"Our life maybe a crazy life but it's our life" I'm married to a pastor of a small rural church, who is also the prison chaplain. We have 5 kids, each with their unique story. I love gardening & we all love the outdoors. Our life is not the way we planned it to be, but we are learning to trust God in every area. Come and read about our life as we live it to the fullest!
Saturday, January 4, 2014
A quiet easy day!
A nice peaceful uneventful day:)
Thanks for the sweet comments, sometimes I'm almost afraid to look at what folks comment back LOL! thanks for the encouragement!
My bro in law and niece have spent the weekend with us. the kids love having them here with us. Last night (after getting everyone quiet) I laid down with all my kids safe and sound and extra folks here along with our outside dog INSIDE since it was so cold....and I felt very contented and safe. What a blessing. I don't take anything for granted. Life is so uncertain and fragile.
We went walking today FINALLY! I'm determined to walk daily and get back to my exercise plan! We went to my cardiac walking trail and it has been redone, a new asphalt walkway! YEAH for no more potholes, especially when I walk without my glasses on!!!!!!! I only did 2.5 miles today but it is a workout, not flat, it has hills built in to the path.
I have to say thanks to our local Walmart, we had bought a new tv back last spring. It went out on us and the company, Element, said we had to send it back for it to be replaced. to send it back was $140! So Walmart, refunded us the money and we bought a BIGGER TV and this time a Samsung! I really didn't even complain much to Walmart about the whole thing, they were just really gracious to me about the situation. I didn't expect them to allow me to return it!!!! I was really blown away by the assistant manager and how kind she was and so helpful! Of course they see me in there just about every day LOL.
So Florida has decided to join the rest of the country and welcome Winter! We even had the heat on last night and I can't stand heat! This next week is going to be really cold for us wimpy Floridians! It's kinda fun for us, it's a change. I have BOOTS to wear with a sweater dress tomorrow and I'm excited:) I found them on 70% clearance and they were JUST the pair I was looking for. I love when that happens! I may get to wear them a few times this next week or so, then they'll be put back in the back of the closet till next year!
Hope you all have a great weekend! Stay warm!
Friday, January 3, 2014
Our Prodigal Returns....
Our prodigal.....
This morning I told Shad to go outside and clean off the patio. He had left his Lego boxes out their and they had gotten rained on. He cleaned the table off but failed to do some other things asked of him yesterday in his play area. So I reminded him of those things. He got a little angry look on his face but went to do them. Remember this is all his toys and play area, so it is all mess he had made. We have a fenced in patio and yard, and that's where he plays with his toys that have small pieces. It is very safe, and comes with a big dog that barks. So in a few minutes, Steve asked me where Shad was and I told him outside. Steve was actually going to play a joke on Shad and went out the back door to scare him. Well......in a few minutes, Steve is back totally freaked out because Shad is no where to be found. At first I thought Shad was pranking Steve, or had just gone in the back area for something. Then Steve, Jon and I are yelling for Shad with nothing but silence echoing back. After about 5 minutes of us running and yelling for him. I realized we couldn't wait any longer and had to call the police. I called, as Jon drove off one way and Steve the other to see if maybe he walked down the road, chasing a cat or dog. They both got back about the time when the first officer arrived.
In just a few minutes our yard was filled with a fire truck, ambulance, and police cars. It became increasingly obvious that this was very serious. Jon has worked for over 16 years in the prison setting and before that for the Polk Co Sheriff's Department. I worked for years as a probation officer, carrying a case load of many sex offenders and when I became a supervisor, my unit had the majority of the sex offenders. Jon and I both know the statistics. In fact, in my brain I was counting up the time and I knew that the crucial first hour was almost over.... Just before this happened, I had read that the infamous killer of Jimmy Ryce ( a young boy whose kidnapping, sexual abuse and death by a convicted sex offender caused the state of Florida to pass the Jimmy Ryce act that entails CIVIL commitment to a facility following an offender's release from prison if the courts deem the offender to still be a threat to society. I filled out quite a few "Jimmy Ryce forms") had had his death warrant signed by Governor Scott.
So I had remained pretty calm throughout this time, until all that hit my brain and I saw black dots. I leaned up against the patrol car because I thought I was going to pass out.
We checked all the buildings again on the property. Jon had noticed a truck parked near the entrance to one of the trails behind our home so a cop was dispatched to follow up on the truck. Steve said he was going to look in the woods....well thank God he did! In just a few minutes, we hear the yelling "he's been found, he's ok" echoing throughout the yard. We go running to them. Steve had found Shad sitting under a tree, covered with stickers and sandspurs.
At first all Shad would offer was that "he was thinking" When asked about what, he said "his life" He was very serious and scared of the police. He wouldn't' open up at all with the police there. After they all left with our sincerest thanks, he started telling us what had happened. He had gotten angry that I reminded him to put his stuff all up so we could go do something. So he did it but then he basically decided he was mad and was going to "run away". Well he only got about 25 feet off our property but was deep enough in the woods hide from us. When he saw the cops come up, he was terrified that he was in really bad trouble so he stayed put. I guess he'd still be there if Steve hadn't gone out to find him.
He has never done anything at all like this and hopefully never will again. We shared with him how terrified we were that someone had taken him away to hurt or kill him. He started crying and crying. It was easy to see how bad he felt.
Now we are pretty no nonsense parents. We don't reward bad behavior but this time Jon reminded us of the prodigal son and how thankful the father was that the son had returned home that he threw him a big party. And even tho the "elder brother" had to go and find our prodigal, we were extremely thankful that he was at home with us. So he went and changed clothes and he and I sat and took out all the sand spurs on his dirty clothes and talked. Then he sat in my lap for awhile. Then we all went out and got something to eat and we took him to pick out something to buy with his Christmas money.
He made a wrong decision and hopefully he learned from it and will never do something like that again. If he does, next time he will be in a lot of trouble with us and with the police. But this was something he did without thinking and it snowballed bigger than he ever dreamed of it going and he didn't know how to handle it. But we chose to just overwhelm him with our love. He didn't really deserve it, to be honest if anything deserved a spanking, this certainly did! Not only had he put himself in danger in the woods, but he had upset us and cause the police, firemen and EMS to spend about an hour involved in a false case when there are plenty of other things happening that need their attention and we did share all of that with Shad. Once I saw him walking in, and could tell he was fine, I told the officer with me that he better stay for awhile because I was "fixing to kill that boy" LOL the officer knew I was kidding around and laughed with me out of sheer relief!
I was asked if I was going to share this on here and I really did debate. This is pretty personal stuff but I'm sharing because I think we need to think about how precious our children and family really are to us. You have no idea how relieved we are that he was just out sulking and being disobedient. I'll take that ANY day over what could have happened! You can learn from things like this! We did put in some new rules now that he is not allowed out of our fenced in area and we went over some scenarios that offenders and kidnappers could try on him. This situation today showed us how we could be more careful with our son and how we can treasure his heart.
I was not wrong in asking him, no TELLING him to clean up his toys and throw away the old boxes. I've taught my kids I am not their maid! There was nothing wrong in him being outside in the play area. But of course as soon as this happened, I blamed myself, I blamed myself for telling him to put the boxes in the dumpster, because I thought someone had grabbed him there. (btw, he is not allowed to go to the dumpster anymore unless a grownup is outside.) That was the furthest point from our house and from our barking dog. I asked Jon to go and see if the boxes were in there, they were....that was the point, when I almost fainted. I was so afraid.....
I think through this, Shad saw how much Jon, Steve and I love him. Steve has been so sweet to him all day and even paid for half of what he bought with his Christmas money! (you know that is brotherly love!) Shad is the most outgoing of our kids, but he is the one in the middle. He isn't the oldest and he isn't the youngest. He doesn't have the medical issues the little ones have so he doesn't get that kind of attention nor does he get the kind of attention and freedom his older brother gets. It's a hard place to be in.
So today was a day to talk about problems and show love. It actually turned into a sweet day together all of us. And from the bottom of my heart, I am grateful that the only thing we had to really deal with today was a bad attitude. The fear of what could have been, seemed to put it all more in focus! How many parents would be thrilled that their missing child was just out "thinking" a few yards from their home? I know I was thankful that was all we had to deal with!
Here is Shad's kittens after their bath yesterday. Sweet love muffins!
And thanks again to the wonderful men & women of the Pasco County Sherriff's Office! They totally are the best! We appreciate them so much!
This morning I told Shad to go outside and clean off the patio. He had left his Lego boxes out their and they had gotten rained on. He cleaned the table off but failed to do some other things asked of him yesterday in his play area. So I reminded him of those things. He got a little angry look on his face but went to do them. Remember this is all his toys and play area, so it is all mess he had made. We have a fenced in patio and yard, and that's where he plays with his toys that have small pieces. It is very safe, and comes with a big dog that barks. So in a few minutes, Steve asked me where Shad was and I told him outside. Steve was actually going to play a joke on Shad and went out the back door to scare him. Well......in a few minutes, Steve is back totally freaked out because Shad is no where to be found. At first I thought Shad was pranking Steve, or had just gone in the back area for something. Then Steve, Jon and I are yelling for Shad with nothing but silence echoing back. After about 5 minutes of us running and yelling for him. I realized we couldn't wait any longer and had to call the police. I called, as Jon drove off one way and Steve the other to see if maybe he walked down the road, chasing a cat or dog. They both got back about the time when the first officer arrived.
In just a few minutes our yard was filled with a fire truck, ambulance, and police cars. It became increasingly obvious that this was very serious. Jon has worked for over 16 years in the prison setting and before that for the Polk Co Sheriff's Department. I worked for years as a probation officer, carrying a case load of many sex offenders and when I became a supervisor, my unit had the majority of the sex offenders. Jon and I both know the statistics. In fact, in my brain I was counting up the time and I knew that the crucial first hour was almost over.... Just before this happened, I had read that the infamous killer of Jimmy Ryce ( a young boy whose kidnapping, sexual abuse and death by a convicted sex offender caused the state of Florida to pass the Jimmy Ryce act that entails CIVIL commitment to a facility following an offender's release from prison if the courts deem the offender to still be a threat to society. I filled out quite a few "Jimmy Ryce forms") had had his death warrant signed by Governor Scott.
So I had remained pretty calm throughout this time, until all that hit my brain and I saw black dots. I leaned up against the patrol car because I thought I was going to pass out.
We checked all the buildings again on the property. Jon had noticed a truck parked near the entrance to one of the trails behind our home so a cop was dispatched to follow up on the truck. Steve said he was going to look in the woods....well thank God he did! In just a few minutes, we hear the yelling "he's been found, he's ok" echoing throughout the yard. We go running to them. Steve had found Shad sitting under a tree, covered with stickers and sandspurs.
At first all Shad would offer was that "he was thinking" When asked about what, he said "his life" He was very serious and scared of the police. He wouldn't' open up at all with the police there. After they all left with our sincerest thanks, he started telling us what had happened. He had gotten angry that I reminded him to put his stuff all up so we could go do something. So he did it but then he basically decided he was mad and was going to "run away". Well he only got about 25 feet off our property but was deep enough in the woods hide from us. When he saw the cops come up, he was terrified that he was in really bad trouble so he stayed put. I guess he'd still be there if Steve hadn't gone out to find him.
He has never done anything at all like this and hopefully never will again. We shared with him how terrified we were that someone had taken him away to hurt or kill him. He started crying and crying. It was easy to see how bad he felt.
Now we are pretty no nonsense parents. We don't reward bad behavior but this time Jon reminded us of the prodigal son and how thankful the father was that the son had returned home that he threw him a big party. And even tho the "elder brother" had to go and find our prodigal, we were extremely thankful that he was at home with us. So he went and changed clothes and he and I sat and took out all the sand spurs on his dirty clothes and talked. Then he sat in my lap for awhile. Then we all went out and got something to eat and we took him to pick out something to buy with his Christmas money.
He made a wrong decision and hopefully he learned from it and will never do something like that again. If he does, next time he will be in a lot of trouble with us and with the police. But this was something he did without thinking and it snowballed bigger than he ever dreamed of it going and he didn't know how to handle it. But we chose to just overwhelm him with our love. He didn't really deserve it, to be honest if anything deserved a spanking, this certainly did! Not only had he put himself in danger in the woods, but he had upset us and cause the police, firemen and EMS to spend about an hour involved in a false case when there are plenty of other things happening that need their attention and we did share all of that with Shad. Once I saw him walking in, and could tell he was fine, I told the officer with me that he better stay for awhile because I was "fixing to kill that boy" LOL the officer knew I was kidding around and laughed with me out of sheer relief!
I was asked if I was going to share this on here and I really did debate. This is pretty personal stuff but I'm sharing because I think we need to think about how precious our children and family really are to us. You have no idea how relieved we are that he was just out sulking and being disobedient. I'll take that ANY day over what could have happened! You can learn from things like this! We did put in some new rules now that he is not allowed out of our fenced in area and we went over some scenarios that offenders and kidnappers could try on him. This situation today showed us how we could be more careful with our son and how we can treasure his heart.
I was not wrong in asking him, no TELLING him to clean up his toys and throw away the old boxes. I've taught my kids I am not their maid! There was nothing wrong in him being outside in the play area. But of course as soon as this happened, I blamed myself, I blamed myself for telling him to put the boxes in the dumpster, because I thought someone had grabbed him there. (btw, he is not allowed to go to the dumpster anymore unless a grownup is outside.) That was the furthest point from our house and from our barking dog. I asked Jon to go and see if the boxes were in there, they were....that was the point, when I almost fainted. I was so afraid.....
I think through this, Shad saw how much Jon, Steve and I love him. Steve has been so sweet to him all day and even paid for half of what he bought with his Christmas money! (you know that is brotherly love!) Shad is the most outgoing of our kids, but he is the one in the middle. He isn't the oldest and he isn't the youngest. He doesn't have the medical issues the little ones have so he doesn't get that kind of attention nor does he get the kind of attention and freedom his older brother gets. It's a hard place to be in.
So today was a day to talk about problems and show love. It actually turned into a sweet day together all of us. And from the bottom of my heart, I am grateful that the only thing we had to really deal with today was a bad attitude. The fear of what could have been, seemed to put it all more in focus! How many parents would be thrilled that their missing child was just out "thinking" a few yards from their home? I know I was thankful that was all we had to deal with!
Here is Shad's kittens after their bath yesterday. Sweet love muffins!
Here is Sam ATTACKING his corn on the cob today:) He loves it!
YUM
And thanks again to the wonderful men & women of the Pasco County Sherriff's Office! They totally are the best! We appreciate them so much!
Wednesday, January 1, 2014
A Review of 2013
It's a nice cool rainy day in Florida. This is my favorite kind of day, a light misty rain falling, all my family together, what can be better?
Thinking back over 2013, brings many emotions. This time last year, Selah was still in the "rehab" in Jacksonville and we were coming home on the weekends to redo our house and get it ready for Selah to be moved it. It was a very stressful time in our lives. She wasn't doing good, we couldn't get nursing set up for her, we were so tired of being away from home (be it ever so humble, there's no place like home) and we had other considerations like our church and Jon's job at the prison, and the kids' schooling!
It took until the end of January and many phone calls to get Selah transferred home, finally on Jan 28th we came home.....then she was in & out of the hospital from that point on with trach infections. Until she was started on the Tobramycin at the end of April. She also had foot surgery and was in casts for a month during that time.
HOME
From April on she has been home, we've done everything we could to have therapy for her on almost a daily basis. Then from June-August we had the BIG nursing/Blue Cross fight.... at the same time she started her first HBOT treatments. It's been a busy year learning all the things that we need to do and have in place for our girl to live at home with us.
Sam has had a year of change that he has dealt with and he has learned a lot of things this year too. He stopped using a high chair and sits with us at the table. He started using the potty some. He has grown up in many ways. It's hard to believe he will soon be 10 years old!
Shad is such a "go with the flow" person that he just transitioned from the Ronald McDonald House, to the hotel, back to home....with no problems. He loves being back at school and with his friends. With just half of the school year behind him, Shad is almost through with all his 4th grade work and soon will be starting on 5th grade work!
Steve turned 18 years old, got his driver's license and is almost done with his schoolwork for 12th grade! He's taken back up jogging and plans on doing more triathlons. It's amazing to see your child become an adult!
Jon just got his 15 year pin for working for the Department of Corrections (lol I think they are behind a year or so!) He loves his job there and is so satisfied. Our church is growing by leaps and bounds! After all these years (the first Sunday in January is his EIGHTH year of being here as pastor) we've sown a lot of blood, sweat and tears....what a blessing to see fruit coming forth! It's exciting & humbling to see how God has grown our congregation. Everyone has a sweet spirit, they all have a unity, it's really something to see. Our church is so different than it was at the start of 2013. Back then, we'd been gone for almost 6 months, we didn't know how we would "do our life" once we got back home. We had a few people leave our church and THEN....it was like a floodgate opened up and God brought new families in with the same vision that we have. Not many from other churches, some just moved to the area, some just started back attending church...it's been crazy to watch God do it. It was our efforts, no big new "plan" to make something happen, and I can assure you it wasn't our faith or deep prayers, we were just hanging on dealing with our own personal life BUT God.... I LOVE that! Everyone has "plans, vision statements, new programs, various things to MAKE church growth happen but I am so thankful that God "added to the church". We can't even claim credit! I'm excited to see what is ahead!
So although 2013 was a year filled with challenges, God was faithful to us. I close with this story I borrowed from my friend David.....
Thinking back over 2013, brings many emotions. This time last year, Selah was still in the "rehab" in Jacksonville and we were coming home on the weekends to redo our house and get it ready for Selah to be moved it. It was a very stressful time in our lives. She wasn't doing good, we couldn't get nursing set up for her, we were so tired of being away from home (be it ever so humble, there's no place like home) and we had other considerations like our church and Jon's job at the prison, and the kids' schooling!
Last January, Selah still in the hospital and the other kids on a stop to eat on our trips home and back
It took until the end of January and many phone calls to get Selah transferred home, finally on Jan 28th we came home.....then she was in & out of the hospital from that point on with trach infections. Until she was started on the Tobramycin at the end of April. She also had foot surgery and was in casts for a month during that time.
HOME
From April on she has been home, we've done everything we could to have therapy for her on almost a daily basis. Then from June-August we had the BIG nursing/Blue Cross fight.... at the same time she started her first HBOT treatments. It's been a busy year learning all the things that we need to do and have in place for our girl to live at home with us.
MY GIRL!
This past year has been a big year for Sarah. She has grown and made so many strides by gaining some independence in learning how to use a walker. Sarah has come so far in every area! She learned how to drink from a straw and she's learned how to whine so Mama will pick her up:) She said Mama, ONE time for me:) She has grown close to us and totally knows she is our girl!
Sam has had a year of change that he has dealt with and he has learned a lot of things this year too. He stopped using a high chair and sits with us at the table. He started using the potty some. He has grown up in many ways. It's hard to believe he will soon be 10 years old!
Shad is such a "go with the flow" person that he just transitioned from the Ronald McDonald House, to the hotel, back to home....with no problems. He loves being back at school and with his friends. With just half of the school year behind him, Shad is almost through with all his 4th grade work and soon will be starting on 5th grade work!
Steve turned 18 years old, got his driver's license and is almost done with his schoolwork for 12th grade! He's taken back up jogging and plans on doing more triathlons. It's amazing to see your child become an adult!
Jon just got his 15 year pin for working for the Department of Corrections (lol I think they are behind a year or so!) He loves his job there and is so satisfied. Our church is growing by leaps and bounds! After all these years (the first Sunday in January is his EIGHTH year of being here as pastor) we've sown a lot of blood, sweat and tears....what a blessing to see fruit coming forth! It's exciting & humbling to see how God has grown our congregation. Everyone has a sweet spirit, they all have a unity, it's really something to see. Our church is so different than it was at the start of 2013. Back then, we'd been gone for almost 6 months, we didn't know how we would "do our life" once we got back home. We had a few people leave our church and THEN....it was like a floodgate opened up and God brought new families in with the same vision that we have. Not many from other churches, some just moved to the area, some just started back attending church...it's been crazy to watch God do it. It was our efforts, no big new "plan" to make something happen, and I can assure you it wasn't our faith or deep prayers, we were just hanging on dealing with our own personal life BUT God.... I LOVE that! Everyone has "plans, vision statements, new programs, various things to MAKE church growth happen but I am so thankful that God "added to the church". We can't even claim credit! I'm excited to see what is ahead!
So although 2013 was a year filled with challenges, God was faithful to us. I close with this story I borrowed from my friend David.....
He who trusts in the LORD will be exalted.
Proverbs 29:25
In September 1939, Great Britain allied with France and several other alarmed countries in declaring war on Hitler's Germany, which had invaded Poland in its intended march toward global domination. By the end of the year, anxieties throughout England remained on high alert; everyone was fearful of bombing and invasion.
When King George V...I sat down before two large microphones to make his Christmas Day speech to the nation, he was dressed in his official uniform as Admiral of the Fleet. With so many parts of the world facing an uncertain future, his goal was to reassure the people that their nation was prepared and able and their cause right and just.
"A new year is at hand," the king said. "We cannot tell what it will bring. If it brings peace, how thankful we shall all be. If it brings us continued struggle, we shall remain undaunted."
Then, turning to some lines of poetry his wife had recently shared with him, he concluded his speech with these words, which are a fitting close to our year together. They offer a word of encouragement that--we hope--will settle your hearts amid the troubles of our own era in history. These lines are from "The Gate of the Year," a poem written in 1908 by Minnie Louise Haskins:
I said to the man who stood at the gate of the year
"Give me a light that I may tread safely into the unknown."
And he replied, "Go into the darkness and put your hand into the hand of God
That shall be to you better than light and safer than a known way.
Proverbs 29:25
In September 1939, Great Britain allied with France and several other alarmed countries in declaring war on Hitler's Germany, which had invaded Poland in its intended march toward global domination. By the end of the year, anxieties throughout England remained on high alert; everyone was fearful of bombing and invasion.
When King George V...I sat down before two large microphones to make his Christmas Day speech to the nation, he was dressed in his official uniform as Admiral of the Fleet. With so many parts of the world facing an uncertain future, his goal was to reassure the people that their nation was prepared and able and their cause right and just.
"A new year is at hand," the king said. "We cannot tell what it will bring. If it brings peace, how thankful we shall all be. If it brings us continued struggle, we shall remain undaunted."
Then, turning to some lines of poetry his wife had recently shared with him, he concluded his speech with these words, which are a fitting close to our year together. They offer a word of encouragement that--we hope--will settle your hearts amid the troubles of our own era in history. These lines are from "The Gate of the Year," a poem written in 1908 by Minnie Louise Haskins:
I said to the man who stood at the gate of the year
"Give me a light that I may tread safely into the unknown."
And he replied, "Go into the darkness and put your hand into the hand of God
That shall be to you better than light and safer than a known way.
This is the best advice I can give, standing at the beginning of a new year filled with uncertainties....
Tuesday, December 31, 2013
New Year's Eve!
This year FOUR of my kids have had surgery.....today Steve had his ingrown, infected toe worked on in the doc's office, so we were laughing about the fact that everyone but Sarah has had a surgical procedure this year! Geez...... and people wonder why I'm crazy LOL Steve can't jog for 2 weeks, he has become such an avid jogger that he is already complaining!
After his little surgical procedure, we drove and got Selah's TOBRAMYCIN (that is the correct way to spell it, sorry I've been spelling it wrong forever!) Traffic was beyond crazy! But she has her meds! And she has already had a treatment, thank God.
Tonight we are having some family over, so the food is in the crock pots (Crock pots are the greatest things!)
I have to say 2013 has been a rough year for us. I won't be sorry to see it go BUT God has been faithful through all the hard times. I've learned a lot about God this year. We've seen some amazing things happen in our family and in our church. I believe 2014 will be a better and hopefully easier year for us! I really hope so!
The most important thing is although we don't know the future, and really have very little control over it, God will walk with us through each step if we will let Him. He will be there in the good AND the hard times! I'm so thankful that even tho we don't really know what's going to happen next year, there are so many unknowns in our lives BUT God is the One we can hold to, that truth gives me a deep peace!
Just wanted to wish you all a Happy New Year!
I hope and pray that each of you will have a great 2014! Stay safe tonight!!!!!!
After his little surgical procedure, we drove and got Selah's TOBRAMYCIN (that is the correct way to spell it, sorry I've been spelling it wrong forever!) Traffic was beyond crazy! But she has her meds! And she has already had a treatment, thank God.
Tonight we are having some family over, so the food is in the crock pots (Crock pots are the greatest things!)
I have to say 2013 has been a rough year for us. I won't be sorry to see it go BUT God has been faithful through all the hard times. I've learned a lot about God this year. We've seen some amazing things happen in our family and in our church. I believe 2014 will be a better and hopefully easier year for us! I really hope so!
The most important thing is although we don't know the future, and really have very little control over it, God will walk with us through each step if we will let Him. He will be there in the good AND the hard times! I'm so thankful that even tho we don't really know what's going to happen next year, there are so many unknowns in our lives BUT God is the One we can hold to, that truth gives me a deep peace!
Just wanted to wish you all a Happy New Year!
I hope and pray that each of you will have a great 2014! Stay safe tonight!!!!!!
Monday, December 30, 2013
Pharmacy problems....
Today was one of those crazy days....trying to cram a lot of things into the day. In a nutshell I got all my/church paperwork organized, did the final church banking stuff for the year, almost had two car accidents thanks to some snowbirds (Maine and another state that I couldn't tell what the tag was) picked up some meds, was on the phone for an hour trying to deal with the company that we bought our tv from, worked out (HOPEFULLY) Selah's Tobymixion situation (by being on the phone with a local pharmacy & on the cell with the mail order pharmacy we are made to use) sold 15 more of our old church chairs (while dealing with the pharmacies) cooked a good Italian meal, got ALL the laundry done, and helped a friend. WHEW!
I had several ideas for a blog tonight, but can't get my mind around it like I want to.
Selah's situation with her medicine, Tobymixion, or Toby as we call it or the "miracle" drug.....is beyond frustrating. I started on Dec 20th trying to get it sorted out so she could get it on time, which was Dec 27th.....then she got sick and the doctor ordered it EARLY (as in ON Monday Dec 23)....we still don't have it. Since Jon is a state employee we have to go through Medco as our prescription plan. They require that if a drug is one used monthly, it has to go through their mail order plan. Well we had gotten this waived before but now they aren't considering the wavier since they have the Toby in a different category for a special medicine. Problem is.....until today the orders were just sitting there. It's not like you can go to a pharmacy and just sit down and wait until it all gets straightened out. You have to call, and always get a different person who rarely cares. Today one of the supervisors really helped us out. She even called back and got a wavier so we could get Selah's medicine tomorrow (couldn't get it in time today) but if we had waited the earliest we could have gotten it delivered would have been Friday. Selah is doing alright but she has a lot of mucus and is requiring a lot of suctioning. The Toby keeps her trach/airway clean and dries her up. It has made such a difference in her life since going on it late last April. I just hope we don't have this big of a fight EVERY single month.
The hardest thing about being a mom to special needs kids are the FIGHTS....and long waits on phones, in offices.... You have no idea until you've gone through something like we have lived for the past 10 years. I never really thought about children/families with special needs until I had Sam but I guess if I did, I'd thought they would have all kinds of agencies to help & assist. I don't mean just financially but emotionally and practically also. I assumed when Sam was born/diagnosed . I would have some guidance.....Oh I was so silly & naïve.... I had no idea what was ahead...... but I knew after Selah's accident ALL that was before me and it scared me so bad because I knew how hard it would be.... I remember being in the hospital in NY and just crying about leaving because I knew how hard it had been with Sam and how hard it would be with Selah.....unfortunately I have not been disappointed......
I don't know how parents who are young, uneducated or reluctant to deal with things handle ALL that is needed with a child with SNs. It's a never ending fight....right now, for some reason Selah's trach covers didn't come with the supplies last week so she is down to just a couple. Once they get mucus in them, they have to be changed out. But they won't come till tomorrow. Thankfully our nurse Rose really works the phone on a lot of these things and our nurse Aaron REALLY worked hard today calling and dealing with things for me. He was so annoyed for us, I heard him talking to the one company and just about cracked up....he was more straight forward than me LOL! But the nurses hate to see the ongoing fights we have JUST to take care of Selah. (and the other little ones) We have a good insurance and prescription plan but it seems that our stuff is so specialized in falls into the 'cracks" of the system.
So I have to admit, I am rather short tempered with people very easily.
I look at all of the situations we deal with for the little ones, whether it is medical, medicine, nursing, diagnoses, school.....whatever it is.... and think back to when I worked as a probations officer/supervisor. I DID my job and I did it without trying to make someone's life a mess and REMEMBER I was dealing with CRIMINALS, not little handicapped kids! I can't imagine what I'd do if I were trying to help little people like my kids! I'm not saying that because I'm so perfect but I would have loved trying to do things for families like ours', rather than the criminals LOL! And even with them, I tried to get them the best help I could find and go the extra mile. I think that is what makes me so furious is I look at our situations and see how easily it could be handled, so it all wouldn't be such a burden for me to deal with. There is no reason Selah shouldn't have had her medicine at least a week ago..... even with the waiver, I have to drive 2 hours round trip to get it for her and I am quite willing to do that but WHY does every freaking thing have to be so stinky hard?????? It's so overwhelming.....
Ok end of my whiny rant......
Well tomorrow night we have a little party planned at our house:) It will be good to be with family and welcome in 2014.... Hope you all have a good day tomorrow and a fun time tomorrow night. Please stay safe!!!! I hope and pray that 2014 will be a great year for you and yours!
Sunday, December 29, 2013
New Year Resolutions
I've never been much for New Year Resolutions...BUT for 2014 I actually have some!
1. I will relax more with my family. I tend to be very goal oriented. My family...is NOT! Not in the least bit and I feel like a fish trying to swim upstream most of the time which can make me quite short tempered with the ones I love the most.
2. I will exercise some every day. This coming from the girl who used to walk 5 miles a day, it is something I have to get back to on a more regular basis.
3. I will take less crap from people. (oh that's right I don't take much now, well it's going to get less LOL)
4. NO FAST FOOD (except pizza!)
5. I will cook supper every night:)
6. If I don't like someone, I will absolutely refuse to be around them. That sounds mean but life is just way too short to waste my time. (and before I get nasty messages, I know that sounds unchristian but is it really? I prefer to think it is HEALTHY for my spiritual and emotional life. And if I don't like someone, being around them won't change that fact.... I've yet to START liking someone that I didn't like to begin with. In fact, I usually dislike them MORE once I get to know them LOL!! And btw, that doesn't mean I wish them evil or hate them, I just do not like them. Let me love them from afar.....I can usually manage that! LOL)
7. YOLO - You only live once.
8. Shad & I will read the bible through this year.
9. I will throw Steve a rocking graduation party:)
10. I will spend more time with my husband. And treasure the time with my kids more!
Wow I have TEN New Year Resolutions! I'm going to be very busy!!!!!
So do you have any New Year resolutions?
1. I will relax more with my family. I tend to be very goal oriented. My family...is NOT! Not in the least bit and I feel like a fish trying to swim upstream most of the time which can make me quite short tempered with the ones I love the most.
2. I will exercise some every day. This coming from the girl who used to walk 5 miles a day, it is something I have to get back to on a more regular basis.
3. I will take less crap from people. (oh that's right I don't take much now, well it's going to get less LOL)
4. NO FAST FOOD (except pizza!)
5. I will cook supper every night:)
6. If I don't like someone, I will absolutely refuse to be around them. That sounds mean but life is just way too short to waste my time. (and before I get nasty messages, I know that sounds unchristian but is it really? I prefer to think it is HEALTHY for my spiritual and emotional life. And if I don't like someone, being around them won't change that fact.... I've yet to START liking someone that I didn't like to begin with. In fact, I usually dislike them MORE once I get to know them LOL!! And btw, that doesn't mean I wish them evil or hate them, I just do not like them. Let me love them from afar.....I can usually manage that! LOL)
7. YOLO - You only live once.
8. Shad & I will read the bible through this year.
9. I will throw Steve a rocking graduation party:)
10. I will spend more time with my husband. And treasure the time with my kids more!
Wow I have TEN New Year Resolutions! I'm going to be very busy!!!!!
So do you have any New Year resolutions?
Saturday, December 28, 2013
Saturday Shenanigans
Ok we are enjoying these kittens so much! They act like they have always lived with us. I'm a cat person, have had cats all my life but I have never had a kitten like these two. They are extremely well behaved, totally litter box trained. They play but they sleep good, if you touch them, they start purring. Even my husband, who wasn't really thrilled with us getting kittens, can not believe how these two just fit right in. they are adorable! they even don't mind the kennel and don't even try to get out when the door is open unless we call them out. What good babies!
Today we cleaned out the laundry room as we needed to try and have more space in there for the kennel. It's so big when everything is moved out....BUT then we had to move most everything back in and it becomes small again LOL
Sam decided to throw up breakfast. Jon had left for his bike ride and the kids were all outside and Shad came a-running to yell "Sam is throwing up" It was pretty awful. I am NOT the throw up parent in our home. I almost joined in with Sam and that made him giggle to listen to me gag as I tried to get him undressed. OUTSIDE.....thank God we live in Florida. He hasn't been sick again and is acting like himself. He had lots of mucus and doesn't know how to blow his nose or cough it up so we think the motion of the swing just caused him to lose his breakfast. He got a shower and a nap and now has eaten chicken noodle soup and seems fine. We hope so!
Selah is doing good, still a lot of mucus but everything else is fine. STILL waiting on the Tobymixion....... I get so mad!
One of my readers sent this to Selah's Facebook page
http://www.foxnews.com/story/2005/05/06/firefighter-miracle-recovery-rare-in-long-term-coma-cases/ this case happened in Buffalo NY, near Rochester. When Selah was in the "rehab" we asked about another case like this and they did try her on one med then, it didn't seem to work. It seems most of the cases like this I've read about the patient is on a combo of drugs. But you know what? This has given me hope again and I'm going to look into this. Does anyone suggest a neurologist in the central Florida area who is someone who seems like he/she would be one to do some experimental treatment???? I've taken Selah to the neuro that Sam has gone to for years, I like him but he would never try anything. He doesn't give us any hope, not even in Sam's case..... He was against HBOT. But I am going to look into a new neuro so if you have any suggestions let me know!
Also another blog reader shared a BEAUTIFUL dream about Selah being healed. And the Selah she described, was so much like the Selah we knew before the accident. She is also from the NY area, we love our NY friends!
So these two posts together have given me some HOPE for the new year!
A friend shared our Christmas card from 2004! I saved it to share with you all. Steve was 9 years old, Sam just 10 months old and me only 39 LOL Jon was 41 with just a little grey hair! The funny thing, I STILL have that black dress since I rarely wear it My hair style hasn't changed much either LOL Sam has the funniest expression on his face. We also dressed him as Santa and he was ticked off. We have the cutest Mad Santa picture, I should scan it some day and put it on here.
Hope you all are having a great weekend! PLEASE pray that I can find a neuro that will work with us and Selah with new meds.....I can see that being a FIGHT!
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