Tonight I sat by Selah's bed and just cried out to God for her. This journey has been hard for us but I can't even let myself think how hard it has been for her. That is what breaks my heart. Doctors tell us that she basically knows nothing ...sometimes I hope that is true but I don't think it is.
Driving back tonight in the cold, I couldn't help but contrast the seasons...when we came in early August, it was still summer, one of the hottest in the Northeast, we all were wearing shorts, school still hasn't started...now it is winter ( at least for us! ) The temps are down into the 30's in the mornings, the leaves are falling, some trees are bare already, there possibly will be snow flurries in some areas up here in the next few days, school has been going for almost 2 months back home. Eight weeks have passed, our lives have been turned upside down, the season has changed....the only thing that remains is God's faithfulness....
Honestly, I just miss Selah. I prayed that God will return her to us, our Selah. She is so beautiful & precious. She was so funny, the perfect child for us. What a joy she brought us. So tonight things were quiet and I was able to really focus and pray. There were so many precious things that God had dropped into our hearts in the past few months. I don't know what the future holds but I'm thankful for the things that God has given us. God has been faithful to us, He will continue to be faithful to us. All I can say, is God has always been with us. He will continue to do so.
I've been reading a book that was sent to me "Faithful Women & Their Extraordinary God" by Noel Piper. (thank you so much to my friend who sent to me!!) I'm a speed reader but I'm taking my time with this book. Today I read the first chapter, it was about Sarah Edwards...let's just say I do not measure up in any way whatsoever. Sarah (love that name!) was the wife of Jonathan Edwards...what a life, trusting in God completely...what trials she faced, died in her 40's right after her husband died....both died trusting in God. I'm going to reread it again tomorrow. Right now, I find it hard to concentrate on anything (that's why I've been reading Nancy Drew doesn't take much attention LOL) It's amazing to read of a woman, over 300 years ago, who faced uncertain times in her life and yet she trusted God through it all. One story that sticks out to me is the story of how her daughter Esther when her husband died wrote to her mother, Sarah, asking for her parents to pray that she would not faint under this severe stroke...she was afraid that she would dishonor God...through the trials of her life. That really spoke to me. I want to honor God through the trials of my life & I do not want to faint under this severe stroke and that encouraged my heart that a woman over 300 years ago had the same desire....
My desire is to honor God through this trial. God is a faithful God, one that is trustworthy. I've not always been faithful to God through trials. Sixteen years ago, this month we lost twins, that was a trial that I did not honor God as I walked through it. It took a few years before I chose to trust God fully in every area. Then we had Sam....I learned trust.... Trust has always been an issue for me. Having grown up very self reliant, I didn't trust God fully. I felt I was a "self made woman" and I was. I could make things happen, find work or whatever I needed to do. Then we lost the twins and I couldn't do anything to fix it. I am a fixer! OH I was sooooo angry! Angry that I couldn't do anything to change things at all. Angry at God, angry at the world....so me and God fought for a few years....LOL or I fought for a few years. It was a rough time....but I grew through that. I finally began to learn trust in God, something I had never known before although I'd been a christian really most of my life. Then Sam came... I got a crash course! Seems like the crash course has continued now for about a decade and I'm in my final exam!
I'm a very opinionated person and rather firm (lol) when I make up my mind. I've been called blunt and alot worse at times. The only time I'm gentle is with my family. So when I'm dealing with situations, I'm not a meek gentle woman (to say the least) I don't think I have EVER been described as a gentle woman in my life! So in reading Sarah Edward's story, I can't help but think we don't have that description in common but I have a bulldozer, bulldog faith....that's what my husband calls me. A bulldozer cause I will push down whatever obstacles are in my way and just keep going and a bulldog faith cause I will just hang in there. Truly I like that description better than him saying I am a gentle woman (LOL) But I do pray that I (we as a family) will honor God in this journey. I want to be an example, of someone who walked through a trial trusting in God. NOT so I can be seen as some huge woman of faith (gag me) but that GOD can be seen as the faithful God that He is....and if He will do it for me, He can do it for others! What I mean is NOT necessary walking through this getting the miracle we want but just walking through it hand in hand with God.
It means alot to me when I get messages and emails saying that our journey has encouraged others in their walk. We all go through different things but we can encourage each other as we go through life. I would SO MUCH RATHER have my old life back, than for any of you to even know my name, please understand that! I sometimes get a bit angry when people ( who are not going through a trial) say things to me "like you never know how many lives you've touched" because I'd rather NOT touch any lives, I just want my baby back, along with my sweet life of being a busy happy mom!!!! But on the other hand, I am grateful that I've met others who have their own journey that they are walking and we can walk side by side by a little while and encourage each other, in this journey called LIFE. It's a hard balance to think about.
Last Sunday Pastor Bob at Calvary Assembly of God in Chili preached on "Stamina" What a good sermon for us to hear!! Now I have heard hundred of thousands of sermons over my lifetime, if you include Sunday School and Bible College and not too many stick with me but boy did that one resonat in my heart!!! That's what I need to hear!
So again I ask you for prayer....please please pray for our little girl! And pray for us that we will "finish the race that is set before us" We all have our individual stories and our own race to run. My race may not look like yours...and your race may be different than mine but let's run it. Pray that we can run our race," looking to Jesus the author and finisher of our faith".....
"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, October 11, 2012
Tuesday, October 9, 2012
Plans?????
Just found out today that Lakeland Regional Medical Center in Lakeland Fl has turned Selah down as a patient. It seems that this was an administrative decision, not a medical one. We were not really given a reason why... Selah has insurance, a primary and a secondary so it's not based on that. We will be looking into this tomorrow.
Selah did something new today. Both Sarah and I have quite a cold so I've not gone over since Sunday. But Jon had her in her chair as he walked across the room and saw her open her mouth as if to respond to him. He immediately got on the ground close to her and started talking to her. She moved her mouth as if to speak ( she babbled back and to, to us before the accident) She was looking right at Jon and he felt she was interacting with him. This is precious to us when she has such a response. She has had some more "storming" where her blood pressure goes up and she shakes but she has been able to calm herself without using additional meds.
So please pray that Selah gets moved to the right hospital and that it is one that we are happy with. We need her to have a good placement while we finish our training and get our home ready for her. We could not just take her straight home. Our home is not set up for her. We had hoped for LRMC from the beginning because of the location and the fact we know and trust the nursing staff and doctors there. Sam used to be a "frequent flyer" there and honestly we preferred it to any of the other hospitals around. For s smaller hospital it has a good Peds ER and floor. It's very clean and secure, probably the best security of any hospital we've ever had a child at and that means alot to me. We are disappointed to say the least, as we'd been led to believe they would take her....We are hoping this is not some type of "Obama care" type of decision......
There's so many different aspects to an accident like this....I'm thankful that through it all we still have God to depend on
FYI, for anyone who still thinks I'm a super christian should speak to the administer I talked with today...LOLOL Got a feeling she would not think I'm a pastor's wife LOL (and no I didn't cuss her out, I did restrain myself to some degree but I was not too nice) When it comes to my children, get out of my way!
Selah did something new today. Both Sarah and I have quite a cold so I've not gone over since Sunday. But Jon had her in her chair as he walked across the room and saw her open her mouth as if to respond to him. He immediately got on the ground close to her and started talking to her. She moved her mouth as if to speak ( she babbled back and to, to us before the accident) She was looking right at Jon and he felt she was interacting with him. This is precious to us when she has such a response. She has had some more "storming" where her blood pressure goes up and she shakes but she has been able to calm herself without using additional meds.
So please pray that Selah gets moved to the right hospital and that it is one that we are happy with. We need her to have a good placement while we finish our training and get our home ready for her. We could not just take her straight home. Our home is not set up for her. We had hoped for LRMC from the beginning because of the location and the fact we know and trust the nursing staff and doctors there. Sam used to be a "frequent flyer" there and honestly we preferred it to any of the other hospitals around. For s smaller hospital it has a good Peds ER and floor. It's very clean and secure, probably the best security of any hospital we've ever had a child at and that means alot to me. We are disappointed to say the least, as we'd been led to believe they would take her....We are hoping this is not some type of "Obama care" type of decision......
There's so many different aspects to an accident like this....I'm thankful that through it all we still have God to depend on
FYI, for anyone who still thinks I'm a super christian should speak to the administer I talked with today...LOLOL Got a feeling she would not think I'm a pastor's wife LOL (and no I didn't cuss her out, I did restrain myself to some degree but I was not too nice) When it comes to my children, get out of my way!
Monday, October 8, 2012
Does the Cinderella Story end here?
If you read my previous post and clicked on the newspaper article/video you will understand this post.
Looking at Selah's life story prior to August 15th, it seemed to have been a Cinderella story. A little girl hidden away in an Easter European adult mental institution, a family who was miraculously came and rescued her....a beautiful story....then a horrible accident....Is this is?
According to all medical & scientific knowledge, this is IT. Selah is at a place where she can't be helped. She can be physically cared for but nothing will change. Contrary to most people's opinions doctors do not enjoy giving families bad news. I believe our doctors would be thrilled to be able to give us hope but they have no medical hope to give us.
But that is not where our hope lies..... THIS is where our hope lies....
But I ask God for Selah to be healed. Maybe that is an oxymoron to you but I have a relationship with God where I can pour my heart out to Him. My heart's desire is to have a wonderful Cinderella story and have Selah restored completely to us, But at the same time, I can also trust God in the outcome. I've not always been at this place in life, believe me! But I've learned to rest in Him.
But this one thing I do know...ONE day Selah will be healed and whole. Oh how I want it to be today....BUT there will be a day! On that day all our stories will have that fairytale ending. My hope of heaven/eternity is not some "pie in the sky" hope. Based on scripture, I know that heaven is real. I don't need a near death experience to tell me so. Taking the bible in context, it is clear that there will be a restoration of all things. We live in a fallen world right now. One day that will change.
So I cling to that eternal HOPE for Selah and for all of us. There are some things that I feel God has dropped into my heart, that I keep close & ponder, not quite sure what it all may mean but I know that I'm going to trust God.
Through this walk since we started the adoption, it has been all God. He has been our provider in so many ways. It's been a sweet walk....even now there is a sweet presence of God. I've never gone through something and felt the presence of God like I have during this time. Often we can look back and the memories of a trial is wrapped in God's presence that you sense looking back on the situation, But maybe during the trial, you may have not felt the daily presence of God, that has been my experience more than once before....but not this time. We've been wrapped in God's presence since the first moments....
When you have nothing BUT GOD, you find God is more than enough.....that is ALL we have right now but it is enough! Sometimes I have hated all the little Christan cliches' but this is true.
So one day this story will have a happy ending...I don't know if it will be in 5 days, 5 weeks, 5 months or 50 years...but it is coming.....In the meanwhile please please pray for our Selah!!!!
Looking at Selah's life story prior to August 15th, it seemed to have been a Cinderella story. A little girl hidden away in an Easter European adult mental institution, a family who was miraculously came and rescued her....a beautiful story....then a horrible accident....Is this is?
According to all medical & scientific knowledge, this is IT. Selah is at a place where she can't be helped. She can be physically cared for but nothing will change. Contrary to most people's opinions doctors do not enjoy giving families bad news. I believe our doctors would be thrilled to be able to give us hope but they have no medical hope to give us.
But that is not where our hope lies..... THIS is where our hope lies....
My hope is built on nothing less
Than Jesus’ blood and righteousness;
I dare not trust the sweetest frame,
But wholly lean on Jesus’ name.
When darkness veils His lovely face,
I rest on His unchanging grace;
In every high and stormy gale,
My anchor holds within the veil.
His oath, His covenant, His blood
Support me in the whelming flood;
When all around my soul gives way,
He then is all my hope and stay
When He shall come with trumpet sound,
Oh, may I then in Him be found;
Dressed in His righteousness alone,
Faultless to stand before the throne.
Do I know how this story will end on this earth? No, I do not know for sure. God may heal her or He may not. Many people think they are encouraging me by claiming that she will be healed. It doesn't really encourage me. I don't claim to know the future. I wish I knew that God was going to heal her but I don't have that complete assurance. IF God spoke to my heart, I would have no problem believing that & stating it but He hasn't told me. He has told me not to be afraid of what my family was going to go through....I believe that was a real word from the Lord. If we look at life, we see most people do not get healings...that is why the word Miracle does not mean an everyday occurrence,,,, I've thought and studied alot about healing over the past almost decade of having a disabled son. Today I'm not going to get all deep and theological (although that post is coming) but I will say I believe God can heal, however I believe most of the time, we have to walk through a journey on this earth that includes suffering. Unfortunately in this world, people are not taught good theology and pastors/preachers would rather preach an unrealistic gospel, it tends to fill churches and give people something to shout about. Then when a person is faced with the reality of life, they feel cheated by God. Many turn away from God in anger that He was not their "sugar daddy". Others live in guilt as if they were not good enough Christians to get their prayers answered. Others live in unrepentant sin while they "claim the promises of God" Many preachers promise things that God nor the bible ever promised. It sounds so wonderful....a heaven on earth. But if that were the case, would our hearts ever long for heaven?Refrain:
On Christ, the solid Rock, I stand;
All other ground is sinking sand,
All other ground is sinking sand.
But I ask God for Selah to be healed. Maybe that is an oxymoron to you but I have a relationship with God where I can pour my heart out to Him. My heart's desire is to have a wonderful Cinderella story and have Selah restored completely to us, But at the same time, I can also trust God in the outcome. I've not always been at this place in life, believe me! But I've learned to rest in Him.
But this one thing I do know...ONE day Selah will be healed and whole. Oh how I want it to be today....BUT there will be a day! On that day all our stories will have that fairytale ending. My hope of heaven/eternity is not some "pie in the sky" hope. Based on scripture, I know that heaven is real. I don't need a near death experience to tell me so. Taking the bible in context, it is clear that there will be a restoration of all things. We live in a fallen world right now. One day that will change.
So I cling to that eternal HOPE for Selah and for all of us. There are some things that I feel God has dropped into my heart, that I keep close & ponder, not quite sure what it all may mean but I know that I'm going to trust God.
Through this walk since we started the adoption, it has been all God. He has been our provider in so many ways. It's been a sweet walk....even now there is a sweet presence of God. I've never gone through something and felt the presence of God like I have during this time. Often we can look back and the memories of a trial is wrapped in God's presence that you sense looking back on the situation, But maybe during the trial, you may have not felt the daily presence of God, that has been my experience more than once before....but not this time. We've been wrapped in God's presence since the first moments....
When you have nothing BUT GOD, you find God is more than enough.....that is ALL we have right now but it is enough! Sometimes I have hated all the little Christan cliches' but this is true.
So one day this story will have a happy ending...I don't know if it will be in 5 days, 5 weeks, 5 months or 50 years...but it is coming.....In the meanwhile please please pray for our Selah!!!!
Rochester News articles
http://www.democratandchronicle.com/article/20121008/NEWS0217/310080012?fb_action_ids=4602034618492&fb_action_types=og.recommends&fb_ref=artsharetop&fb_source=aggregation&fb_aggregation_id=288381481237582
http://www.democratandchronicle.com/
the top one is the article and the bottom one is a video
This is a bittersweet article, it will tell you in great detail how the medical world views Selah's prognosis....it is not good. We don't know what the future holds and we understand perfectly what our doctor has said, he has been quite honest with us. But nevertheless, our trust is in God. That is the bottom line. She may never recover from where she is this very minute BUT our hope is in God..... The article did not upset us in the least, we've been told this over and over....but you can understand now what we are dealing with....
The video captures Jon singing Sam's fav song "When the Roll is called up Yonder" Very sweet....
http://www.democratandchronicle.com/
the top one is the article and the bottom one is a video
This is a bittersweet article, it will tell you in great detail how the medical world views Selah's prognosis....it is not good. We don't know what the future holds and we understand perfectly what our doctor has said, he has been quite honest with us. But nevertheless, our trust is in God. That is the bottom line. She may never recover from where she is this very minute BUT our hope is in God..... The article did not upset us in the least, we've been told this over and over....but you can understand now what we are dealing with....
The video captures Jon singing Sam's fav song "When the Roll is called up Yonder" Very sweet....
Sunday, October 7, 2012
Precious Day......
All of us together again....
(Steve is the tall one in red, Shad is the one in black, Sam is the short one in red, Selah, Jon, me and Sarah)
The FIVE greatest kids in the world!!!
Today after church we took the kids to see Selah. Since she had tested positive for MRSA we had only let the kids go to her door and look in but since the MRSA does not seem to be active, we allowed them to go in. I was not prepared for how emotional it would be.... Shad just broke down and laid his head on Selah's pillow and wept. Steve cried and cried also, he was just heartbroken. Watching the boys was literally heartbreaking. But at the same time, it drew us all together. I was so proud of their love for their sister. My heart was breaking yet full of love at the same time. We all prayed together as a family. We were able to talk about the future and reaffirmed our family ties & commitment to walk together, whatever the future holds.
Shad wanted to go and get his birthday money and buy her a present. He bought her a dog and took it back to her. I love my kids!!!!
Tonight we met some new families...two families both with daughters with Down's have been following our story and praying for Selah! What a blessing! One little girl will have surgery tomorrow, pray that it will go well. The older girl, 13 years old she proudly told me, has a rare disorder and is being treated for it. Pray that she will respond to the treatment!
Also a friend of mine who was so supportive of our adoption was diagnosed with a brain tumor and has already had surgery. Her name is Angie. She invited me to speak at her church last year and the church gave a big offering to our adoption. She was even there to welcome us home at the airport, she has two adopted daughters and some older children. Angie has worked tirelessly advocating for orphans and adoption. She has worked with the homeless and they are deeply involved in their church. I'm saying she has been faithful to God and to the things that are close to God's heart. Pray that God will touch and heal her completely!
Many needs....please also continue to pray for Selah!
Saturday, October 6, 2012
Pray for Atticus
Please pray for Atticus. His family flew over with us and adopted him at the same time we adopted our girls. They also adopted another little girl at the same time. They've adopted before and were in the process of adopting two more kids. What a sweet family. Today he was unexpectedly diagnosed with leukemia...I am just heart sick for this family and for little Atticus. They are started a long road today....please pray for all of them!
Selah had a rough morning, she seemed upset while in her seat. She started shaking and I put her back to bed. She fell asleep and just had sleepy day. Once she was in bed, she did better.
It is COLD up here today, will be in the 30's tonight.....we keep hoping for snow:)
Thank you for your prayers today.
Friday, October 5, 2012
Zoo Day
at the Rochester Zoo
Steve and his friend
Jon and me at a Ukrainian church...brought back memories.....
Today we did an interview for the Rochester newspaper. As part of the interview we walked down to where the accident happened...I saw the tree that saved my children's lives...it was just a scrawny little weeping willow, with a small branch hanging over the canal, Before I had thought is was a larger tree that was further down the canal. I saw what a miracle it was that Jon was able to grab it, hold on and keep the children's head above water! I was afraid that walking back there would upset me but it really made me feel grateful for their lives being saved!!!! The thought just washed over me how God had prepared that tree many years ago to grow....it's an insignificant tree but to us, it was a life saver and a huge part of the story of their rescue! Wish I'd had my camera with me!
We took the kids to a small zoo here for a couple of hours today and had a nice time walking around and looking at the animals. They had what we call "swamp birds" Cranes...that made me laugh! The animal we liked seeing the most was the chipmunks they have here. We don't have chipmunks in Florida so we kept trying to get a decent picture of them:) We saw an Ukrainian church from the highway and had to find it to go by it. We had hoped it would be open but it wasn't. Reminded us of the beautiful churches we saw in Ukraine,
Today Selah's nurse was very positive as she feels she sees some changes in her, that she is more alert. That makes us feel good when others can see changes too! Her music therapist also seemed to think she was more alert also and told Jon. We love hearing anything positive! Tonight Jon took my shift over at the hospital and I'm on duty at the RMH:) But I miss seeing Selah! It's hard to juggle our time here to do some things together as a family. And there is always one who is missing.... the first few times were just gut wrenching...and it still hurts to see that empty spot at the table... Looking forward to the time Selah will be able to be with us all the time. I dont' know how we will do everything but we will figure out our new "normal"
Please keep praying for Selah!!!!!!
Thursday, October 4, 2012
Stable just waiting on transfer date
Selah remains stable. She seemed alert today. Her nurse felt that Selah was more alert than the last time she had her. We love to hear things like that from the staff. We are waiting on all the arrangements to be made for her transfer. Please pray that everything falls into place for her.
We all are doing ok. The kids actually love being at the Ronald McD House. They will miss being here when we get home. The staff/volunteers and other families are just so great to be around. There are several families who are "long timers" like us (although I think we at almost 8 weeks are the longest residents at this point) We all talk and keep up with each other's journey. What a blessing Rochester Ronald McDonald House has to been to us and so many others.... We've always loved it here but now I know there will be tears when we leave after this journey! We've been loved & supported so much...what a blessing! Steve & Shad are totally spoiled here! Sarah and Sam seem totally happy too. Sam has continued to grow up. He loves riding the elevator and tries to walk to it every time he can! Sarah is so close to walking, she has grown up so much too. The other day I figured out that of all the time we've had her and Selah, they've been up here 1/3 of their time with us. Despite the fact that Sarah was just getting used to us and home, she has had no issue at all being here. It's like she is just like me, as long as my family is with me, I am Home! People ask me if I'm homesick for Florida...and to be honest I'm not since I have my husband and children with me. Of course I love our friends and family in Florida....(don't worry!) but I've just learned to be "home" wherever I am as long as I have "my tribe" with me!!!!
So we are just waiting for the next step, the future is so unknown but we know Who holds the future. Several times today I have had to remind myself not to be afraid....God is with us. We've been in a "bubble" here and we are used to the hospital and how things are done and now everything will be changing...UGH I HATE change! I'm a snob when it comes to health care....Rochester Strong's is really top of the line....I will probably be comparing everything from now on to Strong's .... and I don't want to leave that security!
Thank you all for your prayers for Selah and our family! We so appreciate it!
We all are doing ok. The kids actually love being at the Ronald McD House. They will miss being here when we get home. The staff/volunteers and other families are just so great to be around. There are several families who are "long timers" like us (although I think we at almost 8 weeks are the longest residents at this point) We all talk and keep up with each other's journey. What a blessing Rochester Ronald McDonald House has to been to us and so many others.... We've always loved it here but now I know there will be tears when we leave after this journey! We've been loved & supported so much...what a blessing! Steve & Shad are totally spoiled here! Sarah and Sam seem totally happy too. Sam has continued to grow up. He loves riding the elevator and tries to walk to it every time he can! Sarah is so close to walking, she has grown up so much too. The other day I figured out that of all the time we've had her and Selah, they've been up here 1/3 of their time with us. Despite the fact that Sarah was just getting used to us and home, she has had no issue at all being here. It's like she is just like me, as long as my family is with me, I am Home! People ask me if I'm homesick for Florida...and to be honest I'm not since I have my husband and children with me. Of course I love our friends and family in Florida....(don't worry!) but I've just learned to be "home" wherever I am as long as I have "my tribe" with me!!!!
So we are just waiting for the next step, the future is so unknown but we know Who holds the future. Several times today I have had to remind myself not to be afraid....God is with us. We've been in a "bubble" here and we are used to the hospital and how things are done and now everything will be changing...UGH I HATE change! I'm a snob when it comes to health care....Rochester Strong's is really top of the line....I will probably be comparing everything from now on to Strong's .... and I don't want to leave that security!
Thank you all for your prayers for Selah and our family! We so appreciate it!
Wednesday, October 3, 2012
LONG emotional day......Plans....
We started this day with hope!
First Jon called me to tell me that Selah was again expressing displeasure quite clearly in being set up in a chair, Third day in a row!!!!
Then I had an 11 am conference call with Neumour's Hospital in Orlando. To put it mildly it was a FLOP! They only wanted to offer us some type of nursing home facilities in the Orlando area. We were not looking for that nor are we interested in that at this point. I felt the doctor tried to intimidate me by telling me that our insurances would not pay for her to be transferred to a hospital with the same amount of care that she had been given. The idea being she should stay at the first hospital until she was ready to go home or to a nursing home... Well I thought that was wrong and thankfully after talking to staff here, it is wrong! So let's just say I burnt a bridge LOL I have no desire to deal with them again after that call. What a waste of every one's time, especially mine to try and push on us something we do not want. Makes me really wonder ......
So at the same time that was going on, I was also calling St Mary's Rehab here in Rochester. We arranged for a doctor to come in and examine her. We had hoped for her to get some specialized care at St Mary's. But they refused her case,said that insurance woulnd't pay since there was no goals that could be reached. Basically she is considered too non responsive.... We asked alot of questions and got some hard truthful medical answers. Both fs us were able to hold it together until the doctor left the room.... To be honest, despite the advances she has made, there is no medical hope for her to recover.
So our plan is to go to Lakeland Regional, they have accepted her and arranged for therapy for her. We do know the staff and think highly of their pediatric floor. We used to be frequent flyer's with Sam there for many years. It looks like she will be transferred early next week. We will drive down and she will be flown. Our sister in law will be there for her and take care of her until we get there. Thank God for family, that you can depend on!!! It will take us a couple of days to drive, we have to do eye drops and diaper changes...and that slows us down.
So it's been a long emotional day for us. I feel "wrung out" On top of it, our debit/credit card was compromised by a hacker, through some store up here and our card got cancelled! Just to top off the day....
So although we have been given no earthly hope, despite what we see as recent gains. our hope is still in the Lord who made heaven & earth. That has not changed despite the tears this day has brought. When the doctor walked out of the room, we just broke and sat with tears running down our faces, the weight of the world on us but gradually PEACE came through the darkness. I can not explain it to you, it defies words...even now typing this with tears, I have the peace of God. This is not the end... Although we are heart broken to leave Rochester like this, to know our daughter is being flown to another hospital and there is an empty car seat in our van, we can still trust God. When I think about how it is going to be, my throat clutches up so hard I can't hardly breath but God will be with us.
If God never did another miracle or anything else for us, to have this peace is worth more than anything else in this world. When I hear of tragedies, I often think "how does that person live?" If you are wondering that as you read my blog, just know the only way I can live is the Grace of God. It is very real to me, never once in these past 7 weeks have I been alone... From the moment I saw the ambulances, police and fire trucks down the road and took off running towards them, God has been with me. Those first few awful moments will never go away from my memory, my prayer was "God Help, God Help" I just prayed that over & over again and He did help.... He is our very present Help in times of need. I have found that to be oh so true.
All I can tell you is this is real, I think I'm in shock over the peace of God but it is a real peace that does pass all understanding.... doesn't sound too spiritual to say that I'm in shock from the peace of God but I am. He is a good God.
So please continue to pray for Selah, pray that we will see more and more responses...pray that all the right plans come into place. We want her to be in the right place.
So we are ending this day with hope also...our hope is in God!
First Jon called me to tell me that Selah was again expressing displeasure quite clearly in being set up in a chair, Third day in a row!!!!
Then I had an 11 am conference call with Neumour's Hospital in Orlando. To put it mildly it was a FLOP! They only wanted to offer us some type of nursing home facilities in the Orlando area. We were not looking for that nor are we interested in that at this point. I felt the doctor tried to intimidate me by telling me that our insurances would not pay for her to be transferred to a hospital with the same amount of care that she had been given. The idea being she should stay at the first hospital until she was ready to go home or to a nursing home... Well I thought that was wrong and thankfully after talking to staff here, it is wrong! So let's just say I burnt a bridge LOL I have no desire to deal with them again after that call. What a waste of every one's time, especially mine to try and push on us something we do not want. Makes me really wonder ......
So at the same time that was going on, I was also calling St Mary's Rehab here in Rochester. We arranged for a doctor to come in and examine her. We had hoped for her to get some specialized care at St Mary's. But they refused her case,said that insurance woulnd't pay since there was no goals that could be reached. Basically she is considered too non responsive.... We asked alot of questions and got some hard truthful medical answers. Both fs us were able to hold it together until the doctor left the room.... To be honest, despite the advances she has made, there is no medical hope for her to recover.
So our plan is to go to Lakeland Regional, they have accepted her and arranged for therapy for her. We do know the staff and think highly of their pediatric floor. We used to be frequent flyer's with Sam there for many years. It looks like she will be transferred early next week. We will drive down and she will be flown. Our sister in law will be there for her and take care of her until we get there. Thank God for family, that you can depend on!!! It will take us a couple of days to drive, we have to do eye drops and diaper changes...and that slows us down.
So it's been a long emotional day for us. I feel "wrung out" On top of it, our debit/credit card was compromised by a hacker, through some store up here and our card got cancelled! Just to top off the day....
So although we have been given no earthly hope, despite what we see as recent gains. our hope is still in the Lord who made heaven & earth. That has not changed despite the tears this day has brought. When the doctor walked out of the room, we just broke and sat with tears running down our faces, the weight of the world on us but gradually PEACE came through the darkness. I can not explain it to you, it defies words...even now typing this with tears, I have the peace of God. This is not the end... Although we are heart broken to leave Rochester like this, to know our daughter is being flown to another hospital and there is an empty car seat in our van, we can still trust God. When I think about how it is going to be, my throat clutches up so hard I can't hardly breath but God will be with us.
If God never did another miracle or anything else for us, to have this peace is worth more than anything else in this world. When I hear of tragedies, I often think "how does that person live?" If you are wondering that as you read my blog, just know the only way I can live is the Grace of God. It is very real to me, never once in these past 7 weeks have I been alone... From the moment I saw the ambulances, police and fire trucks down the road and took off running towards them, God has been with me. Those first few awful moments will never go away from my memory, my prayer was "God Help, God Help" I just prayed that over & over again and He did help.... He is our very present Help in times of need. I have found that to be oh so true.
All I can tell you is this is real, I think I'm in shock over the peace of God but it is a real peace that does pass all understanding.... doesn't sound too spiritual to say that I'm in shock from the peace of God but I am. He is a good God.
So please continue to pray for Selah, pray that we will see more and more responses...pray that all the right plans come into place. We want her to be in the right place.
So we are ending this day with hope also...our hope is in God!
Tuesday, October 2, 2012
My faith is in God..
This is a picture of Selah I took today. She was sitting in her chair following me working with her with PT. She did great today and responded when she didn't like something I did. The attending doctor was there for some of it and she said Selah was showing real emotions! While we hate for her to be unhappy, she definitely let us know she didn't like working out!!! And that is great that she could show us that. As you can see she was worn out by the workout!
So we have had two great days! Selah still has a long way to go, please know that but we are seeing some positive things happening!!! Please keep praying that she will continue to improve and that this is just the beginning of a recovery for her. Doctors still don't give us any promises of improvement but they do acknowledge this as a good sign! This has been consistent and that is important but there are many areas we need to see improvement in. What worries me is the there are somethings that are very basic that she does not always do....please pray that all areas will improve!
Our trust is in God, not what God can do for us but in God! If she doesn't improve beyond this point, God is still good. We will still trust Him. If she is 100% healed, God is still good. I was talking to someone recently and trying to explain to them our faith is in God. We are trusting God NOT trusting God to heal her....do you understand what I am saying? We are not trusting in the promises of God... Our trust is in God NOT what He can do for us. What a peace we have, we are not striving or trying to "work" out her healing in our strength...we are not healers....no man is....but we trust the Healer. Oh I ask Him many times a day to touch and heal Selah but I also thank Him for being with us and for all He has done and just for who He is.
I do remind God of the parable in Luke 18 1-8
18 Then Jesus told his disciples a parable to show them that they should always pray and not give up. 2 He said: “In a certain town there was a judge who neither feared God nor cared what people thought. 3 And there was a widow in that town who kept coming to him with the plea, ‘Grant me justice against my adversary.’
4 “For some time he refused. But finally he said to himself, ‘Even though I don’t fear God or care what people think, 5 yet because this widow keeps bothering me, I will see that she gets justice, so that she won’t eventually come and attack me!’”
6 And the Lord said, “Listen to what the unjust judge says. 7 And will not God bring about justice for his chosen ones, who cry out to him day and night? Will he keep putting them off? 8 I tell you, he will see that they get justice, and quickly. However, when the Son of Man comes, will he find faith on the earth?”
I love this parable....I can relate to this woman! I cry out to God day and night to have mercy on my daughter. I dont' pretend to have some great knowledge that God is going to heal her. I don't claim it....but I put my hope and faith in God and I will not be disappointed. I will not be disappointed either way....because I know there is coming a day in the very near future when all my children will be healed...my hope is an eternal hope, not a temporal hope based upon what happens on earth!
What amazes me is the Christians who don't understand this hope...they are so focused on the here and now, thinking that God promised them a rose garden....it's sad. Of course I want my daughter restored but I can trust God whatever the outcome is....He is the author and finisher of my faith. I can say this past year, has been a year like no other in my life. I have seen the greatest joy and the greatest sorrow all within the last few months. I have seen God move in unbelievable ways...and all I can say is my faith is in God, the creator of heaven and earth. He is the One who has lead me thus far and will continue to lead....
On the way home from Ukraine, we flew over Poland and the beautiful Polish Mountain region, there was so many emotions going on in my heart. I just remember my very soul realizing that the same God who had created the mountain and land we were flying over, the land that had so much of man's history on it, was the same God who worked out every detail and provided everything we needed for our adoption. It just shook me to my core. You know how you have those moments when "eternity" is in your heart and for just that second, you can grasp the depth of God , for just a second in time....that was one of those moments for me. So I have been to the mountaintop this year.....and I have been in the very valley of the shadow of death...but I will not fear...
What can I say about God....He is real! Going through this valley makes me look up....I look to Him. And it is so sweet....there are not words to describe the "knowing' I have in my heart. I wish I had the words to adequately explain to you what is in my heart. All I can say is I am so very thankful for the Peace that passeth all understanding, the peace that is there when my heart breaks, the peace that only God can give.
You might ask how I got this peace...PLEASE know I am NOT some major perfect Christian. far from it...let's just say my husband calls me Peter sometimes.....and if you don't get it, go read your bible. Peter was a hot head, he cursed. he was a mess at times....but God used him. I've gone through valleys in my life...but there came a time when I decided I was just going to trust God NO MATTER WHAT happened...and when I did that, all heaven broke loose in my life. No I didn't start running the aisles or shouting but I had something that carried me through things that not many people had walked through....I grasped God and I grasped eternity and realized that no matter what happens in life we have that Blessed Hope.... When I grasped that truth deep in my heart, I was able to face uncertain times with the assurance God would see us through. And He has!!!! God has been nothing but faithful to us! That is why I can praise Him in the hardest time of my life.
I encourage you to reach out to God. Get to know the real God. Don't listen to some preacher that is going to tell you life is just going to be perfect for you. Read the bible, study it with a commentary,. too many preachers today on tv and in pulpits want you to think you can command your destiny, that you can even command God....I dont' want to serve a God I can tell what to do to!!!! I want a God that is like the One in the bible, who is above all things...not some weak God who does my bidding....I serve a God who is the God to the hurting. A God that came down to earth and was "a man acquainted with sorrows" One who holds the earth in His hands....but one who listens to a mother's cry.....
I've included an old song in the link below. It was sung alot when I was a child. I remember it being sung with much more fervor:) But I love the words.....
"I'm trusting to the Unseen Hand that guides me thru this weary land.
And some sweet day I'll reach that strand
Still guided by the Unseen Hand'
http://www.youtube.com/watch?v=Pt0jokat9SY&feature=fvwrel
That Unseen Hand has guided me without fail for many years and I trust Him to continue to do so!
The conversations between the new hospital Nemour's and here are continuing and we are really excited about all we have read about them. It seems this might just be the right place for her. We should have an answer in a few days.
So please keep praying for Selah, all over the US and all over the world. Lift her name up to the throne of Grace, for us. Thank you so much!!!
Monday, October 1, 2012
Great News!!!!!!
This morning during PT, Selah grimaced, opened her mouth as if to say no (she can't really speak above the trach right now) and cried! This is HUGE! Of course we hate that she was upset BUT it showed that she can show emotions which are a response "above the brain stem" We are so excited and hopeful!!!
On top of this great great news, we were contacted by a staff person through a friend. A new hospital is opening in Orlando, Nemour's Children's Hospital. They have the same team approach as Strong's does. Sam had seen the geneticist there and she gave us his correct diagnosis after us wasting our time with another one for years! We had an appointment for both girls to be seen last month that we unfortunately had to cancel. We did not know another hospital was being built. we just thought it was a doctor's group associated with other groups. The conversations back and to between hospitals have started and we should have an answer by Wednesday if they will accept her. If they do, she will be their first patient. They are known for their research and their academic team approach. We are thrilled and think maybe this is the reason we never got a response from Lakeland. It will be harder for us as a family as Nemour's is the farthest of the hospitals in our area that we have considered but this might be the absolute best place for her. That is what matters the most at this point.
So our prayer today is that God will touch our baby and help her have more real responses!!!! And that He will open the right door for us in Florida. I had been praying that if there was somewheres else we should take her that it would be made clear to us. We are so thankful for his guiding hand through this dark valley.
This is a real roller coaster ride for us, some days are just wonderful and some are not...today is a GREAT day and we have renewed hope for Selah! I can't wait to go over there later, as we take turns staying with her. I hope she will give me some responses!! Thankyou for your prayers!!!!!!!
On top of this great great news, we were contacted by a staff person through a friend. A new hospital is opening in Orlando, Nemour's Children's Hospital. They have the same team approach as Strong's does. Sam had seen the geneticist there and she gave us his correct diagnosis after us wasting our time with another one for years! We had an appointment for both girls to be seen last month that we unfortunately had to cancel. We did not know another hospital was being built. we just thought it was a doctor's group associated with other groups. The conversations back and to between hospitals have started and we should have an answer by Wednesday if they will accept her. If they do, she will be their first patient. They are known for their research and their academic team approach. We are thrilled and think maybe this is the reason we never got a response from Lakeland. It will be harder for us as a family as Nemour's is the farthest of the hospitals in our area that we have considered but this might be the absolute best place for her. That is what matters the most at this point.
So our prayer today is that God will touch our baby and help her have more real responses!!!! And that He will open the right door for us in Florida. I had been praying that if there was somewheres else we should take her that it would be made clear to us. We are so thankful for his guiding hand through this dark valley.
This is a real roller coaster ride for us, some days are just wonderful and some are not...today is a GREAT day and we have renewed hope for Selah! I can't wait to go over there later, as we take turns staying with her. I hope she will give me some responses!! Thankyou for your prayers!!!!!!!
Sunday, September 30, 2012
Letchworth State Park
we have a picture taken at this same spot 5 yrs ago...the boys are so much bigger
Today we went to Letchworth State Park south of Rochester, we've been here over the years and it was very nice to go hike the trails. Today was a gloomy, almost raining cool day, I love weather like that! Sam did great and walked all over and climbed most of the many stairs around the falls. Wish I could download more pictures but my blog just won't work with me!
Selah is still doing fine, she's relaxed, the meds are working. She is now the most stable that she has ever been since the accident. We are thankful for that but we still are asking for prayers for her!
I have some blogs that have been rolling around in my brain...I'm too tired tonight to even think straight! Today was a good time to think and walk around in God's creation, really makes you realize how small you are... And to see the beautiful creation...just makes you think how beautiful heaven will be!! We love State Parks and National Parks, we go to all that we can when we travel. We've been to Letchworth several times and just think it's great! It's such a beautiful place!
Saturday, September 29, 2012
Saturday Night update
Today has been a good day for Selah. The meds are working to relax her and she is not storming at all, that means no vibrating/shaking. Her limbs are much less stiffer. Her sweet doctor was happy that she responded as well as she has but he warned us that normally folks with this type of brain injury will eventually get to the point that the meds may stop working and she will stiffen and start storming again. We are thankful for today! She seemed a little responsive to me tonight and that always makes me happy.
We got the van serviced today so we are ready to start on our way home when we get the word...don't have any idea when but we still think it will be next week...we are waiting for the response from Lakeland Regional. There seems to be some concerns about them taking her. We hope they will because it would be so much easier for us if she can go there!
As always please keep praying for Selah! More than anything we want our sweet girl back to us!
We got the van serviced today so we are ready to start on our way home when we get the word...don't have any idea when but we still think it will be next week...we are waiting for the response from Lakeland Regional. There seems to be some concerns about them taking her. We hope they will because it would be so much easier for us if she can go there!
As always please keep praying for Selah! More than anything we want our sweet girl back to us!
Quick update Friday night
Selah is the same, stable... Her blood pressures are still a bit high but good for her compare to what she has had. She seems to be more relaxed & calmer so the new meds are helping her to relax. Jon worked with her today on range of motion, we'd not be able to do much lately because she was so stiff. We actually were afraid we'd break a bone or hurt her in some way. PLEASE keep praying for her!
We think she will be transferred next week but we don't have a date yet.
This morning Steve & Shad worked with the RMH staff and volunteers to put in a garden for Make A Wish at the RMH. they put in bulbs that will come up in the spring. The boys are so used to working hard on the church yard, our yard and the garden that they were shocked when they were done in 30 minutes:)
We think she will be transferred next week but we don't have a date yet.
This morning Steve & Shad worked with the RMH staff and volunteers to put in a garden for Make A Wish at the RMH. they put in bulbs that will come up in the spring. The boys are so used to working hard on the church yard, our yard and the garden that they were shocked when they were done in 30 minutes:)
Go Steve
Steve & Shad
A Ground Hog!!!!!
we see them all the time and just "ooh & awww" over them. Guess it's like a northren seeing a gator...or maybe not LOL
View from the back of the RMH
we came in the summer and it is most definitely Fall now!! It's been in the 40's at night and today was cold and rainy. We kept asking if it was going to snow and everyone laughed:)
Friday, September 28, 2012
Parenting style
"Think long and hard about the way you invest your children's time. Time is treasure. And where your time investment is, there you will find the heart of a child. Invest the majority of his time in entertainment, and his heart will be turned to love of pleasure. Invest his time in peers rather then family, and his heart will be with the peers more than his family. There is a time and place for all good things in balance, but wise parents will steward the treasure of time, and in so doing, shepherd their children's hearts." Doug Phillips
A friend of mine put this on her FB Wall and I thought this perfectly described Jon & my parenting ideas....
When we first started out as parents, with just one child ( I can barely remember those days lol) I stayed home with Steve for almost 2 years and we just took hm everywhere with us. He was an easy kid plus I didn't want to owe any favors to have to return babysitting HAHAHAHA! Remember I've never been much of a kid person unless they are MY kids! Then when I went back to work and he started preschool, we worked our schedules around him as best we could. I'd try to get to work as early as possible & lots of time not take a lunch so I could pick him up early. Jon would go in at 12 and work till 8pm so he didn't have to take Steve until late morning. So we worked things out so he spent the most time with us and the less time in preschool. I think because we felt our time was limited with him, we spent as much time as possible with him.
We never got into Boys Scouts, or even our church's scouting program too much. We didn't do team sports things with him, he was more like us, he didn't like team sports so we didn't push it. We really focused on the three of us. Then after Sam was born, we were even more of a unit, we had to travel alot for Sam to go to different doctors and we just always took Steve with us. Even tho things were crazy for us, we invested the life we had into them.
As our family grew, we began to understand more of what we had been doing somewhat unconsciously. We then, began to consciously make sure that our family time came first, not just in our lives as parents, but also in the lives of our kids. Which meant, we purposely chose how we spent our time and we guarded it.
When a child is always involved in other things like sports, clubs, friends, whatever, their hearts can become so focused on that, to the exclusion of the most important thing which is the child's family. Up until the last 50 years or so, the family unit was honored, kids stayed close to home, they didn't have the distractions that families have today. We've sought to create that type of family Unfortunately even the church is somewhat guilty of splitting the family up, with babies going in one direction, kids in another, teens in another, woman in another, men in another....that makes me uncomfortable . We worship together as a family, that happened somewhat accidentally as I wrote in another blog. Our children's pastor went off to be a missionary to Spain & then no one else ever worked out. We began seeing the benefit of our children sitting in church and decided that was probably the best way for our family. It's worked for all of church history until the last few years when the church world decided to start splitting up the family into various age groups.
We took Sam and Steve us to Ukraine with us and my biggest regret is we didn't take Shad. He has a scholarship through Step Up For Students for our private school and we were afraid we'd be gone too long and he'd lose it, as he can only miss so many days. Now he may have lost it for this year, we hope not but we will have to wait until we get home to see what can be worked out. We could have sent Steve and Shad home when all this happened but we've learned that it is important for families to share memories, even harder memories, in order to bond. We've always traveled "as a tribe" (except for Shad staying home when we went to Ukraine) It's harder sometimes to do things, especially the more kids you have, but honestly it is worth it to invest your time in your kids. They may see the good, bad & ugly but it's reality and it's what prepares your child for life!
So our focus has always been spending time together, making memories together, even in the mundane things and the big things. We treasure our time together and think it has helped to center our older boys. We all do a few things individually, on an occasional basis but the focus stays on the family time.
We even purpose to spend time together when we are home. We make a point to eat supper together every night NO tv! We also usually watch a tv show or dvd together at night. Even while we are here, we are doing that. We bought some DVDs, a few Madea's and "In the Heat of the Night" series, so we have something to watch at night.
One thing I do regret is EVER buying any video game systems!!!! IF we were doing things over, we'd probably never would have bought any!! So if you have little kids, I'd advise you to think long and hard about it! I think it sucks the brains out of kids! After much working/talking we got it down to only ONE game system, an Xbox 360. So we don't do Gameboys or anything like that. If we go out, I want the kids to learn to sit & talk with the family, not spend time away in their minds & attention. We also wouldn't allow them to text at the table either. I truly HATE all things electronic, most kids can't seem to regulate their time or keep any type of balance.
So I encourage you, spend time with your kids & have them spend time with you. Cultivate them, otherwise you will lose their hearts. We have worked hard at it. It has been a bit of a struggle at times but we have preserved and it's been a good thing. We all enjoy each other. I believe we all find our time together as our "centering" time. The kids may not put it like that but I think it helps them be more stable. Certainly, even with our little ones, they seem to be glad to be together. It's worth it, especially in hard times, it's good to look back at the memories....it helps make us a "unit"
I don't believe that crap "it takes a village to raise a child" BALONEY! It takes a FAMILY to raise a child!! I didn't go through my awful pregnancies or our crazy adoptions for anyone else to raise these kids!! I have seen the "village" and I don't want them raising my kids!
A friend of mine put this on her FB Wall and I thought this perfectly described Jon & my parenting ideas....
When we first started out as parents, with just one child ( I can barely remember those days lol) I stayed home with Steve for almost 2 years and we just took hm everywhere with us. He was an easy kid plus I didn't want to owe any favors to have to return babysitting HAHAHAHA! Remember I've never been much of a kid person unless they are MY kids! Then when I went back to work and he started preschool, we worked our schedules around him as best we could. I'd try to get to work as early as possible & lots of time not take a lunch so I could pick him up early. Jon would go in at 12 and work till 8pm so he didn't have to take Steve until late morning. So we worked things out so he spent the most time with us and the less time in preschool. I think because we felt our time was limited with him, we spent as much time as possible with him.
We never got into Boys Scouts, or even our church's scouting program too much. We didn't do team sports things with him, he was more like us, he didn't like team sports so we didn't push it. We really focused on the three of us. Then after Sam was born, we were even more of a unit, we had to travel alot for Sam to go to different doctors and we just always took Steve with us. Even tho things were crazy for us, we invested the life we had into them.
As our family grew, we began to understand more of what we had been doing somewhat unconsciously. We then, began to consciously make sure that our family time came first, not just in our lives as parents, but also in the lives of our kids. Which meant, we purposely chose how we spent our time and we guarded it.
When a child is always involved in other things like sports, clubs, friends, whatever, their hearts can become so focused on that, to the exclusion of the most important thing which is the child's family. Up until the last 50 years or so, the family unit was honored, kids stayed close to home, they didn't have the distractions that families have today. We've sought to create that type of family Unfortunately even the church is somewhat guilty of splitting the family up, with babies going in one direction, kids in another, teens in another, woman in another, men in another....that makes me uncomfortable . We worship together as a family, that happened somewhat accidentally as I wrote in another blog. Our children's pastor went off to be a missionary to Spain & then no one else ever worked out. We began seeing the benefit of our children sitting in church and decided that was probably the best way for our family. It's worked for all of church history until the last few years when the church world decided to start splitting up the family into various age groups.
We took Sam and Steve us to Ukraine with us and my biggest regret is we didn't take Shad. He has a scholarship through Step Up For Students for our private school and we were afraid we'd be gone too long and he'd lose it, as he can only miss so many days. Now he may have lost it for this year, we hope not but we will have to wait until we get home to see what can be worked out. We could have sent Steve and Shad home when all this happened but we've learned that it is important for families to share memories, even harder memories, in order to bond. We've always traveled "as a tribe" (except for Shad staying home when we went to Ukraine) It's harder sometimes to do things, especially the more kids you have, but honestly it is worth it to invest your time in your kids. They may see the good, bad & ugly but it's reality and it's what prepares your child for life!
So our focus has always been spending time together, making memories together, even in the mundane things and the big things. We treasure our time together and think it has helped to center our older boys. We all do a few things individually, on an occasional basis but the focus stays on the family time.
We even purpose to spend time together when we are home. We make a point to eat supper together every night NO tv! We also usually watch a tv show or dvd together at night. Even while we are here, we are doing that. We bought some DVDs, a few Madea's and "In the Heat of the Night" series, so we have something to watch at night.
One thing I do regret is EVER buying any video game systems!!!! IF we were doing things over, we'd probably never would have bought any!! So if you have little kids, I'd advise you to think long and hard about it! I think it sucks the brains out of kids! After much working/talking we got it down to only ONE game system, an Xbox 360. So we don't do Gameboys or anything like that. If we go out, I want the kids to learn to sit & talk with the family, not spend time away in their minds & attention. We also wouldn't allow them to text at the table either. I truly HATE all things electronic, most kids can't seem to regulate their time or keep any type of balance.
So I encourage you, spend time with your kids & have them spend time with you. Cultivate them, otherwise you will lose their hearts. We have worked hard at it. It has been a bit of a struggle at times but we have preserved and it's been a good thing. We all enjoy each other. I believe we all find our time together as our "centering" time. The kids may not put it like that but I think it helps them be more stable. Certainly, even with our little ones, they seem to be glad to be together. It's worth it, especially in hard times, it's good to look back at the memories....it helps make us a "unit"
I don't believe that crap "it takes a village to raise a child" BALONEY! It takes a FAMILY to raise a child!! I didn't go through my awful pregnancies or our crazy adoptions for anyone else to raise these kids!! I have seen the "village" and I don't want them raising my kids!
Thursday, September 27, 2012
Clarity
Just to be clear with everyone.....
Selah is NOT on life support, she is not brain dead....she breaths 100% on her own. She does have a trach because she is not coughing like she should and could aspirate on her secretions and get pneumonia. She has a tube on her trach that gives her moisture so her lungs don't dry out. It's basically like a humidifier but more focused on her airways. She could live without it but it just makes her more comfortable. She has a feeding tube because she can't chew or swallow correctly.
We could have possibly made the decisions to withhold the trach and feeding tube BUT that goes against everything we believe in. She would have either starved to death or choked on secretions. We would not want to be responsible for her death in either of those awful ways. We realize that the ethical questions we deal with on this earth will one day be something for which we are judged by God in heaven. We had chosen BEFORE this ever happened our moral values, so there was NEVER a question of what kind of decision we would make regarding her care.
If you know what you believe, when the time comes to make decisions, you won't question what you should do. We believe LIFE is sacred. God allowed her to come back and He allowed her to live and breath on her own after the doctors had given us no hope.
We believe PRO life all the way. We believe each life is sacred. Selah has a will to live and we respect that. Because we settled in our minds many years ago what we believe BASED on the WORD of GOD, we are confident in the path that we taken.
Do we necessarily like the life Selah has now? No it is hard! But we also hate that Jon's dad is living with Alzheimer's disease that has taken so much from him. He is not the same man I met 23 years ago but we still love and cherish him. It is the same with Selah, she is not the same little girl we met just a few months ago but she is still our precious daughter and we love & cherish her. With both of them, we realize that heaven will be such a better place than this earth BUT when they go is in God's hands! While they are here we will love and cherish them.
We can't start devaluing LIFE...as if someones life is less worthy to live just because they are disabled in some way. Unfortunately the world has done this and it has crept into the church. Sure our life has just gotten 100000x more complicated and it is scary but this is our lot in life. It could happen to anyone, and to any family...accidents happen, strokes happen, disease happens, but we feel that we as a society should not devalue life.
But you might question, how much do we try and preserve life? I don't know but think of this....everyone of us is going to DIE! Yes YOU are going to die, we are all mortals...so to me it's simple, we give care to everyone. So if you thought well let's not bother with the child that has a brain injury or the adult with Alzheimer's...they are just going to die anyhow....Guess what baby Bubba (as Jon would say) YOU are going to die too.... so if you take that kind of reasoning to the end, why should any of us go on, since we are all going to die???? Why waste medical experience & expense on anyone since we are all just going to die in the end???? That is almost Darwinism..."survival of the fittest" although even the fittest die one day!
But in God's way of thinking, things are different, we are taught to care for the weak. The bible says that that we should show good to others when it is in our hands to do good. That means when we are able to do good to others and have the means, we should. Well I also take that to mean when that since we have the ability to care for our daughter, or others we should do that!
So while things are very bleak for Selah, her situation could be alot worse physically. She still needs so much prayer, she is in what is termed a persistent vegetative coma. The doctors do not expect her to improve from this point. So please pray for her to recover, we are with her all the way no matter what happens...but we pray for a miracle!
Selah is NOT on life support, she is not brain dead....she breaths 100% on her own. She does have a trach because she is not coughing like she should and could aspirate on her secretions and get pneumonia. She has a tube on her trach that gives her moisture so her lungs don't dry out. It's basically like a humidifier but more focused on her airways. She could live without it but it just makes her more comfortable. She has a feeding tube because she can't chew or swallow correctly.
We could have possibly made the decisions to withhold the trach and feeding tube BUT that goes against everything we believe in. She would have either starved to death or choked on secretions. We would not want to be responsible for her death in either of those awful ways. We realize that the ethical questions we deal with on this earth will one day be something for which we are judged by God in heaven. We had chosen BEFORE this ever happened our moral values, so there was NEVER a question of what kind of decision we would make regarding her care.
If you know what you believe, when the time comes to make decisions, you won't question what you should do. We believe LIFE is sacred. God allowed her to come back and He allowed her to live and breath on her own after the doctors had given us no hope.
We believe PRO life all the way. We believe each life is sacred. Selah has a will to live and we respect that. Because we settled in our minds many years ago what we believe BASED on the WORD of GOD, we are confident in the path that we taken.
Do we necessarily like the life Selah has now? No it is hard! But we also hate that Jon's dad is living with Alzheimer's disease that has taken so much from him. He is not the same man I met 23 years ago but we still love and cherish him. It is the same with Selah, she is not the same little girl we met just a few months ago but she is still our precious daughter and we love & cherish her. With both of them, we realize that heaven will be such a better place than this earth BUT when they go is in God's hands! While they are here we will love and cherish them.
We can't start devaluing LIFE...as if someones life is less worthy to live just because they are disabled in some way. Unfortunately the world has done this and it has crept into the church. Sure our life has just gotten 100000x more complicated and it is scary but this is our lot in life. It could happen to anyone, and to any family...accidents happen, strokes happen, disease happens, but we feel that we as a society should not devalue life.
But you might question, how much do we try and preserve life? I don't know but think of this....everyone of us is going to DIE! Yes YOU are going to die, we are all mortals...so to me it's simple, we give care to everyone. So if you thought well let's not bother with the child that has a brain injury or the adult with Alzheimer's...they are just going to die anyhow....Guess what baby Bubba (as Jon would say) YOU are going to die too.... so if you take that kind of reasoning to the end, why should any of us go on, since we are all going to die???? Why waste medical experience & expense on anyone since we are all just going to die in the end???? That is almost Darwinism..."survival of the fittest" although even the fittest die one day!
But in God's way of thinking, things are different, we are taught to care for the weak. The bible says that that we should show good to others when it is in our hands to do good. That means when we are able to do good to others and have the means, we should. Well I also take that to mean when that since we have the ability to care for our daughter, or others we should do that!
So while things are very bleak for Selah, her situation could be alot worse physically. She still needs so much prayer, she is in what is termed a persistent vegetative coma. The doctors do not expect her to improve from this point. So please pray for her to recover, we are with her all the way no matter what happens...but we pray for a miracle!
Wednesday, September 26, 2012
Six weeks.....
Six weeks ago our lives changed forever...I can't let a Wednesday pass without reliving that morning...and all the "what ifs". Funny thing is we met her on a Wednesday...we got home on a Wednesday....and this happened on a Wednesday only 19 weeks after we met her...
Today Jon was with Selah and I stayed with the kids. Sam's eye has looked a little red so we went to see Dr A. He put Sam back on a steroid drop to get rid of the redness. It was nice to be able to see him and not be over 1,000 miles away.
We still don't have a date to go home. Things are really about the same. The doctors have gone up on her meds to help with the stiffness but there is no change yet. Her blood pressures are still not completely stable....
I've been thinking about my blog. I've used it for years as basically a venting place for me and a stress reliever. Until the accident, I really didn't worry about what I wrote too much since not too many people read it but some friends and family. Now it astonishes me to see how many have read it and worries me too hahahaha! I tend to say whatever is on my mind....I've had a few folks tell me they have read the whole blog from the beginning....I so apologize to them:) Someone told me I was blunt...well that is me, I've actually used a lot of restraint lately. I'm not known for my restraint.....:)
Anyhow I do want you to know I appreciate the comments and prayers, the cards and letters...it really means alot. Every single one has helped to lift our load a little just knowing someone cared. This is the most awful thing to go through but we've seen so much love poured out on our family. It really has restored my faith in the human race. (I tend to think the worst of others unless I'm proven wrong) Thank you all again! You all's love and thoughtfulness makes me want to reach out to others even more when they go through hard times. I truly know how much it means to have kindnesses shown to us and how it encourages our hearts. Our children will never forget this time either and I believe that they will reach out to other families and individuals throughout their lives based on this experience.
I'm pretty honest with my feelings and I don't sugar coat anything despite the fact that I am from the South. The last few days I have felt like a raw nerve....sometimes I worry that I will just drop dead or explode from the emotions inside of me. Sometimes I want to talk to "somebody" a counselor or pastor who will make everything better but I know there is no special counseling that can change anything....(please don't suggest counseling, I am NOT a counselee type person LOL my minor is in pastoral counseling but I don't get any clients cause I tend to be a bit blunt. ) I've tried counseling a few times in the past and it didn't work for me. I'm from the old school, "just take it to the Lord in prayer" No one else can fix it, no one else can help me. That has always been the thing to get me through.
Alot of times people going through a hard time feel God is far away, I dont' feel like that thank God. He is very near to me, the only thing holding me together. I've felt that in other situations in the past but not now. All I can say is God has been good to us. I'm hurting but I can say that and mean it. I'm not saying it because I think by saying that "God is good" I can force His hand. I'm saying it because He is good. That truth is deep within my heart.
In the past few years, God has shown Himself to me in ways that just have been awe inspiring. It happened when I got to a point that I had to depend on God FULLY! See, I was always a hard worker and planner, I could make things happen in my life. I worked my way through college, I did it! I found the right jobs for me, I helped Jon in various ways....I I I I ....
But when Sam was born, and I had to quit work, we had a sick baby...then I had to depend on God....then as time progressed and we adopted Shad...I learned more dependence on God...then as we became pastors and went through the "school of hard knocks" and some friends forsook us, I learned more and more about God and it was a good thing, Adopting the girls and the whole thing that went along with it, taught me so much more about God's goodness...
So you see, I can't say anything but that God is good. He has been so good to me even when I was trying to do it all....and since I've learned to sit back and trust Him more, He has been even "gooder" to me!!!!
I look back at my 47 years and can't help but see God's goodness in so many many many ways, I could tell you so many stories. I've had an amazing life, more than my share of heartaches, but still an amazing life. I see God's goodness in my husband's life and our children's lives...what stories we have! God is good.....ALL the time. The circumstances might not be good but He is still good.
Right now I'm sitting my Selah's bed, she is so far away from me. With every ounce of my being I want HER back to me! Sometimes I can't breath, for the desire in me for her to come back to us. I daydream about her being healed and playing again and laughing, I literally daydream about how absolutely wonderful it would be if this had never happened and what we would be doing at home. If it's 2:30pm I think I'd be getting the little ones in to the van to go get the Boys... or if it were Saturday, we 'd be cleaning the church doing the yard...oh how I wish with all my heart that we were back in our mundane lives, out in the swamp and this had never happened! I loved my life and didn't want anything but what we had....it was perfect to me!
This new life is not the perfect life ...it hurts like hell. I've lost the twins and I thought that would just kill me but I didn't have memories with them. I didn't know their cute little ways and although it was awful, and I grieved for what I never had....this time I KNOW what I've lost and that makes it worse.
If you wonder how I could grieve for a child I've only known 19 weeks... just think if you had a newborn and how much you loved that child in just a day or a few days, that is exactly how it is when you adopt. With Selah and Sarah is was just so quick...With Sarah, I overwhelming loved her before I ever met her. She was MY girl!!!! Selah was our surprise and a bit different but before we even left the orphanage she was also MY girl! I LOVED having them and would just have those amazing crazy maternal feeling wash all over me at the craziest times. Their disabilities only made them even more special to me. We couldnt' help but think of the paths that had brought them into our lives and how God ordered our steps to become their parents. We just felt the wonder of parenthood in such special way. Just like you "ooh and awww" over your newborn, we did over these girls (and Shad too) And we had the most amazing adoption story anyone had every heard of and just knew God had ordained it all.
Then August 15th happened.....nothing is the same. She can't participate in our family life...she is not there to take out to eat or to the park, she is in the hospital, in a coma... She will always be in our family, she will always have her place and our love but we miss this funny little Ukrainian princess' smiles, babbles, attitude, I even miss her crankiness!!!! I miss dressing her up and matching everything. One day she will be home with us but even there we will have nursing and equipment, and a little girl that is far away. That is a sorrow that is so deep, only death could be worse than this... I've never thought about comas being so terrible, I guess in the past I would have thought "at least the person is still alive" and that is true, but they are so not here...and any separation hurts!!!!!
So as we walk this, we can only make it through by God's grace, there is NO OTHER way!
As I was writing, I looked over at Selah and she had a "storming" episode where she was trembling/vibrating and stiffing. These are not seizures but they are awful. I made the nurse and the doctor come in and look at her and have asked for a drug to help calm her (and me down) I turned off all the lights and quit holding her hands because it seems to make it worse. I can only imagine what her blood pressure is right now (or mine either)
So again I say my hope is in the Lord...either to deliver us out of this or to walk with us through this....we have no where else to go....
Today Jon was with Selah and I stayed with the kids. Sam's eye has looked a little red so we went to see Dr A. He put Sam back on a steroid drop to get rid of the redness. It was nice to be able to see him and not be over 1,000 miles away.
We still don't have a date to go home. Things are really about the same. The doctors have gone up on her meds to help with the stiffness but there is no change yet. Her blood pressures are still not completely stable....
I've been thinking about my blog. I've used it for years as basically a venting place for me and a stress reliever. Until the accident, I really didn't worry about what I wrote too much since not too many people read it but some friends and family. Now it astonishes me to see how many have read it and worries me too hahahaha! I tend to say whatever is on my mind....I've had a few folks tell me they have read the whole blog from the beginning....I so apologize to them:) Someone told me I was blunt...well that is me, I've actually used a lot of restraint lately. I'm not known for my restraint.....:)
Anyhow I do want you to know I appreciate the comments and prayers, the cards and letters...it really means alot. Every single one has helped to lift our load a little just knowing someone cared. This is the most awful thing to go through but we've seen so much love poured out on our family. It really has restored my faith in the human race. (I tend to think the worst of others unless I'm proven wrong) Thank you all again! You all's love and thoughtfulness makes me want to reach out to others even more when they go through hard times. I truly know how much it means to have kindnesses shown to us and how it encourages our hearts. Our children will never forget this time either and I believe that they will reach out to other families and individuals throughout their lives based on this experience.
I'm pretty honest with my feelings and I don't sugar coat anything despite the fact that I am from the South. The last few days I have felt like a raw nerve....sometimes I worry that I will just drop dead or explode from the emotions inside of me. Sometimes I want to talk to "somebody" a counselor or pastor who will make everything better but I know there is no special counseling that can change anything....(please don't suggest counseling, I am NOT a counselee type person LOL my minor is in pastoral counseling but I don't get any clients cause I tend to be a bit blunt. ) I've tried counseling a few times in the past and it didn't work for me. I'm from the old school, "just take it to the Lord in prayer" No one else can fix it, no one else can help me. That has always been the thing to get me through.
Alot of times people going through a hard time feel God is far away, I dont' feel like that thank God. He is very near to me, the only thing holding me together. I've felt that in other situations in the past but not now. All I can say is God has been good to us. I'm hurting but I can say that and mean it. I'm not saying it because I think by saying that "God is good" I can force His hand. I'm saying it because He is good. That truth is deep within my heart.
In the past few years, God has shown Himself to me in ways that just have been awe inspiring. It happened when I got to a point that I had to depend on God FULLY! See, I was always a hard worker and planner, I could make things happen in my life. I worked my way through college, I did it! I found the right jobs for me, I helped Jon in various ways....I I I I ....
But when Sam was born, and I had to quit work, we had a sick baby...then I had to depend on God....then as time progressed and we adopted Shad...I learned more dependence on God...then as we became pastors and went through the "school of hard knocks" and some friends forsook us, I learned more and more about God and it was a good thing, Adopting the girls and the whole thing that went along with it, taught me so much more about God's goodness...
So you see, I can't say anything but that God is good. He has been so good to me even when I was trying to do it all....and since I've learned to sit back and trust Him more, He has been even "gooder" to me!!!!
I look back at my 47 years and can't help but see God's goodness in so many many many ways, I could tell you so many stories. I've had an amazing life, more than my share of heartaches, but still an amazing life. I see God's goodness in my husband's life and our children's lives...what stories we have! God is good.....ALL the time. The circumstances might not be good but He is still good.
Right now I'm sitting my Selah's bed, she is so far away from me. With every ounce of my being I want HER back to me! Sometimes I can't breath, for the desire in me for her to come back to us. I daydream about her being healed and playing again and laughing, I literally daydream about how absolutely wonderful it would be if this had never happened and what we would be doing at home. If it's 2:30pm I think I'd be getting the little ones in to the van to go get the Boys... or if it were Saturday, we 'd be cleaning the church doing the yard...oh how I wish with all my heart that we were back in our mundane lives, out in the swamp and this had never happened! I loved my life and didn't want anything but what we had....it was perfect to me!
This new life is not the perfect life ...it hurts like hell. I've lost the twins and I thought that would just kill me but I didn't have memories with them. I didn't know their cute little ways and although it was awful, and I grieved for what I never had....this time I KNOW what I've lost and that makes it worse.
If you wonder how I could grieve for a child I've only known 19 weeks... just think if you had a newborn and how much you loved that child in just a day or a few days, that is exactly how it is when you adopt. With Selah and Sarah is was just so quick...With Sarah, I overwhelming loved her before I ever met her. She was MY girl!!!! Selah was our surprise and a bit different but before we even left the orphanage she was also MY girl! I LOVED having them and would just have those amazing crazy maternal feeling wash all over me at the craziest times. Their disabilities only made them even more special to me. We couldnt' help but think of the paths that had brought them into our lives and how God ordered our steps to become their parents. We just felt the wonder of parenthood in such special way. Just like you "ooh and awww" over your newborn, we did over these girls (and Shad too) And we had the most amazing adoption story anyone had every heard of and just knew God had ordained it all.
Then August 15th happened.....nothing is the same. She can't participate in our family life...she is not there to take out to eat or to the park, she is in the hospital, in a coma... She will always be in our family, she will always have her place and our love but we miss this funny little Ukrainian princess' smiles, babbles, attitude, I even miss her crankiness!!!! I miss dressing her up and matching everything. One day she will be home with us but even there we will have nursing and equipment, and a little girl that is far away. That is a sorrow that is so deep, only death could be worse than this... I've never thought about comas being so terrible, I guess in the past I would have thought "at least the person is still alive" and that is true, but they are so not here...and any separation hurts!!!!!
So as we walk this, we can only make it through by God's grace, there is NO OTHER way!
As I was writing, I looked over at Selah and she had a "storming" episode where she was trembling/vibrating and stiffing. These are not seizures but they are awful. I made the nurse and the doctor come in and look at her and have asked for a drug to help calm her (and me down) I turned off all the lights and quit holding her hands because it seems to make it worse. I can only imagine what her blood pressure is right now (or mine either)
So again I say my hope is in the Lord...either to deliver us out of this or to walk with us through this....we have no where else to go....
Tuesday, September 25, 2012
Hard Day
My FB status.....
Selah update.....today was a hard day. Her spacicity (the stiffness in her limbs) were awful today. Her right leg at the knee is so tight that it looks like the knee is bending backwards. All I did today was cry. Her left arm is so stiff, it sticks up like she is doing a Nazi style salute. She had NO responses today. They have worked on this is many ways since day one, braces, splints, meds, therapy...nothing is helping her. The meds have been upped today in hopes that it will help her relax some. Her blood pressure has been ok but still not as stable as needed for her to be transferred. We don't know when she will be transferred now but think maybe next week. Who knows....I am very sad and just overwhelmed today.
Some days are just a big kick in the stomach. This was one of those days. I truly hate crying in front of anyone and all I could do today was to cry. I HATE that my daughter is lying in a bed, not able to move her limbs, being fed by a tube, unable to enjoy anything....
To top it off, the other little girl who was going to have the same eye surgery today as Sam has had...couldn't have it once they got in. Her eye was in worst shape than previously thought....so sorry for the family & her. It made me and Jon both cry.
So I have no spiritual words tonight, I'm just a beat down mom who is still trusting the God of the Universe, still looking forward to heaven, because in many ways there is not much to look forward to on this earth. I just want our sweet life back with our five kids running (or in Sarah's case crawling) around getting in to everything, keeping me busy...... I'm tired of the hospital life. I want these past 6 weeks (tomorrow) to be a bad dream that I will wake up from soon. But that life is gone without a miracle and tonight it is hard to believe for one.
Please keep praying that God will touch her. She needs a mighty touch to recover from this.
Selah update.....today was a hard day. Her spacicity (the stiffness in her limbs) were awful today. Her right leg at the knee is so tight that it looks like the knee is bending backwards. All I did today was cry. Her left arm is so stiff, it sticks up like she is doing a Nazi style salute. She had NO responses today. They have worked on this is many ways since day one, braces, splints, meds, therapy...nothing is helping her. The meds have been upped today in hopes that it will help her relax some. Her blood pressure has been ok but still not as stable as needed for her to be transferred. We don't know when she will be transferred now but think maybe next week. Who knows....I am very sad and just overwhelmed today.
Some days are just a big kick in the stomach. This was one of those days. I truly hate crying in front of anyone and all I could do today was to cry. I HATE that my daughter is lying in a bed, not able to move her limbs, being fed by a tube, unable to enjoy anything....
To top it off, the other little girl who was going to have the same eye surgery today as Sam has had...couldn't have it once they got in. Her eye was in worst shape than previously thought....so sorry for the family & her. It made me and Jon both cry.
So I have no spiritual words tonight, I'm just a beat down mom who is still trusting the God of the Universe, still looking forward to heaven, because in many ways there is not much to look forward to on this earth. I just want our sweet life back with our five kids running (or in Sarah's case crawling) around getting in to everything, keeping me busy...... I'm tired of the hospital life. I want these past 6 weeks (tomorrow) to be a bad dream that I will wake up from soon. But that life is gone without a miracle and tonight it is hard to believe for one.
Please keep praying that God will touch her. She needs a mighty touch to recover from this.
Quick Update
Today was a quiet day for Selah. Jon did some training with her trach. It doesn't look like we will be leaving in the next few days as her blood pressure spiked or 'stormed" and went high several times. The doctors want to see this completely stable before she is flown back to Florida. We are ok with that as we trust the medical care here. They seem to really "turn over every stone" trying to find what is wrong and why and how to fix it! So we are confident that they will adjust her medicine in a way to keep her BP more stable. They certainly have been working on it. They believe everything points to the reason for the high BPs is because of the brain damage only. They do not feel there is any other physical reason.
I took the boys to get hair cuts today, they were looking pretty wooly:) Steve found a dvd of MADEA that we didn't have so that is what we watched tonight and I got some real laughs going! "Madea goes to jail ~ the play" it was different than the movie (it was a real play) we got the movie one. I have all of Madea's movies now I think! It was good and had some good points and certainly some good laughs. If you don't know Madea is my some what alter ego. I appreciate Tyler Perry's work and how he always brings in a redeemative message as well as a prayer of salvation.
I did LOADS of laundry today, really feeling at home LOL. I actually had everything including our towels and sheets cleaned for about 10 minutes!
Meet a sweet family who are here for their daughter to get a corneal implant tomorrow morning. Their little one has faced alot of physical issues since her birth. Pray that she will have sucess and pray for Dr A and Dr Chung as they work on this sweet little girl. She could see for a short time after receiving corneal transplants but her eyes soon rejected them. She was sad and let her family know that she wanted to see!!! Please pray that this surgery will work for her and she will be able to see again! Her mom and dad are very anixous! You can just see the love they have for her! Thank you for praying for this dear little one! Put yourself in the parents' shoes and pray like that was your little bitty girl who wanted to see again.....
We see so much while we are staying at the RMH. Some kids are here for just routine checkups and stay a few days, others have serious surgeries, or are born prematurely, or have accidents, or cancer ....it really makes us realize that we all go through trouble in this life! We often find ourselves in rather deep conversations with families, some who are quite bitter about what their child has had to face. We can truly speak from expirence when we talk with parents, even if our expirence is somewhat different but we've expirenced alot... Actually while you are praying for us, remember all the families here, they are all facing some kind of storm and need God to be with them! Thanks!
I took the boys to get hair cuts today, they were looking pretty wooly:) Steve found a dvd of MADEA that we didn't have so that is what we watched tonight and I got some real laughs going! "Madea goes to jail ~ the play" it was different than the movie (it was a real play) we got the movie one. I have all of Madea's movies now I think! It was good and had some good points and certainly some good laughs. If you don't know Madea is my some what alter ego. I appreciate Tyler Perry's work and how he always brings in a redeemative message as well as a prayer of salvation.
I did LOADS of laundry today, really feeling at home LOL. I actually had everything including our towels and sheets cleaned for about 10 minutes!
Meet a sweet family who are here for their daughter to get a corneal implant tomorrow morning. Their little one has faced alot of physical issues since her birth. Pray that she will have sucess and pray for Dr A and Dr Chung as they work on this sweet little girl. She could see for a short time after receiving corneal transplants but her eyes soon rejected them. She was sad and let her family know that she wanted to see!!! Please pray that this surgery will work for her and she will be able to see again! Her mom and dad are very anixous! You can just see the love they have for her! Thank you for praying for this dear little one! Put yourself in the parents' shoes and pray like that was your little bitty girl who wanted to see again.....
We see so much while we are staying at the RMH. Some kids are here for just routine checkups and stay a few days, others have serious surgeries, or are born prematurely, or have accidents, or cancer ....it really makes us realize that we all go through trouble in this life! We often find ourselves in rather deep conversations with families, some who are quite bitter about what their child has had to face. We can truly speak from expirence when we talk with parents, even if our expirence is somewhat different but we've expirenced alot... Actually while you are praying for us, remember all the families here, they are all facing some kind of storm and need God to be with them! Thanks!
Monday, September 24, 2012
Sam's eye surgery video
http://www.5min.com/Video/Helping-Blind-Kids-See-175537507
If you are new to my blog, you might like to see this video of Sam's original corneal implant surgery. the vido actually shows some of his surgery (they actually gave me the video that had ALL his surgery on it too YUCK!)
He was so cute and little! (not that he is too big now hahaha!) But the last scene were him walks to the toy was unscripted, his eye patch had just came off and he could SEE!!! The looks on our faces were FOR REAL! We had never seen him come across the room for anything. He couldn't see if something was not right in front of him. What a wonderful blessing Dr A has been to our family!!!!
So that is why we come here!!!!
Sunday, September 23, 2012
Update on Selah!!!
This is hard to explain....Selah has responded before to her cornea being touched BUT not to a hand moved in front of her face like it was going to hit her eye...well today she did! I noticed she was seeming to blink when the nurse was near so I waved my hand towards her and she blinked every time. It is a brain stem response that is a little higher up on the brain stem. I did it over and over and she responded every time! If I did it more than 4 times back to back, her response would start slowing down, probably because she was getting used to it. This is a GOOD sign!!!!!!! On the other hand she is still having MAJOR spikes in her blood pressure. Please continue to pray for more responses & low/normal blood pressure! This may put off our return to Florida date, which would be ok to us cause we so trust the medical care here!
We are really excited about thisnew movement!!! This seems to show there maybe some new brain stem recovery!! I'm looking forward to us talking to the doctors tomorrow about it. We want to ask again to have her re-evaluated for rehab. We were told she wouldn't benefit from it since she had such little responses. Maybe now they will reconsider, she has done more since when she was evaluated.
We had a great day, Jon preached at Williamston Christian community church where some of our "snowbirds" go in the summer. Ch 13 (the ABC station) videotaped his whole sermon! A small clip was shown on Ch 13 tonight. They picked out some great parts where Jon stressed the faithfulness of God. You never know who is watching and what is going on in their lives. If nothing else, maybe it can encourage someone to hang on to God during their trials!
Then we went out with a group of friends to Burnap's Farm Market and ate outside...beautiful but cold (to us) day! Then later we met some of our old friends who we worked with in NYC years ago and went out to supper together. What a great day and the best part was seeing more response from Selah! Please pray it continues!
She had the cutest, sweetest nurse who painted her toe nails with pink sparkly paint! How cute and thoughtful:) It just made me smile that she did that for Selah!!! You could just tell the nurse loves her job and cares about her! I know I say this all the time but I am so impressed with Strong's Hospital. We are so thankful for the GREAT care she has received here. She seems to be recovering form her dental surgery, although her mouth seemed a bit bloody tonight. There was concern that she might have "pink eye" and she has been put on eye drops to make sure if she does, it's not contagious once she was on antibiotics for 24 hours. We got a bit freaked out because of Sam's eyes!!!! We've been scrubbing out hands!
So please keep praying!!!!! Thank you!
Saturday, September 22, 2012
Want to make me happy?
I have a good friend who has been in the process of adopting for sometime. They were working hard to adopt a little boy with HIV & then his mom came back into the picture and they were unable to finish the adoption. Then they were committed to going to get a beautiful little girl with HIV and a family in the little girl's country stepped forward for her. Since then they have pressed forward despite their heartache, knowing that God had placed this desire in their hearts to change a child's life forever! I know the heartache they have gone through and I really want to bless them. They will be leaving soon for our children's country to adopt a child. They are really stepping out in faith, not 100% sure of what child they will come home with but they know it will be the child God has for them. The child they adopt will be Special Needs, with medical needs.
So in support of Selah and Sarah would you give to their Family Sponsorship Fund? They need around $2000 to bridge the gap, they've paid all their fees up to date out of their pocket, living frugally...You can use either of the below web addresses to give through. I could open both. The top one has a cute little blurb that my friend wrote that will make you smile.
This family will give this a child a wonderful happy and probably a bit spoiled life:) Thank you for being a part of a miracle!!!!!
http://reecesrainbow.org/22613/sponsorcooper
http://static.reecesrainbow.org/donation-box/fsp-CooperOwen.html
So in support of Selah and Sarah would you give to their Family Sponsorship Fund? They need around $2000 to bridge the gap, they've paid all their fees up to date out of their pocket, living frugally...You can use either of the below web addresses to give through. I could open both. The top one has a cute little blurb that my friend wrote that will make you smile.
This family will give this a child a wonderful happy and probably a bit spoiled life:) Thank you for being a part of a miracle!!!!!
http://reecesrainbow.org/22613/sponsorcooper
http://static.reecesrainbow.org/donation-box/fsp-CooperOwen.html
My favorite picture...
This has to be one of my favorite pictures....
It's Sam, Jon and Selah in the apartment in Kiev Ukraine after we'd traveled all night on a train. Selah was so excited she didn't sleep all night!
Then she fell asleep on daddy's shoulder holding his hands!!!!
Strong's Muesum pictures!!!
The kids outside the Strong Muesum
Yes Sam is resting on my lap so I can rub his back and he can look at the lights at the same time
Sarah's first ride on a merry go round. she is actually really excited:)
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