Busy day....LOL do I say that all the time or what???
Started out at cardiology....We went to a new office and was told it was on St Road 54...when in fact it was on St Road 56......Big difference between 54 and 56..... FUN times.... Selah is fine, just a routine check up. Lots of "discussion" about who is to manage some of her meds.... Basically our pediatrician thinks a specialist should manage them, the cardiologist thinks the neurologist should manage the meds since Selah gets them ONLY because of neurological issues. The neurologist thinks the cardiologist should manage them since they are heart meds..... Mom is frustrated with everyone mentioned.....LOL I gave cardiology everyone's number and told her to fight it out.......
Btw I HATE when I am called MOM by anyone but my 5 kids!!!!!!!! WHY WHY WHY do health professionals do that???? Is it too hard to open your mouth and say Mrs Clanton?????
Selah is wearing a 24 hour monitor as a new patient to record her heart rates, we don't expect any problem from it but it's a pain to have on her till tomorrow.
We got home and had two evaluators for the school system come to evaluate Sarah and Selah for services. One had evaluated Sam before and it was good to see him again. We do not plan on sending Sarah or Selah to school but they can get some home bound services through the school board at home. Sam got services weekly and will start back when school starts in the fall
So Sarah got evaluated between 4 months and 16 months....she is 6 years old. I was not surprised by her scores nor did they hurt to hear. She had a good time with the guy who was evaluating her. He commented on how joyful she was:) She is such a happy little girl. She will love all the services she gets. This afternoon when PT came in, she hopped to her and lifted her arms up! I LOVED to see that:)
Selah is being recommended for services but ....she probably won't get any services without me going MADEA on them....and I'm not sure if I'm up to the fight.
Our public school system is awful here. I had to fight like a crazy rabid dog to get the services Sam had...and then we even had trouble then with people not coming, some odd things happening etc.... It's a shame that the school system is so dysfunctional and doesn't help the kids who need the help!
So after all that, then PT came...my house is like a revolving door....people in and out all day long.she worked with Sarah and Selah.
Late this afternoon Selah stormed. Her heart rate went up during therapy, which is unusual for her . Then it kept going off and she had to get her PRN meds and she came out of it in 5 minutes so I'm thankful for that! It was a storm, her heart rate went over 140 and she began shaking and being stiff. But it didn't go like it usually does so I'm thankful for that. She came right out and calmed down. We don't know what is going on. Praying that she is not sick or starting to get sick. She has no other symptoms.
We were going to go back to the camp meeting but it's too far in case something is going on with Selah. So I guess we will stay home and watch O'Reilly. I'm really enjoying the news right now....LOL We also bought some videos when we were at camp meeting so we might watch one of those. Sam loves preaching, funny little guy will come in if anyone is on tv preaching...and he will sit right down and watch it. It's almost unbelievable how he responds to preaching. Surely he doesn't or can't understand things but you'd never know it by how he acts!
Jon feels like Sam understands it in his spirit.
If you haven't noticed my blog is very close to having ONE MILLION HITS! It's unbelievable and humbling....that so many folks care about our family. In all those hits and all the comments and emails, I can count on one hand, the few negative ones! You guys are such an encouragement to me and I thank each of you for your kind words, thoughts and prayers!!!!
"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!
Thursday, June 13, 2013
Wednesday, June 12, 2013
Camp meeting
Sorry I didn't get a chance to post yesterday. All was well, I was just running:) I got home after midnight from.....CHURCH!
Shad went to spend the day with a buddy, the three little ones had PT, had to go grocery shopping, then back to pick up Shad and my dear friend Jackie so we could all go to Camp meeting together.
Now I don't know if some of you even know what Camp Meeting is....
I grew up going to Camp Meetings. Back then it was a church service held in an "tabernacle" usually open aired, that meant NO air conditioning...and remember I'm from Florida. The ceiling fans would be running, the people would have the little hand fans, for some reason they'd often have an advertisement for a funeral home, do NOT ask me why! Some folks would sit outside the tabernacle in their lawn chairs.
Camp meeting was FUN! It would last for hours and hours....maybe start at 7 pm and end up at 1 am... people would sing and shout and run the aisles.... the kids would watch, or go to the concession stand (when it opened). There would be singing and more singing...preaching, praying....
We would go to the Church of God Camp meeting down in Wimauma Florida in June and over to Mayo Florida for the North Florida camp meeting in August. It was hot....the ladies all were dressed up and back then the men wore suits. One time our family even went up to South Caroline for their camp meeting.
I've got some good memories of those time. When we went to South Carolina our good friends were the "over seers" or the head of the Church of God for that state so we got the VIP treatment:) We stayed at the camp ground in a trailer and that was just so much fun to me. I was about 5 years old and I remember being in the service, and the congregation was singing "Wonderful Peace" and the wind was blowing through the open air tabernacle. It was a little after sunset, cool (compared to Florida LOL) At only 5 years old, that memory is still vivid and precious, it sounded like heaven's angels singing to me. It's one of those memories that is like a short video in my mind, looking out to the hills, feeling the breeze, hearing that song...how lovely!
Shad went to spend the day with a buddy, the three little ones had PT, had to go grocery shopping, then back to pick up Shad and my dear friend Jackie so we could all go to Camp meeting together.
Now I don't know if some of you even know what Camp Meeting is....
I grew up going to Camp Meetings. Back then it was a church service held in an "tabernacle" usually open aired, that meant NO air conditioning...and remember I'm from Florida. The ceiling fans would be running, the people would have the little hand fans, for some reason they'd often have an advertisement for a funeral home, do NOT ask me why! Some folks would sit outside the tabernacle in their lawn chairs.
Camp meeting was FUN! It would last for hours and hours....maybe start at 7 pm and end up at 1 am... people would sing and shout and run the aisles.... the kids would watch, or go to the concession stand (when it opened). There would be singing and more singing...preaching, praying....
We would go to the Church of God Camp meeting down in Wimauma Florida in June and over to Mayo Florida for the North Florida camp meeting in August. It was hot....the ladies all were dressed up and back then the men wore suits. One time our family even went up to South Caroline for their camp meeting.
I've got some good memories of those time. When we went to South Carolina our good friends were the "over seers" or the head of the Church of God for that state so we got the VIP treatment:) We stayed at the camp ground in a trailer and that was just so much fun to me. I was about 5 years old and I remember being in the service, and the congregation was singing "Wonderful Peace" and the wind was blowing through the open air tabernacle. It was a little after sunset, cool (compared to Florida LOL) At only 5 years old, that memory is still vivid and precious, it sounded like heaven's angels singing to me. It's one of those memories that is like a short video in my mind, looking out to the hills, feeling the breeze, hearing that song...how lovely!
(1) Far away in the depths of my spirit tonight
Rolls a melody sweeter than psalm;
In celestial strains it unceasingly falls
O'er my soul like an infinite calm.
Peace, peace, wonderful peace,
Coming down from the Father above!
Sweep over my spirit forever, I pray
In fathomless billows of love!
(2) What a treasure I have in this wonderful peace,
Buried deep in the heart of my soul,
So secure that no power can mine it away,
While the years of eternity roll!
Peace, peace, wonderful peace,
Coming down from the Father above!
Sweep over my spirit forever, I pray
In fathomless billows of love!
(3) I am resting tonight in this wonderful peace,
Resting sweetly in Jesus' control;
For I'm kept from all danger by night and by day,
And His glory is flooding my soul!
Peace, peace, wonderful peace,
Coming down from the Father above!
Sweep over my spirit forever, I pray
In fathomless billows of love!
(4) And I think when I rise to that city of peace,
Where the Anchor of peace I shall see,
That one strain of the song which the ransomed will sing
In that heavenly kingdom will be:
Peace, peace, wonderful peace,
Coming down from the Father above!
Sweep over my spirit forever, I pray
In fathomless billows of love!
(5) Ah, soul! are you here without comfort and rest,
Marching down the rough pathway of time?
Make Jesus your Friend ere the shadows grow dark;
O accept of this peace so sublime!
Peace, peace, wonderful peace,
Coming down from the Father above!
Sweep over my spirit forever, I pray
In fathomless billows of love!
There is nothing in this world like the peace that comes from God. That is something I can testify to, not just in the last few months but over my entire lifetime. The peace of God, is so sweet and precious. I know I let other things come in and steal that peace away at times, but thank God, He still gives it.
As a teen, I was touched by God around the altars of the tabernacle in Florida. My heart was stirred and encouraged to be more for God.
Recently I had been talking to a close friend who had never experienced a "old timey Pentecostal" service so I told her I'd find out when camp meeting was going to be and we'd go. Well she ended up not being able to go, but by then, I'd decided I wanted to go anyhow. Another friend said she'd go and my husband loves to be in church anytime, anywhere, so it wasn't hard to get him to work his schedule so he could go. We took the kids, because I wanted them to experience it too. See, my husband pastors a Pentecostal church, but ....our denomination is little bit "calmer" than what I saw growing up..... I knew the minister who was going to be preaching last night and knew he'd be like what I grew up around. And he was! LOL
this was just a clip of a service with him leading the kind of music I grew up singing:)
I'm not one to go around calling different meetings and services "awesome" but it really was great. Tommy Bates was the speaker and he actually spoke on remembering our past and how God has been faithful to us over the years. There were even a couple of folks who "ran the aisles" so I was happy:) Please know I am not making fun!! Even tho I've never been a very expressive person in my worship, it does not bother me when others are! The sermon, was just what Jon & I both needed to hear. God is faithful and we have nothing to fear....the sermon spoke to me and helped me to remember how Faithful God has been time & time again in my life. I don't ever want to be ashamed of Him and what He has done in my life. If it were not for God, I have no idea where I'd be...it certainly would not be where I am today! Of course, you may not think I'm in a good place today LOL but let me tell you....I am in a good place....I've got God's peace in my life and I'm content, even in heartache....
A good time was had by all....my kids were quite "wide eyed" especially during the time of special prayer. In Pentecostal churches sometimes when people get prayed for they get 'slain in the spirit" and fall down. When that happens in our church or denomination , we usually use "catchers" who gently catch and lay them on the floor, well the Church of God in which I grew up is a little different.... they just let them fall LOL! It's a good test to see if folks are "in the spirit" or "in the flesh" So last night people were falling out...and my kids were freaking a little bit. The boys were cracking me up!
So I bet you are wondering if that has ever happened to me? It did ONE time... Now I've had some preachers over the years try to make it happen to me. In their excitement, they'd be praying with their hand on my head and push back a bit... I didn't really think anyone was really trying to push me down, they'd just get excited BUT I don't do "courtesy falls" for anyone! Hey, with my luck, there would not be a "catcher" LOL BUT ONE time....I was in a service and the presence of God was so real and tangible...I was way back (of course) in a very large church. The minister asked all who wanted a fresh touch from God to stand. I did and as he prayed, hundreds of feet away from me, it was like a heavy warm blanket just settled down on me and I didn't have the strength to stand. I fell, between the pews, with no one catching me at all. I did not get hurt so I guess I was "in the Spirit" Then I began to laugh, it just poured out of me along with tears...and I really felt a refreshing in my heart. Now let me tell you, my husband was so freaked out and shocked by this. he just kept saying "it must be God...." For whatever reason, I am very UN- demonstrative in church. I admire friends who can just worship freely and loudly...but I just do not do that. My husband is like that...he is totally comfortable. That night he was in amazement LOL and he still talks about it 20 years later!
Some folks think that emotions have no place in church and Lord knows I try not to be very emotional in front of people but when you really think about it.....God made our emotions, He is the One who gave us life and gave us eternal life...it's pretty clear in the Bible, if you read the Psalms and Revelation that God expects our worship to have emotion in it. We are human and we have emotions... Think about when you sing "America the Beautiful" (for my US Friends) or whatever your country's song is and you get choked up....how much more should we have emotion about God...and our heavenly home? (says the one who fights emotion just about every Sunday....)
So that is where we were last night....it was good, good for our spirits!
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Today has been a busy day. Had our care coordinator visit today, our nurses' supervisor visited, a new friend, our OT, then we (the nurse and I) took Selah to the hospital for speech just to find out the schedule had been changed....it's been a busy day and tomorrow will be too! Our nurse Aaron who is also a Catholic monk, has such a sense of humor. He says DAILY we need our own sitcom..."cuz you can't make up this stuff" If it's not one thing, it's another. We certainly keep him entertained:)
Here is Sarah on the princess car.
She will go down the hall and into the kitchen. She is so brave!
These next two pictures have quite a story to them. I had the tomatoes from my garden out after washing them to dry. Evidently Sam has watched the old movie "Attack of the Killer Tomatoes" He took a tomato and ate on it and destroyed it! Sam has to giggle when he is doing something he thinks he will get in trouble for, so I heard him laughing, coming down the hall. At first I thought he had thrown up!!! Then I put 2 and 2 together:) he was laughing so hard, he could hardly stand up!
Sam with tomatoes all over him
the Killer Tomato is dead!
That was a classic Sam:)
Monday, June 10, 2013
Important Things
http://aplacecalledsimplicity.blogspot.com/2010/03/we-didnt-get-memo.html
I'm tempted to cut and paste this WHOLE blog.....please read it. It is convicting. Every word resounded with TRUTH! This is what real Christianity is all about....not taking the "easy comfortable" way....somehow I don't think Jesus died just so we could have some middle class kind of safe life... This blog really spoke to me today. Looking back over my life, there were so many wasted years, where I did not give my all to God. Still, right now, I wonder if I'm doing all I could do for God. There is a whole decade of my life, where I just coasted, battled my own demons, and really wasted my years. Oh I have so much regret now..... We only have one life to live.... will you make your life count for God? We are not saved by our works BUT we will stand before God one day, and give an account of those works! That is sobering to me.
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So as I reflect on the above blog, I can't help but be thankful for the day to day ministry with these precious 5 that God has given to me
Selah after therapy, look at those knees. Her PT said that she might be able to go down on the prescription drug Bacifine -it is used for stiffness, tightness of the limbs. It is not a usual thing to be able to go down with the drug!
She has also not had to have Valium since Saturday!
Sarah rolling on her blue ball
She was laughing right before I took this bottom picture, in it she looks serious
This picture of Sam and Steve is stinking funny looking!
Look at Selah paying attention to the video~
I thought at first her eyes were closed but then I saw some movement that seemed to go right along with what was on the tv
And Shad man posing:)
These are the treasures I have, all with crazy unique stories, three from faraway places, two from my tummy, that were miracles in their own right.....No matter what we go through in life, I've been so blessed to have these five kids.
Jack & Jenson A VERY URGENT Need!!!!!!!!! Please Share!
http://ourfamilysescapades.blogspot.com/
A friend of mine is nearing the end of their adoption of two boys, Jack and Jenson. They will be traveling in the next few weeks and still need quite a bit to be fully funded. Both of the boys are older, Jensen is 14 years old, has Cerebral Palsy and near the cut off age for adoption from his country. Jack is 8 and has Xeroderma Pigmentosum which is fatal.
I know we have a focus child for this month, but this is an urgent situation and I felt I needed to share it.
This is from their mom:
Hello everyone and thank you for taking the time to read about Jack, Jensen and our quest to bring them home. For those who haven't yet heard about our journey or don't know much about our need, I'll introduce you to our journey here. Those who already know get to read about these precious boys again. (-; While we're still waiting on our official travel dates, we have been told to expect to travel in about three weeks and could use all the supporters that we can get to come forward- not only to help us with gathering the funds we need to bring them home but to also keep the boys in their prayers.
Last August, we read about then-7 year old Jack, a sweet little boy who has lived in an orphanage in China for nearly his entire life and has been passed over time and time again for adoption. Jack has an incredibly rare medical condition called Xeroderma Pigmentosum (also known as XP) and once we knew that we could take care of his needs, we committed to Jack in October. It has been estimated that less than 1,000 people have this condition worldwide. XP is characterized by an intolerance of UV rays, meaning people with XP cannot handle any amount of UV rays from any source- whether they be natural (like from the sun) or man-made (like from lights and other sources). People with this condition need to be kept away from all sources of UV and that means they need for significant precautions to be taken in order to keep them safe. The homes and schools of XP affected individuals need to be made safe by having all windows specially treated with UV-safe tinting. Vehicles must also be tinted in this fashion. People with XP cannot go outside without being covered from head to toe in protective gear (clothing made to block rays, long sleeved shirts, UV safe gloves, layers, specialized hoods that fully cover, the head, face, ears and neck, etc...). No part of them can be exposed at all unless the sun has completely set and there are no UV sources (like lights) around. Even if such UV sources aren't present and individuals are in their protective gear, the time spent outside must be extremely limited. Families must travel with UV meters to check to levels of UV present in buildings and vehicles that have not been treated to see if they are safe. They usually aren't and, as such, XP affected individuals must remain in their protective gear in full for the duration of their stays in such structures. Highly specialized and frequent medical care is necessary and that includes, but is not limited to, regular visits to dermatologists, oncologists, ophthalmologists, audiologists, neurologists, developmental and educational specialists, occupational therapists, etc... (Not each person with XP needs each of these specialists but most folks need the majority of them at least on occasion- some more regularly than others- and some of these medical professionals are needed by all folks with XP. Some need additional specialists.) The risk of cancer is very real for these folks and most statistics say that it is somewhere around 2,000 times more likely for a person with XP to get cancer than for a non-affected person and that is under the best of circumstances. Without all the protective measures and medical care, the risk is even greater. Most people with XP get their first cancer at around 18 months to two years of age and people usually get multiple highly aggressive cancers very early on as well. Jack is now 8 years old and has never had the medical care or protections that are critical for his survival. It isn't that his caretakers don't care about or love him. It is that they don't fully understand the condition and his needs and that the proper care is not available where he is now. Most people with XP do not even live to the age that Jack is now (especially if they have never had protections or care) so it truly is a miracle that this little boy is clinging to life. Every picture we have of Jack shows progressive skin damage and it is highly likely that he already has cancerous and precancerous lesions and tumors. Looking at the damage he has already sustained, I would also assume that he has dealt with a lot of pain over the years too. From what I hear, Jack is a shy yet loving young boy who enjoys crafts, music, stories, running, jumping, puzzles (though he gets frustrated with difficult ones) and the electronics of volunteers who have spent time in his facility. (-; He has never been able to attend regular school because of his condition and currently attends a special education enrichment class at his orphanage. This sweetie needs to come home to medical care, love, hope, education, opportunity and family. We would love your help in making that happen.
Several months after committing to Jack, we learned about Jensen. We were drawn to him right away but weren't sure about committing because we were already struggling with raising the funds necessary to bring home Jack. However, it wasn't long before we knew that we had to commit and trust that, with hard work and a lot of help, we would be able to bring both boys home. Jensen is a super sweet almost 14 year old boy who has Cerebral Palsy and has also been waiting almost his entire life to get a family. In China, once a child hits the age of 14, they age out of their country's adoption program and they forever lose their chance at a family. With a special need (especially a very visible and obvious need such as Cerebral Palsy) and no family, Jensen's future would be quite grim. We do not have any sort of savior complex but we knew we could not allow him to deal with such a fate. We're not perfect but we know that we could help bring so many things to Jensen that he would never get to experience without being adopted- primarily the love, safety and security that comes from belonging to a dedicated family. (Of course, this sweet boy will be an incredible blessing to all of us as well.) Once we committed to Jensen, people began coming forward to express their happiness that he found a family. Apparently, he has quite a fan club! (-; Volunteers who have met him in the past absolutely love him. They all told us that he has the most special spirit that they have ever witnessed and that he is truly loving, perseverant (always gets up when he falls- which happens a lot because of his CP- and keeps going), inquisitive and handsome. All have mentioned that he longs for permanent connections and a sense of belonging. A couple have told me that he can be lovably stubborn sometimes and keeps his room a bit messy too but we're okay with that! He's very much a typical teenager in that regard. (-; We cannot imagine this wonderful young man missing out on what all kids deserve but he has never fully had- the love and hope that a family can bring. I am sure that all of you want that for him too.
Both boys have conditions that have required that we make significant modifications to our home to make sure that they are safe and can access all areas that they need to on a daily basis. Everything is set for them here. All the big paperwork steps have been done and we are just waiting on a few small end-of-process steps to be completed in China so we can travel. Like I have mentioned, we are still waiting on those official travel dates but have been told by our agency to expect to travel in about three weeks. We very much need help in order to make that happen and we'd be blessed if you can help us gather the last $16,000 required. This is an expensive process but is absolutely worth every single struggle. We are doing all we can to keep costs as low as possible but most are totally out of our control. For those that we can control, we have taken every step we can to be as conservative as possible with the costs. One example would be that, I will be traveling alone. A good portion of that is cost-related but it is also so my husband can be home with our other children and continue to work during the two weeks or so that I'll be traveling. Being that I'm a teacher and summer break is upon us and that my husband is in the military, it just made more sense that I be the one to travel. We have tried countless efforts to gather the required funds and are down to the last $16,000 needed. With the adoption being expedited because of Jack's extreme health needs and Jensen being on the verge of aging out, we have significantly less time than is typical to put the funds together. It is our hope that an army of supporters can rally to help us in this final push to help our boys come home. Our exact travel dates are coming soon and these sweet boys cannot afford delays. Jensen only has a few weeks before he ages out and Jack's health is such that his life can slip away at any time. I don't say any of that to be depressing or over-dramatic but, rather, to be realistic so people can truly understand the situation. If you can help by contributing (and know that no amount is "too small"), praying and spreading the word about our journey and need, we would be incredibly grateful. You will be helping transform lives in a truly beautiful way and we will forever remember and feel the blessings you have helped orchestrate.
Thank you so much for caring about Jack and Jensen and for helping us get to these loving young men on time. We appreciate that your support and your part in this journey.
Angela
A friend of mine is nearing the end of their adoption of two boys, Jack and Jenson. They will be traveling in the next few weeks and still need quite a bit to be fully funded. Both of the boys are older, Jensen is 14 years old, has Cerebral Palsy and near the cut off age for adoption from his country. Jack is 8 and has Xeroderma Pigmentosum which is fatal.
I know we have a focus child for this month, but this is an urgent situation and I felt I needed to share it.
This is from their mom:
Hello everyone and thank you for taking the time to read about Jack, Jensen and our quest to bring them home. For those who haven't yet heard about our journey or don't know much about our need, I'll introduce you to our journey here. Those who already know get to read about these precious boys again. (-; While we're still waiting on our official travel dates, we have been told to expect to travel in about three weeks and could use all the supporters that we can get to come forward- not only to help us with gathering the funds we need to bring them home but to also keep the boys in their prayers.
Last August, we read about then-7 year old Jack, a sweet little boy who has lived in an orphanage in China for nearly his entire life and has been passed over time and time again for adoption. Jack has an incredibly rare medical condition called Xeroderma Pigmentosum (also known as XP) and once we knew that we could take care of his needs, we committed to Jack in October. It has been estimated that less than 1,000 people have this condition worldwide. XP is characterized by an intolerance of UV rays, meaning people with XP cannot handle any amount of UV rays from any source- whether they be natural (like from the sun) or man-made (like from lights and other sources). People with this condition need to be kept away from all sources of UV and that means they need for significant precautions to be taken in order to keep them safe. The homes and schools of XP affected individuals need to be made safe by having all windows specially treated with UV-safe tinting. Vehicles must also be tinted in this fashion. People with XP cannot go outside without being covered from head to toe in protective gear (clothing made to block rays, long sleeved shirts, UV safe gloves, layers, specialized hoods that fully cover, the head, face, ears and neck, etc...). No part of them can be exposed at all unless the sun has completely set and there are no UV sources (like lights) around. Even if such UV sources aren't present and individuals are in their protective gear, the time spent outside must be extremely limited. Families must travel with UV meters to check to levels of UV present in buildings and vehicles that have not been treated to see if they are safe. They usually aren't and, as such, XP affected individuals must remain in their protective gear in full for the duration of their stays in such structures. Highly specialized and frequent medical care is necessary and that includes, but is not limited to, regular visits to dermatologists, oncologists, ophthalmologists, audiologists, neurologists, developmental and educational specialists, occupational therapists, etc... (Not each person with XP needs each of these specialists but most folks need the majority of them at least on occasion- some more regularly than others- and some of these medical professionals are needed by all folks with XP. Some need additional specialists.) The risk of cancer is very real for these folks and most statistics say that it is somewhere around 2,000 times more likely for a person with XP to get cancer than for a non-affected person and that is under the best of circumstances. Without all the protective measures and medical care, the risk is even greater. Most people with XP get their first cancer at around 18 months to two years of age and people usually get multiple highly aggressive cancers very early on as well. Jack is now 8 years old and has never had the medical care or protections that are critical for his survival. It isn't that his caretakers don't care about or love him. It is that they don't fully understand the condition and his needs and that the proper care is not available where he is now. Most people with XP do not even live to the age that Jack is now (especially if they have never had protections or care) so it truly is a miracle that this little boy is clinging to life. Every picture we have of Jack shows progressive skin damage and it is highly likely that he already has cancerous and precancerous lesions and tumors. Looking at the damage he has already sustained, I would also assume that he has dealt with a lot of pain over the years too. From what I hear, Jack is a shy yet loving young boy who enjoys crafts, music, stories, running, jumping, puzzles (though he gets frustrated with difficult ones) and the electronics of volunteers who have spent time in his facility. (-; He has never been able to attend regular school because of his condition and currently attends a special education enrichment class at his orphanage. This sweetie needs to come home to medical care, love, hope, education, opportunity and family. We would love your help in making that happen.
Several months after committing to Jack, we learned about Jensen. We were drawn to him right away but weren't sure about committing because we were already struggling with raising the funds necessary to bring home Jack. However, it wasn't long before we knew that we had to commit and trust that, with hard work and a lot of help, we would be able to bring both boys home. Jensen is a super sweet almost 14 year old boy who has Cerebral Palsy and has also been waiting almost his entire life to get a family. In China, once a child hits the age of 14, they age out of their country's adoption program and they forever lose their chance at a family. With a special need (especially a very visible and obvious need such as Cerebral Palsy) and no family, Jensen's future would be quite grim. We do not have any sort of savior complex but we knew we could not allow him to deal with such a fate. We're not perfect but we know that we could help bring so many things to Jensen that he would never get to experience without being adopted- primarily the love, safety and security that comes from belonging to a dedicated family. (Of course, this sweet boy will be an incredible blessing to all of us as well.) Once we committed to Jensen, people began coming forward to express their happiness that he found a family. Apparently, he has quite a fan club! (-; Volunteers who have met him in the past absolutely love him. They all told us that he has the most special spirit that they have ever witnessed and that he is truly loving, perseverant (always gets up when he falls- which happens a lot because of his CP- and keeps going), inquisitive and handsome. All have mentioned that he longs for permanent connections and a sense of belonging. A couple have told me that he can be lovably stubborn sometimes and keeps his room a bit messy too but we're okay with that! He's very much a typical teenager in that regard. (-; We cannot imagine this wonderful young man missing out on what all kids deserve but he has never fully had- the love and hope that a family can bring. I am sure that all of you want that for him too.
Both boys have conditions that have required that we make significant modifications to our home to make sure that they are safe and can access all areas that they need to on a daily basis. Everything is set for them here. All the big paperwork steps have been done and we are just waiting on a few small end-of-process steps to be completed in China so we can travel. Like I have mentioned, we are still waiting on those official travel dates but have been told by our agency to expect to travel in about three weeks. We very much need help in order to make that happen and we'd be blessed if you can help us gather the last $16,000 required. This is an expensive process but is absolutely worth every single struggle. We are doing all we can to keep costs as low as possible but most are totally out of our control. For those that we can control, we have taken every step we can to be as conservative as possible with the costs. One example would be that, I will be traveling alone. A good portion of that is cost-related but it is also so my husband can be home with our other children and continue to work during the two weeks or so that I'll be traveling. Being that I'm a teacher and summer break is upon us and that my husband is in the military, it just made more sense that I be the one to travel. We have tried countless efforts to gather the required funds and are down to the last $16,000 needed. With the adoption being expedited because of Jack's extreme health needs and Jensen being on the verge of aging out, we have significantly less time than is typical to put the funds together. It is our hope that an army of supporters can rally to help us in this final push to help our boys come home. Our exact travel dates are coming soon and these sweet boys cannot afford delays. Jensen only has a few weeks before he ages out and Jack's health is such that his life can slip away at any time. I don't say any of that to be depressing or over-dramatic but, rather, to be realistic so people can truly understand the situation. If you can help by contributing (and know that no amount is "too small"), praying and spreading the word about our journey and need, we would be incredibly grateful. You will be helping transform lives in a truly beautiful way and we will forever remember and feel the blessings you have helped orchestrate.
Thank you so much for caring about Jack and Jensen and for helping us get to these loving young men on time. We appreciate that your support and your part in this journey.
Angela
Please read their blog and help if you can! This is a really urgent situation! You can give through their blog
Sunday, June 9, 2013
Grace Church
I keep trying for "that" family picture....but in this one Selah is sleeping Jon and Sam are not looking at the camera and Steve is holding Sarah like a sack of potatoes:) I need a summer one to replace the one on the top of the blog where we all have winter clothes on! It's too hot to look at us in sweaters!
We are really excited about some things happening at our church. We came to this church 7.5 years ago. It was a literal junkyard and falling down. We had to have dump trucks come in and take away all the junk that was on the property, in the buildings...it was unreal especially to someone like me who could totally do "Clean House" I LOVE to throw things, or give things away, and that's when it's my stuff. I really love it when friends let me clean out their house or closets. So I had lots of stuff to throw away here. Since being here, we have redone all the buildings, the yard, torn down part of a building and rebuilt. It's been a lot of physical work. Obviously we've had a lot of help too!
Just as we've had to work on the physical aspects, there have been real spiritual aspects here that have been hard to deal with. Without going into specifics, there have been things that needed to be corrected, dealt with and changed. It's been a lonely ministry at times. But we were committed. We've had people come and go over the years and honestly it was good when they left, if they weren't on board and positive. When the accident happened, and we were gone for so long, we wondered at times how it would affect our church, but we didn't focus on it because there was nothing we could do and our focus is ALWAYS on our family FIRST! When we came home, there were some changes and it was good. We finally are seeing a light, a break through here. It's something I prayed for and I'm a bit shocked to see it starting to happen:) Our church has a ways to go but it feels like the foundation has been laid and we are ready to build spiritually. It's been a long haul!
We're a truly different kind of Pastor's family. When I say our kids come first, they totally do.... we've seen too many friends who were hurt by their parents who put "the ministry" in front of their kids. We vowed to never do that and we have not. We are not interested in being "cool" or being "traditional" we like to be who we are somewhere in the middle, just being ourselves and serving God.... Our heart has always been to the hurting and the down and out, whether that was street ministry, prison ministry or orphans. We have no desire to be "trendy" or to attend some conference on "how to build your church" Jon doesn't "dress" a certain way to "win" a certain crowd. It used to be you could tell a preacher cause he had on a 3 piece suit, now it would be you can tell a preacher cause he has on jeans with holes in them, cool shoes, his shirt on the outside and his hair gelled LOL
So we have several new things going on and some ideas about different ministries that is specific to us and our neighborhood. We truly are "the church in the swamp" and we love that aspect:) We want to start something for families with special needs children and adults. We already have a great prison ministry going. We are thinking about starting an archery class for kids from this area. We have some new members and some who have just committed to working with us. It's really exciting to see some things come together. Oh we're not a "mega church" but it is great to see what God is doing.
We are excited and thankful for what God is doing.
So if you live in our area, come and check us out!
Grace Church
7060 Berry Road
Zephyrhills Fl 33540
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FYI- we have come to the conclusion that we favor "family church" meaning the families stay together throughout the service. We've seen our kids learn much more that way than being sent off to a "children's church" At first, we did it out of necessity but then we began to realize it was a good thing and then we found we were somewhat a part of a movement LOL It's called the Family Intergrated Church Movement
(or you could just call it church as it was for thousands of years before children's churches started)
We do not dogmatically hold to every part of that movement but we do believe in families sitting together, learning together and children learning what the church is....
Jon grew up in the Methodist church sitting with his family and I grew up in the Church Of God sitting with my family. We both did go to Sunday School but for the main worship, we were with our family. I truly believe it was a good thing for both of us. Poor Jon went to a very quiet church, where he would often count the ceiling tiles (and can still tell you how many tiles there are LOL) Me, I grew up in a crazy, running the aisles, shouting, Pentecostal church so church was NOT boring:) You absolutely did not know what was going to happen in a service:) It was wild at times! But the thing we both learned, was how to be a part of the church. I truly think, based on research I've read, that one reason so many Evangelicals leave the church when they turn 18 years old is that they have been marginalized by being in children's church and youth group without knowing the fullness of feeling a part of the church as a whole. There is no reason to "dumb down" church for kids and have no expectations of them. We've seen a growth in our kids' understanding (Steve and Shad) by the questions they ask us later. We can tell they are learning. Also our little ones have learned self control by learning how to sit through church. Sam rarely moves from "his spot" and he enjoys church, especially the music! Sarah does pretty good too. Anyhow just wanted to give you a head's up.
Saturday, June 8, 2013
More Square Food Gardens:)
Here are some pictures from my garden. We put in the three new Square Foot Gardens today. Now we have 16 SFGs:) It was soooo hot out there. Usually I can handle the heat but I got a bit sick. I took a completely cold shower (and we have well water so cold is COLD!) and although I had goosebumps, I couldn't cool down! But as soon as we finished, the afternoon rains came and it's been raining all afternoon, so that is perfect for the garden.
Here are the three new ones, the two where you can see plants, have Sweet Potatoes planted in them. The one that looks empty has potatoes in it.
this is my pickings this morning:) Tomatoes, potatoes, a few squash and some okra
the grape vine
I planted potatoes and cucumbers in this one.
Look I'm nice and clean now! I was so dirty I had dirt rings on me LOL I should have taken pictures in my work clothes, all dirty from mixing up the cow poop LOL
I love gardening but it is HARD work. tomorrow I'll probably be very sore!
Selah is doing ok. We don't have a night weekend nurse so we had to get up with her around 3 am and suction her and change her. She usually doesn't have to be suctioned at night so that worried me a bit. She went right back to sleep and was fine but her day nurse said she suctioned her 4x yesterday which is a lot for Selah. But everything was clear. Her heart rate has edged up just a little too, she's till under 100 beats a minute but she is closer to 90 at times....Oh Lord....I hope she is not getting sick again. The last two days, she has had to have the low dose Valium:( 2x a day.
Tomorrow is Sunday, could I ask you if you go to a church where you can share prayer requests, PLEASE put Selah on your prayer request list. As we research various things, I feel hopeful yet at times not so hopeful. We really just need a touch from God for her. Last night I woke up, just praying for her, praying that she is healed and brought back to us. I realize she is with us, yet she is not.....as the 1 year anniversary approaches, my heart feels so heavy. Please pray that God will heal our Selah!
This afternoon we had to go to Brandon and pick up her new Medicine refill and then go get my husband's van from where he was having some work done on it in Lakeland. It stormed the whole long trip. On the highway by near our house, we saw a head on collision, or rather the aftermath of it. I pray that the folks were not killed, but it looked bad. It just made me think how we don't know what tomorrow holds....life is unpredictable..... I bet the folks involved in the accident, had no idea when they woke up this morning their lives would change like that. We just do not know what a day might bring. Let's be prepared.....
Friday, June 7, 2013
Family Time
Selah continues to be stable. I got an email from the doctor in Germany. At this time it seems they are only working with children whose cord blood from their umbilical cord was saved:( But I was given the name of a doctor at Duke that has some type of study going on....I will be contacting them soon. I actually have an email into a doctor at Duke, but not the same name. It does seem like with all the searching I did before and now, it seems to circle back around to Duke University...who knows maybe we can get her in a study there!
Thank you all for your info, I looked at everything and used the email addresses I was given. Someone even sent me the phone number but it was answered in German...LOL so I stuck with the email!
We were able to see some dear friends today and Jon got to spend some time with his dad. By the time I got back to his dad's, he had fallen asleep so I didn't get to see him just my brother and sister in law. It was good to just sit with family for awhile and reconnect. Sometimes it seems so hard to get together with family but once you are together, you think "WHY do we wait so long?" Family is so important to me, not really having one growing up. When I married Jon, I truly embraced his family 100%. I called all his aunts & uncles, aunt and uncle too:) Now so many have passed away but I'm glad for the relationships I've had. Jon has two married brothers, one older and one younger and we all been together all these years. It's special.
Thank you all for your info, I looked at everything and used the email addresses I was given. Someone even sent me the phone number but it was answered in German...LOL so I stuck with the email!
We were able to see some dear friends today and Jon got to spend some time with his dad. By the time I got back to his dad's, he had fallen asleep so I didn't get to see him just my brother and sister in law. It was good to just sit with family for awhile and reconnect. Sometimes it seems so hard to get together with family but once you are together, you think "WHY do we wait so long?" Family is so important to me, not really having one growing up. When I married Jon, I truly embraced his family 100%. I called all his aunts & uncles, aunt and uncle too:) Now so many have passed away but I'm glad for the relationships I've had. Jon has two married brothers, one older and one younger and we all been together all these years. It's special.
Jon Sarah and me today at lunch. She loves to eat and I have to say our local Olive Garden is so nice to us. They puree her soup and she just loves it:) One of the managers became friends with us years ago when Sam was little and they really have helped out when we go in with Sarah. She was all smiles today:)
There is just something about doing special little things for Sarah that warms my heart. I am so glad I can take care of her. She was so mistreated for years. To see her smile just makes my day! It seemed the staff didn't even want to touch her, now she is loved and treated like a princess. Selah fared better than Sarah but she went through some hard times too. To be able to take care of them is a blessing that is hard to explain.
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Please pray that I will be able to find a study (they are usually free AND more structured) that will take Selah. Since she doesn't have her cord blood obviously then it's going to be harder. BUT some of the things I've read suggest they can harvest her own stem cells from various parts of her body. If she gets her own stem cells there is no danger of any type of rejection or problem. We probably would NOT be interested in getting stem cells from anywhere else, too many ethical issues and dangers.
My mind keeps going back to last summer, comparing and it just is like a knife in my heart. I really want to see Selah back to us.
Also pray for our extended family, we have some folks really going through some hard times and they need God's help!
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