and with the people I was supposed to be with!!!! Looking forward to spending Wednesday afternoon with them!!!!!!  I am still amazed at how all that worked out. 

 

So Selah starts HBOT on Monday!  She will go two times daily for 20 days, every day, weekends included.  Since I first talked to the clinic, they have dealt with another person like Selah who has both a trach and a g-tube.  They are more comfortable now with working with Selah.  She will be in a chamber (think a sub) for 1 hour as 100% oxygen is pumped in.  The idea is that it will cause her brain to start "firing"  more normally.  We do not know if it will work but we feel we would be remiss if we did not try this for her.  If we seem to notice any significant changes we will do more.  We will go in the mornings and again in the afternoons.   I am excited to try this....if it doesn't work, at least we have tried.  They gave us a nice break on the charges but it is still expensive.  I'm thankful that God has provided for her to go! 

 

Shad started school today....

 

 

He is ready with his Duck Dynasty lunch box!  My SOUTHREN Chinese son who loves everything Duck Dynasty.....  ( our dream is to meet them LOL) 

 

4th grade look out!  Here comes Shad!

 

 

Steve started his senior year but in his PJ's:)  No picture allowed....he is looking forward to finishing up soon with school as a homeschooler.  He has less books to do than he originally thought and is thrilled!

 

 

Hope you all have a Happy Happy Happy Monday....I'm feeling pretty happy:) 

Please pray for Selah that this treatment will do a miracle for her!

 

 

Ministry.... and newspaper article

I grew up wanting to be a pastor's wife....God only knows why....  I wanted to minister to people and help meet needs and point folks to Jesus....   I can remember God speaking to my heart about it as a teen lying in my bed at night. 

While in college, I worked in various ministries.  Interesting ones, from juvenile halls, to working with drug addicts, homeless, and prostitutes...  I did an internship in the inner city of NYC for a summer.  I also worked in a small rural church...the same one we are pastoring now LOL.  I met Jon when I applied to work as the assistant director of a homeless shelter.  Jon was the director and sparks flew :)   I still equate homeless shelters and romance LOL:)

Then we itinerated which meant we  raised our support to go as home missionaries to NYC.  In our denomination , the missionaries who jump through a million hoops to get appointed, then have to raise their own budget.   We traveled for a year and a half, with Jon preaching every Sunday morning and night and some Wednesday nights throughout the southeast mostly to raise the finances.  It was tough, in the end we actually went without raising our full budget.  We like excitement LOL Nothing like living on a wing and a prayer in NYC!!!

But that year of traveling, being in so many different churches, THAT was an eye opener....  The stories I could tell....remember we were quite young, like mid 20's, at the time we were the youngest appointed missionaries ever....we had little experience....  But the poor pastors and their wives would just pour out their hearts to us over lunch or dinner....If we'd had any sense, we would have ran then!   Oh the sad stories we were told.  I guess we were 'safe" we weren't going to be around again so they could just spew their heartaches over ministry.  And spew they did....  Poor things, hurt by their church members, their district officials, other ministers .... it was awful....   Back then I thought rather smugly, that won't happen to us....well LOL.....we haven't been through as much as many of them, mainly because of me.  God has given me a "double portion " of discernment or suspicion    or whatever you might want to call it. but I do not trust people. Add to it my years of working as a probation officer....  And it has worked for our good over the years...  My husband loves everyone...Me?  Not so much!  Although with 25 years of ministry behind him, my husband is not quite the same person he was 25 years ago.  He is a lot more careful and wary of others.  I'm glad of that.  I can remember Jon getting on to me for saying I didn't like someone...NOW he listens and then watches ....and time and time again I'm right. 

One time another minister wanted to include us in his ministry and I told Jon "no way" and then I told him the reason why I thought that....Jon thought I was being mean spirited .....UNTIL about 10 years later and the guy was on the front page of our newspaper for some criminal charges.....  for the very thing I'd picked up on.... ( you do know I said "I TOLD YOU SO!" don't you?)

But we have had some hurts, some misunderstandings along the way in ministry.  Not too many thank God.  One thing we have dealt with over the years is me being attacked and then someone trying to come between us.  Since our personalities are soooooooooo very different, some people think we might not get along.  That is not true, we actually have learned to work together in a way I'd never imagine years ago, we actually compliment each other and respect each other.  We are a TEAM who has gone through a few different rodeos....LOL   (as in this ain't my first rodeo) 

When we were newly married, and newly in the ministry, we did struggle with that a couple of times, I'd be attacked by someone and then that person would try and get close to Jon and talk about my lack of spirituality.... It worked twice...  but we learned from those two experiences.  Now if we sense ANYONE is trying to come between us, that is a HUGE red flag.  We stop everything at that point.  We had that happen a few years ago and rather than respond to each other negatively, we as a team dealt with the real problem (or what could have become a problem)  and it went away. 

I read a post lately of a friend of mine who is a pastor and he was given a "back handed compliment' along the line of "hey your last few sermons really stunk but todays' was good"  LOL  I was able to share a funny one that was given to Jon awhile back...   Jon visited someone who was a friend of one of our members and the fellow came to church.  After the sermon, he first complimented  Jon then said  " Man, I don't know how you get up and preach to empty chairs week after week"   It was so funny to us, just really cracked us up:)  It was not said mean spirited and the guy probably really meant it as a compliment:)   We've repeated it to each other on several occasions since:)  Sometimes you just have to laugh!


If I were to go back now to Bible school.....Oh My the classes I would teach.....  I learned a lot but I didn't learn a lot at the same time!  There is nothing like practical ministry to teach you the reality of your dream.  Some ministries like being a chaplain or working in a homeless shelter is what is called para church ministries....it means a ministry that comes along side of a traditional church in order to reach out to all members of society.   Para Ministries are a lot easier than pastoring LOL

When you pastor a church, you learn a lot about UNfaithfulness.....I could write a book on that subject alone.  You see silly power plays, even in small churches and you begin to despair of the human race at times LOL 

BUT you also see the faithful ones, who you know you can count on them every week to be there and to be HAPPY about being there.  We've had faithful folks, who were the biggest grumps in the world!  LOL  They were faithfully grumpily there...each week...Praise the Lord.....LOL

Then you have the jewels....real jewels of the kingdom.  The ones that give their lives for God.  We are so blessed to have several people in our church like that.  They are so faithful to God and to the church and to the pastor.  They are encouraging, happy and content in the Lord.  They take every opportunity  to minister to others...  We have some retired couples that are amazing.  One couple moved down from NY to live here full time to volunteer at the prison and be a part of our church...we love Ken and Lynn and so do everyone who meets them.  Our music minister travels an hour each way on Sunday and is so faithful and godly.  We have a friends who have just committed to being a part of our church that also travel about 45 minutes each way to be here and to be involved in the music ministry in such a faithful unassuming way....  No one has to pat anyone on their back or give them a parade, they are just here & faithful! 

We've been at this church for almost 8 years.  We weren't really looking to pastor when this door opened up to us.  But now we see God's leading in it.  There were some honeymoon years and a few years of dealing with things, growth, change and physical change as we remodeled every building on the property.  Just recently we have felt a new good change happening...some things we have prayed for, are finally happening here.  It's been amazing to look back over the time here and see how we have grown and matured personally.  Again the things I could teach at bible college.....everything from "Know and Love your church's constitution & By laws to how to get a poisonous snake out of the sanctuary "  yep those are not the things they focus on in bible college....they should LOL 

We felt when we came here, we'd be here maybe 5 years, that is what we committed to since we've never been anywhere any shorter time than that ...except one church and that is a funny story 

We were asked to take a church in the central Florida area before we came here.  It was before Sam was born so it's been over 10 years ago.   The leadership of our district called us in to talk to us about it.  We were somewhat interested even after we heard some stories about it.  Let's just say crazy church...crazy people....  it rivaled the church I grew up in as far as problems and how it would fight pastors...    Challenges never have made us flinch so we went and Jon filled in for one Sunday.....  I was still in recovery from the loss of the twins and the valley of depression I had walked through HOWEVER that did not stop me from saying "these folks are NUTS!"   We actually accepted the pastorate and Jon moved some of his books into the office.  The second week, things were like unreal...lots of Pentecostal "voodoo"   We hear folks were meeting and praying against us....lovely....then this grown lady has a melt down and is sitting on her step father's lap...ok....that raised a few red flags....   Jon was still a chaplain...that is his heart so we quietly moved his books OUT of the study and told our district "thanks but no thanks- in our opinion just shut the church down and sell the building"  That is exactly what happened.  Then next Sunday at church, Jon resigned.... and I shared a "word" I'm not sure it was from the Lord but it was truth.  Good truth from God's word about being about the Father's business and not living in sin.  So that was our big short time as the pastor of that church....   we laughed about it then and we laugh about it now.  Life is too short to waste valuable resources on people that don't want to do anything about the kingdom except play church games...and power plays.... 

Jon works full time for the Department of Corrections.  We chose years ago out of necessity not to take a salary from our church.  We did for several years but as we were faced with remodeling the church, we took a leap of faith and stopped taking a salary at all from the church.  It's been great and it is liberating.  God has been so very faithful to us in ways we could not imagine before.   I don't think we'd ever take a salary again from a church unless things were really different. 

We probably have a very different approach to ministry than a lot of folks have.   Jon choses to be bi-vocational as a pastor, we chose not to take a salary from the church, we have come to believe in family oriented services (which means children stay with their families in church-no separation or segregation)   For a rural church, we have some interesting people in our congregation.....everyone is welcomed and everyone comes....we love it!  I wish I'd taken pictures today, our church was full and we had people from all kinds of backgrounds in there worshipping God and some learning about God for the first time.  WE are not at all "seeker sensitive" and we don't schedule things to bring in folks.  So we are really "cutting edge" LOL  we just cut in a different direction than many churches these days do. 

Neither of our boys feel "called to ministry" and honestly I am so glad.  that sounds awful but I see what it takes and how hard it is and I don't want either of them to face it.  I guess I should be spiritual and say I'd love for them to follow in our footsteps but I surely don't want them to unless they had a CALL that they could look back on and KNOW beyond a shadow of a doubt that they were doing what God wanted them to do.  Jon and I both have a strong calling and never once have had any doubts about being in the ministry  That is a good thing LOL!    And even tho I am quite cynical, I do know that I am called into ministry.  I have never really wanted anything else and the same for Jon....if you know Jon, then you'd know that he is called to ministry.  There is nothing else he could do, not because he couldn't do something else, but nothing else has his heart but ministry. 

Ministry is more than just getting up and preaching....although my husband loves to preach!  It's visiting the sick, it's counseling, it's equipping the congregation to reach out....it's preparing for the sermon, praying over needs....it's making sure an inmate in confinement has a bible to read....sometimes it's cleaning the church....whatever.....it is it is unto the Lord. 

It's exciting when you start to see things happen in the church you pastor.  We've felt like we have toiled here through some dry periods but now God is starting to pour out blessings here.  I'm certainly not saying we have reached the mountain top but at least we have crossed the desert and can see the mountain:)   We've learned faithfulness even while going through our own personal agonies...   we've learned to be faithful.   That is not something that is necessarily taught at Bible college either!

Today we saw our church full and our parking lot full, that makes us happy.  Not just for numbers sake, but for the fellowship, the shared excitement, the fact that we as a body can do more together than one person can do alone....  I believe in church, I believe God's word command us to "not forsake the assembling of ourselves together" and I don't think that assembling of ourselves together is just two Christians getting together to eat lunch.  The early church had weekly formal church meetings (not formal in the sense people had to dress a certain way but formal in the sense that it was consistent and all together)   The early church followed the tradition of the Jews who also had weekly meetings.  I want to roll my eyes when someone says "we're having lunch together, we're having church, no need to get up on Sunday morning...."  Oh please....give me a barf bag...  I have YET to meet a strong Christian who was lazy in their church attendance.  Maybe God knew we needed that discipline in our lives. 

Anyhow these are just some of my thoughts on ministry.  It is a big part of who I am....I can't escape it:)

If I could be doing the ministry I wanted to do...I'd be in Ukraine in the middle of a special needs orphanage....our dream was to go back... work in the orphanage and start a church in that area...no evangelical church for miles....   Jon felt moved to start a church and I would have loved to have taken over the orphanage (some are going private) and raised money, gotten therapists over, brought in medical care and teachers....I don't understand WHY our lives changed so dramatically, and that will never be an option for us but we still trust God and do what He has entrusted us to do here and with our sweet family.  Maybe that was just a dream, but it was definably our dream.....

-----------------------------------------------------------------------------------------------------------------------


Selah has had a good weekend.  Her nurse has worked with her as usual and she has had a lot of things to do to keep her occupied.  Her bi monthly treatment of Tobymixon is over :(  I always worry about her getting sick when she is on her 4 weeks off from it.  She did have to be taken home today from church to be suctioned out and she was grimacing....I guess she was tired of the preaching LOL

School starts tomorrow and we are all ready for more structure in our lives:) 

Hope you all have a good week!!!!!

http://www.tampabay.com/news/publicsafety/accidents/family-of-girl-who-nearly-drowned-in-erie-canal-copes-with-new-challenges/2136787

here is the newspaper article about our family's fight with Blue Cross....

Slow lazy Saturday

This has been a slow Saturday for us.  Just doing some house chores and cleaning the church.  Jon took the boys and went to the Y to work out.  I'm cooking my famous Shrimp Jambalaya and cornbread for supper tonight.  YUM!  My family will be happy!

I ordered a DVD of the PBS show Globe trekker UKRAINE!  So tonight we get to "travel" to Ukraine:)  I also got "Exporting Raymond" it started as a documentary showing how the TV show "Everyone Loves Raymond" was exported to Russia and how it got started there.  They actually have it on TV.  This documentary is very funny, we saw a small portion of it so we have our tv shows for tonight ready:)  Which is good since we have a huge thunderstorm coming and it usually knocks out our satellite tv!   The joys of living in the country LOL


I'm happy to announce Steve has finished 11th grade work with a 92 average!!!!!   He had gotten behind but did a good job catching up!   Next year (which starts Monday for him) will be a lot easier.  He won't have as many classes (books) to do.  He hopes to finish the year by December.  I think that is ambitious but we will see!  He will stay under the homeschool umbrella of a Christian homeschooling group.  If he went back to his school, it would be confusing and he may have to end up taking more classes.  He had to take some extra ones for this group as it was....  

Shad will start back to school on Monday at the Christian school the kids have gone to for years.  He is excited and has a new "Duck Dynasty" lunch box.   He got all new clothes this year, He is going into 4th grade and can't wear anything from his 2nd grade year.  He'll be styling:)   He was homeschooled last year, since we were in NY most of the year. 

With the little ones, we are still waiting on our wonderful (roll my eyes) public school system to have services for them.  We have chosen not to send them to school for various reasons.  Sam, with his low blood sugar issue, his eye drops and so easy to get sick, it is safer for him to be home.  Sarah needs to feel emotionally connected with me, she would be confused by being in school all day.  And Selah, there is no way I'd send her off all day!  She would stay upset and sick.  We have therapists coming for her, probably way more than the school would have for her and the other two. 

Hope everyone has a good weekend.  If you attend church please put Selah's name on your prayer list tomorrow.  I would so appreciate that!!! 

Survivor

It's been a year and today I feel like a survivor.... 

We have just made it through the worst year of our life but we are still standing.  Our family is intact, we've figured out how to live this "new normal"  Jon and I are still together, so many families divorce when tragedy strikes.....  Our kids are all close, no one is having any issues that we see.  We have made it by God's grace.

I want to talk about the faithfulness of God to us.  I may never understand WHY all this happened to us but God was faithful from the beginning to now.  He forewarned me through a word by a stranger in a Mall (LOL  I still can't help but laugh that the only "word" I've ever gotten has been in a Mall and not in some holy service LOL)  He was with me from the second I took off running down the road towards the rescue vehicles....  He was with Jon and gave him superhuman strength to get the kids off the bottom of the canal.  He had rescuers in place in the park. If no one had come to Jon, both of my children would have died, they were without a pulse and Jon had no way of doing CPR while clinging to a stroller and a branch....

While we were in NY so many wonderful people came across our path to encourage us.  We never lacked for anything.  The very day that Jon's leave time ran out, a couple brought us coats and an envelope full of "coffee money"  Let's just say that "coffee money" totaled more than Jon's bi weekly salary....  People were beyond gracious to us.  We specifically asked the various news organizations NOT to mention any need at that time.  In spite of that so many people who didn't know us were so generous to us.  I kept a list to send thank you  to but lost it and I'm very sorry but we are all so thankful for all that was done for us.  We got packages, gift cards, cards, cds....we were so blessed....  Ronald McDonald House of Rochester was AMAZING to our family and just wrapped their arms around us and loved on us daily!   All of the folks who blessed our family, were sent from God to put their human arms around us......Community Christian Church of Williamston NY rallied around us as did the pastor of Gates Assembly of God, some people came and went but those pastors were so faithful to us.  Our dear friends Dan & Charlene were always there for us too.

Then when we were going to the rehab in Jax, the Jacksonville Ronald McD House was not as friendly and told us that our family was too large for us to stay there.  We called once and was told NO in no uncertain terms....We had no idea where we'd stay....but then a dear college friend Bryan who is going through his own valley with numerous medical issues, contacted some friends who just blessed us....   Mandarin  United Methodist church  just wrapped their arms around us and loved on our family.  They gave points and money so we could stay at a very nice long term hotel.  they arranged meals for us and just really reached out to our family those 8 weeks we were in Jax.   Again God in human flesh helping our family.....

God was faithful to us as were his people.  We were never alone, never overcome by worry about financial matters.  In fact we didn't really even think about things like that because we were so involved with Selah's situations.  God had His people there so we didn't have to think or worry about anything.  Thank you all so much. 

God was faithful to us during this past year in a way I've never known.  He has given me courage to face one of the worst situations of having a child who is still in a light coma or a persistent vegative status.  God doesn't' always remove every problem from our path, He is not a genie.   But God is still a good God.  He will be with you when tragedy strikes.  We live in a fallen world, bad things happen....but God can walk with you through the bad times. 

I'm the wife of a pastor, we have had our own personal tragedies to deal with and we have seen many other people's tragedies.  Life is not fair or easy....NO ONE gets out alive....

So many people still expect life to be easy and perfect for them.  I just love when someone who doesn't give God the time of day is so quick to turn around and blame God when their 90 year old grandmother dies....   "Oh why didn't God heal my grandmother???  Why???" 
Believe it or not I've seen that happen.....  And honestly had to bite my tongue.   So you don't care about God except for when your life is touch by tragedy and then you expect God to" make it all better?"  Now I'm not taking anyone's death lightly, my own mean grandma died at 91 years of age and I wept at her funeral.  It's just that, that was an extreme situation..... there comes a time when the laws of nature take over.....( I believe God put those laws into place)

But sometimes we as humans are quick to be like a 5 year old and get angry at God and go off in a huff with out toys  "I'm not playing with you God...I'm not serving you anymore God"  I know humans can be like that because that is basically what I did when we lost the twins.  But I learned that there was ONLY ONE place to run to in time of trouble and that was towards God not away from Him.   There are times when I am still tempted to do that, times I want to throw up my hands and quit serving God.   But I know, I know the faithfulness of God.  How can I walk away from One who has loved me and taken care of me?  How can I leave the One who was close by my side in a lonely hospital room?  Where would I go to?  

There is NO where in scripture that promises us a life free of trouble, in fact if you read the bible at all, you'll see the Bible actually promises us trouble will come our way.... BUT God will be with us through it all IF we let Him. 

Everyone wants a miracle and Lord knows I do too....but when we look in scripture at folks who were raised from the dead, we realize something....they are dead now....  Jesus didn't raise them up to live eternally on this earth.  You don't see Lazarus walking around....  Everyone that had any type of miracle done for them, they are all still dead now....Does that make sense to you?  What I'm saying is that even if your life is perfect and you have no hardships, there will still come a day when you breathe your last breath.  


So I just want to encourage you in whatever situation you are in , you can be a survivor IF you trust in God.  He can walk you through the darkest valley.  He can be there in the storm and we are learning, He will be with you as you walk a hot dry desert land....  Trust Him, don't get angry about the things in your life...

God is faithful and He is just....

I'm determined to trust Him.  There have been times when I've asked Him not to let me fail Him in a public way.  Our lives have been more public over the past year and I do not want to bring shame on the name of Jesus through my doubts and unbelief.  But I do want to remain open and honest. 

I can tell you today that God is still a good God.  I know He has been with us and enabled us to deal with this past year.  We can be survivors because of His faithfulness! 

So Jon took Selah and Sam on a walk...... one year ago today

Well the day is here....the one I've been dreading for months.   During the night I woke up a few times, in almost a panic mode, like something had waken me up....then I'd realize what the day was and everything.  We are trying to stay as normal as possible but our day is "off".  Our regular day nurse had to switch days and Jon is off from work this week, it just adds to my stress.  I just can't believe it's been a year, it's like some kind of magical number, I don't know how to explain it but having reached a year seems to make things more real, more permanent.  

I've never really told the story of that day in my own words but I want to today....


We got up early, expecting to be called to the hospital for Sarah's MRI.  We got the little ones fed.  Then I got a call that Sarah couldn't' get in for the MRI until the next morning so we had a free day.   I had dressed the girls and me in matching tshirts we'd gotten at Mayberry.  They were pink and said "We're the FUN girls from Mt Pilot" it was a spoof off of the Andy Griffin Show.   Well the Ronald McDonald House was having their annual fund raiser  of the Lemonade Stand.  A local radio station was there....lots of folks around.  One of the staff gave us RMH shirts for the kids to all wear so I changed all the little ones.  We were sitting around thinking about what to do with our day.  The week before I'd had foot surgery, my second surgery of the summer on my foot, so I still had a big bandage wrapped around my foot......  Shad was outside with the lemonade stand, Steve was playing a video game with a new friend and the little ones were getting antsy.  We were taking a family to the airport after lunch so Jon said he'd take the kids on a walk.

 

 

 

 

 

 

 

last picture of Selah before the accident

 

 

 

 

We had the double stroller and a single stroller with us as Sarah didn't walk at all, Selah couldn't' really walk outside and Sam tends to be lazy.  Jon asked Steve if he wanted to go, that way all the little ones could go but he was having fun with his friend ( and his friend who is fighting cancer was enjoying someone his age to play with him)  Shad was in the middle of the lemonade stand and I couldn't walk much having just had surgery the Thursday before.  So then we had to figure out which kids to take.  We knew Sam had to go because he was really tired of being inside.  At first Jon was going to take Sarah but then we felt Selah would enjoy it more because Sarah liked to be in the single stroller and not have anyone next to her.  So Jon took Selah and Sam on a walk......  First they stopped and got lemonade from the Lemonade stand outside.  I walked out with them after getting them all settled in the stroller.  We all got a cup of lemonade.  Selah loved it, I don't think she'd ever had any.  I actually watched them go off down the side walk.  After reminding Shad not to get close to the road, I went back inside to Sarah and Steve. 

Again I had no foreboding of danger...it was a happy day.  There was a little concern in my heart about Sarah.  Since the day I saw her picture, I wanted Dr A to work on her eye.  I could tell he was hesitating and I was afraid he thought she wasn't a good candidate because he is a gung-ho person and ready to move on any case he thinks he can help.  Asking us to do the MRI, made me realize he had some doubts about her being able to have the implants.  But I could comfort myself with the fact she was a happy girl and we loved her whether she could have the eye implants or not.  So that was the only worry on my radar......

Another family that their child sees Dr A was leaving that day, so I ordered pizza for all of us while I was waiting for Jon to come back...right around this time...11:45 am....  We went ahead and ate the pizza as Jon never eats pizza as it was taking some time for him to get back. 

Jon and I are both avid walkers/exercisers.  We'd been going to NY for 5 years at that point and have walked miles of the Erie Canal.  It is located right behind the Ronald McDonald House and is wonderful to walk on.  Rochester NY is a city that is dedicated to staying GREEN and having excellent parks and places to enjoy the outdoors.  The Canal system has been turned into a nature walking/biking area that goes for miles and miles.  We have pictures we've taken over the years back in the area around there.  Jon and Steve had walked back there on that previous Monday night with the little kids while I had gone to eat out with my good friend from college who lives in that area.  While Jon and the kids were out there they saw some deer....this is right in the middle of the city but it is so wooded, you see all kinds of animals. 

So nothing is worrying me....I sat in the dining room after Steve and his friend went back to playing on the game and our friends went to their room to pack up so we could take them to the airport.  Shad was still outside with the Lemonade stand..... I sat there and read the paper....it was about noon....

In the paper there was a funeral notice for a precious little four year old boy who had drown just days before.  I looked at his picture and prayed for his family.  At that time, little did I know, my family was in the water fighting for their lives.  There was also mention of a man who had drown in the canal on Monday afternoon....down from the RMH.  Just seconds after I put the paper down,  someone came in and said there was a some big commotion  at the end of the street.  Tons of fire truckers, police cars and ambulances....  I thought I'd better go check on Shad as he tends to be nosy and I didn't want him  out in traffic. 

As I walked outside and looked down the street.....I can not explain to you but I knew, I knew it was my family all those vehicles were there for....  I asked one of the RMH workers to look after Shad and I started running down the street, my foot surgery was totally forgotten for days.... as I was running I just started praying out loud, "OH GOD HELP"  I did not know what was going on and I hoped it was not my family but I knew that somebody needed some divine help right then!  

I went up to the very first cop and said "my husband was pushing my kids in a stroller...WHAT Is going on???"  He wouldn't answer me but began asking questions...I knew...he then went and got his supvisor...I began shaking so hard I could hardly stand up.  One of the cops offered to take me to the hospital to "identify the victims"  At that point I thought all three were dead.  There was a lot of confusion around me but I heard someone say that three people in red shirts were in the canal.....my three people had on red shirts...  There were news helicopters and reporters all around....  All I could think was they must have been hit by a car and thrown into the canal 

The cop tried to clean out his car so I could get in the front, but at that point I just said "let's go, I'll sit in the back" so I fell into the back, I was shaking so hard and had  a friend from the RMH to ride the few blocks to the hospital with me.   When we got to the hospital, at first I was not allowed in....  they made me stand in the ER loading dock.  At that point I started trying to climb up the cop.  Literally....I was going crazy, I thought about going for his gun so he'd pay attention to me....Thankfully a doctor came out to tell me that my husband and son were ok but another doctor was with my daughter.  She told them to let me in...so I went in. Still in disbelief....

So I see Jon on a gunnery and he is so upset.  He told me that Selah was gone....I said "no she can't be"  I just kept telling him I didn't blame him....I still didn't know what had happened.  At that point, I walked in further and saw Sam and he was alive but not very responsive.  Someone took me to Selah and as I walked in the door, of the trauma room, someone said "we have a pulse"   Very shortly after they transferred her to the PICU and I went with them for a few minutes, realizing she was the most critical ......  They estimate Selah was without a heartbeat for 45 minutes and she required 4 shots to her heart to get it started.

As they were getting her settled, I went back to Sam.  Obviously there were people with me, a social worker , several people...I kept throwing up so I carried a pink bucket with me for hours that day....  I went back to Sam and Jon.  Jon was in shock....  Sam seemed to be too.  He was very non responsive and they kept asking us if that was normal....NO it is not normal......but in my gut I thought he'd be ok.  His body temp had fallen to below 89 degrees so he was slow to respond.   We did not realize until days later that Sam had had no pulse when he was rescued..... In fact they worked on him on the bank, got a pulse and then lost him again before they got him back for good.  When we learned that, I almost passed out.  I had to sit down on the floor and breath deep.   


I felt so torn trying to be in two places at once.  I stayed with them for a few minutes but couldn't stay away from Selah.  As I was leaving the ER to go back upstairs I suddenly thought of Sam's eyes....
Having eye implants, he can not get water on his head, put his head under water and he can not get anything into his eyes......I totally freaked out.  I think the ER staff thought I was losing my mind so I called our Dear Dr Aquevella and he came down to us and took over overseeing Sam's eye flush and care.  When he came in (I was already gone back to Selah) He just wrapped his arms around Jon and was there for him like family would be.  It meant so much to us.....  Even tho people have gotten eye infections from the water of the Canal, Sam never had a problem thank God.

When I went back upstairs the head of the PICU talked to me and basically said although Selah had a pulse, they did not expect her to live through the day..... I asked if there wasn't ANYTHING that they could do for her???  I was a bit forcefully (the doctor later said I was a bit scary- I think was his words)  So he told me they could try and get her into a study that would lower her body's temp and basically shut things down for a few days.  He went on to say that I'd have to go through the consent and it usually took 8 hours to set up....  I told him that short of cutting off her head, do something!!!!!   He had just told me she wasn't going to live so if there was something to try, TRY IT NOW  !!!!!!!!!!!!!!!    

Needless to say, it didn't take 8 hours to get her into the study.  She was put on a cooling sheet and her room was cooled down.  It was about 60 degrees in there, I was already shaking...so then I was shaking with cold.  I kept going back and to between the kids until they brought Sam up to the PICU to a room beside Selah. 

Everything was so confusing, at some point Jon told me what had happened.....how he'd stopped on the path, looked at his cell phone to see the time and had to turn and shield it from the sun so he could see the time....and then as he turned back around, he saw the stroller headed towards the canal...he ran and for a split second thought he would reach it before it went over.....but he couldn't.   He jumped right in, the stroller went to the bottom ( we learn later 12 feet of water)  Jon went down and miraculously pulled it up.  The stroller and the kids together weighed over 120 pounds!  But once he got them to the surface, he couldn't get out with them.  The sides of the canal in that area were  high concert blocks...  he was screaming for help as the current took them downstream and he tried as best he could to keep their heads out of the water.  They were unconscious and  no matter what he did he could not keep their heads up very much.  But as the current took him down stream, there was one weeping willow tree branch that he could grab and then pull up on so that the kids were out of the water but he still couldn't work on them. 

A man on a bike heard his cries and went over to where some people were eating.  The people were first year med students and their teacher,  they came running and some young ladies with experience in lifesaving, jumped in.  They were able to get Sam out immediately but Selah was twisted in the straps. The fire team had to tie a rope on the stroller and haul her out.  We've often wondered if that made the difference between Sam's outcome and Selah's......

Of course we were investigated by the cops, as well we should have been....they were kind and respectful to us. One of the lead investigators told me that they estimated it took FOUR seconds for this to happen.....  FOUR seconds can change your life forever.....   He also told me they did not know how my husband managed to get the kids and the stroller up off the bottom of the Canal.  he called Jon a hero as did the other rescuers...but Jon did not feel like any kind of hero.   When I went back with him to the scene some months later, I realized if this had happened with me instead of him, we would have all died, it was a very deep area, with no way to get out of the canal, I would not have had the strength to be able to get them up like he did....

The cop that I tried to climb over at the ER bay, was the son of one of our favorite volunteers at the RMH.  She told me later that he was amazed how I kept saying to Jon over and over "I don't blame you"  I did not even know what had happened but I saw my husband so broken hearted....  And because I know his character and how careful of a person he is (like an old man)  I knew whatever had happened was some awful accident.....  I believe God gave me the words to say that day.  Evidently the cop had seen other families react a lot differently when an accident happened....

Once I knew the story, I just grabbed Jon and said "this happened to me do you remember????"    And it had happened to me..... back when Sam was a baby, I took him and Steve to a local park.  I was already to get back in shape after being on bed rest for months and spending months with Sam in the hospital.   So the three of us are out for a walk at the park with Sam's new stroller....  As we are walking, the lid of my water bottle fell off.  I bent down to pick it up....and in those few seconds, Sam's stroller rolled away and into the lake.  I FREAKED out!!!!  NOT because the water was deep, it was barely over the wheels BUT I was more afraid of Gators!  Sam's stroller stuck a bit in the mud and a fisherman ran over and helped me pull it out.  Sam was fine, not even a drop of water on him but it upset me so much I just put the kids in the car and left.  

When all of this happened, it brought that memory right back to me.  And the memory was a comfort to me in a odd way....it helped me to realize how easily something can happen and how I needed to be gentle in dealing with my husband.  To be honest, I am not a gentle person, no one has ever called me that that I know of...  several close friends and family really worried about Jon & my relationship when they heard of the accident.....  But God used that memory of what happened with me, to help me not blame or punish my husband.  I know a marriage could not stand that type of anger.   God really helped me not to put the blame on Jon, accidents happen so easily.....I know Jon and I know he would have given his life to save the children if he could.  He loves his kids, he protects them, he watches over them......   there were days I thought he'd leave the ministry.  He had a hard time and still does at times.... 

It's been so hard, we've all carried guilt.  Obviously Jon has had to deal with it.  Steve came to me a day or so after the accident and just cried and cried.  He said if only he'd gone with his dad, this wouldn't have happened.  I had to tell him, IF he'd gone, he would have had Sarah in the other stroller and we don't now that this wouldn't have happened, and maybe in the confusion, he would have let go of Sarah too.....we just don't know...   I've felt so guilty that I didn't buy Jon a watch the week before.  I had gone to the store to pick up a few things but it was such a hassle to get one of the ride on carts, and my foot hurt so bad from the nerve pain...that I was exhausted when I got back to the van and remembered I was suppose to get him a watch.  I almost went back in but I thought, I'll pick one up for him later......if only he'd had one, he wouldn't have turned away to be able to see the time on the phone....if only I hadn't offered to take the family to the airport.....then maybe he wouldn't have checked the time...if only we'd all gone to the movies or something....  So many things could have stopped this awful accident from happening.....

Usually I don't get ugly remarks on my blog but a reader did leave a remark last night saying "Had the poor girl remained in the poor Ukrainian mental institution, there's an excellent chance she would still be able to walk, talk and breathe independently."  I responded by saying "Callie,  Selah does breath independently she has a trach but that is only to ensure she doesn't aspirate on her secretions. Selah never talked, not even in Ukraine...she was non verbal. As far as walking...she had learned just a few weeks/months before we came to walk to some degree.... However there is an excellent chance she may have died there, some other children have recently died in that institution. And Sarah in all honesty was so malnourished, and lifeless, she probably wouldn't have made it much longer there at the institution. You have no idea of what you speak about.... "

It's easy to say if we hadn't adopted Selah, THIS accident would not have happened.....Sure it would not have happened.....She'd be there still today at the orphange if she was still alive.  Children have died there since the girls were adopted....  she had never been listed, no one would have ever come for her.... she'd be alone without love....without care....   We HATE this has happened to Selah BUT she does have a family that loves her and has dedicated our lives to taking care of her. 

I don't understand WHY adoption is brought into this....what if it were Sam our biological child who had sustained an injury in this accident???  Would someone then say "well if you had not had him, then he'd be a safe little egg in your ovary"   It makes no sense to bring adoption in to this situation....

Unfortunately accidents happen every single day....just this week a man died trying to rescue a child in the Keys and a toddler got away from his family at a sports event and drown in the Hillsborough River....a teen, that one of my friends taught in school, died in a riptide in knee deep water.....   Life is so uncertain....

Personally I'd love to have an underground bunker somewhere in the Midwest with 100 years supply of food and water and all the basic comforts and put my family there....but even there you can't protect 100%.....

I'll never forget the story of a friend whose sister and cousin were playing a board game, they both went to move a piece and hit heads...one of the girls died from a brain bleed..... accidents happen.... You can be sitting on your living room floor and a terrible accident happen....


So as that day progressed, people began arriving and calling us.  Poor Steve did not know for hours what had happened and he just watched Sarah and Shad.  He really thought all three had died as he began piecing together the story ......  Poor Steve.....

Everything is very blurry in the afternoon, no real clear memory until we went to bed that nigh.  I "slept "in Selah's room and Jon stayed with Sam who was starting to act a little more normal.  At some point I did go over and talk to Steve and Shad, I did not tell them that Selah was not expected to live at that point.   I just remember being so very cold and I couldn't' not stop shaking, my whole body hurt from the shaking. 

One of my best friends Charlene, who was just down to visit, lives near Rochester and she stayed with the kids.  My dear brother in law Jim flew up the next day to stay with the kids as Charlene was leaving for vacation that week.  My brother in law was a life saver, not just to help out with the kids but he helped lighten the mood.  He was with us for almost two weeks. 

Later we pierce together all that was going on around us, that we were not aware of.... people told us how they learned of the accident.  The whole eye hospital community heard that a family from Florida fell into the canal and knew it had to be us....  some friends heard about it on the news, some got calls, everyone was just in shock.... my blog had almost 60,000 hits in one day....it was crazy...

During that awful time, in a sense, we were just kept in the palm of His hand.  Thank God for shock....it helps you get through things like this that are so unbelievable.   Although we were heartbroken, we had a peace in our hearts.  It's very hard to explain but God surrounded me as I was running to the ambulances....from that second on, I felt God's presence like I have never felt it before....  I've heard people say that God just upheld them...that is exactly what happened to me.  He was so real to me, I had no doubt that God was with us.  I still don't understand WHY God did not prevent it...maybe because this is a fallen world and things just happen....I don't know.  I don't think of God as weak at all for not preventing it nor for not healing Selah....  but my understanding is just not there....


God prepared me for this....He really did....  Back in May 2012, a lady came up to me at the Mall in Tampa and said God wanted her to tell me something...   I'm NOT big into ANYONE giving me a "word from God"  I figure I know Him, if He wants to tell me something He will.....    I had the kids all with me.  She said that "something big is going to happen to your family in the next few months, many will see, God does not want you to be afraid!"   She asked to pray for the little ones and I let her although most of the time I would not..   She took so much time praying for Selah, I thought it was odd, in the sense Selah was the healthiest one, she wasn't going for a surgery or anything but it was a sweet prayer.  I really thought it was God's way of telling us that we'd go back and adopt some of the other kids we had met there at the institution.....  I even said it to the lady and she said No that was not what God was saying...  She repeated what she had told me and emphasized DO NOT BE AFRAID

I remembered that lady and her word  to me a day or so after the accident....  I've held on to the DO NOT BE AFRAID this whole past year.....I'm still holding on to that word as I go through my days...

Please keep praying for Selah....don't forget her....thank you....